After Almost 2 Years of Keto

It's been a very long time since I last wrote; I just looked at my last post and couldn't believe it was written almost 2 years ago! The old saying, "no news is good news" has definitely been true in our case.

Oliver has been on the ketogenic diet for almost 2 years now. He has been seizure free for 13 months and continues to be completely off seizure medication! We have had to tweak the diet several times to get it to work this well, especially six months into the diet. Oliver was having a hard winter- he was sick almost constantly, which would throw his body into acidosis, making it very hard to get well. At that point, Jadey and I made the decision to transition him to modified Atkins (MAD), which is still a ketogenic diet but does not require all the weighing and measuring that the true ketogenic diet requires. MAD traditionally does not provide as high of a level of ketosis that the 4:1 diet provides, but we were hoping it would prevent some of the acidosis. MAD has worked just as well as the 4:1 diet for controlling seizures, which is spectacular because MAD is easier to implement. I feel lucky that the diet has worked so well for Oliver. It works for many people, but there are others that have not had success with the diet. I'm extremely thankful that we were connected enough to the right organizations to find the diet, brave enough to try it, and lucky enough to have it work so well.

Oliver's learning has continued to expand at an astounding rate. A little over a year ago, we considered Oliver to be essentially nonverbal- he had about 4-6 words. Now, he uses complete sentences and has thousands of words. He is still hard to understand, but his speech continues to improve as well. The ketogenic diet combined with the lack of seizures have allowed him to benefit tremendously from speech therapy, OT, preschool, and the teaching we give him at home. We are at a wonderful point in life right now, and I am thankful.

Of course, we had a baby not so long ago too! Ari is 10 months old, and he could not be more amazing. I was worried about having him- worried there would not be enough time for all of Oliver's needs, worried that we wouldn't be able to give Ari all the attention that he deserves, and worried about how another child would affect our family dynamic. However, having Ari has been excellent for all of us. Oliver loves him- Ari is the only child he talks to regularly. Oliver sometimes says a few words to other children, but he tends to ignore them. However, he talks to Ari constantly- "Ari look, a shiny lake!" "Ari did you see flag house?" "See it, Ari." "Ari, do you wanna go to Target?" He is concerned for Ari's well-being- when Ari is crying, he tells me, "Mama go get Ari." Ari has been a great addition to our family; he makes our family much better. There are no signs of tuberous sclerosis or developmental problems in Ari yet, so we are hopeful.

Let's hope another 2 years pass before I feel the need to write again!

Update on the New Diet

Oliver started the ketogenic diet the last week in September to try for seizure control that his medications were failing to provide.  I want to give everyone a quick update as to how things are going with the diet.  Jadey and I have been pretty close-mouthed about telling people how the diet is working; for all his other med switches, we have felt at first that the seizures seem to be fewer, or less severe.  After a few days, though, it becomes apparent that nothing has changed, and we are disappointed.  We decided not to make any quick judgments about the diet and to be very vague when talking with people about its effects. 

Here's a brief rundown of what the diet entails.  It's basically a very high fat diet, with limited carbs and protein.  Oliver is on a 4:1 ratio, which means he eats 4 grams of fat to 1 gram of carb and protein.  His meals are planned on an Excel spreadsheet that pulls in nutrition information for the foods.  We calculate the meals to make sure they are a perfect 4:1 ratio with the right amount of calories, and we weigh them out on a gram scale.  Jadey usually does the weighing, and he spends 1 to 1.5 hours every night portioning out Oliver's 5 meals for the next day.  There are several of Ollie's favorite foods that he just can't have anymore since they have too many carbs.  Things like cereal, pasta, milk, and bread, which were once his favorites.  He can still have small amounts of fruits and vegetables calculated into his diet though, which are also some of his favorite foods.  The specialists aren't exactly sure how the diet works to control seizures.  They know that the diet forces the body to burn fat rather than carbohydrates, which produces ketones in the bloodstream.  They think the ketones are absorbed into the brain and change the chemistry of the brain somehow, thus providing seizure control.  For children with hard-to-control epilepsy, the diet can work very well.  It's usually only offered to children who have failed several medications since it is so difficult to implement. 

Although the act of making a statement about how the diet is working is causing me to cringe... here are a few things I do feel semi-comfortable saying about how the diet is working for Oliver so far.

First, Oliver IS having fewer seizures.  He used to have up to 5 every day, that we saw; the seizures were very easy to miss, so we were confident he was probably having more.  Nowadays, we will see 1 seizure every couple of days.  It's been this way pretty much since week 2 of the diet, so I do feel confident that he is having fewer seizures.  However....  There can be a honeymoon period for the diet, which means that the diet could stop working and seizures could come back anytime from 3 months to 1 year later.  I am realizing that this diet could work long-term, or it could stop working anytime, but for now, Oliver is having fewer seizures.  HURRAY!!!

Also, Oliver is learning faster and doing more than he was before the diet.  Here's an example.  Ollie's OT has been working on stacking blocks for months and months, and she wrote a goal for him to learn to stack 2 blocks.  A couple of weeks after starting the diet, Oliver stacked 5 blocks without any trouble, and the other day he stacked 9!!  This is pretty amazing-- he tends to be a really slow learner.  He would take hours to learn something another kid would learn in half a minute, and then the next day he would have to re-learn it.  That's not really the case anymore.  He's also started singing-- he can sing "Twinkle Twinkle Little Star" and "This Old Man" if he's in the mood.  He can't talk yet, but he can sing!  His keto team at the hospital said that increased attention and alertness can be a so-called side-effect of the diet.  It's been very exciting to watch him learn and develop over this past month!

At Ollie's last neurology appointment, we agreed to start weaning his current seizure medication, vigabatrin.  I can't wait for him to be off vigabatrin, which has some really terrible side effects.  However, although getting him off vigabatrin was a big goal of mine when going on the diet, he definitely won't be medication free on the diet.  He has so many things to take, including a medication to treat acidosis, calcium and vitamin supplements, miralax, and the newest one- an enzyme to help him digest fat.  I haven't had to give him this many pills EVER, not even when we were on 3 different seizure meds at once!

This diet has given Jadey and me something we really needed- hope.  The more I learn about it, the happier I am that Ollie is on it.  When reading about the diet, I discovered a list of conditions that have been found to respond better to the diet, and tuberous sclerosis was on that list.  Five or 6 diseases actually respond better to the diet than other causes of hard-to-control epilepsy, and TS is one of them.  It's kind of mind-blowing, and it makes me really excited. 

So if anyone is willing to send prayers or positive vibes our way, we would be grateful.  Mostly we want the diet to work; the optimal would be for 100% seizure control, although the odds are against us there.  We really want this fun side-effect of improved learning and attention to continue.  Also for Jadey and me, that we can continue to implement the diet, since it is very difficult and time consuming.  Thanks to all for your support!

The Latest

It’s finally time for an update!  I have taken a break from this blog for quite awhile now, but now seems like a good time to re-inform everyone on how Oliver is doing.  

Since his gigantic, horrible status seizure that happened back in March, a few things have changed.  He went to see the neurologist a week after the seizure for a regular appointment, and she basically said that she wasn’t surprised that he had such a horrible seizure since 1) his brain wave patterns are so abnormal, and 2) he had WAAAAAY outgrown his dose of Lamictal.  When he went off Topamax, his appetite increased pretty substantially (a side effect of Topamax is appetite suppression), and he gained a bunch of weight.  She sent us home with a higher dose of Lamictal.  I do have to say that it was a little unnerving that Oliver’s potentially life-threatening seizure wasn’t more concerning to the neurologists.  We titrated up the Lamictal again with no problem, except for worry that he would have a fever that would spike another massive seizure before we were up to the full dose.  

About a month ago, we noticed Oliver having some strange episodes again.  He gets a semi-strange expression on his face, and then his mouth twitches, like a one-sided smile.  His breathing sounds strange, almost as if he is snoring, and sometimes his hands or face tremble slightly.  These episodes usually last for only a few seconds.  He has been having these episodes increasingly often; before, he would have a couple in a week, and now he is having several per day.  I emailed the doctor 2 weeks ago; she increased his Lamictal again, but it isn’t helping.  It seems like a new type of seizure that the Lamictal doesn’t control.  I emailed the neurologist again a few days ago that the increased dose hasn’t helped and that the seizures are getting worse.  I just got a message from a nurse in the neurology department that said she wanted to talk to me about the new treatment plan for Oliver.  It's frustrating-- my phone didn't ring, so I didn't know they even called.  Now it's too late-- I can't call back until tomorrow...  Argh!  Jadey wants to start Oliver on Keppra, a new medication, in addition to keeping him on Lamictal.  I’m not sure what I want to do; the Keppra idea sounds like a good possibility, but I want to see what thoughts the neurologist has, too.  Part of me wants to take him in for another EEG, but another part of me is still traumatized by our last experiences at the hospital and wants to stay away.  I wish good answers existed for the questions we have. 

Developmentally, Oliver is doing ok.  He is still really delayed in all areas, but he is making progress and is learning new things.  He is still using a picture communication system to request things, which is going really well!  He still can’t talk, although he does make some vocalizations.  He is constantly learning to understand new words and phrases, which is really fun for the speech therapist side of me to see!  He still has a lot of trouble using his hands, and he has some social delays as well.  Jadey and I went back and forth about taking him in for an autism evaluation, but we decided to wait for now.  Oliver already has a diagnosis that will qualify him for every service he needs, and he has a lot of strengths that may not fit so well with a diagnosis of autism.  I am afraid that if we do get him diagnosed, teachers and therapists may overlook those areas of strength and only see the diagnosis.  I think when he is around 6 or 7 we will look into getting some thorough diagnostic testing.

We are gearing up for the tuberous sclerosis fundraising walk, which is coming up in less than 2 weeks!  Jadey and I would love for anyone and everyone to come out and join us.  We also appreciate any donations on our team’s fundraising page, although please don’t feel pressured to donate!  Here is a link to our team page:

http://my.e2rm.com/teamPage.aspx?teamID=271107&langPref=en-CA&Referrer=http%3a%2f%2fecommunity.tsalliance.org%2fPage.aspx%3fpid%3d542%26srcid%3d544

If you are interested in donating to medical research, though, TS research is a great option-- this research also provides knowledge into treatment for several other diseases, including autism, cancer, and diabetes.  It’s pretty amazing.  I want to do a blog post about the importance of medical research one of these days/months/years…  It’s unbelievable how many more treatment options there are now that weren’t around 20 or 30 years ago, and it’s all thanks to medical research.

That’s pretty much our everyday life related to TS!  There are always strange-looking seizure events to question, hours of therapy to attend every week, doctor appointments, and new skills for Oliver to learn.  Life is anything but leisurely!

UPDATE: I just talked to the nurse this morning, and they want to increase his Lamictal again...  I'm not all that excited about this option.  It looks like it will be another 2 to 3 weeks of this until we know if this new change is or isn't going to help.

October, 2010 and 2011

October 10-14, 2010 is what I consider Oliver’s diagnosis week.  October 10^th of last year was when we realized that Oliver was having seizures, and he got his diagnosis of tuberous sclerosis on the 14^th.  For the 1-year anniversary of his diagnosis, we spent the week in the hospital having a 5-day EEG study.

10/10/2011

7:45am

Well, it has been a rough morning. Jadey was up at 6:15 after getting about 1 ½ hours of sleep, getting ready to take Oliver to the hospital. Jadey’s at the hospital checking in right now, and I am at work. Jadey is with Ollie today, tonight, and tomorrow while I work. I will take over from there and be with Oliver the rest of the week while Jadey works. It’s a nice idea in theory since it minimizes the time off from work that we have to take, but in practice, I can already tell it is going to be exhausting. Let’s hope this EEG study gives us some worthwhile information.

3:00pm

Jadey tells me he and Oliver are doing alright. Jadey says the room they are in has a computer monitor with the camera attached to it, so not as nice as the built-in camera in the ceiling that I had when we were there overnight. I guess the nurses come in every 40 minutes or so to move the camera to try to get Oliver on it as much as possible.  My guess is that the doctors are monitoring him pretty closely, hoping to see some seizures so they won’t have to decrease meds. No seizures so far though. Of course there aren’t any seizures when we actually want them.  Jadey is minimizing Oliver’s sleep to hopefully cause seizures, so Ollie is cranky and tired.  It’s a strange thing to actually want seizures to happen.

10/10/2010

They say the not knowing is the worst part.  Sometimes that’s definitely true.  Initially, the discovery that Oliver was having seizures was a huge relief.  Our lives were characterized by uncertainty, groundless hope, and despair.  When Jadey found information about infantile spasms on an epilepsy website, we were actually happy.  We could finally pinpoint what the problem was, and with that knowledge, we could find a solution.  We watched videos of children having infantile spasms on youtube, which only made us more certain.  Putting a name to those strange, jerky movements made us hate them even more.  October 10, 2010 was a Sunday, so there wasn’t much we could do in the way of scheduling appointments until the next day; we planned and discussed our next course of action.  We took lots of videos of Oliver having the spasms so we would have something to show the doctors in the hopes that they would take us seriously.

10/11/2011

8:00am

Jadey says they are doing just fine.  He says Oliver had what looked like a seizure last night while falling asleep.  Ollie was almost asleep, and then he woke up and stared around a little, then played with his toys for awhile before falling back asleep. 

2:30pm

I get a message from Jadey saying to call him immediately.  Oh great.  He says that a neurologist came in, told him that the episode the previous night was not a seizure, and told him that the tubers on the right side of Oliver’s brain seem to be more active than those on the left side (opposite of what they saw in the last EEG).  Then, he said that we would probably be discharged today.  Jadey asked the doctor about the plan to go off Topamax in order to see more seizures, and the doctor said that yes, it is probably a good idea to go off Topamax since it can cause word finding problems.  Not at all what Jadey was asking!  I am kinda freaking out since this doctor seems to have no clue what is going on with Oliver’s case or about the reason we are here.  If we were to go home early, everything we have done so far would be a total waste.  Our time off work, Jadey’s stress dealing with the lack of sleep and trying to keep Oliver awake and happy, the money we would have to pay for the 2 days of EEG, everything.  We have NO information yet!  I’m sure we would end up having to schedule another 5-day EEG as soon as they can fit us in, which would be in a couple of months.  I frantically call and leave a message for our neurologist and send her a desperate email.  She gets back to me right away and tells me that the other neurologist contacted her and that we are still planning on doing the 5 days.  Whew!!  That was close!  I guess it was crazy for me to assume that the doctors that would be dealing with us during this big, important 5-day hospital stay would have a clue about what was going on… 

10/11/2010

Monday morning.  Jadey has the day off, and I am at work at 8:00am.  As soon as the neurology appointment center at Children’s opens, I am on the phone.  I ask for our late-November appointment to be moved up due to emergency circumstances, and I get transferred to the urgent scheduler.  He says he can’t schedule an urgent appointment without a request from a pediatrician since Oliver would be a new patient to the hospital. 

Meanwhile, Jadey is calling our pediatrician’s office, trying to get a referral.  When he is finally able to talk to the doctor, the doctor tells him that he can try to get our appointment moved up, but he doesn’t think it will work.  He says he has tried to get urgent appointments scheduled at Children’s, and his attempts have always been unsuccessful.  Great.  Thanks for nothing, buddy.  He tells us we should go to Rocky Mountain Hospital for Children instead; he is friends with one of the neurologists there, who he said was excellent.  I call Rocky Mountain, and they are able to schedule us on Wednesday the 13^th, although it isn’t with the neurologist our pediatrician recommended.  Finally, a plan! 

10/12/2011

9:15am

The PA just came in and had more questions about the seizures.  She told me they are probably not going to decrease Oliver’s meds during the study, and the doctor from yesterday who told us we were getting discharged is reviewing the EEG from last night.  He will come in sometime soon and go over it with me.  I’m kind of worried, not really sure what is going to happen.  I really hope we get some good information from this study, and now I am not sure that is going to happen.

Apparently, Oliver’s EEG shows that he isn’t having any seizures.  The doctor says that seizure activity often decreases when kids come in for long stays since they are much less mobile.  This totally makes sense, because Oliver is constantly on the move at home.  Here in the hospital, he is a lot more willing to just hang out in his crib or with me, probably because he is so tired from being made to stay awake.  Decreased physical activity equates to decreased seizure activity.

I spend the day hanging out with Oliver, playing with him and trying to keep him awake.  It is NO FUN keeping an exhausted baby awake.  I keep him awake as long as I can, and then when he is too exhausted to stay awake, I let him sleep.  Then, 15 minutes later, I wake him back up, and he cries and cries.  Poor little bear.  Ollie and I have some guests today during the day and in the evening, so nice. 

10/12/2010

It is Tuesday; Jadey and I are both working, inwardly twiddling our thumbs until our neurology appointment the following day.  Jadey requests Wednesday off at work so he can come to the appointment.  I spend every free minute at work researching infantile spasms online.  I find out that after diagnosing the spasms with a video EEG, they will want to find out the cause, which could be any number of things.  Brain bleeds, malformations, injuries; all these and more can cause infantile spasms.  This is the first time I read the words “tuberous sclerosis”.  I find out that it is one of the worse causes of infantile spasms; severe developmental delays and intractable epilepsy usually follow the spasms.  I also discover that tuberous sclerosis is a genetic disease, which puts my mind at ease.  People with genetic diseases have a “different” look, and Oliver is a very normal-looking, adorable little boy.  Also, no one on either side of our families has anything even remotely resembling tuberous sclerosis.  I am sure Oliver definitely does not have a genetic disease.  I find out that the best developmental outcome occurs when the spasms are idiopathic, when there is no apparent reason they are happening.  I set my mind on Oliver’s infantile spasms being of the idiopathic variety.  After work, we find the best videos that we have taken of Oliver’s spasms and prepare to fight to get help for him.  I look up the neurologist we are going to be seeing as well as the one the pediatrician recommended.  Turns out, the one who will be seeing Oliver is the epilepsy specialist at the hospital, and the one the pediatrician recommended specializes in sleep disorders.  Wow, thanks for nothing yet again, Dr. B.

10/13/2011

Today was a long day for me.  I hadn’t been too stir-crazy yet, mostly probably because I was just happy to be at the hospital with my baby rather than at work.  Today, my parents were coming, and I was looking forward to having something to break up the monotony of the hospital stay.  The lack of sleep was starting to tell on me, too.  The nurses were really nice all week about coming in to offer me some time out of the room.  Although today when I actually told them I would like to get out of the room for a few minutes, no one turned up for about an hour and a half, only after I called them again to ask if they were coming.  Today’s nurse was not very good about checking in.  I only saw her a couple of times all day.  It was also really annoying that they had to come check his blood pressure and heart rate all day, too.  He hated it, so he would cry, so his readings would come back too high, so 30 minutes later, they would be back to try again.  ARGH!!  His blood pressure is FINE.  It’s his BRAIN that’s the problem here.  One funny thing happened today though.  Oliver was hooked up to all these wires with a little backpack, and he would march back and forth across the room all day (the nurses had a nightmare of a time keeping him on camera J).  The more he marched, the more the cords would get twisted.  They got so twisted that he could barely even walk across the room anymore.  That was when I noticed- he was only turning right!  My little Derek Zoolander couldn’t turn left!  Hilarious! 

My parents came in to town tonight to help us out at the hospital and afterward.  It was really nice to see them.  I was going to go out with Jadey to get pizza and get away from the hospital while my parents watched Oliver.  Even though it was time for his meds, I figured my mom could take care of it since she had done it this past summer when they watched him for a week and a half.  Last-minute though, I decided to stay and give him his meds myself.  It was a good thing I did, too.  They sent in his medicine, and I noticed that there was only 1 pill of Topamax rather than 2.  I called to have the nurse come in to bring us the rest of his medicine.  45 minutes later, she came breezing in, and I told her about the missing pill.  That was when she said, “Oh, didn’t they tell you?  They decided to decrease his meds tonight.”  So I pretty much freaked out.  After all this talk about decreasing his meds during the study, and them deciding not to, the night before we are going to go home, they decide to go ahead with it without even telling us???  What does this mean??  Are we not going home tomorrow as planned??  Are they going to send us home tomorrow anyway, and then he will have seizures at home because of the reduced doses?  What is going on here, and why isn’t anyone communicating with us?  It was awful.  And on top of it all, Oliver wouldn’t take his medicine because he was too cranky and tired to want to eat.  I was so stressed out, I decided that he would just have to miss his dose for tonight.  I couldn’t handle forcing Oliver to do things that he didn’t want to do any more.  Well, that of course wasn’t ok with the nurses, so they came in later that night, woke Oliver up, and forced his meds down his throat while he screamed.  It was a mess.  What a terrible night.

10/13/2010

Finally, the appointment day has arrived!  We arrive in plenty of time and find the office with no trouble, thanks to the directions that we get from a hospital worker who turns out to be the CEO of the hospital. J  The doctor we are seeing is so wonderful.  He listens to our description, watches the video, and within a couple seconds immediately knows that Oliver is indeed having infantile spasms.  He explains to us very well, knowledgeably, and clearly, everything we already knew from our online research.  Finally, a doctor that believes us and actually knows what he is talking about!  The neurologist knew from looking at our paperwork that I worked at Children’s, and he offers to transfer us over there if we prefer.  Which is really nice of him since his hospital could have handled it just fine.  So over to Children’s we go, and all it took was a phone call.  They hook Oliver up right away for an overnight EEG, and I camp out with him in the hospital.  What a feeling of relief, to finally be on the right track.

10/14/11

I woke up not knowing what was going to happen.  I didn’t know if we were, in fact, going home today as planned.  The nurse brought in Oliver’s meds, which were the normal amount.  Apparently, they had just decided to decrease the evening dose and were sending us home with a lower dose of Topamax.  Information that would have been helpful to me YESTERDAY.  And yes, we were going home.  Mom came and helped me pack up and haul everything out.  What an awful day yesterday was.  I couldn’t wait to get home.

10/14/10

The EEG of course confirms that Oliver is having infantile spasms.  It also shows that he is having complex partial seizures, which we didn’t know.  The doctors go over our treatment options, which differ based on the cause of the seizures, and they schedule an MRI for later that morning.  Which in my mind, of course, is going to rule out brain bleeds, malformations, and that weird genetic disease.  I am really happy, just relieved that we are doing something and are on the right track.  Jadey had gone home Wednesday night since he was planning to work on Thursday (today), and while I am waiting for Oliver to get done with the MRI, he calls and says he is on his way over.  Apparently, he is having a hard time focusing at work… I can’t imagine why.. 

It ended up being a good thing that Jadey came, because when I got paged that Oliver was done with the MRI and would be waking up from the anesthesia, it wasn’t a nurse who met me.  It was the neurologist herself, the one who would end up being Oliver’s main neurologist.  She told me that they found several brain tubers and that it was, indeed, tuberous sclerosis.  That was when everything about our hospital stay changed from being a relief to being really serious and really bad.  Our worst-case scenario had become reality. 

When I went in to see Oliver as he was waking up from the anesthesia, minutes after learning his diagnosis, I remember being standoff-ish toward him at first, a little leery of caring for such a sick baby.  For that brief time, he didn’t seem like my baby anymore.  My baby was a HEALTHY baby, not a sick, broken one with a body full of tumors. 

It’s strange how memory works.  Some of my post-MRI memories are really clear, and some things are foggy.  I remember with perfect precision which table I sat at with the neurologist when she told me about his diagnosis.  Since that day, I have walked past that table several times, and every time I remember.  I didn’t cry through her discussion of what seizure med we would start him on and when we would get discharged from the hospital.  I didn’t cry until the end of the conversation, until she said she was really sorry.  I don’t really remember much of getting Oliver back into the hospital room, or of the other tests they did later that day to check for other tubers throughout his body.  I remember that I was the one to tell Jadey, but I don’t really remember how he reacted.  I sort of remember that there were a lot of doctors and nurses coming and telling us things, but I don’t remember what they told us.  I don’t remember going home or what we did once we got there.

What a life-changing diagnosis, tuberous sclerosis.

EEGs

A lot has been happening these past few weeks for us, so here’s an update.  Oliver has some motor problems that the neurologists think may be due to subclinical seizures.  He has been walking for 5 or 6 months now, and he is still really wobbly and appears dizzy.  He actually looks like he has ataxia, which is a motor problem caused by damage to the cerebellum.  According to his MRI, Oliver’s cerebellum is just fine though- no tubers are on it.  The neurologists are concerned since they can’t figure out why he is so ataxic, and they think it may be due to seizures that are hard to notice. 

Oliver was in the hospital overnight for a video EEG at the end of August to see if they could see anything in his brain wave pattern that could possibly explain his unsteadiness.  To be honest, I was hoping they would see something during the EEG because Jadey and I feel like he is having breakthrough seizures.  It probably sounds strange that I was hoping for seizures; the reality of the situation is that if Oliver is having seizures, I want to know about it, and I want the doctors to know about it.  I want to have some absolutes: knowledge that certain types of odd-looking movements indicate a seizure is happening.  It’s really hard to be constantly questioning every little thing he does and wondering if he is having a seizure.  What they found at the EEG was that Oliver has abnormal background brain wave activity that makes seizures very likely, which is no surprise considering the amount of tubers in his brain.  They found that he has “frequent discharge” from a couple of his tubers, one in the left temporal lobe and another somewhere in the right hemisphere.  They saw no seizures and nothing that could explain his ataxia.  After seeing him walk around, the neurologists were more concerned than ever; actually, the word his main neurologist used was “puzzled”.  She told me in an email that they still think it could very possibly be seizures causing his motor problems, and if it isn’t seizures, then he could have another rare disease in addition to tuberous sclerosis.  That put things into perspective for me.  When I had been hoping for seizures to happen during the EEG, I wasn’t hoping that he was having constant seizures causing his dizziness.  Now though, it seems like constant seizures are the lesser of two evils.  I’d rather the problem be that Oliver’s seizures aren’t being controlled on Topamax than that he has some other horrible degenerative disease.  I posted questions on a bunch of websites, and I got some responses from some other parents of children with TS that make me hope the problem is neither seizures nor another disease.  Some people said their children had dizziness and ataxia when they were on Topamax, and when they went to a different medication, the motor problems mysteriously disappeared.  I had discussed this possibility with Oliver’s neurologists before, and they didn’t think it was related.  I am still hoping the med is what is causing all of this though; that would be an easy fix, especially since Topamax hasn’t been working as well lately.

I really do like to have absolutes, knowledge that I can count on and know is true, and I realized after the EEG that my desire to be able to believe something absolutely could adversely affect the care I give Oliver.  When the doctor came in and told me Oliver wasn’t having seizures and that this was good news, I believed him.  I needed to believe him, that his words were absolutely true.  I picture it as if I am a survivor of a shipwreck in the middle of the ocean.  I am desperate to find any floating item I can hold on to, because if I don’t have anything to hold on to, I won’t have the strength to stay afloat.  I wanted to grab hold of that doctor’s words, that Oliver isn’t having seizures and that his seizures are well-controlled on the meds.  This is a problem because when I see something happening to Oliver that looks strange, I will use that doctor’s words to convince myself that is not a seizure.  This keeps me from taking these episodes as seriously as they need to be taken.  Another absolute decision that I had made was that Oliver’s neurologist was good.  However, she could someday make bad calls that jeopardize his future.  I have to make sure I don’t stick to my decision rather than do what needs to be done and get a new neurologist.  As nice as it would feel to believe the EEG results, I have to remain skeptical.

After the 24-hour EEG, a neurology appointment, and a barrage of emails between the neurologist and me, we got Oliver scheduled for a 5-day video EEG.  I am relatively anxious about this one because they are going to wean him off his meds while he is hooked up.  They want to see where the seizures are occurring and what type of seizures he is having.  They want to see if he is having seizures that could be causing ataxia, and they want to know what type(s) of seizures he is having in order to switch him to the most appropriate new medication.  It’s scary because he is going to have a lot of seizures.  From talking with the doctors and with other families who have done this before, the hospital will be a really safe place to take him off Topamax.  He will have an IV in throughout the study in case they need to administer rescue medication (used to stop a long seizure that would cause brain damage), and there are plenty of specialists available.  We have to find out why these motor problems are happening.  I would like to attach myself to the idea that Topamax is causing the dizziness, but I have to force myself to keep an open mind.

This is where we are with Oliver’s care right now.  I’m coming to terms with the idea of taking him off seizure medication for the EEG, although I think it’s going to be hard.  Throughout these past few months dealing with the dizziness and ataxia issues, I have been happy with Oliver’s medical care.  I’m thankful that the doctors are really persistent about finding out what is wrong rather than just assuming things are fine since nothing came up on the overnight EEG.  Oliver and Jadey are checking in October 10, so we are counting down the days until then.

Guess Who's Back...

8/3/11

Oliver had a seizure on Tuesday night, a day and a half ago, which was the first episode we have been sure of since December.  I was home alone with him- it was Jadey’s night off, and he was at a movie.  Ollie was tired since he hadn’t had much for naps that day, so I gave him his melatonin early and put him in bed at 8:00, 30 minutes early.  He was pretty quiet, so I figured he had fallen asleep.  I went up to check on him at 8:15, and he was awake and playing with his music toys.  He saw me before I could hide and started crying, so I got him and rocked him for awhile.  Around 8:20, he was drifting off; his eyes were shut, and I was about to put him in his crib for the night.  Then, all of a sudden, his eyes opened really wide and his body tensed up.  He started turning his head really slowly, back and forth, looking around, with his eyes still really wide open and his body stiff.  He looked at me, almost as if he didn’t know who I was, and then a big grin lit up his face.  I tried to tickle him, and he responded a little, but not as much as he usually would.  I’m not sure exactly when the episode ended, but 5-10 minutes later he was pushing his music toys in his crib like usual.  By 8:33, he was asleep.  I wasn’t sure in the moment if it was a seizure or not, but as I thought about it over the next few minutes, the more sure I was.  It was the exact same way his spasms would start back in September and October.  When he was diagnosed, his neurologist said that his spasms were a strange meld of IS and complex partial seizures; the two kind of fed off each other.  Back then, we could tell he was going to have his spasms because his eyes would open really wide and his body would tense up; he would also do the weird turning his head thing.  Then, he would start to spasm.  This time, there weren’t any strange spasms or jerks, so it looked to me like just the complex partial seizure.  I emailed Oliver’s neurologist that night, and the next morning she emailed me back.  She thought it was a complex partial seizure as well, and she said we should increase his medication.  We started increasing his meds last night.  Hopefully it will work and we won’t see any more of this for a long, long time.  He had a couple of questionable episodes yesterday, pauses in the middle of what he was doing.  I’m really looking forward to the EEG in 3 weeks; hopefully we will know exactly what is going on.  It’s been sad going from 7 months of relative seizure freedom to being back in the middle of it.

What if...

 

7/23/11

I have been thinking lately about how different I want Oliver’s first year of life to have been, and how much I wish I could change about how Jadey and I handled everything.  Jadey and I are constantly hearing kind people tell us how great we are at being on top of Oliver’s medical needs and getting help quickly when he needs it.  The truth of the matter is, though, that we should have been better.  There are so many things that we should have done differently and more quickly. 

Oliver started having infantile spasms (IS) sometime within the first 4 months of his life.  He was developing normally until around 4 months of age, so I tend to think that was when the spasms started.  Jadey thinks the spasms may have started much earlier though, even within a few days after his birth.  Oliver was in the NICU for 8 days due to jaundice, and we noticed what looked like startle reflexes happening for no apparent reason when he was lying on the bed under the lights.  The nurses told us that he was having the startle reflex since he wasn’t swaddled, but Jadey thinks those movements may have been the start of Oliver’s IS.  Around 4 months of age, Jadey saw Oliver’s startle-reflex-looking IS and said we should go to the ER.  I said it was just a startle reflex and that it was fine.  At the 4-month appointment, I asked Oliver’s pediatrician about the strange startle reflexes, including telling him that they weren’t going away and were actually happening more.  I told him that the startles didn’t look normal: that they didn’t happen when he was surprised and that a bunch would happen in a cluster.  Oliver would be lying comfortably in his crib or in my arms, and he would have a group of these so-called startle reflexes, one after another.  The doctor said it was still normal for Oliver to be having the startle reflex until he was about 6 months of age, and he didn’t seem to mind that the movements were different from a normal startle.  We were in to the office a lot during that next 2 months.  Oliver was having a really hard time and crying pretty much constantly, unless he was eating or sleeping.  He was losing skills, which was a lot easier to see in retrospect than it was in the moment.  Loss of developmental skills is much more elusive to track than you would think; at least it was in Oliver’s case.  It wasn’t like one day he was smiling and playing, and the next day he stopped smiling and spent all his time staring off into space.  His crying gradually increased more and more over a few weeks, and his happy smiles gradually decreased over weeks to months.  When all you want in the world is for your baby to be normal, you find valid ways to explain things like this that make perfect sense.  He’s crying all the time because he is teething.  He spits up all the time, so he must have reflux- don’t you know how miserable and painful that is?  Of course he doesn’t want to smile if he is in so much pain.  And then every now and then, like once a week or so, he would have moments of clarity where we would hear a perfect “ba” sound, or he would see me, and a great big smile would light up his face.  We saw that, breathed a sigh of relief, and used those as evidence that he wasn’t truly losing skills.  Not to say we weren’t worried.  Any time we saw a baby around Oliver’s age, or even younger, they were doing WAY more than he was.  Seeing babies that could babble, were interested in what was happening around them, and were developing lots of new skills, I would literally feel sick to my stomach.  I was bringing Oliver in to the pediatrician around once per week at that time.  One visit in particular I remember pretty clearly.  Oliver was around 6 months of age, and Jadey and I were scared out of our minds.  We were pretty sure most of the time that he was truly losing skills, and his skill loss wasn’t due to physical pain.  I took Oliver in to the pediatrician with the express purpose of getting a referral to a neurologist.  The doctor listened to me, sat down with me, and convinced me that everything was ok.  In retrospect, I could tell that he didn’t really believe me about Oliver’s loss of developmental milestones.  He just thought I was a paranoid mother whose mind inadvertently invented the worst possible scenario, just because it was the exact thing I DIDN’T want.  He gave me lots of empty reassurances and actually gave me wrong information about the startle reflex and about how seizures present.  From my time spent reading posts on TS discussion boards, I know that we are FAR from being the only family with a rocky road that led to their diagnosis of TS.  I’d say the family that finds out while still pregnant or right after birth, before the seizures even start, is the anomaly; the majority of us have angry, frustrating stories about incompetent doctors and misinformation that was given.  Jadey was the one who found out about IS while searching on the internet, and after reading a short description, we knew beyond a shadow of a doubt that THAT was what Ollie was having.  That discovery kick-started the frenzy of doctor visits, pushy emails, and desperate phone calls that has become our current life. 

As you can see, it’s not like we did nothing about our concerns.  However, all these excuses about our visits to our horrible, good-for-nothing pediatrician don’t make up for the fact that we didn’t catch Oliver’s IS until 3 ½ months had passed, which is much later than the average case of IS is caught.  We should have caught it and stopped it sooner.  If we had, Oliver would be doing so much better than he is now.  I wish that when Jadey said we should take him to the ER, I would have said, “Okay, let’s go.”  Although knowing what I now know about doctors and nurses in the ER, I’m not sure that would have done much good either.

Every part of my being knows that it is unhealthy for me to dwell on the “what-ifs”, but part of me just can’t help it.  What if my OB had noticed Ollie’s large cardiac rhabdomyomas or any of his brain tubers during one of our ultrasounds?  What if we had looked more into the faint heart murmur that Oliver’s pediatrician mentioned on one of his visits in the NICU?  What if Jadey had done his Google search a couple of months earlier?  What if we had just made an appointment with a neurologist instead of trying to get a referral from our loser pediatrician?  Whatever the answers may be, I continue to avoid blaming myself.  Of course, I don’t blame Jadey either.  I will also refuse to blame Oliver’s doctor since my bitterness toward him will only hurt me. 

Here’s the place at the end of my post for a nice little wrap-up statement to show that I’m moving forward toward the journey of acceptance.  Something like, “it’s all in the past now,” or, “at least I can learn from my mistakes and do better next time,” or, “whatever doesn’t break you makes you stronger.”  None of those really fit my reality though, so I’m just going to say this: I wish we had been better.

Look How Far We've Come!

I have been wanting to write about a few different topics lately, like our road to Oliver’s diagnosis or my discovery that there are, in fact, politicians who care about people.  I will have to save those for a later date, though, since this time I really want to write about how amazingly well Oliver has been doing developmentally, especially in the past couple of months.  I am dedicating this post as a thank-you to Oliver’s previous occupational therapist from Children’s Hospital, Alyssa.

 

Right before Oliver started his first seizure medication, vigabatrin, he was a total wreck.  He was either doing 1 of 3 things- sleeping, eating, or crying.  He did a lot of thrashing, screaming, and staring off into space, and instead of gaining new skills, he was actually losing the ones he had previously learned.  We tried so many things- 2 kinds of reflux meds, gas medicine, swaddling, and constant holding, but nothing worked.  We would hear things from other people- “Oh yeah, my baby cried and cried until we tried ___, then he/she was nothing but smiles and rainbows!”  After a day or so into the new treatment, we would imagine that we saw improvements, and then we would shortly realize that it wasn’t our magic pill after all.  After so many failures, needless to say, we couldn’t imagine something actually working.  So we were skeptical about the vigabatrin.  2 ½ days after starting vigabatrin, while Oliver was at the babysitter’s, something happened.  He started doing normal baby things, like cooing and rolling around, and stopped crying all the time.  It was so exciting, but we were still skeptical.  Seemed like this was the kind of thing that would work for a week or two, then stop.  I probably still don’t actually realize how lucky we were that the vigabatrin, and subsequently the Topamax, have actually worked (fingers crossed).  I know stories of people who did have the meds work for a few weeks before they stopped helping, and the seizures went back to how they had been before.  Oliver is far from being out of the woods yet as far as seizures; they could come back any day worse than ever.  His good response to the meds thus far has me hoping, though.

Oliver has been learning so much since October, when he started his meds.  We started him in physical, occupational, and early childhood therapies almost immediately after his diagnosis, and we saw some strong and steady gains in everything except his fine motor abilities.  His sitting was getting better and better, and it has finally progressed to sitting up on his own, to standing on his own, to walking.  He is so driven to make gains in his gross motor skills, it’s unbelievable.  I love joking/bragging that my baby with brain tumors learned how to walk sooner than either of his tumor-free parents!  His social skills and language have really improved, too- lots of communication, babbling, and seeking out play with Mommy and Daddy.  Fine motor was our big concern.  By Christmastime, Oliver had gained back all his lost skills in every other area and was making further gains, but he was still worse at using his hands at 9 months of age than he had been at 3 months.  He didn’t reach or use his hands for anything.  He was really defensive; the moment you would try to take his hand to reach out to touch or grab something, he would jerk it back as hard as he could and cry if you insisted.  OT wasn’t working at all; it was pretty clear that our current OT didn’t know much about teaching fine motor skills to babies.  That’s when I talked to my OT friend from work, Alyssa, about my frustrations with his lack of development, and that’s when she told me all the things that OT should be doing with Oliver.  Of course, our in-home OT wasn’t doing any of it.  Alyssa was the reason I requested a new OT through Early Intervention and the reason we started going to Children’s for extra OT.  We started going to Children’s to see Alyssa around mid-January, and within just a few sessions, Oliver was making huge gains.  He would actually reach out to touch things sometimes, which was unbelievably exciting.  We have a bunch of videos from that time, where if you didn’t know Ollie, you would have no idea what the big deal was.  When Jadey and I watch those videos, we know that in the background, although you can’t hear it, we are both shouting and jumping for joy inside to watch him swing his little arm toward something or stick a toy in his mouth.  He made almost daily progress since the moment he started seeing Alyssa, progress that couldn’t be attributed to his seizures being gone; he had made absolutely no progress in fine motor skills for his first 2 to 3 months of seizure freedom.  Every time we would see her, she would joke that she had to keep rewriting his goals since he was making such great progress.  Jadey was the first one to say that we needed to surround Oliver with the best people out there- not just someone who was good enough, but to seek out the best.  That was Alyssa for sure.   

I have to admit, I’m kind of obsessive about his development.  Jadey is the same way.  A few weeks ago, I was going through a language development checklist that I use at work, and one of the things that came up was that Oliver didn’t understand the word “no”.  Which is probably because we NEVER tell him no!  Any of his little mischievous-baby behaviors usually involve use of his hands, and we are cheering him on rather than trying to stop him.  Oh, you want to grab the food off our plates and drop it on the ground, Oliver?  Way to go!  Make sure you get all these chips too, and not just the sandwich!  You want to bang on the television screen?  Nice job!  Just make sure you don’t fall and hit your head on the corner of the TV stand!  You want to grab your yogurt and smear it all over your face and shirt and drop it on the carpet?  Great job!  Try to get some in your mouth while you’re at it- or not- either way is fine!  Yes, I suppose most parents would tell their kids “no” a lot more than Ollie hears it.  Ollie and I were in the grocery store a month or so ago buying gift cards, and he reached out and grabbed a few stacks of cards right off their hook and dropped them on the floor.  I was so excited to see it and was cheering him on!  I even moved the cart a little closer so he could reach more cards.  I’m sure everyone who saw us was wondering what was wrong with the crazy mom who just let her baby make a mess like that, but I wasn’t about to stop him!  The grocery store folks have plenty of reason to think I’m crazy too, because as I walk through the store I am constantly talking to Oliver about what I am getting or looking for, or where we are going.  I figure since I keep telling my families at work to do that with their language impaired kids, I had better do it with mine. 

Oliver has progressed from not using his hands at all for anything, to playing with something that we put in his hands, to grabbing things, to swiping at things, to banging things with different parts of his hands.  Right now, we are working on getting him to use a thumb and pointer finger pincer grasp, to hold his own bottle, to feed himself, to point at something, to clap, and to bang an object with another object.  Mostly things that probably a 7 or 8-month-old baby can do easily, but they are really hard for him.  Oliver has come so incredibly far in the past few months that I know he is going to learn to do them really soon.  It’s all thanks to Alyssa.  She gave me the information that brought about the change in therapists, sent emails to the people in charge of the wait list to get him in sooner, squeezed him into her packed schedule, and gave so many great ideas to use with him.  Thank you so much for helping my son, Alyssa!  Words cannot express how grateful I am for your support and care.  You are an amazing person and therapist, and we already miss you tremendously!  Children’s Hospital has no idea how much it lost when you left.  I wish you the best.

A Clarification

OK, so after hearing some feedback about my last post, I am realizing that I need to clarify a couple of things.  First of all, when I said that Jadey was shaking Oliver, I should have said that Jadey was trembling with frustration while holding Oliver.  He most definitely wasn't shaking Oliver in the "don't shake a baby" sense of the word.  Oliver was not being hurt in any way whatsoever by the movement.  Second of all, before all this happened, Jadey had been trying to tell me that he shouldn't be a part of the pill dosing since it caused him to get so stressed out.  I really wanted him to help me, so I pushed for him to still participate in the dosing.  Jadey knows when he is getting too frustrated to be of much help; he knows when to leave the room.  I think everybody gets a little stressed sometimes, so no one should blame Jadey for feeling that way!  He's a really good dad and is great with Oliver.  I apologize that this didn't come across more in my post yesterday- I didn't have as much chance to go over it as I would have liked.

The Topamax Debacle

Oliver’s dosing of his seizure medicine has been really difficult for awhile.  I want to share how things were and how we finally found our solution!  I feel like I never write when things are going well, so here’s a story that actually has a good ending. :)

Oliver started taking vigabatrin, his first seizure medicine, in mid-October right after his diagnosis.  We crushed the pills and sprinkled the dust onto applesauce.  It was so easy- at that point of life he would open up his little mouth for anything and everything!  Our babysitter at the time said he ate “just like a little bird”, opening his mouth as wide as possible to get as much food in as he could.  We started giving him Topamax around the end of December when he started having complex partial seizures, and everything changed.  Topamax is really bitter, and after the first bite or 2, he would refuse more.  Anyone who has had trouble getting their kid to eat will have some idea of our frustration.  It was so horribly stressful- I would actually start getting anxious around mid-afternoon since the evening dose was so hard to get down him.  He would usually be ok with the first bite or so, and then he would refuse everything else.  I tried everything- mixing the pill into more tasty foods like pudding and frosting, tricking him by giving him bites of food without Topamax and then sneaking a couple in, giving him milk in between bites, prying his mouth open and squeezing the spoon in as he shook his head crying, and so on.  Really bad and stressful!!  Jadey and I knew that if things continued on like this, he would have major feeding problems as he grew, but neither of us had good ideas.  Jadey didn’t handle the stress of dosing as well as I did, so he frequently took off in the middle of the dose and left me to finish however I could.  A friend whose daughter has TS and was on Topamax for a time gave us the idea to mix it into soda since it masks the bitterness of the drug.  So we dissolved the medicine in Pepsi for awhile.  We would give him 5 oz of Pepsi with each dose, so 10 oz of Pepsi per day- disgusting.  I hated giving him that Pepsi, but it was the only way he would take the meds on a consistent basis.  After drinking the Pepsi, he would spit up these tiny, sticky, dark brown strings.  I was determined to find a better way, even though Jadey was pushing to just keep going with the Pepsi since it was working.  Our friend had told me that she got her daughter’s Topamax compounded into a liquid, and the flavorings they used seemed to really help with the bitterness.  After lots of phone calls (some angry) to pharmacies and nurses, I finally was in line at Walgreens in Aurora to get Ollie some liquid Topamax- what I hoped would be the end of all our suffering!!  When I got to the front of the line to pick up the prescription, I asked them if I could choose the flavoring.  Which was when I found out that that Walgreens (and every other Walgreens I have contacted) would not flavor compounded Topamax.  What a huge disappointment.  Now, instead of having horrible-tasting powder, we have horrible-tasting liquid that costs 4 times more- thanks for NOTHING!  Of course, when we tried it, it didn’t work any better than the powder.  Pill dosing was still miserably stressful, and Jadey still stormed out of the room swearing whenever things got bad.  At one point, Jadey tried talking to a pharmacist at Walmart about getting the stuff flavored, which didn’t go well.  Finally, that Sunday, I decided that enough was enough- I made a plan to go to a bunch of pharmacies and to beg and plead for something I could use for his pill.  I knew they HAD the flavorings- why wouldn’t they share them with us??  The first 4 places I went were closed (even though they ALL had Sunday hours posted online and in the store- jerks).  Finally I found a Walgreens that was actually open.  After a long conversation with a pharmacist, which included me telling him how desperate I was and how unhelpful Walgreens had been, he finally sold me a bottle of cherry gunk that was used to mix with Theraflu.  Success!!  The cherry gunk allowed us to switch from Pepsi to Sierra Mist.  Not optimal, but still better than the Pepsi.  After a post on a TS discussion board where I asked other parents for ideas, I found out that Topamax comes in a sprinkle capsule- a plastic pill filled with teeny gelatin-covered pellets of Topamax.  You open up the capsule and dump the little granules onto food.  The gelatin covering allows you a couple seconds of non-bitterness before it melts away.  I was pretty hopeful but still skeptical because of all our failures.  It turned out to be the best solution though, by far!  The dosing still hasn’t been perfect by any means, and Oliver dislikes the feel of the pellets in his mouth, but dosing time is no longer horribly stressful.  As Oliver got used to the pellets, he minded them less and less.  The last really difficult time with the pellets was the last dose that Jadey has helped with, about 3 weeks ago.  Jadey had been threatening for awhile that he was not going to help me anymore if I kept changing how we administered the dose, and that night he finally snapped.  Ollie was not super excited about taking his medicine, and he finally gagged and spit out a huge mouthful of food mixed with pill.  Jadey was holding him, and he totally lost it- he started shaking Oliver (more like trembling with frustration than actual "shaking") and yelling at him, “Eat it, just eat it!”  I grabbed Ollie and told Jadey to get away from him- I guess my protective mom instinct kicked in.  Since then, we both agree that I should do the medication myself.  Jadey has even gotten to the point where he refuses to be in the same room with us until the dose is done because he gets too stressed out.  Anyway, dosing isn’t a very big deal anymore.  We just try to feed him very little after about 2:00 or 3:00 in the afternoon so he will be hungry in the evening.  Around 6:30 or 7:00, I get the fruit puree, warm milk, and pill sprinkles ready.  I put Ollie in the car seat.  To dose, I get a bite of fruit, sprinkle some Topamax on top, and feed it to him.  Then I chase it with warm milk and rock him in the seat for a few seconds.  I repeat that procedure until the pill is gone.  He enjoys the rocking and milk, so the medicine goes down easier.  The Topamax still seems to be controlling the seizures!  Oliver has been developing very well lately- standing by himself, crawling, and possibly understanding some words (!!!!!).  (Can you tell that his speech therapist mommy is excited about that one?)

Another Sunday night.

3/13/11

Oliver’s had a really hard day today- fussy, tired, in pain, and won’t sleep.  He had a fever of about 100.5 when I checked him this afternoon, and he’s been on ibuprofen and Tylenol all day.  The fever has gone down a little but is still there.  We haven’t seen any seizure activity yet, but I’m still nervous.  Either ibuprofen or Tylenol should lower the fever, and both together aren’t doing enough good.  I went to the pharmacy this evening to fill his Diastat prescription, just in case we need it tonight.  We’re supposed to use it in case of a seizure that lasts more than 5 minutes.  We’ve never had to use it before, so tonight might be the first time.  Lately, I have been reading some stories written by parents of children with TS, and they scare me.  So many of the stories talk about huge, debilitating seizures that caused irreversible loss of skills.  When I read stories like that, I can’t help but wonder if tonight will be some sort of turning point in Oliver’s life.  It probably won’t, but you never know.  We already have 2 strikes against us.  Strike one: fever, especially since it’s not controlled by medicine.  Strike 2: It’s Sunday night.  These things always happen on Sunday nights for whatever reason.  I want to have the Diastat on hand so I’m prepared in case something happens.  If something does happen, I don’t want to have to look back and wonder if I could’ve prevented it.

On the plus side, he’s not throwing up- no problems with pill dosing tonight!  (knock on wood)

I guess we’ll see what happens.

Thoughts about TS and my job

2/19/11

I worked a little extra today to make up the evaluation I canceled when Oliver was sick a couple of weeks ago.  Working with special needs kids makes me wonder constantly how Oliver is going to be when he gets older, and today has been no different.  There is no accurate or precise way to determine how he will develop, which drives me crazy.  I know from reading people’s stories and the literature that there is absolutely no way to know how things will turn out.  It seems like the more the seizures are under control, the better off kids typically are.  It seems that the earlier the seizures present, the worse the outcomes.  Also, if kids start off with infantile spasms, like Oliver did, their development is generally slower and more abnormal.  However, if the spasms are controlled quickly, as Ollie’s were, the better the outcome.  We can’t even predict outcomes based on the amount or the location of brain tubers either.  Sometimes, kids have very little obvious brain involvement and have horribly uncontrolled seizures, and others have lots of tubers but have few difficulties.  Kinda convoluted and confusing.  Oliver only has 1 cortical tuber that they have identified so far, but that doesn’t mean that his seizures will always be as well controlled as they are now.  Also, more tubers could appear as his brain develops and as he grows.  I’d like to tell myself that I should just live in the moment- see Oliver as he is now and deal with problems as they come up.  I know that’s frequently-given advice, too, to just deal with things as they come, and don’t worry about what will happen in the future.  I don’t really think it’s good advice, though.  I think that if I am mentally prepared for upcoming problems, I will be more able to handle them, so I should think through what could happen- both the bad and the good. 

Anyway, back to work.  I’m a speech therapist, and I work at Children’s Hospital seeing kids for outpatient therapy.  Lots of times, I look at my patients and wonder if Oliver will be like them and whether I will be able to handle it on a day-to-day basis.  I see my patients’ families’ struggles with behaviors, school, learning, teachers, therapists, and everything, and I wonder what the best ways are to manage all that.  The day-to-day stuff is definitely something therapists have no clue about when it comes to special needs kids.  Sometimes it’s hard to see what the families are going through because it reminds me of our situation, and it scares me that that will be my future.  Other times, I see families struggling, and it reminds me so scarily much of what we have been through; one little 3-year-old guy in particular sticks out in my mind.  I saw him for a speech-language evaluation about a month and a half ago.  The parents both took work off and came to the eval, which is usually a sign that they are very concerned and very involved.  The little guy had significant communication delays and had some behaviors and patterns that made me think of autism.  The family WAS very concerned- they volunteered a lot of information about why they were worried. Their story reminded me so much of Jadey’s and my story with getting Oliver diagnosed.  Lots of empty reassurances from the pediatrician, comparisons with other kids his age that just didn’t compute no matter how much they tried to justify it, attempts to convince themselves that what they were seeing was just a phase or something the little guy would grow out of, things like that.  EVERYTHING that Jadey and I did for weeks and weeks while Oliver was losing his skills.  They ended up coming for the speech-language evaluation on their own without a referral from the pediatrician, which is EXACTLY the way Oliver finally ended up seeing a neurologist and getting his diagnosis of TS.  I could tell the family was so anxious- scared that they weren’t getting the help their son needed but frightened that I would tell them something that would confirm their fears.  Those types of evaluations are always the hardest, especially now.  I definitely told them about his language delays, but I wasn’t sure if I should tell them about my suspicion of autism- to actually say the word “autism” to them rather than to be general and tell them to go for “another type of evaluation”.  Sometimes families are ready to hear that, and sometimes they need to come to it a little more slowly and will get angry if I tell them specifics.  And as a speech pathologist, I can’t diagnose autism, so I only need to say it to them if I think it will help.  I had decided not to go into detail about my concerns until the dad asked me specifically why I thought the boy’s language problems were happening.  So then I told them I thought he might have autism, but I couldn’t say for sure and would like the boy to see a specialist.  Such a hard thing for everyone involved.  I know how hard it is on my end to have to say things like that to concerned parents, and now I know what it’s like to be a parent and to hear bad news about my own son.  I know Oliver’s situation has made me a more compassionate and understanding therapist, but it also makes my job harder.

Not too long ago, I had another situation that reminded me of our family, but this one scared me more than anything.  I had just scheduled a little girl from the wait list and was starting with her in a couple of days.  I was the one who had evaluated her, so I knew her already- she was 3 ½, had autism, and was pretty much nonverbal.  I was reading through her medical chart before starting with her to refresh my memory, and I saw some visits the family had made to the neurologist a few years previous.  It looked like the mother had had a concern that the little girl was making strange, uncontrollable motions with her arms when being put in her high chair.  After talking with them about it, the neurology resident told the family that it was probably just a behavioral thing and not a seizure.  Later on in the chart, there was a description of some skin manifestations- namely some light-colored areas, or ash leaf spots.  Further on in the chart, I saw that the girl had had some genetic testing done to try to find whether there was a reason for her autism and developmental delay.  The tests came back negative, and the geneticist made a recommendation to test her for… tuberous sclerosis.  When I read that, I froze.  To a rightfully paranoid parent like me, strange-looking arm movements sound like infantile spasms, which are something that a neurology resident might easily miss.  Ash leaf spots are a major diagnostic feature of tuberous sclerosis.  And the TS population has an insanely high incidence of autism or pervasive developmental disorder; somewhere between 25-50% of people with TS are said to be on the spectrum, a much higher percentage than the general population.  Of course, in my mind she’s already been diagnosed with TS, and I wonder if this is Ollie’s future.  Would this have been his future if we had continued to let his spasms go untreated?  Scary.

So it seems that my job has become a lot more personal.  I have more of a stock in these families now that I am one of them; I sympathize more with them and understand much more of what they are going through.  More than anything though, I am glad that I am in a profession that has given me the knowledge and resources to help Oliver more than I would have otherwise.

*sigh of relief*

2/9/11

Oliver was supposed to have his MRI today to check the growth of his SEGA (brain tumor in the foramen of Monro that has the potential to block flow of cerebrospinal fluid and cause hydrocephalus). Last night, the anesthesiologist decided he shouldn’t be under anesthesia since he has been sick so recently. I can’t help but be happy about canceling; I wasn’t super excited about having to get up at 4:00 am and sit in the hospital for 8 hours or so on my day off. We will have the MRI in 2 weeks. Oliver is doing a lot better today. Yesterday was tough for him. He still had his fever and was still dealing with his body’s reaction to the Ativan. I was away working, but Jadey was home with Oliver and the babysitter. Jadey said the baby spent the entire day alternating between screaming and sleeping. I have no idea how Jadey was able to do any work having to listen to that all day. It was a good thing it was so snowy yesterday and very few of my patients wanted to brave the streets, because that meant I had a lot of time to call doctors. The neurologist said I could bring him in for an EEG, but I decided not to since I think Ollie’s seizures on Sunday night were fever-induced. She also said we could increase his Topamax. I talked to Jadey, and he thought we should leave the dose where it was for now. So I guess that’s what we’ll do. Hopefully we made the right decisions to not bring him in for an EEG or to increase his medications! Somewhere in the past few months we realized that this is all a guessing game, whether you’re a neurologist or a parent. No more blindly following doctors’ orders for us!

People in our lives have been so amazing! Our friends and family were great when Oliver was just diagnosed, and as people are realizing how crazy things are for us, they are continuing to help. Jadey and I are so very appreciative of everything people have done. Getting us gift cards for restaurants, bringing dinner, cleaning the house, watching Oliver so we can go out, watching Oliver while we are working, and everything else. To everyone who has cared enough to help or to share kind words and encouragement, thank you so much. Jadey and I couldn’t do this without you. I am so thankful for the church that I am in right now. I know that if I went to a super-Christian church, like the ones I grew up in, that I would have left by now. I would have felt like a hypocrite going to a church like that and feeling the way that I do about God. I am glad to be in a place where I don’t have to pretend that God and I are doing okay in order to fit in. I know that I can share exactly where I am right now with anyone there, and no one will make me feel bad for thinking that way- they will accept it and let me feel the way I need to feel. It’s such a relief, because now, more than ever before, I need people like that in my life.

Ollie is doing pretty well today- happier, more willing to eat, and more willing to sleep. He had PT this morning, which went surprisingly well considering the craziness that has been this week! I have to confess, though, that I kinda bribed him by dipping his pacifier in pineapple puree several times to get him to keep working… He is learning how to crawl and is getting more and more interested in it, thanks to our awesome PT and to Jadey’s practice with him. We have OT at 3:00 this afternoon, and Ollie is sleeping now; hopefully he will be ready to go by then! I’m expecting the rest of today to be pretty uneventful, which will be nice.

On another super-cool note, some friends set up a team to walk for Ollie in the TS walk that is taking place in Northglenn, CO in May!!! Here is the team’s site if anyone would like to join us and walk:

http://www.firstgiving.com/process/teamarea/default.asp?did=137&TeamId=130918&EventId=106340

If you aren’t able to walk but would still like to help, you can donate. Here is my fund-raising page:

http://www.firstgiving.com/fundraiser/angela-hansen/step-forward-to-cure-tsc-northglenn-co

There are walks going on all over the country to raise money for TS research. Here’s a list of them:

http://www.firstgiving.com/process/teamarea/default.asp?did=137

There are a lot of exciting things happening with TS research right now, including medications that shrink SEGAs, decrease facial tumors, improve cognitive and behavior functioning, and more. Results from research with TS treatments are being translated to other types of cancers, and vice versa. This is really important stuff! We need to have this research conducted, because this is the knowledge that WILL benefit Ollie and others with TS and make their lives better.