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.

trip to the ER

Oliver is my 11-month-old son, and he has TS along with brain tumors and seizures. We have been doing pretty well getting his seizures under control, and things have been going well. Life with tuberous sclerosis is never easy, but these last 20 or so hours have been extra crazy.

2/6/11 11:30 pm

Oliver is starting to act strange. As a parent of a child with TS, you look at everything your kid does very, very carefully, so my husband Jadey and I are used to asking and answering the questions, “Did you see that?” “Was that strange?”, “Have you seen it before?”, etc. So when Jadey wakes me up around 11:30 asking me to come check on Ollie because he is doing weird things, it isn’t anything out of the ordinary. We watch him and talk for a while, then I go back to bed.

2/7/11 12:30 am

Jadey comes and gets me again since Ollie is doing some strange laughing. Ollie is exhausted, and so he would be asleep in Jadey’s arms. Then, Jadey would put him down in his crib, and before long Oliver would wake up screaming. Not crying or fussing- screaming. So Jadey would go over to him and try to calm him, and then Oliver would suddenly become very happy and want to play. He would be laughing, wiggling, squealing, and pretty much being adorable, if you could get over the fact that it was the middle of the night. That would last for about 1-2 minutes, then Oliver would start to get fussy. Jadey would pick him up and calm him for 5 or 10 minutes, then Oliver would fall asleep. And the cycle would start again. This whole cycle happened about 6 times in a period of an hour and a half. Jadey woke me up sometime in the middle of cycle 3 or 4, and I got to see it for myself. If you have ever had to have discussions with your spouse at 1:00 am about whether or not to bring your kid in to the ER, you know they are no fun. I have to figure out if I should plan on getting up at 6:30 and working 10 hours the next day (I have an evaluation and group, and people wait months and months for those evaluation appointments… Should I try to do a half day?). After about 30 minutes of calls to and from receptionists, nurses, and various doctors (including Oliver’s actual PCP; can you believe she called me at 1:00 am on Monday morning???? Oliver has an amazing PCP.), they decide that it may be seizure activity and we should bring him in to the ER. Of course, at that time, he is sleeping and seems to have broken the seizure cycle, so we decide to leave him in his crib and let him sleep. Off to bed.

2/7/11 2:15 am

Oliver wakes up crying. I go in to get him, and I am able to calm him, so I put him back down and go back to bed. 10 minutes, later, he is crying again. I go in again and try to rock him, but he isn’t having it. He is doing strange twitching which are almost like tremors; hard to see, but I can feel it when I hold him. Jadey comes in too, and we decide something had to be done. The tremor thing is lasting for a long time, and I am scared. I wonder if we should call an ambulance- Is he was going to stop breathing? We decide to take him in ourselves.

2/7/11 3:00 am

We make it to the hospital in record time (at least there’s no traffic at 3:00 am!). Turns out, he has a fever of 102.7, which I feel like an idiot for missing. I tell the problems he is having to about 5 different doctors and nurses, all separately of course, and all while trying to remember and think of everything through my haze of dizziness and exhaustion. Over the next 2 hours, they give him ibuprofen, Tylenol, and Ativan. The Ativan is supposed to make him sleepy, but it just makes him hyperactive and really dazed and drugged. Of course, this is happening just around the time we have to give him his normal seizure medicines, and he isn’t with-it enough to be able to swallow anything. It’s scary because you don’t miss doses of seizure medicines if you want to live to see tomorrow. Missing doses leads to prolonged seizures that could kill you- “status epilepticus”. Finally, we get the meds down him with some help from a great nurse. They put us in an observation room for a few hours to see how he will do. Oliver hangs out in the crib, and Jadey and I rest on the twin bed. They finally send us home at 10:30 am.

It’s so strange, because people see us and our adorable baby, and they think that our lives are ok and that things are going to work out fine. Sure, Oliver has seizures (so they’ve heard), but he looks so normal; nothing really bad could be wrong. People don’t see the 3:00 am ER runs or the constant concern and watch for any strange-looking movement that may be a seizure. They don’t have to attend the constant medical appointments. They don’t know what it’s like to be awake with the baby for 1 to 2 hours every night, then have to function the next day at work, day after day after day. They don’t understand about his swallowing problems or see him choke on liquids. They don’t cuddle and bounce him for hours on end when he cries because his tummy hurts so much from him being backed up and full of gas. They don’t have to live with the constant concern about his growing brain tumor that could be causing hydrocephalus. Oliver has an MRI in 2 days, and we are going to see how rapidly that tumor is growing. I am scared because he may end up having emergency brain surgery if things are getting really bad. How many people know what it’s like to have to worry about their baby needing emergency brain surgery?? Then there are the developmental delays. He has some strange ones that make me worry about future mental health problems or autism. Everything is so subtle that it is hard to know what Ollie’s future might hold, and it’s hard to make people understand how serious his situation is. It’s hard to deal with the comments from well-meaning people- “Everything will work out ok.” “Don’t be such a pessimist. Ollie will be fine.” “He looks pretty normal to me.” No wonder denial is such a big part of the grief cycle.

2/7/11 2:00 pm

I just got up from my nap. Oliver has been acting really strange the whole time I was sleeping- hyper, playful, and unable or unwilling to eat. Any food or drink that goes in his mouth just dribbles right back out, as if he has low tone in his lips. His temperature is back up too, back to 102. Great. He’s exhausted AND has a high fever, both of which lower the seizure threshold. More ibuprofen and Tylenol. Why is Ollie so hyper and strange? Did they give him too much Ativan? Shouldn’t it have worn off by now? I just wish he would sleep… he needs sleep so much. He is getting dehydrated too, so we may have to bring him back to the ER if he can’t get any liquids down. Dehydration is more of an issue for him because he is on a seizure medication that causes kidney stones if he gets dehydrated. No more seizures at least. I give him pedialyte through a syringe and inwardly cheer as he is able to swallow a little before it dribbles down his chin. Calls to the doctors. I tell Jadey to go sleep a little, because tonight might be another long, sleepless night.

2/7/11 4:30 pm

Still no word from the doctors. Oliver is still hyper and playful and not a bit sleepy. He is still having trouble drinking milk; maybe he is uninterested, I’m not really sure. I am trying to get more pedialyte down him, which sometimes works ok. The pedialyte drips out of his mouth more often when he is upright, so I try to have him drink it when he is on his back. Of course, this makes him more prone to choking given his swallowing problems. I am wondering if I should take off his medical bracelet, and I decide to leave it on. Maybe Murphy’s law will work for me instead of against me, and leaving the bracelet on will mean we don’t have to go the hospital tonight and get another one. Ollie’s fever seems to have broken from all the medicine I gave him a couple of hours ago, so that’s good.