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.