Wednesday, April 30, 2008

Chase's Medical Issues

We started noticing around 5 months of age that Summer was making developmental strides that Chase was not. We just thought, oh girls develop faster than boys. Three months and a move to SC later I spoke with our pediatrician about it and he assured me Chase was just moving at his own, slower, pace. I asked for a referral to a developmental specialist ... and so the journey began.

Chase was diagnosed with hypotonia (low muscle tone) at the end of Nov. 2007. He was extensively tested for his developmental progress, his gross motor skills were behind 5-6 months, his cognition was behind 2 months and his fine motor was generally behind 4 months. He had some skills that were advanced, so he was a bit of an anomaly, but they determined his overall lag to be 5-6 months.

I'd also noticed that his head had gotten flat in the back. Our pediatrician said it would round back out on it's own, but it didn't seem to be making any progress in that direction. Because of his hypotonia Chase did not move when he slept, which is necessary to round a babies' head.

In addition, Chase's eyes seemed to sometimes be looking over your shoulder, or not focused properly at you. Not all the time, but sometimes.

Autism was beginning to become a real concern. But Chase seemed to be bright and engaged and didn't fit the typical patterns.

He then had an MRI and the outcome of that was a diagnosis of PVL, Periventricular leukomalacia. PVL is a precursor to cerebral palsey and the research I did on it was very grim. Noone could tell me if at some point Chase might begin to regress with skills he'd already gained, or what his future would look like. It was very likely he wouldn't walk and would be wheelchair bound.

We then got our first round of genetic testing results and everything was clear. Whew! Upon follow up with the geneticist, it was his opinion after examining and testing Chase and looking at his MRI again, that the PVL was either a mis-diagnosis, a missread of the MRI or that he had it and was not going to be effected by it. While this was the greatest news I could have hoped for that day, it was hard to get my hopes up based on one doctors assessment.

So we then went to a pediatric neurologist. Being that we waited in the examining room for 4 hours before we were seen by the doctor, he felt so bad that he gave us the most extensive appointment I could have ever hoped for. He pulled up Chase's MRI on the computer and we looked over almost all of the views one by one, he summarized each view for me and answered every question. After several hours, he also determined that the PVL diagnosis was not supported by the clinical evidence and he said though there may be some neurological issues (with the white matter of his brain), he was a happy, engaged, smart, easily soothed, well behaved little boy and that outwardly he showed no signs of neurological damage.

So the consensus of the doctors now was that Chase may be lagging behind for a few years, but that he would catch up and be just fine. Maybe not 100% physically, but pretty darn close.

We started PT, OT and EI in January to the tune of 5-6 appointments a week. Chase took several weeks to get used to the therapy and his biggest issue was PT. Within a few weeks, he began to make consistent improvements with PT, week to week.

Chase was now rolling over, sitting up on his own, maintaining his balance, and balance shifting. While these were all great strides for Chase, his gap with Summer continued to be quite noticable, as she was now running all over the place.

I then asked for a referral to a specialist to discuss having him fitted for a helmet to reduce the flat spot on his head. Repositioning wasn't working and though he was older than the ideal candidate, we went ahead and banded him. He wore his helmet for 3 months and saw a 52% improvement in his asymmetry. He started off mild/moderate at 10.6 (3 is ideal) and improved to a 6.6.

Chase's geneticist did another round of tests, which all came back negative and we agreed that we would just watch him further over the next 6 months before subjecting him to any further testing.

Three months following his initial developmental testing, Chase was tested again and at this point was not behind cognitively, only 2 months behind on fine motor and 5 months behind on gross motor. This was significant because it showed a steady improvement and no regression. Chase is now completely balanced, able to catch himself fall, and most importantly GI crawling at a million miles an hour and it has made such a huge difference that he can get where he wants to go and do what he wants to do. He's so much happier!

During this time, Chase was seen by a pediatric ophthalmologist who diagnosed him with strabismus, which is essentially eyes that float, turn inward or turn outward. The majority of kids' eyes turn inward and that was the statistics available for best treatment scenarios. Chase's eyes turned outward. And not all the time. It took 4 different doctors to finally see his eyes turn at his first appointment.
We decided to do surgery, cutting 1 muscle in each eye and reattaching it to a different part of the eye. This was supposed to "reboot" his brain and essentially trick it into thinking his eyes were new and hopefully it would reset properly. I had a hard time wrapping my brain around this surgery. I couldn't understand how a neurological problem (which is what strabismus is) could be fixed by cutting muscle. The doctor said it was like coming up with a carpentry solution to fix an electrical problem. Hey --- that's Frank Turner logic if ever I had heard it!!!

They said doing it by 14 months was critical. So Chase had surgery to both eyes. And low and behold he recovered so well I was amazed! The anesthesia they used this time, as opposed to when he had his MRI, was different and he tolerated it so much better. His eyes appeared to be completely straight within a week. At his 4 week follow up appointment, the Dr. had several doctors look at him because he was amazed at how good his correction was! His alignment was now perfect and it was the best outcome he'd seen with this surgery!

Chase then began crawling on all fours, pulling up on his own, letting go and free standing, bear walking and he even walked with a walking toy about 20 steps (5/31/08)!! All of these things I honestly had not expectted to see at all this year.

We decided by July to cut his PT to 1 session a week because he already hit all of his 6 month goals.

He has continued to cruise, take steps without holding onto anything, bend up and down without holding onto anything and get around really well. Chase's progress has been amazing to watch and he's had such a great attitude about it all.

On Septemeber 11 he was reevaluated by his developmental specialist team and they did a full panel of testing on him again. He is no longer showing any lag with fine motor, speach or cognition. His only lag in gross motor is his walking and he is clearly making great strides toward that end. The doctor's were all dumbfounded by how far he has come. The last time they saw him he had just started GI crawling and he wouldn't do that for them. They in no way expected that he would even be taking steps when they saw him today and he is taking up to 15 steps at a time!!

Chase's progress has been amazing to watch and he's had such a great attitude about it all. He is starting to talk alot more now and is making all kinds of animal sounds. He is a very happy, good natured little boy and he and Summer play so nicely together. He is a little too attached to his Mama and does cry alot if she can't hold him when he wants to be held (which is always) but for that to be his biggest problem.... I'LL TAKE IT!!!!