Figuring things out for Colin

We had Colin’s follow-up appointment with the developmental pediatrician, Dr. E, last week. He answered every question I was wondering about in this post, and we are feeling a little better about things.

When Dr. E initially diagnosed Colin with FAS in May, with a secondary PDD diagnosis (pervasive developmental delay), we were a little overwhelmed. He gave us some worst-case scenarios and I was pretty upset, so my friend Susan stood by my side and referred to him as “Dr. Doom & Gloom.” That’s kind of how I felt about him at the time, but Christian pointed out how much time he spent with us, etc, and that he really wasn’t so bad.

This appointment went much better. It was not all positive, but we feel like he really knows what he is talking about, and that he has a long-term plan for Colin. I think before we were just so shocked at the FAS diagnosis that we didn’t want to believe Dr. E. We recently found out that Colin’s birthmom drank much more than she admitted to us though, so now we are more sure that the diagnosis is correct. We plan to do all of our follow-up with Dr. E rather than the doctor who diagnosed ARND and the genetic deletion. (YEAH! We get to drop a specialist! Woo hoo!)

Because we had so many questions, I e-mailed him before the appointment. Yes, he gives out his e-mail address and answers his e-mails HIMSELF, so that makes me like him even more. 

We told him that we had gone to see Dr. W for a second opinion, and that we were wondering if we would be better to go with the FAS or ARND (alcohol-related neurodevelopmental disorder) diagnosis. It turns out that Dr. E knows Dr. W *very* well. Dr. E studied under Dr. W and they have breakfast together every other Saturday. Dr. E shared with us that he has a 20-year debate going with Dr. W about this very subject. With an ARND diagnosis, essentially a doctor is saying this child had the behavioral characteristics of FAS and the associated brain damage, but he does not have the physical characteristics (wide-set eyes, low-set ears, etc). Dr. E’s opinion is that the child should still have an FAS diagnosis because we need to treat the behaviors and cognitive issues, and that we really don’t care if he has wide-set eyes or low-set ears. He says that an ARND diagnosis is half a diagnosis, which will get Colin half of the services. So, it seems like we are better off going with the FAS diagnosis.

On a positive note, he said that Colin does have some very good skills. He has good cognitive skills and a sense of humor. He said he would not be surprised if Colin becomes the class clown someday. He does feel that he will eventually be diagnosed with ADD/ ADHD. He pointed out that while Colin was in the exam room, he did.not.stop, and that’s about how he acts every day. He definitely has some hyperactivity.

As far as the genetic testing, Dr. E said that he would have suggested that eventually for Colin. He said he could just tell that we were so overwhelmed with the FAS diagnosis that he did not want to throw that into the mix just yet. As he is also a geneticist, we can do our genetics follow-ups him. We asked him if Colin needed the full-day developmental assessment that Dr. W recommended now, and he said he thought we could wait until kindergarten or first grade. We also asked if he needs to see an opthalmologist now, and he said we could wait a few years for that, too.

When we visited Dr. E in May, he recommended an Applied Behavior Analysis (ABA) school for Colin. The schools are 20-35 hours a week, and we were not sure that we were ready for something that intense for our two-year-old. We wanted to just try regular therapy first. Since then, Colin has been working with an occupational therapist and a developmental therapist weekly, but they have both told us that they do not feel like we are making progress. They are now they are recommending we go the ABA school route, too.

Christian and I toured three ABA schools last week. We think we have made a decision, but we’re wavering a little between schools two and three (we HATED the first one). Unfortunately the one we think we like best is the least convenient geographically. It’s not a bad drive from Christian’s work now, but his employer is talking about moving offices in the spring. I’m sure whichever of the two schools we choose will be fine, but it just feels like such a big decision right now and it has us stressed. I’m trying to just remember that we are lucky to be in an area where we have our choice of ABA schools. Some more rural areas don’t have them at all, or they have them but there is a huge waiting list. We’re also lucky to live in a state that has an autism insurance mandate (PDD is technically an autism diagnosis), so that we can get it covered by insurance. We will have to pay Colin’s $5,000 medical out-of-pocket at the beginning of each year, but that’s nothing when we consider that these schools are approximately $100,000 a year.

The school we think is our first choice can’t take Colin until the end of October or beginning of November. I don’t know that I will really be relaxed until the actual admission date comes around, but Christian and I have given ourselves a self-imposed deadline to to choose a school by the end of this week. I’m hoping making that at least making that final decision allows me to relax a little.

Considering everything, Colin is pretty high functioning. Our hope is that by getting him the help he needs early, he will be on track to start public school in kindergarten or first grade.

Now we just need to find a pediatrician… I’m hoping we can figure that out this week, too. We interviewed one pediatrician two weeks ago, one on Monday, and we are visiting our final candidate on Thursday. We had REALLY hoped we would have all of the stressful stuff done by the end of August, but unfortunately it looks like we have to let at least a few days of September creep into the mix. That’s it though. We are DONE with stress after that. (Famous last words, right?)