Let me start by saying that we are 100% finished with CDD. If I could convince two insurance companies to refuse to pay for our visit, I would. There were some positives to the day, but mostly it was a colossal waste of time and energy.
We started off the day with Dr Linn-Dyken.She mostly let her resident handle our appointment and came in to talk briefly. She did not discuss any of my actual concerns, nor did she discuss any potential diagnoses. But she did end up diagnosing him with “inattention,” “hyperactivity,” and “impulsiveness.” Not ADHD, no. Just the three components of ADHD. More on that later.
We also saw an OT, who was great. After learning that we homeschool, she gave me lots of great ideas on things we could work on at home. I don’t think she ended up having time to do all the evaluations she planned to do, but was able to tell me that Teddy’s fine motor skills are stuck at about 18 month skill level. Which was hard to hear, since it used to be that fine motor skills were all T had going for him. He had 18 month level fine motor skills when he was 12 months old. So… sigh.
Next we saw an SLP. That appointment was great. She had two students with her, and I decided immediately that every appointment ever needs two graduate students. They skipped an articulation test since we have that under control already, and she did a language test. Which he bombed. And I know that these tests aren’t pass/fail. But wow. The thing is, I don’t think he has a limited vocabulary… but he seems to have trouble understanding us, and he seems to have trouble using his words appropriately. She also diagnosed him with cluttering, which is a rare speech disorder that combines some stuttering with a fast rate of talking and mumbling. She sent us over to some cluttering specialists at Wendell Johnson next door. (We just had that appointment this week – he does NOT have cluttering.)
Last we saw two PTs. He passed that eval, barely squeaking in at the lowest possible score you can get and still be in the normal range. Come back in a year and we’ll see how he’s doing.
When we got home, I sent a message through MyChart (the way we’re supposed to do it) to ask some follow-up questions. a) so… nobody ever addressed my concerns about sleep. Isn’t the developmental delay related to lack of good sleep? Isn’t there a sleep specialist at CDD we could see? b) his chart says “neurocognitive deficit,” I had asked if he has cognitive issues and nobody addressed this, and also his chart at one time said “abnormal brain function,” what does that mean? c) why does he have a diagnosis of all of the components of ADHD but not ADHD?
Two weeks later, no response. So I sent another message, asking if they had received the first. They had. Another week, another reminder from me. Another week, and I called patient relations and got them involved. Finally, a nurse called me to let me know that I ha already received a reply. Um…. no. Then she said that she must have meant that the answers were already in her notes from his appointment. Um… no. Then she theorized on what the answers to my questions might be. um…. not acceptable. Then she said she’d ask the doctor and let me know.
This morning, I had a response in my MyChart inbox. a) she didn’t think the sleep issues were important since we homeschool and he doesn’t have to be anywhere at any specific time. (oh… ok…. so getting small amounts of poor sleep is only important if you go away for school, I get it. Also, who cares about mom, who has to stay up with him all night and is still expected to give him the right doses of meds during the day.) But I can give him melatonin. That’s it. Oh, better, turns out, Dr. Linn-Dyken IS the sleep specialist. b) she doesn’t know c) no response, but her nurse had theorized that it was because he is homeschooled. (Which is why our oldest was not able to get a diagnosis of anything at all from them, as well – he is homeschooled. As though educational setting changes who you are.)
So they can all kiss my white behind. I’m writing a letter to the director of cdd, patient relations, and also the head of peds nephrology.
The one thing I was excited about coming out of our day was a therapy that they recommended called Parent Child Interaction Therapy. They said it could help him with his anxiety and many of his poor behaviors. I was jazzed. Until I read about it. It seems mostly to be something a court orders you to do because you’re a shitty parent. More telling: most of the places that offer this therapy are crisis centers (the youth shelter, for example). I did find a therapy office that isn’t a crisis center that offers it, and we’re on their waiting list but they estimated it would be many, many months. So…
- I still don’t have a handle on the sleep issue and have no idea where to turn at this point. I asked Dr. Linn Dyken for a recommendation for someone else since we’re clearly not returning to her.
- I don’t know where to go for more information on any cognitive issues Teddy may have.
- Nobody seems to be able to tell us more about whether he does or doesn’t have expressive/receptive language disorder and what that means and what we do about it.
- I don’t know what abnormal brain function means.
- I don’t know where to go from here.
- This sucks.
- CDD sucks.
- Don’t ever ever go there.
Our Teddy Bear's Journey 