So. Our evaluation day at CDD

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.
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Update

Been a long time.

So…
Sleep Study, check. (Does have Obstructive Sleep Apnea not caused by tonsils or adenoids. Decided to try respositioning him during sleep first before considering surgery or cpap. Haven’t actually done this, though, because sleep.)

Sleep. Awful still. Just… when I say awful, picture super awful. Picture complaining about your newborn, times 5 years. He doesn’t go to sleep. Even when he’s tired and wants to sleep, he can’t. Then once he is asleep, he wakes easily. And though he’s not an early riser, he IS an early riser when you consider what time he went to sleep.

Evaluations at CDD. Check. This will be its own post. Suffice to say for now, that was a rough day. For me. But even though our appointments were THREE WEEKS AGO, I’m still waiting for some reports, diagnoses, and answers to questions. Because CDD staff evidently just cannot be bothered. I hate them with the white hot heat of a thousand suns.

The new drug for motility, Peracitin, is a MIRACLE DRUG. It’s my best friend forever. Me + Peracitin = BFF. He doesn’t vomit any more. I mean, he still gags on food and vomits, but that’s a mechanical issue, and it makes sense. There’s an obvious cause. He doesn’t do the random vomiting.

Allergy testing. Teddy went for allergy testing and we’re still waiting on results. He had a big reaction to something and ped wanted us to get it checked out.

Audiology. Teddy still can’t pass hearing tests. We took him in in August to the school a few times and the first time, he failed big-time. Went to ped to check for fluid in ears – there was some, but there was also a TON of earwax. Washed out the earwax, gave it a few weeks for the fluid to drain, checked on fluid again, it was mostly gone, did another hearing test, still didn’t pass. Didn’t not pass by much, but barely failing is still not passing. Referred to audiology. Audiology… sigh. He passed the mechanical tests – the “is your eardrum vibrating” and “are the cili in your cochlea waving around” ones (which is where he’s failed before). But he didn’t pass the actual hearing test part. But he obviously wasn’t understanding the instructions, and she stuck with it for far longer than I would have before trying a different method. The other method could have worked, but by then, he was beyond ready to be done. So he didn’t respond to several frequencies, but it remains to be seen whether he didn’t respond because he didn’t hear them, or he didn’t respond because he was done cooperating. We’re supposed to go back in 6 months, as though he might be more cooperative at that time. (yeah, it’s ok, you can laugh.)