Nothing happened. Yep, you read it right…nothing. We are right now exactly where we were yesterday.
Ryan’s team assembled. Dr S. psychologist, KC his in school therapist, J who performed the functional behavioral analysis and is seeing Ryan twice a week, M Ryan’s case manager, along with Ryan and I sat down. We are being denied TSS by the grand poobah, Community Behavioral Health. I think the CBH people wish I would shut up and go away, but after investing over a year pursuing this, I am here to fight. The Dr is putting together a new report with Ryan’s recent behavior charts from school, letters from his first and second grade teachers, the results of the functional behavioral analysis, the results from the autism tests they have given the teacher and myself to fill out repeatedly, and the fact that CHOP is going to evaluate us in April for a PDD diagnosis. We have repeatedly said in the mountains of paperwork that Ryan is not a candidate for ADHD medication right now because he is off epilepsy meds and the ADHD meds lower the seizure threshold. The consensus in the room is that Ryan needs TSS. She is a strong advocate for Ryan and feels he is a candidate for TSS. She wants to do everything she can to help us get what we need for him. If they come back with another no the team is going to help me file an appeal.
Last night as I was full of anxiety about the issue, my husband said the best thing he could say to me. He said, “We fought this hard for all these years, this is just another hoop to jump through although it has been the biggest to date. You walk in and if they deny him, we put on the fighting gloves, and keep making the phone calls and filling out forms till we get the help Ryan needs. Till then he is not in danger and we do the best we can.” I knew I married him for a reason.
I am trying really hard not to give in to the frustration and give up hope.
Now, remember, I’m not a doctor – I just like to play one when my husband and I… nevermind. Anway… when we were discussing ADHD medications, seizures were a concern. Dylan has had seizures and they are a part of the genetic deletion so we need to be careful. We discussed it with his developmental pediatrician and neurologist and one of them (I can’t remember for the life of me which one told me – I think it was the neuro – both at CHOP) told me that ADHD medication does not in fact lower the seizure threshold. ADHD and seizure disorders are often co-morbid so the question actually is… which came first the ADHD medication or the seizure? Because of that… there is a seizure warning on ADHD medication. You should talk to your neurologist (since every kid is different and every situation is different) and see if that applies to your son or not. {{{hugs}}}
This is BS…. I’m so sorry you all are having to continually fight for what’s in Ryan’s best interests. Sending love and support your way!!!!
your husband was right. so sorry you have to fight so hard to get him what he deserves, but e is right. just keep fighting. good luck.
Is money the big reluctance? Or is it the unfairness of someone getting “more”? The sad thing this highlights is just how many kids are probably going without services. I mean, for some, their parents aren’t even trying, for others, they have given up or don’t have the time/energy.
As a college professor I can say that 5% the kids getting special services don’t seem to need them at all (like they are obviously scamming the system or the diagnosis doesn’t apply to my class at all) and about 5% of kids not getting them could probably use them, but either don’t want to or don’t know that they would potentially qualify. The system is flawed for sure…although it still does work fairly well for about 80-90% of people that most need it, I think.