Maria decided to start her spring break with a 7-hour marathon of therapies, doctors and x-rays. That girl is such a workaholic!
The big thing today was we met the new physiatrist. He’s the one we’ve heard is really negative so we went in prepared.
In walks this morose man. The instant he sat down, Maria alerted and reached out to him and she’s a pretty good judge of character. He did say a few negative things. He didn’t like Maria’s stroller, another one who says it doesn’t provide enough support. If the PT who has been with Maria for 5+ years thinks it’s OK, that’s good enough for us. He pooh-poohed the bike, pretty much saying it’s an expensive toy despite the fact we say immediate improvement. He thinks Maria should be in a special needs school instead of public school – we understand the trade off and feel what she gets from public school is better. And one of the drugs (more on that later) he prescribed is supposed to blur vision, and he said that wouldn’t matter because Maria already has vision issues, which was a pretty crappy and insensitive view.
However though he was somber with us, he was good with Maria. He smiled, talked in goofy voices and didn’t mind when she kept grabbing and him and trying to bite him. He was a little rough with her but that’s part of what he does – tests the limits of her joints and tendons. He spotted a lot of little things about the way she moves and stands and so on and had some pretty good insights.
Overall we liked him, but he did have some troubling conclusions.
He thinks Maria’s left hip is migrating out of the socket, something which happens to kids like her because their tendons get too tight. He sent us for hip x-rays to check it out. He prescribed new AFOs though we knew it was time for those. He prescribed a sort of soft trunk brace which will help her when she is sitting or standing. We aren’t as happy about that but he feels if Maria isn’t worrying about her trunk she can focus on head control and not hunch forward so much, and then when her neck is stronger we can stop using the brace. We also won’t use the brace all the time, only on occasions like when she’s sitting in her chair to eat.
He also wants to start Maria on two new drugs. He mentioned baclofen but said it can also increase seizure activity. Instead he suggested Artane which is less effective but shouldn’t trigger seizures. This medication should reduce some of the tightness in her muscles. That involuntary flexing interferes with Maria’s ability to control her own movements so he thinks this will help her move better. We should see results immediately so we can decide whether or not it’s working. We did talk about the baclofen pump Maria’s neurosurgeon suggested and he said if we find the oral drugs work, the pump is better because it releases a steady trickle of medication directly into her spinal fluid (fun!) but it also means major surgery to implant the pump in her abdomen (also fun!).
The other drug is amantadine which he thinks may help with her auditory processing disorder. It’s a drug used to treat Parkinson’s and he says doctors noticed patients who took it experienced improved hearing. The weird thing is I can’t find anything on the internet talking about that.
We want to touch base with the neurologist before adding these drugs to the cocktail and the plan is to start one, try it for a while and see what happens and then add the second one later. We really hate the idea of more drugs, but if they help then we are all for it. As much as we hate the medications she already takes, they are certainly better than seizures.
Maria continues to have a few seizures every day. Cathy is going to check again with the neurologist to see if the blood tests have come back so he can decide if he needs to increase her dosage. In the meantime we are all stressing out about it.
We got one piece of good news though. It turns out Sue’s problem was not a blockage just good old stress so she didn’t have to get another stent after all.