This past Wednesday I took Kohl to CP (Cerebral Palsy) clinic at Children’s. This was our first time there since our move. Traffic was awful, and I was late for starters. Apparently, I can still get lost even with my GPS, lol. They were very understanding and still got us in quickly. They got Kohl’s height and weight and then took us into a room to wait for the different specialists.
First the CP clinic coordinator came in and told us what to expect. The OT and speech therapist came in and went over Kohl’s medical history, and I added in bits as they went along. The OT and I talked about constraint therapy and casting. She also brought up spasticity clinic and botox. She suggested a new Benik splint that goes down his wrist further and has the metal stay, a new night splint, and a splint for his non-affected hand to do modified constraint at home, she suggested the constraint program at Children’s and didn’t want to cast him for a home program or outside program. She tested Kohl’s fine motor abilities but told me the test score goes by his non-affected hand. Which is kind of dumb. He is a little behind but not too far.
The speech therapist and I talked a lot about feeding stuff. They are really pushing me to increase feeding therapy but I just don’t have the time. We do stuff at home also, so I don’t think it’s that big of a deal. They also want us to see the nutritionist again, because his weights that they have are all over. They are all over because some weigh him on the sitting scale and some on the standing one. Some want him in just a diaper, and others just ask his shoes be off. How could his weights not seem all over the board?
The speech therapist did give me some info on how to get simply thick. We are using thick-it right now. Kohl has dysphagia and aspirates thin liquids. We have to thicken his liquids. Thick-it is a powder and just keeps getting thicker if you let it sit. Simply thick is a gel and doesn’t do that. For insurance to cover it, it has to go through a durable medical equipment (DME) provider. The ones we found that take our insurance don’t have it, and the ones that have it don’t take our insurance. The speech therapist gave me the local representative’s number, and a DME provider that might have it, so I am hopeful that it may work out. It’s very expensive or I would just pay out of pocket.
The PT (physical therapist) and physiatrist (PM&R – Physical Medicine & Rehab doctor) came in next. They watched Kohl walk with and without his brace. Right now Kohl has a DAFO (dynamic ankle foot orthosis) he has just about grown out of. We talked about bracing options. We decided we are going to try a kiddiegait with SMO.
His therapists had wanted to do an SMO (supra-malleolar orthosis) on his non-affected foot also, because his ankle rolls, but the PM&R doctor said “no” because he doesn’t think the rolling is bad enough and could still be considered age appropriate. So for now he doesn’t want to restrict that foot. He was very nice and listened to all I had to say and we talked about the bracing and what we thought would work. He said he thinks the kiddiegait with SMO will work for Kohl, and he said if it doesn’t he will make sure Kohl gets something that does work. This was very reassuring for me. Kohl hyper extends his knee and drops his toes down. I have heard a lot of people say the kiddiegait doesn’t help with knee hyper-extension, so I wanted to make sure we have a back up plan if it doesn’t work for Kohl.
I never actually knew the reasons Kohl needed a brace, other than I could see it was helping him, and the PM&R doctor explained to me the things it corrects for him. The PM&R doctor said we don’t need to see spasticity clinic because he does botox if needed. He said he wants to hold off and see how Kohl does with constraint therapy and that we could cast with the intensive program that Kohl is already going to do, that we didn’t need to do it at children’s. I’m glad he wants to see how the other stuff goes before botox. I think a lot of doctors push it too much. I will do whatever Kohl needs, but I agree that there are other things to try first. The PM&R doctor wants a follow up appointment to see how Kohl’s new brace works for him. He wrote out the scripts for everything we needed. Over all I was very happy with the appointment and the new PM&R doctor. Orthotist tomorrow to get fitted for new braces.
-Jessica
