Speech, Endocrine, Neuro and Pediasure

Auditory Processing Disorder is a disorder where the brain does not process information that is taken in and received correctly and does not process information that it is trying to put out correctly. Michael finally had the speech evaluation for speech therapy that we have been trying to get forever. The speech therapist found that Michael's APD is more severe than we had thought and was glad it was diagnosed; she will definitely be recommending speech therapy for him. The APD affects many facets of his communication which includes verbal but is not limited to just verbal communication; it also affects many areas of his academics including phonemics, writing, spelling, vocabulary, listening, short term memory, instructions, information retrieval and others. I was unaware of the fact that speech therapy could help Michael in this. The public school had diagnosed Michael years ago, and apparently should have referred him to speech therapy and didn't. It is very upsetting to find out that he could have been receiving help for this for the past 6 years. I can't even tell you how urked I am to find this out. What a disservice they have done for my son who clearly was having trouble and could have been helped if they had listened to me the parent when I told them all this so long ago. APD has been described to me by Michael as like trying to communicate information to someone through the distortion you might hear on the radio when you are trying to hear a song but there is feedback and the signal is distorted and you just don't get all of what is trying to come through that signal. Parts of the song get stuck in radioland and are just missed, so the meaning is missed, and trying to talk to someone or understand someone through all of that loses important meanings. The only reassurance is that at least we know and understand better now. We will include that with all the other therapies he needs (PT, OT, ST).

We is having numbness and tingling in his hands and fingers with hypersensitivity and pain in his fingers, which could be from his seizure medication or from losing potassium. Neurology wants us to increase the potassium in his diet to see if that helps. He certainly is on enough different medications that could cause him to lose potassium (Miralax, Prednisone, Topamax, and Lasix among others). I hope it helps. We will add that to his already specialized diet. He is on low sodium and no added salt for his kidneys, low glucose for his elevated blood sugar due to the prednisone, and now added potassium as well. Neurology will follow him at least.

Michael saw endocrinology. We have a praise report here. Michael's thyroid levels have been stabilized for a few weeks without having to increase or change the dose on his Levothyroxine. Praise the Lord. Endocrinology also wanted Michael on growth hormone since October. It has been an argument with CCS ever since, and we know they received all of the information and got the right labs and had the information. Nordicare thankfully provided Michael with 2 months of free medication for the growth hormone. Michael was fortunate enough to have growth hormone for 2 months in 2008 (about a year ago) as well, so now we have it well established that he responds well to it because he grew both times he was on it. The case manager and endocrinologist said they would go to bat for us to try and get an authorization from CCS and send a very detailed letter of medical necessity. All of his growth factors and levels are really low and his bones are now 5 years behind (getting worse as he gets older).

The same endocrinologist said he would see what they could do about getting Joseph into endocrinology for his own growth disorder. Isn't that wonderful? Also, Joseph now has Pediasure praise God. He seems to like the chocolate and vanilla really well. We hope it will help with the weight gain he needs so well.

Well, we have been waiting for the SSI application for Joseph for months. We found out that the SS office dropped the ball. They had done nothing with it, lost some of our papers and had it sitting all this time on someone's desk. Uggh!

God bless you,
Jennifer Richardson RN
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