Aaron is having more seizures again. We are once again increasing his Onfi. This is the medication that his body does not handle very well. We have increased it twice and both times have had to decrease it again. He has a lot more trouble maintaining his body temp, his heart rate is low and he is really lethargic. I did not want to increase this med. I begged them not too. Dr K (neuro ) said there isn't much else to do except start another med that has lots of side effects. We are starting very low and increasing it very slowly. I am praying that we will be able to get to a beneficial dose this time.
I talked to Dr O (hematologist ) this morning. They finally got back the lab results. Aaron was low in factor 8. At very low levels this is called Hemophilia (10 or less) Thankfully Aaron was at 40. Normal is 50-100. This along with his Thrombocytopenia gives him a diagnosis of Von Willebrand Disease. He will have more labs to determine the exact type. The main treatment 9no cure) is the med DDAVP. The problem is Aaron already takes this medication for his Diabetes Insipidus (blood sodium). If we give him a higher dose he will not urinate and his sodium level will drop and he will crash and this would lead to a life or death emergecy for Aaron. I pray they determine the type they will figure out a treatment. I LOVE this crazy boy. Just praying and cherishing every second we spend together and as a family.
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