This week has been busy with appointments. We were down at Riley's Children Hospital two times this week. We met with the Speech-Language Pathologist (SLP) on Tuesday to work on Grant's feeding issues. She wanted us to stop offering Grant water at meal times and instead offer the water between meals. Other suggestions included going back to his smoothie drink (4oz of stage two baby food or baby yogurt mixed with 2oz of formula) during meal times and offer him crunchy things like puffed Cheetos or toddler veggie sticks. Feeding is still a struggle, but he does usually take a little bit at each meal. He is taking around 3 feedings to finish a 4oz jar of baby food. I have also been trying new foods, but nothing has been the magic ticket. I have also found out that he is not interested in grape juice. I plan on trying some apple juice next.
Then today (Thursday) we were back down to Riley to meet with the neurologist and the pediatric surgeon who did Grant's G-tube. The neurologist, told us the results of Grant's spinal tap. He had quite of few of his amino acids high, the most significant being his alanine. It was explained to me that alanine measures stress in the brain and can indicate a possible mitochondrial or metabolism disorder/disease. Unfortunately, those conditions cannot be cured, but could possibly be helped with medication. We also found out his MTHF or 5-Methyltetrahydrofolate was low. He was at a 42 (I'm not sure of the units) and I was told 40-60 is low, while 60+ is acceptable. In the last 5 years there has been new research that has shown that patients with similar values as Grant have had their neurological symptoms improve following folinic acid therapy. We were told that there are no harmful side effects to treat him, so we are going to go ahead and do that. She prescribed 4 different vitamins: Leucororin (folinic acid) 3x a day, Carnitine 3x a day, Riboflavin once a day, and CoQ10 2x a day. It was nice to have a glimmer of hope that he could make some improvements. I'm trying to not get my hopes up, but I am glad to have something new to try. She said that if he improves that it would be in a few weeks. If he does improve, Grant will be apart of the very small group that is able to find some sort of diagnosis through a spinal tap. There are only 4 people that she is currently treating for a folinic deficiency (all of which showed an improvement folinic acid therapy).
The last appointment wasn't very eventful. The pediatric surgeon said that his g-tube looked great and he could take baths, go swimming, or do whatever he wanted. We only need to go back to see him as needed. Yay! Next time we go back to Riley is May 17th. I will be happy to stay in town for a while!
Now hopefully all these new medications will be covered or are inexpensive because I haven't tried to pick them up from Walgreen's yet...
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