- Pregnancy
- Baby & Toddler
- Parents
- Getting Pregnant
- Baby Names
- Product Reviews
-
Registry
- Community
-
More
Want a personalized experience?
Download the free app
February 2012 Moms
preggersINschool25
member
Options
Appointments Update
preggersINschool25
member
I hope you all don't mind, but I copied this from my blog.
This week has been busy with appointments. We were down at Riley's
Children Hospital two times this week. We met with Sara Parker (SPL) 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, Dr. Mandy Harris, 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...
This discussion has been closed.
Re: Appointments Update
Glad for the update, and hopeful for the supplements.
I have no idea if this would be counter to recommendations, but when DS was refusing to eat but would take meds, I tried giving him squash puree (because it was so smooth) with a medici