I just spoke with the neurologist...Brayden does not have this disorder. The neurologist and neurogeneticist were surprised his blood work for this disorder came back normal, very normal, especially since his MRI showed a "classic case." If he did have this disorder, the blood work would clearly show it.
The plan is to see the neurogeneticist to review the MRI further and to possibly look at other metabolic or genetic disorders since there seems to be a "pattern".
We are also talking with the GI and neurologist about a ketogenic diet. Scheduling a visit with the ketogenic clinic. This diet is used for many reasons (extreme vomiting, seizures, possible disorder), we may try Brayden on it. One of which could have been because of this metabolic disorder.
The neurologist was pleased that Brayden did not have this disorder since it is degenerative (as are we) however she could not quite answer my question if Brayden's brain is getting worse or staying the same. Her answer was that he has such little white matter and very thin, as well as missing parts, it is hard to tell.
For now, prayers answered that Brayden does not have it. We are still looking for some answers and adding more people to see to Brayden's list.
6 comments:
thanks for the update!!! praying for wisdom for everyone!
I am celebrating that it wasn't what they thought. But I am sure a name/diagnosis would be so helpful to you. I am praying.
Praise God for this answer to prayer! I will continue to pray as you explore the diet and add some new docs to the list. Waiting for answers can be so hard, I pray that God will give you have peace while you continue to wait.
Hi! I have been following your blog. So glad to hear there is good news. My husband and I recently adopted a little boy with some of the same conditions as your baby. I would love to hear from you via email to talk more about ACC and so on. My email is thefoughts@yahoo.com. I too have a blog. Please check it out if you have a chance. Praying for you and your family :)
I am happy to know that it is not what they initially thought, although I really have to laugh at a degenerative disease...as if life isnt already. A ketogenic diet may not be a bad idea, just to keep Brayden healthier without having to rely on so many meds. I can't wait to hear more about it.
Praise God he doesn't have this disease, but boy I'm sure you wish you had an answer, praying for you.
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