Infantreflux.org | We have answers finally

This topic has 7 replies, 1 voice, and was last updated 14 years, 7 months ago by Anonymous.

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March 13, 2010 at 4:11 pm #66034

Anonymous
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Isaac had a muscle biopsy done in February. We have gotten some of the results back and it showed that his muscle was only 20% of what it should be on 2 types of muscle fibers (Sorry I know that is confusing but that is the best way I describe it bc I am still so confused myself) despite having normal metabolic tests until this result. Now we are waiting on the rest of the results from the biopsy to see if we can find out why that is happening (the drs really think it is Mitochondrial disease and have started him on the vitamin supplements that seem to help Mito). The drs say this explains all of his issues even the feeding issues! His motility is slow due to muscle weakness which has become very obvious with his new g tube. While we are so thankful to finally have some answers it is bittersweet. We are unsure of what the future may hold for boy of our boys (Eli has physical issues). Thanks to all of you that have followed our long journey and have been supportive!

March 13, 2010 at 7:49 pm #66035

Anonymous
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I’m sorry to hear that they think it’s mito, Sarah. What a long road you and the boys have been on. Are they testing Elijah for the same thing? I can imagine how confusing and frightening everything is. I don’t know too much about mito, and hope that the diagnosis will offer some treatments to make things better for your family. I’ll be praying for you and the boys. HUGS.

March 14, 2010 at 11:19 am #66044

Anonymous
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March 14, 2010 at 2:35 pm #66045

Anonymous
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We are waiting to test Eli until we know exactly where the problem originated with Isaac. I am still in shock over all of this bc we were told for so many years that his feeding was behavioral issues. Recently we were getting lots of pressure to take Isaac to a psychologist and they couldn’t understand why I wanted to wait until the medical problems were ruled out…now hopefully they understand why. My dh and I never gave up on Isaac even though it seemed a lot of the drs had.
Our neurologist said that OT, PT and SP and certain vitamins seem to help but other than that there is no treatment for Mitochondrial Disease.

March 14, 2010 at 3:53 pm #66048

hellbennt
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My prayers are with you as you continue to find answers

March 14, 2010 at 4:12 pm #66049

Anonymous
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I am so glad you have answers now, Sarah, even though it’s so bittersweet.

I have wondered if it would come back as Mito, given that he has had such a tough go with feeding since the gut uses so much energy and Mito affects energy so much. I assume he is on the cocktail now? I bet you will start seeing a difference now.

Praying as you finish your journey in figuring out the rest of the puzzle with both boys and getting the rest of everything together for them so they are functioning their best. ****hugs****

March 15, 2010 at 2:47 pm #66054

Anonymous
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so thinking of you. Please let me know if you ever need any support…..

March 16, 2010 at 4:14 pm #66056

Anonymous
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Oh wow…I am so glad you’re finally getting answers. I hope this means you are on the path to some relief for him. HUGS!!!
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