Eur J Paediatr Neurol. 2001;5(3):127- 31. Congenital disorders of glycosylation (CDG) may be underdiagnosed when mimicking mitochondrial disease. Briones P,...
That's actually a litlte strange that she can do sippy's without aspirating as you have to extend your neck to use them. My daughter also has low muscle tone,...
PS when doctors hear that Rachel takes pulmicort daily they always assume athsma but it's relaly recurrent airway inflammation due to chronic micro-aspiration...
Taylor, I am so sorry for your lost. Everytime i read a post like this  i just cry and cry .. i look at my angle eyes, Regin ,and give her a kiss. is that...
I was wondering if any one watched this .. ITs interesting bc my son in the spectrum., sensory intergration, and Regin is showing signs of that too.. so i...
I am so sorry to hear about Jaspar's passing. What wonderful memories you were all able to create that day. My God give you strength. I will keep your entire...
Please pass along to your family how sorry we are to hear about Jasper. Let them know that they are all in our prayers. Another Angel has joined our...
Susan, we already have had extensive allergy testing by a local immune doc. Do you mean there is more? This doc is the one who recommended the testing. Also,...
Hi Kim, Â You can't always see aspiration, Our daughter Megan (3) started choking on clear liquids, a year ago, we had a swallow study done, and she had...
I am sorry for you and your family. Our prayers go out to you all!     Wendy Mito411 Volunteer Coordinator & Chairperson mito411@... ...
Okay I have been denied 3 times (by Texas Medicad), and I have an appeal in 2 weeks. They basically have said in not so many words that it is just the cost, ...
You need to make it seem as if it will be in their best interest to get the bed. If she falls she will be taken to the emergency room. If she is tube fed and...
This was so true for us! Sophie was tested for CDG 3 times before we got our mito diagnosis. CDG fit her almost perfectly!!!! Meagan, mom to Sophia, 4,...
thanks, I will definetly start the list. My last letter was 2 pages on all her medical issues, her history in other beds (she almost fell out of, ect.) I am in...
I am so sorry to hear of your families loss. You and your entire family are in our thoughts and prayers. Kelli Mom to Christopher 6 years old ~ Mitochondrial...
Hi, Hi everyone I hope those of you who can will be able to enjoy the fourth. I have a question for those of you who have taken your kids to urology. Jackson...
mary kendyl's chromosome test results all came back normal. would that rule out mito dysfunction/disease? anyone out there that had a normal chromosome...
Colby's chromosome test was normal and he had a positive muscle biopsy for
mito myopathy so no the chromosome test does not rule out mito.    ...
hi! i started reading about colby. i am very interested in your situation b/c he seems so much like my little mary kendyl. we now found out she has been...
We had a very interesting visit with Dr. Rothner yesterday at the Cleveland Clinic. Pretty much within ten minutes the neuro (who specializes in migraines and...
Darla, I'm glad you had such a good appointment at CCF and that some more definate answers are coming finally. It's nice that you got to meet Gracie's kids...
Out of curiosity I was trying to figure out why in the summer (but much less in the winter although she still has trouble with edema) Rachel can in one day...
Glad to hear Asi got to play with Gracie's daughter and have some fun. Also
glad you are having a successful trip to Cleveland. Good luck with the rest
of the...
I expect to pass through this world but once; any good thing therefore that I can do, or any kindness that I can show to any fellow creature, let me do it now;...
Glad to hear of progress....and optimism! Wish YOU were feeling better- not sure I could get through appt with major health distractions myself! Safe travels! ...
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