tag:blogger.com,1999:blog-6645130.post111614186522546887..comments2023-07-02T11:59:05.334-07:00Comments on Jenelle's Journey: Bad day - need to talk it out...Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-6645130.post-1162160940960912332006-10-29T14:29:00.000-08:002006-10-29T14:29:00.000-08:00Thank you for your comment about Mito. I wish you...Thank you for your comment about Mito. I wish you luck and success with your daughter's g-tube, its worked miracles for Jenelle.<BR/><BR/>Yes, Jenelle has been tested for Mito disease, and it has been ruled out. We tested the Mitochondria in her bloodwork which was negative, and her Neuro does not see a reason to do a muscle biopsy. <BR/><BR/>Thanks again, best wishes to you and yours!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6645130.post-1162007933265379382006-10-27T20:58:00.000-07:002006-10-27T20:58:00.000-07:00I came across your daughter's site searching about...I came across your daughter's site searching about g-tubes.My daughter is getting hers in 5 days.She has Mitochondrial disease.This is why I am writing.Your daughters multisystem problems G.I. ,epilepsy.metabolic acidosis(unknown metabolic disorder?) hypotonia ,etc lends to this suspicion & /or possiblity .You may want to check out www.UMDF.org On information about this disease.Has someone genetic/metabolism worked her up for metabolic disorders ?Children with "Mito" can have secondary metabolic abnormalities .they do need attention as many need special dietary interventions to control.I felt compelled to write as you are searching for answers for your beautiful daughter & I only got confirmative diagnosis after a long search & many doctors ,in the end of my dd 4 th year.There is no cure currently but there are different treatment modalities being tried.But those versed in mito(there are only few) can shed light & may possibly head you toward a more definitive diagnosis.I was looking for a place to e-mail privately.I hope you do not mind this,I just felt this could be a possiblility.<BR/>take care & best wishes fron a well meaning MommyAnonymousnoreply@blogger.com