Anne, I have absolutely nothing useful to contribute,,cause my boys don't have g-tubes. BUT,,,,I did get a laugh out of your subject line !! I don't know about...
Darla I cant even imagine how hard this must be for you. Prayers will be said for you, Luke and the rest of the family Becca ... From: Darla Klein To: List...
So Tyler is 17 months, and as yet undiagnosed (BRandon his brother, is 3.5 and has confirmed Complex 1 Deficiency). Tyler has had a few 'soft' signs, but...
Hi, FWIW, I'd take him to the hospital now... if he is not eating and can't keep his blood sugar down - I'm assuming he's not g-tube fed - so there's no way to...
AReckling@...
Jul 1, 2006 5:06 pm
63045
We were told if hailees sugars were that low to go to the er, than they can give iv fluids to help maintain fluids until vomitting stops. Hailee finally...
Keely, Dr. Boles always had me give Kira our Cyclic vomiter 2 oz of coke every 30 minutes when she was vomiting and have her suck on popsicles or cool aide ...
... Yesterday morning his blood sugar was 37. (yikes!) Did you call the doc? Have you had short chain fatty acids checked? C8 is associated with low blood...
Darla, I know how you feel. My daughter Holli, who just graduated in May and moved to Mackinac Island (a resort area in Michigan which is where we live.) It...
Ken, That really stinks! I'm sorry! I didn't know Rhys had lost his tube altogether. Is the "BLUES" BCBS? Chelsea has been bounced between medicaid and another...
We have been talking to the doctor daily (Im so thankful for her, she keeps in touch even over the long weekend). By the time I got her on the phone yesterday...
Darla, I empathise with you totally. My eldest, Rhys who is 19, has recently taken some time off his studies to work in a summer camp in Minnesota. However,...
Darla, I have felt those feelings you have, multiplied by 2 from the beginning of last year. Both my children moved away at the same time to go to University...
Thanks to everyone for the support, comments (shared stories), and encouragement. I spoke to my son today and the first 24 hours went well and thankfully he...
Hi all. We just got a call from the Cleveland clinic with my child's muscle biopsy relults. The results showed defects in compex I, II, and III. he was put on...
In a message dated 7/2/2006 1:43:52 A.M. Central Standard Time, ddsdesign@... writes: I also have an upcoming visit with Dr. Korson in Boston, Is he...
hypoglycemia - low blood sugars - are never a good thing and can indeed trigger a "mito crash". people like richard boles in ca (cyclic vomiting guru and...
Hi all - I'm cleaning up papers from the mito conference and want to pass this info about a Co Q trial on to anyone interested. My kids won't participate given...
Oh Anne, thanks!!! This is great! I live about 2 hours from Gainesville, FL,
and my husband said that I could contact the clinician and get rolling with
the...
I just wanted to let everyone know that our little Caleb is walking!!! He is sooo proud of himself and so are we! He is 15 months old so he is at the high...
Yeah, that is awesome news. Hailee didn¹t walk until she was two, but no biggie.... Melissa and hailee Http://www.caringbridge.org/az/hailee Re: [Mito]...
Hi Sheryl, I just started down the MITO road myself in the last few months, and my son is 17 years old! 17 years of Drs. and specialists and new medical...
When did you get the final date for travel? Dr. Shoffner's office is saying end of July but our son's Echo and EKG won't be done until July5th (and they know...
Darla, We have found that gatorade does increase Alex's gas. As far as pedialyte-it does not have the same glucose (sugar) as gatorade and was not advised by...
Hi Lori, I am so glad to hear from you! My Zach has tics, seizures, very low tone, IQ of 48, osteoperosis, Gastric problems (severe reflux and constipation to...
Katie, We are actually her in Atlanta now we live in NJ. The reason they ask for all of that is for anestesia. Kids with Mito can have problems with their...
Hey, sounds alot like my Zach. As time goes on, more problems have popped up or become more severe. We are now in a wheelchair for any distance. I have put...
Jen, He had a fresh muscle biopsy in Cleveland Ohio last summer. ~Norma www.codyspencerfreymuth.com ... little one. As far as the muscle biopsy not giving you...
To everyone planning a trip to Atlanta here is the information that I have come across. I did extensive research on the area, hotels, car rentals, and air fare...
Thank you! This makes sense to me now. I am so looking forward to next year's conference!! ... public ... a ... every ... with ... had a ... made ... double ...
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