okay...the more severe issues that require ER are what I call a metabolic crisis and usually require IV fluids to bring them back to baseline. But the crashes...
Deb, have you tried getting him into Rainbow babies in Cleveland since rainbow is the hospital that actually does the biopsy? It is just a thought. That is...
It seems to me that everyone has a different definition of a mito crash and that definition can change within your own self/child. For us it is when Rina has...
A friend just got some absolutely adorable g-tube pads. The website is: http://www.jacksonpresleydiamond.com/cloth_g-tube_pads.htm Just wanted to share. :-) ...
Hey, This topic came at such an appropriate time for me, Jackson, who is nine and still undiagnosed has been having such a hard time for those of you in Mass....
My key board wss down yesterday so I could not write. I love and admire this movie..it is and coontinues to inspire my heart. I also love the movie about the...
Wow Jennifer I read the story about the little boy he is just so darn cute. I was worried after Aaron get his PPV 23 shot and this just scares me even more. My...
_Angels for Hope_ (http://angelsforhope.org/) _Angels Of Destiny - About Us_ (http://www.angelsofdestiny.net/about.html) _GOD'S LITTLE GIRL at One True Media...
_Children's Disability Special Needs Discussion List Support Groups_ (http://www.comeunity.com/disability/speclists.html) **************Get trade secrets for...
Hi Wendy, May I ask you what kind of mito problem does Colby have? The reason I ask is that my son has very similar symptoms as Colby. Your caringbridge site...
Hi Diane, Colby has unspecified mito myopathy. He had a skin bx that said Complex I
but then had a muscle bx that said he mito myopathy and all the complexes...
I was wondering if any of you can give me ideas for a Make A Wish trip for Connor. We are working with the "wish granters" and they said to ask around to other...
Spent this weekend organizing all the boys medical supplies for Victory Junction Camp this coming Sunday-Thursday. Each kid has there own large box. It is...
... working with the "wish granters" and they said to ask around to other people with kids like Connor to get some input. He loves the outdoors, swimming and...
Google has implemented a new feature which enables you to type a telephone number into the search bar and hit enter, and you will be given the person's name...
Hey! A year or so ago someone posted a site on here that made shirts for special needs. They had various sayings on them and the lady that made then could even...
EDIT: Also, if anyone knows of a good place to make custom shirts that doesn't cost a fortune let me know. That may be the route I have to use. Thanks again....
www.Zazzle.com is a site where you can custom make your own shirts for a reasonable price and the shirts are very good quality. You can upload your own images...
Here is the website I went to. It has a link to purchse Mito awareness items. Melissa (GA2/MADD) and MOM to Zachary- 2.5 yr - Pyruvate Dehyrdogenase...
Hi Sharon Happy you had a positive appointment day. Those long days can be torture! We've also had similar growth issues with Nick, our oldest. He was ...
I have FINALLY set the Special_Tees t-shirt shop up at: http://www.zazzle.com/special_tees They are tongue in cheek shirts made up based on what we experienced...
Hi~ I remembered seeing a post not to long ago about strollers for bigger kids, I just wanted to add a site to check, we just bought our daughter a baby...
Hey guys! I was just wondering if any of your kids have ever taken oral ciproflacin? Sam has an ear infection and we found out it's pseudonmonas and it's...
Ok, that is freaky! My number led me to things I have written on a support group, onto things I have written, and all kinds of stuff about me... QUESTION:...
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