-Hi Darla I'd be careful with ANY oral feeding. In fact, I'd actually encourage you to focus on self-feeding rather than spoon feeding at this point. In our...
Hi All, We've had Heather wear her O2 at night for the past few nights, and it seems to make a difference. She hasn't needed to sleep in her chair and she...
my son josh had a skin biopsy done and it came back negative, we know something is wrong with him, because of all the other blood tests done (high lactic...
Thanks for all the information. I have called Dr. Cohen's office and they said they would get back with me but that was almost a week ago. Sarah starts...
Hi Kim, My son, Asher, has had blood tests, CSF tests, urine tests, skin biopsy and muscle biopsy. There were some abnormalities in some of the blood and urine...
heidi, My DD is 6 and we have had oxygen her most of her life. As an infant/toddler it was tough to keep the cannula on. Now it is no big deal. Katie has...
Kim, Madelaine had a skin biopsy last fall. It was a very simple procedure-used EMLA cream (topical anesthetic), then the Dr injected lidocaine, did the skin...
I am not too sure there is much to do to help disautonomy, but did speak to Dr. Whiteman about it the other day. He ran a blood test (or more ?) to do with...
She has been 100% G-tube fed for a while now, but the OT/feeding team/GI doc/etc. wants to try teaching her how to eat orally. They know she experiences...
Hi Dawn, There is a technical name for theses birth marks--I think hemangiomas or something like that. I'm not really sure whether they are indicative of mito...
My youngest Molly, (yet undiagnosed) has been running a low grade temp for over four days now. It is abuot 99-100 during the day then goes up to about 102 in...
We got Gracies cooling vest through the Sarah Moody Foundation. www.sarahmoodyfoundation.org. They will supply cooling garments at no charge to the family. ...
They do sell cooling hats, neckbands and wristbands at www.heatreliefdepot.com. These would still cool him, without the weight. As far as the vests go, the...
It could be a virus, but, zachary has gradually developed a regular low grade fever running pretty much consistantly daily from 99.5-100.5 I usually will take...
Grace was initially scheduled for a skin biopsy, with Dr. Cohen. However by the time the appointment was scheduled, to the actual date she was deteriorating...
I would also worry, even if I did not really need too. I know on a "normal" child they don't worry as fast, but with mito things can snowball very quickly. I...
We would like to remind you of this upcoming event. Weely MDA Chat Summer Schedule Date: Sunday, August 1, 2004 Time: 9:00PM EDT (GMT-04:00) We will not have...
Mito@yahoogroups.com
Aug 1, 2004 7:02 pm
42746
We would like to hear stories on how the Mito Cocktail has helped you or your child. It is very costly, yet we will do anything to slow down the process. We...
For Grace, the cocktail saved her liver, if not her life. Before the cocktail, she had progressive liver disease, was unable to tolerate many foods, was very...
We would like to remind you of this upcoming event. Weekly MDA Chats and Special Guest Announcement Date: Monday, August 2, 2004 Time: 9:00PM - 10:00PM EDT...
Mito@yahoogroups.com
Aug 2, 2004 1:03 am
42749
Hi Tamara, It is hard to know exactly how the cocktail has helped Asher b/c it was started only a few months after he got his G-tube. Thus, he was getting much...
Asenath benifitted from the Carnitor when we first began using it almost immediately. She went from having horrible migraines to much less painful ones and...
Tamara, It was suggested we start the mitococktail awhile back but due to my son's volume issue(he was already on so many med.'s and would vomit some out) we...
What ever happened to Dr. Korson's medical talk?? I missed it the night it was on but I had seen number of people who HAD been on who said it was fantastic!! ...
OK guys this is the last camp report from Dream Street. My kids came back piled with stuff!!!!! We almost couldn't fit it back in our van. They got to see...
Dawn, With the mito issues I am not sure when you should have a doc look at her. I have been told the 7-10 days with a fever and then come in if things don't...
Tamara, Both of our kids are on the Mito cocktail and I truly believe that it has saved their lives. Nathan has gained weight for the first time in his life...
Do any of your children sleep walk or talk in their sleep? Would love to hear any experiences as my 13 yr. old is having difficulties. I have somewhere that...
Hey Dawn! My oldest daughter (not affected) does this! She talks (and grinds her teeth) at least once a week. The sleepwalking is disturbing, as she really...
Dawn, My son Josh, not diagnosed yet, talks in his sleep, you really cannot understand what he is saying he just kind of mumbles. The one thing about josh is...
Having problems with message search?
Fill out this form to ensure your group is one of the first to be migrated to the new message search system.
