We had been considering starting Grace on night feeds to help with her hypoglycemia, but decided not too because the risk of potential side affects. Her GI...
Cute picture, thanks for sharing. Love the snowman hat, how cute!!! Carrie MSN Premium helps protect against viruses, hackers, junk e-mail & pop-ups....
My daughter sees Dr Bruce Cohen at the Cleveland Clinic in Ohio. I'm not sure he is seeing new patients already with a dianosis, though. You probally could...
We tried the feeds again last night. Everything Barb warned me about just about happened. The night started out great, then I heard him wimper a little...
Hello all, I was just wondering how small of a virus have you all seen regression with? Grace has had a very small head cold for about two weeks. This cold is...
Geri-Anne, Sorry to hear Wyatt didn't do well with the feed. I guess you never know until you try, huh? Isn't it ironic that when you want your kid to have a...
Anne, If you have DME coverage to your insurance, and your doc writes a script ordering a pulse ox, your insurance has to cover it. You may need to appeal the...
Sheldon can have regressions from small viruses. I'm not sure that the magnitude of the regression seems related to how bad the illness is, it's hard to tell....
Dear Keely, I am so happy to hear such good news and yes Leanna's urine is very dark colored from the B complex and that is ok because her body gets rid of the...
Dear Carrie, I have learned one thing for sure from my girls, the severity of the virus is in no way related to whether it causes a crisis or regression or...
We see this all the time as both Asenath and Zipporrah have some form of stroke episode/regression with every virus, large or small. Usually the smaller the...
What an awesome picture. Thanks for sharing. Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site:...
I don't recall exactly how long it took for Grace to start improving from the cocktail, but it was also much sooner than three months. We were amazed just...
Asenath also had a VERY positive and fast reaction to the Carnitor in particular. We also began Citra-3 for her metabolic acidosis at the same time so not...
Geri-Anne, I am sorry to hear about your tough nite with Wyatt. I hope last nite was better=) Something to consider would be to start with a much smaller...
We ended up trying the feeding again last night. Once he finally fell asleep it worked like a charm. He stayed asleep. We only did a half a can of pediasure...
Hi Carrie, We notice the same thing with Collin. He had a small head cold that everyone had, very minor, and for him it was a major setback. We escaped...
I am mostly a lurker on this list as my son is no closer to a diagnosis than he was 2 1/2 years ago. He did just have an EEG and the neurologist told me that...
Abigail's biopsy results have slowly been trickling in. SO far we are inconclusive. We are still waiting for the result that her dr and I have put real stock...
Brandons been on the cocktail (CoQ10, carnitor, Vitamins B1,B2,C and E) for almost a week now, and has had steadily worsening diharrhea... its to the point now...
We are finally home. Of course he did not have a seizure. I'm sure he will start having seizures again since we are at home. He was exhausted today and...
It could be the carnitor. If the dose is too high, it can cause loose bowels and a "fishy" smell. Check with your doctor. HTH Kim - Mom to Lauren and Lindsey...
Hi there! In re the cocktail causing loose stools...Abigail has the same issue with carnitor. Thus we can only dose her twice rather than three times a day....
Hi Keely, Carnitor is the one that can cause diarrhea. You may want to try backing him off it to see if it's the one that's causing the problem. My son can't...
... Glad you are home safe and sound. That stinks about the reflux med but glad you got it fixed now.Hoping he can stay seizure free for a while!Rest up! Dawn...
Darla, have they ever told you what type of vasculitis Aseneth has? we just went back to hte neurosurgeon for my sons vascultits and I forgot to ask him that...
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.
