Hi Thea is only tube-feed at nights and when she is sick, we add something called maxijul in her food, it is a powder with more carbohydrates. Thea learned to...
Tracy, That would be great if you could let me know the particulars. Did you have to go through the PT for this or OT? Chantalle Mom to Jayden, 5 years old...
Marlene Thats really nice to know that Thea was able to get out of using diapers, I do hope Leyla will be able to as well. Does Thea also have limited mobility...
Good Morning, I have a friend in Denver, CO whose son, Eli, has Leigh's disease. This disease is fatal, and usually kids like Eli pass away around two years of...
Hi, I was wondering if any of you have experience with meletonan to help promote sleep? My daughter Hannah needs it orally instead OF PILL FORM aNY IDEAS?...
Hello Leyla has quite alot of Melatonin every night to help get her off to sleep. We are allowed to give her 2 capsules worth which is 6mg and then if she...
My son uses Clonazopam to go to sleep but I think it is more of a muscle relaxer than a sleep aid. I never thought of meletonan for sleep aide. My son would ...
My daughter sometimes gets the clonazapam to help her sleep also. The meletonan was suggested by her nurse, and doctor o.k.d it it is just one you go to the...
As I understand it, melatonin doesn't have to be prescibed as it is a natural substance secreted by the body. You can either buy, or have it prescribed by the...
I have two questions 1: what is cloral and the next one is for some one who said their child took medicine that they sometimes give chemo patients for nausa...
Tracy, Chloral Hydrate was prescribed by Lily's doctors to give to her to help her sleep. She takes about 2.5 ML if necessary. It does make her VERY sleepy,...
Hi Tracy, It was my daughter Leyla who has been long suffering from sickness and sleep problems which I do think go hand in hand for Leyla. If she doesn't...
Her latest problems besides the GA wich caused siezures ( wichare under control, but took her ability to do much of anything away) and CP we are having trouble...
Tracy, This sounds so much like Leyla. When did she suffer the crisis? Its nearly 2 years for Leyla. She too has lost pretty much all motor functions and...
I learned through observing Lily through time, that initially after being diagnosed she was being fed far too often. She was fed by machine for 20 hours and...
Our doctor thinks that Destiny's diarehha and gagging/vomiting are hand in hand. Today the first in about 6 months Destiny had a bowel movement that was more...
Dear Tracy, Sorry to hear about Destiny's hip. I hope they are able to find a solution quickly because I am sure it is not comfortable! As far as the gagging...
Tracy, I am sorry about Destiny's hip - she must be unhappy. I know watching Lily go through things, beyond her diagnosis were so frustrating. It made me...
Melissa, I love what you said about the W & D! Lily has been teething a lot lately, or just drolling more because she is trying to move more. I don't keep...
Sarah Thank you for writing in Char's caring bridge page. That was so thoughtful. Charlene came home on Wednesday. The trach/vent are working well for her....
Desiny was takin off the reglan recently since she was put on 30mg 2x a day but still does the gagging and vomiting with that. She even had a nissan wrap that...
Tracy, Jayden's hip was also "sliding" as the docs put it. He just received his first Botox treatment about 3 weeks ago. It has seemed to have helped, but...
Hi e-1, Just wanted to let e-1 know that Nicholas is doing well. Since we put him on Valuime he's been sleeping much better. Not only that we are trying to...
Wow Carolyn, That's great that Nicholas is getting potty trained! I envy all of you who are able to do this. I don't think that day will ever come for me!...
HI Chantalle, You know i never thought I would see the day to. But after 7 yrs he's working hard at it. As far as the oral feeding Nicholas also stopped eating...
Hi My son Michael was diagnosed almost 4 years ago with GA-1 - first of all what state so you live in? Med-i-cal will pick up what insurance will not. If you...
Jennifer, Depending what state you are in is what is available for you. My daughter was able to recieve social security disability for her son that was...
