Just read up on it and I am wondering. Grace got worse at 10.They couldn't figure out why she all of a sudden stopped wlakign and reversed in all areas. This...
Gabriela, My brother, who does not have (as far as my family and I know) have an 11q issue but he does have Syringomyelia. He is 22 years old now and does just...
hi thanks for your coments about this, As now I don't have to much info of how bad is she because I have to take her to the neurosugen but for that I wil have...
Hey all, Thank you to everyone for your input and help on breastfeeding issues! I'm so glad that I found this list. :D Ayah (four months this past weekend!) ...
Kristen, Both of my boys had many swallow studies when they were younger. they both had silent aspiration problems and had to be tube fed for a while and then...
I can't remember if you are in the US or not.But insurance and medicaid pays for the thickener with a script fromt he dr. I had the jell packets for the...
I think that it also depends on your insurance and state if you have medicaid. My boys had primary insurance plus the katie beckett deeming waiver and neither...
Oooh, I hadn't thought to ask about a prescription. I was just looking online. Ebay is the way to go, by the way. Also, I did find a post on a message board...
Having insurance sometimes hurts what you need because they ahve to be billed first. I always hated the fight between Medicaid and insurance. Know that if you...
I am so glad it is working for you and her. Yes it has alot of fiber and most people on it rarely have a formed stool.This is good for our 11q- kids as...
Olivia is really starting to drive me nuts. She is starting to get really difficult with her behavior. She just turned 3 in Dec and its getting worse. I tried...
Well this is also a normal behaviour for a normal kid too. You have to live trough the screaming - she uses it to get what she wants and find your limits....
Hi Erin I do feel for you! We went through the same behaviour with our JS daughter Robyn. She is now 9.5 and her behaviour is better but we had to go through...
I am fortunate in the only acting out with Nathan, who is now 6, was, and still is, Â his head butting. Shirley has a good point. Although Nathan is not...
Grace had major temper problems and we had a behavior person come in and help train us. We were lucky then that we had a room that we cleared everything out of...
Ayah's thyroid levels have been normal, but I know that her geneticist is watching it closely. We also have a history of Grave's disease, so we have an extra...
It has been quiet here lately. Grace has fully recovered from her hospital stay. We are working on our veggie garden.We love fresh veggie's We have rake swe...
I hope she doesnt mine me posting this is she is on the group. She found me through my website http://www.jacobsenssyndromeawareness.com She had Ava (love the...
I was going threw some old photos tonight and foudn these. These pictures were taken in Dallas at the first conferance . Any body remember names, I have...
Disease N Cure <http://www.diseasencure.com/> is the website which publish important articles that articles that encourage systems thinking, offer thorough...
"Happy Easter every one! We're back in the hospital again. We've been here since Friday. Serena started running a 103 fever Friday morning but had woken up at...
Poor Serena , Poor you.Bless your heart. I am so sorry prayers . NO MOTRIN ETC!!!!! Make them check her platelet count. Especially if they are going to do a...
I'm sorry to hear that Serena is having problems again. Hang in there! I think that Brayden spend more time in the hospital than he did at home his first...
Last night Serena ended up in the PICU and she is now on diuretics. She's had 3 doses of the diuretics and is just now really starting to have better urine...
Hope this finds everyone well. We are ok here.Grace has realed back full force from her scare 2 months ago. Now if I could find something to stop the Dr...
hi every body my doughter is 2 monthes and i am realy worry about her because i realy dont know how is this diorder in 11q is going to affect her. untill now...
Hind Almarzouqi
hind.almarzouqi@...
Apr 19, 2009 1:36 pm
772
Will be praying for you and her . If her kidney is blocked the urine will back up and cause her to swell that way.Grace had to have a duiretic last night. I...
Peggy, I am sorry Grace has had a tough week, when Cody has tough days/weeks I tell everyone look our days are not always perfect either...LOL. I have not...
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