Hi Kass, Sorry for the delay in the reply but I am on digest and it takes me
a while sometimes to get through everything till I find something addressed
to me....
We always make sure we bring a supply of Pedialyte and PediaSure, and a small hand held battery-operated fan. Consider getting to know one of the stewardesses...
Dawn: How does your daughter like Mackinac Island? The reason I ask is because I live on Washington Island for the summer. The difference between the two is...
Sharon: That is so neat for Jake. I'm very happy for you all. I'm sure Jake will do fine on the trip. The reason I say that is because Parker just got back...
Jake (13) had his feeding tube placed on June 23rd. He is getting fed approximately 16 hours a day (Jevity at this time). Lately he has been complaining of a...
Hi Keely: I take it you are working with a speech therapist? Leah, too is what we consider nonverbal. She only signs a couple of things, she points to...
could be gas pains i know sometimes gas can be like that for me but, could be just irritation of the g-tube too i am not an expert but i hope it passes sarah ...
Leah was sedated for a couple of her EEGS. I believe it is similiar to if they are sleeping; only a shorter time. We have a neuro who does the sedation...
Hi Janet: Couldn't find your email address so will post the question here? How was your appointment in Appleton on July 18th. I'm in town only till Wednesday...
Yep, we go to Rochester tomoorw and Thursday. We have morning appoinments only so lots of free time to swim and relax, unlike what we normally do which is...
Has anyone ever gotten Medicaid (or insurance) to cover Pedialite due to needing it medically? I have been considering switching to Pedialite from Gatorade as...
Ok, we just got some of hailee¹s labs back, does anyone have a child with MCAD? Defect of medium chain-CoA dehydrogensase What does it mean? This is what...
Hi Lisa, Where is Washington Island? My daughter (Holli) does like it. Well at least she did. Her boyfriend is also living on the island and they were doing...
Hi Darla, We do get pedialyte covered by insurance for Jack. He gets it through his g-tube daily. We had to fight a little harder, few more calls and...
Melissa, at www.fodsupport.org they have this to say about MCAD: MCAD: Medium Chain acyl CoA Dehydrogenase - Information for Families Charles R. Roe, MD Medium...
The one thing that I thought would never dreamed would come, came today. Kierra went to the hospital to reveiw her labs and talk to the doctors. Labs were...
Jennifer, I am so sorry to hear about your daughter. I can honestly say I feel your pain and I wish I could take all your daughters as well as my son's pain...
Jennifer, sending you lots of hugs. I wish I had words of wisdom, but that¹s an area I have no idea about. Sending prayers and hugs Melissa and hailee ...
ps. hang in there, these kids made it! There is hope. Rosemary ... the ... will ... happen ... and ... are ... saying ... of ... everything ... end. I...
Hi Jennifer I don't know if this is of any help, but I belong to the HMDSN group (Hirschsprungs & motility disorders). There are several kids on there that...
I confirmed our reservation at Kathy's House foir our Milwaukee clinic visits later this month. If anyone would like to get together there for an informal get...
Justin is supposed to get his button in August under general anesthesia and they will scope him again too. I was wondering if anyone else had this done when...
I am glad to hear he is having a break. Too many others things to worry about without having more seizures! we had a G tube placed under anesthesia but yes it...
I don't have any experience with this type of situation, but will keep the two of you in my prayers. Sending big {{HUGS}} you way. Jen -Donny (7) -Mason (5) ...
Karen: What meds is Justin on for seizures? My son's are frontal with an ocassional secondary generalized to follow. He's on Tegretol but I'm not confident...
HI, DAWN HOW IS EVERYTHING GOING? I HAVEN'T BEEN HAVING A GOOD TIME. MY ARMS ARE REALLY BOTHERING ME KNOW. I CANN'T GET INTO THE CLINIC UNTIL NOV. THAT IS...
Donna, I received this on email this morning....not sure if they would take a 16 year old but maybe? Mansfield wouldn't be too far for you, would it? Barb S. ...
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