Hello, I have a 6 year old son. with spina Bifda. (he uses crutches and attends public school) I'm plaaning on relocating from NJ to to NC. Which area Raleigh...
Hello everybody! My child who has a SB will go to school soon. She's being cathed every 3-4 hrs. everday. I am a working mom and I don't know what to think ...
Those are some excellent questions that I to would like to find some answers for. My son is almost 2 however I would like to know what my options are. I will...
There are several resources available in NC depending on where you live. A great resource of information is the Family Support Network 1-800-852-0042 for...
Joanne Mackey
macke003@...
May 28, 2007 8:16 pm
302
All children in school who need special procedures, medications, monitoring should have a Individual Health Plan in either incorporated into the 504 Plan or...
Joanne Mackey
macke003@...
May 28, 2007 9:13 pm
303
Thank you so much for all the informations that you gave me. I really appreciate the time that you spent to email me. I will call the numbers that you gave me...
I was wondering if anyone has had success in their insurance paying for diapers or incontience products for their children with Spina Bifida? I have State...
Of course it will depend on your provider. However, my own experience as well as talking with others, is that most items that are considered non durable ...
I will be out of the office starting 06/15/2007 and will not return until 06/30/2007. I will respond to your message when I return. If this is regarding Pompe...
Joanne Mackey
macke003@...
Jun 29, 2007 2:03 am
307
I have medicaid and they help pay through Home Health but before I turned 21, CSHS (Children's Special Health Services) helped pay for my diapers. ... ...
My daughter is 6 months old and has been having trouble with constipation. We were told to give her juice, miralax and enemas if needed. Figure out what...
Marie, My daughter Emily is 4 yrs. old now. She's taking Glycolax everyday(same thing as Miralax) and it works pretty good on her, we also let her drink a lot...
Well the time is near my son John will be going to Kindergarten! The good thing is I will be teaching at the same school that he will be at. I need advice!...
hi, Sherry, my name is Timothy. I bet it's driving you mad having to worry about this situation. I will be 23 this thursday, and I also have Spina Bifida (I...
Timothy, Thank you for your response! It helps to hear from someone who has lived it. So do you think I should let him try going to the bathroom on his own?...
well, the nurse helped me a little bit. and wearing underwear over it is a must. just let him do his thing, but if he needs help, tell him it's okay if the...
My son is 8, so much older. We also use Miralax/Glycolax. He recently had a surgery, appendicitis, and is now recovering. It is difficult getting that bowel...
Thanks for the help. She was an antibiotic for a UTI. I'm glad to hear that it does take a while to get things back to normal. My little girl is going to...
My son's doctor just suggested that we use a rectal syringe to clean out our son. He suggested using tap water and table salt. Has anyone else used this...
I will be out of the office starting 07/28/2007 and will not return until 08/06/2007. I will respond to your message when I return. If this is regarding Pompe...
Joanne Mackey
macke003@...
Jul 30, 2007 8:12 pm
320
I have a 26 year old brother with SB. When he was a teenager, we used to have to help him with his. It was very uncomfortable for him and the person...
Sherry, My son just turned 11yrs old. We used to do that also, but it was very awkward doing it that way. He had what is called a MACE procedure done about a...
Sherry I am in the same situation you are. I'm just found out about your e-mail and I would like to know if you already got some suggestions about your...
I have a son of 3 years old and I would like to hear from you all about the bowel movement control. I have haerd too many things but i have not tried any....
... You want a bowel routine. Talk to your Dr at your SB clinic. We use a cone enema and have been essentially accident free since getting the routine down....
Hi, I'm Kathy - I know boards can get quiet around the holidays, just wondering if this board is still active? My godson Christopher has SB Occulta, he's 8 and...
Hi Kathy, We are in Asheville. Our 9yo daughter "Ana" has SB. We cath for urine and she has a MACE procedure for bowel. She walks with crutches and braces, but...
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