Re: pls help, urgent GI and seizure adv...

[Guest guest]

my son started Ketotofin about 2 weeks ago and it has helped his constipation a lot. Gastrocrom is another alternative as a mast cell stabilizer.

But ,What I am concerned with is what caused her to use the mirilax in the first place.What if extreme toxins from Lyme and other co-infections, caused the bowels to paralize and constipate? Tammy F.

There is a wonderful woman and her daughter whom I have recently gotten to know and they are in desperate need of help. The daughter has severe GI issues and I thought if anyone had some useful advice it would be the brilliant folks on this board. Her mom is a single mom who has only the limited income that the govt. can provide as a primary caregiver since her daughter requires 24-hour care.This girl was initially diagnosed as autistic when she was very young and was severe with no language as well as a host of other issues in special day classes etc. until it was discovered that she was seizing so many times per minute that she could barely function. Even the doctors advised pulling her out of school because they felt the stimulation was just too much and the alternative at that point was brain surgery. This was just two years ago I think. Once the daughter was homeschooled and was placed on medication, the seizures were greatly reduced (still often but hundreds of times less frequent) and she started speaking and learning. She had made such incredible progress! However, she has severe GI/bowel issues and had been placed (by Kaiser) on Miralax and had been so for last 9 years. Each time she gets constipated, she is in severe pain and she seizes and Miralax has not been working. She has had to be in and out of hospitals frequently over many years. She has also been on a liquid diet for some time since the doctors determined she is not breaking down her food sufficiently and this is contributing to the seizures.Kaiser thought it might be Hirschsprung's Disease where there is intestinal blockage due to absent or dead neurons in the intestinal tissue so thereby non-working tract and therefore unable to poop. The mother finally got the case escalated out of Kaiser to a doctor at UCSF (sorry, I don't know the name of the doctor) to perform biopsy. After recent biopsy surgery, it was found she doesn't have Hirschsprung's as there are neurons but the intestine is still non-functioning. Kaiser refuses any further diagnostic testing and evaluation on function of the neurons. Kaiser will only conduct a barium procedure to look at the shape of tract. I had heard from one woman that barium liquid used for these type of x-ray procedures can "stick" to the intestinal walls and this woman's sister had to have part of her intestine removed because of it. The girl's mom is quite concerned about this procedure, but the doctors don't have any other answers at this point.Currently, the mother is giving the girl senna and enemas (sometimes more than once a day) to keep her poop moving and prevent her from being in pain and seizing.Can anyone here offer any advice or information on possibilities the mother could investigate or bring up to the doctors? Is there any other test or procedure that can provide some investigative value without the barium? Any doctor recommendations that might help this mom? She is pretty low income and limited to medi-cal and Kaiser. Any feedback would be greatly appreciated!Thanks!Val

[Guest guest]

Just wonder if Castor oil packs done once a day for 20 minutes.

Basically a cotton cloth soaked with castor oil, on the stomach area, put some

plastic wrap over the area, heating pad on low setting, for 20 minutes a day.

Its simple but can help and also improve her BM's & immune system. Castor oil

can be purchased at most health food stores.

>

> my son started Ketotofin about 2 weeks ago and it has helped his

> constipation a lot. Gastrocrom is another alternative as a mast cell

stabilizer.

>

>

>

> In a message dated 4/26/2011 9:12:10 A.M. Eastern Daylight Time,

> stoplyme@... writes:

>

>

>

>

> But ,What I am concerned with is what caused her to use the mirilax

> in the first place.What if extreme toxins from Lyme and other

> co-infections, caused the bowels to paralize and constipate?

Tammy F.

>

>

>

>

> There is a wonderful woman and her daughter whom I have recently gotten to

> know and they are in desperate need of help. The daughter has severe GI

> issues and I thought if anyone had some useful advice it would be the

> brilliant folks on this board. Her mom is a single mom who has only the

limited

> income that the govt. can provide as a primary caregiver since her daughter

> requires 24-hour care.

>

> This girl was initially diagnosed as autistic when she was very young and

> was severe with no language as well as a host of other issues in special

> day classes etc. until it was discovered that she was seizing so many times

> per minute that she could barely function. Even the doctors advised pulling

> her out of school because they felt the stimulation was just too much and

> the alternative at that point was brain surgery. This was just two years

> ago I think. Once the daughter was homeschooled and was placed on

> medication, the seizures were greatly reduced (still often but hundreds of

times

> less frequent) and she started speaking and learning. She had made such

> incredible progress! However, she has severe GI/bowel issues and had been

> placed (by Kaiser) on Miralax and had been so for last 9 years. Each time

she

> gets constipated, she is in severe pain and she seizes and Miralax has not

> been working. She has had to be in and out of hospitals frequently over

> many years. She has also been on a liquid diet for some time since the

> doctors determined she is not breaking down her food sufficiently and this is

> contributing to the seizures.

>

> Kaiser thought it might be Hirschsprung's Disease where there is

> intestinal blockage due to absent or dead neurons in the intestinal tissue so

> thereby non-working tract and therefore unable to poop. The mother finally

got

> the case escalated out of Kaiser to a doctor at UCSF (sorry, I don't know

> the name of the doctor) to perform biopsy. After recent biopsy surgery, it

> was found she doesn't have Hirschsprung's as there are neurons but the

> intestine is still non-functioning. Kaiser refuses any further diagnostic

> testing and evaluation on function of the neurons. Kaiser will only conduct

a

> barium procedure to look at the shape of tract. I had heard from one woman

> that barium liquid used for these type of x-ray procedures can " stick " to

> the intestinal walls and this woman's sister had to have part of her

> intestine removed because of it. The girl's mom is quite concerned about

this

> procedure, but the doctors don't have any other answers at this point.

>

> Currently, the mother is giving the girl senna and enemas (sometimes more

> than once a day) to keep her poop moving and prevent her from being in pain

> and seizing.

>

> Can anyone here offer any advice or information on possibilities the

> mother could investigate or bring up to the doctors? Is there any other test

or

> procedure that can provide some investigative value without the barium?

> Any doctor recommendations that might help this mom? She is pretty low

> income and limited to medi-cal and Kaiser. Any feedback would be greatly

> appreciated!

>

> Thanks!

> Val

>