pls help, urgent GI and seizure advice needed for friend

[Guest guest]

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]

Bacteria, such as Lyme, as well as worms, are thought to decrease the

movement in the intestines. This movement is referred to as peristalsis

or motility. Anyhow, iodine on the skin has caused the most motility in

my family of all the things we have tried. There is a nerve that is

very involved in intestinal movement which is theorized to be infected

by bacteria and/or viruses. You can Google, " Bells Palsey of the gut "

to learn more about it. Now, there are always exceptions to the rule,

so a birth defect or other cause may be found. It does appear that lack

of intestinal movement is pervasive, not only in autism, but is very

abundant in the general population as well. Of course, some just get

indigestion or sluggish digestion from it, but there are severe forms,

where some have severe symptoms. Since our bodies rely on our digestion

for every function, definitely keep focusing on this. I would Google

Miralax to learn more about it. I am not sure most would like it if

they Googled about it. Since many in the autism arena have this low

intestinal motility, there are many things they are using that are

natural to treat this. Forms of magnesium seem to be most commonly used.

Love and prayers,

Heidi N

[Guest guest]

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]

Hi Tammy,Pathogens as a contributing factor would definitely be worthwhile to look into.  I just spoke to the mom and she said that her daughter had one test for lyme that came up negative.  I told her that depending on the test and numbers that may not be necessarily so.  I recommended she join this list.  It's difficult for her as she has to visit a local library and use the computer there to be able to check email or use the Internet.

Val

 

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.

[Guest guest]

Thanks for the suggestions Heidi!  I think at this point any leads that can be tracked down and research is better than nothing.  Even knowing what search terms to google to start with is helpful.  I think Miralax definitely was not helpful and could have led to more problems.  I will definitely pass on all the great suggestions here.  It's comforting to know that there are so many great minds focused on helping kids!  =)

Val

 

Bacteria, such as Lyme, as well as worms, are thought to decrease the

movement in the intestines. This movement is referred to as peristalsis

or motility. Anyhow, iodine on the skin has caused the most motility in

my family of all the things we have tried. There is a nerve that is

very involved in intestinal movement which is theorized to be infected

by bacteria and/or viruses. You can Google, " Bells Palsey of the gut "

to learn more about it. Now, there are always exceptions to the rule,

so a birth defect or other cause may be found. It does appear that lack

of intestinal movement is pervasive, not only in autism, but is very

abundant in the general population as well. Of course, some just get

indigestion or sluggish digestion from it, but there are severe forms,

where some have severe symptoms. Since our bodies rely on our digestion

for every function, definitely keep focusing on this. I would Google

Miralax to learn more about it. I am not sure most would like it if

they Googled about it. Since many in the autism arena have this low

intestinal motility, there are many things they are using that are

natural to treat this. Forms of magnesium seem to be most commonly used.

Love and prayers,

Heidi N