stomach problems and seizures-HELP

August 10, 2004

Hi,

It has been awhile since I've posted. Mainly because I just don't have the

energy to describe what has been going on here at our house with .

is on a modfied Atkins and low dose of Felbatol and has had

pretty good sz control since January. Until a month ago. One friday about a

month ago, he began vomiting green bile and blood. We took him to the ER and

they thought he was starting a bowel obstruction and was going to have surgery.

Well, they started him on saline and he got better and didn't have to have

surgery. However, he was extremely constipated so we started him on enemas

for 2 days and then Miralax a huge dose. ( 2x the adult dose). Well , he went

from going to the bathroom once a week to diarrhea and accidents everywhere.

Then came the seizures. He has head nods (generalized) and they started

sneaking back in while he was doing perfectly on the diet.

We went to see his neurologist which is Dr Chez in Chicago who we trust alot

and he said that he thinks his seizures are from his gastro issues and him

not metabolizing his meds or fats. He increased his felbatol which ahs made

him a maniac. He took him off the miralax and put him on Senna 1 tablet a

day. Well ,that still made him a little loose.

I feel like I have watched my son regress 2 years in front of me. He is

still having the head drops and I can't seem to get his stomach and bowels

regualted. He has been following the diet 100%. His stomach is making alot of

noises and he has gas. Not to mention, he won't use the toilet anymore and it

has become psychological. I am overwelmed as he is starting school next week

and he is being mainstreamed which we have worked so hard to get for him.

Any one have any ideas what to do or have any issues like this happen to

them?

Thanks

August 10, 2004

Bill

Thanks so much! Its so nice to know that we're not the only one's in this

insanity. Man is it hard. Just when you think you've got things under

control-BAM.

One thing that is interesting is the reflux you brought up. He had that as a

baby and had to take meds for it. COuld it come back? Right now, he is in

pain from the gas. Do you have any ideas on what do do to eliminate the

gas?

Thanks so much for the prayers and I will definately keep you updated.

August 10, 2004

Absolutely on both counts. When the stomach is not working properly, the

diet won't work well either. We had the whole gamut; diarrhea,

constipation, vomiting, reflux, increased seizures and the ER. I don't

think we were unusual. There you have it.

There are so many things that can go wrong on the diet that it is hard

to know where to start. Constipation. It will really wreck the diet and

cause seizures. Now you know to increase fluids. Many people use

magnesium supplements. We use milk of magnesia for this and for reflux

and increased magnesium. We add psyllium husks to increase fibre. I

don't add anything in for carbs or calories with it. You need more water

intake with it. Some people use medications. I have heard of gentle

suppositories. Some use mineral oil, but I don't like that as it can

affect absorption in the bowels. Try to use vegetables and fruits that

give the most volume. Use that free leaf of lettuce if your neuro approves.

You might have to replenish the gut with good bacteria if the upset was

severe or you are using meds. We use acidophilus or a little bit of

yogurt for a few days. If you hear a lot of stomach sounds and gas this

might be the cause.

The other thing to look at is a food intolerance. Stomach gas could be

caused by this. It could be lactose intolerance. There is a test for

this. The other thing is reflux. I wonder if it could come on if there

has been a decline in the ability to digest the fat for some reason.

Maybe the constipation was so bad that it shut down the digestive

system. It will likely take a week or longer for things to settle down.

These things take some time to stabilize.

We nearly all have had these bad times. I am saying a prayer for you.

Bill

lloydandleslie@... wrote:

> Hi,

> It has been awhile since I've posted. Mainly because I just don't have the

> energy to describe what has been going on here at our house with .

> is on a modfied Atkins and low dose of Felbatol and has had

> pretty good sz control since January. Until a month ago. One friday about a

> month ago, he began vomiting green bile and blood. We took him to the ER and

> they thought he was starting a bowel obstruction and was going to have

surgery.

> Well, they started him on saline and he got better and didn't have to have

> surgery. However, he was extremely constipated so we started him on enemas

> for 2 days and then Miralax a huge dose. ( 2x the adult dose). Well , he

went

> from going to the bathroom once a week to diarrhea and accidents everywhere.

> Then came the seizures. He has head nods (generalized) and they started

> sneaking back in while he was doing perfectly on the diet.

> We went to see his neurologist which is Dr Chez in Chicago who we trust alot

> and he said that he thinks his seizures are from his gastro issues and him

> not metabolizing his meds or fats. He increased his felbatol which ahs made

> him a maniac. He took him off the miralax and put him on Senna 1 tablet a

> day. Well ,that still made him a little loose.

>

> I feel like I have watched my son regress 2 years in front of me. He is

> still having the head drops and I can't seem to get his stomach and bowels

> regualted. He has been following the diet 100%. His stomach is making alot

of

> noises and he has gas. Not to mention, he won't use the toilet anymore and

it

> has become psychological. I am overwelmed as he is starting school next week

> and he is being mainstreamed which we have worked so hard to get for him.

>

> Any one have any ideas what to do or have any issues like this happen to

> them?

>

> Thanks

>

August 10, 2004

,

Looking at your post it looks like things went bad after you started the

Miralax. I would look closely at what you were doing prior to the seizures

coming back and see if there were any changes made. The Miralax sticks out

to me. I wonder how would have done if the Miralax had been

dropped and nothing else increased or added.

Was that a new diagnosis from Dr. Chez that is unable to digest

his meds or fats or is this a problem that you have known about for a long

time? If this is a new diagnosis then Dr. Chez would need to do some

indepth tests to confirm or prove that diagnosis.

Not understanding the entire situation and going off on only what you have

written here,

was doing fine prior to the hospital/constipation episode.

During the hospital stay the meds given to him have screwed up his digestive

system and the continuation of miralax could possibly have brought back the

seizures or increased them. It may not be the miralax itself that has

brought back the seizures but what it has done to 's digestive

system.....made his stomach and intestines not feel well (probably wiped out

the good bacteria from prolonged use) and resulted in increased seizures.

As Dr. Chez said, when the stomach/digestive system is not feeling well that

in itself can cause seizures. The solution, correct his stomach/intestinal

issues. I would stop the Senna and any other medication for constipation

and treat with increased magnesium (give equal amounts of magnesium as you

are giving calcium....increase the magnesium higher if need be). If there

is diarrhea with the magnesium then lower the magnesium until the bowel

movements are at the right consistency.

You need to start giving him good bacteria. You can get bacteria

(probiotics) in a capsule form at a vitamin/health store (if he won't

swallow the capsule then dump the contents on some food). They are capsules

that contain good bacteria. Give him at least 1 capsule a day. If he is

sensitive to dairy you can get it dairy free. I wouldn't be surprised if

started feeling better the very next day after starting the

bacteria. Yoghurt would help replenish the good bacteria, but the capsules

would be quicker.

If is having problems digesting foods then you could give him

digestive enzymes. There are excellent plant based digestive enzymes (stay

away from the papaya based one...contains carbs). Make sure the digestive

enzymes contains lipase which helps break down fats. You can give 1-2

capsules prior to every meal with water (how old is he?). If he is unable

to swallow the capsule then sprinkle it on some food and make sure he rinses

his mouth thoroughly after to ensure that nothing stays in his mouth. They

can be dissolved in liquid and given then follow up with more liquid to

ensure that his mouth his rinsed.

It really seems to me that the problem really exacerbated with trying to get

him un constipated and the treatment that followed.

Hope this helps,

Rhonda

stomach problems and seizures-HELP

Hi,

It has been awhile since I've posted. Mainly because I just don't have the

energy to describe what has been going on here at our house with

.

is on a modfied Atkins and low dose of Felbatol and has had

pretty good sz control since January. Until a month ago. One friday about

a

month ago, he began vomiting green bile and blood. We took him to the ER

and

they thought he was starting a bowel obstruction and was going to have

surgery.

Well, they started him on saline and he got better and didn't have to have

surgery. However, he was extremely constipated so we started him on enemas

for 2 days and then Miralax a huge dose. ( 2x the adult dose). Well , he

went

from going to the bathroom once a week to diarrhea and accidents

everywhere.

Then came the seizures. He has head nods (generalized) and they started

sneaking back in while he was doing perfectly on the diet.

We went to see his neurologist which is Dr Chez in Chicago who we trust

alot

and he said that he thinks his seizures are from his gastro issues and him

not metabolizing his meds or fats. He increased his felbatol which ahs

made

him a maniac. He took him off the miralax and put him on Senna 1 tablet a

day. Well ,that still made him a little loose.

I feel like I have watched my son regress 2 years in front of me. He is

still having the head drops and I can't seem to get his stomach and bowels

regualted. He has been following the diet 100%. His stomach is making

alot of

noises and he has gas. Not to mention, he won't use the toilet anymore and

it

has become psychological. I am overwelmed as he is starting school next

week

and he is being mainstreamed which we have worked so hard to get for him.

Any one have any ideas what to do or have any issues like this happen to

them?

Thanks

August 10, 2004

Reflux is common when starting the diet because of all the fat. Just

think about the last time you overindulged on Kentucky fried chicken. If

you can make it through the first few weeks, hopefully the reflux will

go away as the body adjusts, but I don't see why it can't come back.

For gas, I don't really know. If it is intolerance to a certain food,

then avoiding that food should solve it. Digestive enzymes were

mentioned. That might help matters. Certainly adding good bacteria

should assist with proper digestion. Keep up with adequate water intake.

We used to give soda water at the end of meals to promote burping to

reduce stomache gas. If it is intestinal, that is harder to deal with.

Maybe try eliminating any new foods that you weren't using before.

Simplify the meals as much as possible. I think that lying on the

stomach helps. The pain can be quite intense. I know from having lactose

intolerance myself.

What foods are you using?

Bill

lloydandleslie@... wrote:

> Bill

> Thanks so much! Its so nice to know that we're not the only one's in this

> insanity. Man is it hard. Just when you think you've got things under

> control-BAM.

>

> One thing that is interesting is the reflux you brought up. He had that as a

> baby and had to take meds for it. COuld it come back? Right now, he is in

> pain from the gas. Do you have any ideas on what do do to eliminate the

> gas?

>

> Thanks so much for the prayers and I will definately keep you updated.

>

August 11, 2004

Rhonda,

Thanks so much. This list has been a god send for many years for us and I am

so greatful for your thought out advice.

To answer a few questions, is 6. He has never been diagnosed

with an absorption problem before. Dr Chez thinks that the high dose of Miralax

caused his stomach to stop absorbing his fats and meds due to the excess

diarhhea. We started with a major mass in his abdomen being stool and ended up

with diarrhea. He even has a odor to him now like stool after he takes a

bath. Prior to the problems in the hospital, we were giving him his meds

(Felbatol 600mg) the Atkins diet, carn aware and a vitamin. Constipation has

been

an ongoing battle and we can't seem to get on top of it. We used

suppositories every 3-4 days if no BM. I know-not good.

I think that I am going to go out today and start Magnesium and Probiotics.

Is there a preference between that and acidophulus. I took that because I

have irritable bowel syndrome. It does help. I tell you, he is a much

better child today just going back down on his meds. Dr Chez increased his

felbatol. It makes him a crazy boy. He is happy and I think if we get his gut

back on track, we are maybe going to get him back.

What about Yoghurt? Is that the SCD stuff. I tell you, all of this makes me

suspect some underlying intestinal issues that I really don't know where to

start. Its so much to digest. Do you have any suggestions.

We have appt with a ped GI doc in Oct. Any thoughts on that or what to

ask to have tested? I hate to say this but I'm sick of docs because most of

them arund here don't have aclue what they are doing. They tried to give

a milk and molasses enema and also give him a sugar h20 IV when he

was

sick. We have to drive 4 hours to see a neurologist and he pretty much does

everything for us.

Again, Thanks for all of your help!

In a message dated 8/10/04 6:14:14 PM Pacific Daylight Time,

ackerman@... writes: