GI doc and enzymes question

[Guest guest]

Hi, we currently reside in PA and our 3 1/2 year old twins have been

seeing Dr. Karoly Horvath since January of this year. Our twins have

autistic enterocolitis and are on creon-10 and pentasa. Their bowels

are mostly mushy. Once in a while we get a formed poop. YEAH! But not

often. We also still get diarrhea. I have added DPP IV plus 2 weeks ago

but still no difference. They are on a high protein diet, GFCFSF and

everything else free. Horvath says that mushy is good. I don't think so

personally. Any suggestions? I am thinking of contacting Buie's office.

They will be stopping the Pentasa in January as it is a short term drug

according to Horvath and secretin is out of the question unless it is

being used in a study so he informed me. My guys can't continue to have

loose stools for another 2 1/2 years.

Hopeless and desperate,

[Guest guest]

-

I hope you don't mind my tagging onto your question with a comment.

My Son and Daughter have had loose bowels for the last 4 years.

Recently (Six Days ago), I gave them both ThreeLac and Kirkman's

Spectrum Complete. They both had normal movements for Three

Straight Days. I stopped both and the first day they still had a

normal movement and the next two days they were back to loose

bowels. Have you tried these? Has anyone else had similar results?

For my daughter, she tried a No Fenal from Houston's and that helped

once out of 4 days. Didn't have an effect on my Son in that

department. It's good to be able to have someone that wants to hear

about this stuff. We were about 2 months into GFCF before trying

ThreeLac and Kirkman's Spectrum Complete.

Take Care,

Bill

>

> Hi, we currently reside in PA and our 3 1/2 year old twins have

been

> seeing Dr. Karoly Horvath since January of this year. Our twins

have

> autistic enterocolitis and are on creon-10 and pentasa. Their

bowels

> are mostly mushy. Once in a while we get a formed poop. YEAH! But

not

> often. We also still get diarrhea. I have added DPP IV plus 2

weeks ago

> but still no difference. They are on a high protein diet, GFCFSF

and

> everything else free. Horvath says that mushy is good. I don't

think so

> personally. Any suggestions? I am thinking of contacting Buie's

office.

> They will be stopping the Pentasa in January as it is a short term

drug

> according to Horvath and secretin is out of the question unless it

is

> being used in a study so he informed me. My guys can't continue to

have

> loose stools for another 2 1/2 years.

> Hopeless and desperate,

>

>

[Guest guest]

Bill,

I have tried several great probiotics with them and to no avail,

NOTHING has changed. They are currently on Threelac and DPPIV+ and

still no changes. Their bowels are messed up and it sucks! I know that

they are uncomfortable. I have used various enzymes and S. Boulardi,

Nystatin, Diflucan, vitamins, minerals, CLO which was a nightmare as

they pass it right thru the bowels. I am desperate for them. Thanks for

asking.

www.babyhomepages.net/thegillespiefamily/

[Guest guest]

My little guys have an enzyme

deficiency for which they take creon-10. They have a carb intolerance

for which Horvath has no answer for. If they eat carbs of any kind,

they wind up with congestion, lots more mucus and ultimately ear

infections. They are GFCFSFNFEF. They eat ONLY 15 foods which I

prepare and puree every 3-5 days. Everything except 3 fruits are

organic. The only meats they eat are Buffalo, lamb and veal. Chicken

gives them ear infections, turkey gives them gas and we are going to

try ostrich again in the near future. They tolerate spinach, beets,

peas, green beans and squash. We can no longer do carrots as it has

discolored their skin. They have a severe egg and peanut allergy via

a RAST test? They have NEVER had egg or peanut so we do not know what

affects either will have. But we do have an rx for an EpiPen. They

only eat pureed pears, pineapples, peaches and blueberries. They

pretty much eat anything that you give them as long as it is pureed.

They are not picky but have severe oral motor sensory issues.

They are on Pentasa for their colitis. Pepcid for their reflux and

Zyrtec for their allergies. W/o the zyrtec, they would have

accumalatory fluid/mucus and wind up with ear infections. Horvath, in

my opinion, is not aggressive enough in his plan of action. He's

pulling the Pentasa in late January since is for short term use. They

had mudslides prior to the meds they are currently on. We have

intermittent diarrhea, fudgy, mooshy stools now. IMO, not much better

than before. I am just now taking pictures so I can send them to the

docs. As much as we would love to see Krigsman, with 4 special needs

kids and 3 meeding GI work ups, we do not have $6000 per kiddo to see

him.

The ASA here in York, PA is awesome. They had a biomedical parent

panel to discuss the obvious. One parent said that her son had

diarrhea for 5 years. My twins can NOT have diarrhea for another 2

1/2 years. Some one has got to fix them. Their guts are so messed up

due to vaccines and antibiotic overuse, it sickens me. I can't even

begin to try and heal them until their guts are healed and so far

it's not happening. Everything goes right thu them as far as

supplements. Because they are in the 95% for height and 80% for

weight Horvath does not seemed to be concerned yet in the studies he

has done which coincide with Wakefield, Buie and Krigsman, just to

name a few, he writes otherwise.

Very Interesting. That mom who's child had diarrhea for 5 years was a

patient of Horvath unitl she went to see Krigsman. That child has

formed stools now. Tha't evny. I don't envy parents of typical

children, I envy the children that have normal poops and NO gut

issues. I am sorry for unleashing the madness within myself. It's sad

that all of us as parents are robbing to pay just so we

can get our kiddos the help that they need and deserve. Almost

everyday, I wake up and wish that I could sleep forever. I hate life

and all that is going on with the world. It is all a madness.

Surreal. I feel bad for my babies and just want normal poops.

Pathetic. I envy the parents that have children w/o allergies, gut

issues and the like. Autism is not the worse of it.

[Guest guest]

Have you thought about going on Neocate, a formula only diet? On POFAKS,

there might be support group for parents in this situation. There are

several parents who children could not tolerate any foods, went on a formula

only diet and then slowly introduce a new food like every two weeks. There

is a test, I'll research it later, biopsy, espho-------????????

Anyway...Just a quick thought as I head out the door for an appointment!

Tammy

Re: GI doc and enzymes question

My little guys have an enzyme

deficiency for which they take creon-10. They have a carb intolerance

for which Horvath has no answer for. If they eat carbs of any kind,

they wind up with congestion, lots more mucus and ultimately ear

infections. They are GFCFSFNFEF. They eat ONLY 15 foods which I

prepare and puree every 3-5 days. Everything except 3 fruits are

organic. The only meats they eat are Buffalo, lamb and veal. Chicken

gives them ear infections, turkey gives them gas and we are going to

try ostrich again in the near future. They tolerate spinach, beets,

peas, green beans and squash. We can no longer do carrots as it has

discolored their skin. They have a severe egg and peanut allergy via

a RAST test? They have NEVER had egg or peanut so we do not know what

affects either will have. But we do have an rx for an EpiPen. They

only eat pureed pears, pineapples, peaches and blueberries. They

pretty much eat anything that you give them as long as it is pureed.

They are not picky but have severe oral motor sensory issues.

They are on Pentasa for their colitis. Pepcid for their reflux and

Zyrtec for their allergies. W/o the zyrtec, they would have

accumalatory fluid/mucus and wind up with ear infections. Horvath, in

my opinion, is not aggressive enough in his plan of action. He's

pulling the Pentasa in late January since is for short term use. They

had mudslides prior to the meds they are currently on. We have

intermittent diarrhea, fudgy, mooshy stools now. IMO, not much better

than before. I am just now taking pictures so I can send them to the

docs. As much as we would love to see Krigsman, with 4 special needs

kids and 3 meeding GI work ups, we do not have $6000 per kiddo to see

him.

The ASA here in York, PA is awesome. They had a biomedical parent

panel to discuss the obvious. One parent said that her son had

diarrhea for 5 years. My twins can NOT have diarrhea for another 2

1/2 years. Some one has got to fix them. Their guts are so messed up

due to vaccines and antibiotic overuse, it sickens me. I can't even

begin to try and heal them until their guts are healed and so far

it's not happening. Everything goes right thu them as far as

supplements. Because they are in the 95% for height and 80% for

weight Horvath does not seemed to be concerned yet in the studies he

has done which coincide with Wakefield, Buie and Krigsman, just to

name a few, he writes otherwise.

Very Interesting. That mom who's child had diarrhea for 5 years was a

patient of Horvath unitl she went to see Krigsman. That child has

formed stools now. Tha't evny. I don't envy parents of typical

children, I envy the children that have normal poops and NO gut

issues. I am sorry for unleashing the madness within myself. It's sad

that all of us as parents are robbing to pay just so we

can get our kiddos the help that they need and deserve. Almost

everyday, I wake up and wish that I could sleep forever. I hate life

and all that is going on with the world. It is all a madness.

Surreal. I feel bad for my babies and just want normal poops.

Pathetic. I envy the parents that have children w/o allergies, gut

issues and the like. Autism is not the worse of it.

[Guest guest]

The current GI prefers that they be on Neocate but try drinking it and

trust me as you would not want to be on that stuff. Plus it contains

corn syrup solids and both twins have a corn sensitvity. No go. They

are doing well on the diet that they are currently on. We need to get

their guts cleaned up. Any suggestions...

[Guest guest]

> Hi, we currently reside in PA and our 3 1/2 year old twins have been

> seeing Dr. Karoly Horvath since January of this year. Our twins have

> autistic enterocolitis and are on creon-10 and pentasa. Their bowels

> are mostly mushy. Once in a while we get a formed poop. YEAH! But not

> often. We also still get diarrhea.

Try keeping a journal. Write down foods, supps, medications, etc,

plus the bms and behaviors etc. See if you notice a correlation, so

you can determine what might be causing the issues.

Dana

[Guest guest]

>

> Bill,

> I have tried several great probiotics with them and to no avail,

> NOTHING has changed.

Try adding biotin.

>>Their bowels are messed up and it sucks!

Diarrhea? Or constipation?

>>CLO which was a nightmare as

> they pass it right thru the bowels.

My son did not tolerate fats until I added mito cocktail

http://www.danasview.net/mar05.htm

Dana