Re: we are pulling our hair out !!

[Guest guest]

and Gwynne: Is he taking fluids in the last week? Not a medical

professional, but sounds like he

needs to see a specialist to consider something quick re: not eating in a week.

Can you get a referal to a

specialist in a hospital expediently--today? Did they think he was getting

enough nutrition on the diet?

Did they test for the rate of stomach empty? Was he still gaining weight and

growing? They may need to IV

for the meantime until they get to the root of it.

Have they tryed a greater number of Digestive enzymes and Lactobacillus

acidphilus added? Also gluthathione

There is a new supplement called immunocal.

Cases of abdominal migrane have been reported in CHARGE.

As a caution, there was also a case where stomach lining was thin and didn't

develop properly in a child with

CHARGE. With all the scopes, they actually perforated the stomach unaware.

Much distension and pain.

ANN GLOYN

Goldberg wrote:

> Dear Parents

>

> Our baby is now two years and three months. For the last

> two months he has suffered from what seems to be severe

> intermittent, abdominal cramping. His been constipated at times

> but not always and his stomach is bloated most of the time. He

> passes frequent, fowl smelling winds. His doctors have excluded

> gallstones (his stools were quite pale). The abdominal x-ray

> showed marked gaseous distension.

> They think he may have GIARDIA and have given him FLAGYL and

> DUFALAC. He continues to cry as if in severe pain and has not

> eaten for the last week.. He is on a gluten/casein free diet

> and has managed to take in some rice milk. He has been on this

> diet for four months now. He also recently had grommets and his

> ears are not infected.

>

[Guest guest]

and Gwynne,

Ann has given good thoughts. I hope you are able to get seen soon.

One thing occurs to me about the gluten-casein free diet. One element that

can be lacking when a gluten free diet is instituted is zinc. So, I was

wondering if zinc is given as a supplement to offset the lack in the bread

kinds of foods??

I also would really look into the issues around enzymes and so on.

When our daughter had severe problems with digestion, Pregestimil was a

life saver. It is predigested and includes the amino acids that are so

critital, but the digestion is easy on the child. I don't know if that is

appropriate for your situation or not, but I hope something works very soon.

Mom to Kendra, and Camille

At 08:00 PM 12/15/01 -0500, you wrote:

> and Gwynne: Is he taking fluids in the last week? Not a medical

>professional, but sounds like he

>needs to see a specialist to consider something quick re: not eating in a

>week. Can you get a referal to a

>specialist in a hospital expediently--today? Did they think he was getting

>enough nutrition on the diet?

>Did they test for the rate of stomach empty? Was he still gaining weight

>and growing? They may need to IV

>for the meantime until they get to the root of it.

>Have they tryed a greater number of Digestive enzymes and Lactobacillus

>acidphilus added? Also gluthathione

>There is a new supplement called immunocal.

>Cases of abdominal migrane have been reported in CHARGE.

>As a caution, there was also a case where stomach lining was thin and

>didn't develop properly in a child with

>CHARGE. With all the scopes, they actually perforated the stomach

>unaware. Much distension and pain.

>ANN GLOYN

>

> Goldberg wrote:

>

> > Dear Parents

> >

> > Our baby is now two years and three months. For the last

> > two months he has suffered from what seems to be severe

> > intermittent, abdominal cramping. His been constipated at times

> > but not always and his stomach is bloated most of the time. He

> > passes frequent, fowl smelling winds. His doctors have excluded

> > gallstones (his stools were quite pale). The abdominal x-ray

> > showed marked gaseous distension.

> > They think he may have GIARDIA and have given him FLAGYL and

> > DUFALAC. He continues to cry as if in severe pain and has not

> > eaten for the last week.. He is on a gluten/casein free diet

> > and has managed to take in some rice milk. He has been on this

> > diet for four months now. He also recently had grommets and his

> > ears are not infected.

[Guest guest]

Sorry, no advice or experience on this, but I hope is feeling better

sooner that later!!! hugs from the halloran's

we are pulling our hair out !!

> Dear Parents

>

> Our baby is now two years and three months. For the last

> two months he has suffered from what seems to be severe

> intermittent, abdominal cramping. His been constipated at times

> but not always and his stomach is bloated most of the time. He

> passes frequent, fowl smelling winds. His doctors have excluded

> gallstones (his stools were quite pale). The abdominal x-ray

> showed marked gaseous distension.

> They think he may have GIARDIA and have given him FLAGYL and

> DUFALAC. He continues to cry as if in severe pain and has not

> eaten for the last week.. He is on a gluten/casein free diet

> and has managed to take in some rice milk. He has been on this

> diet for four months now. He also recently had grommets and his

> ears are not infected.

>

> Getting him to sleep at night remains a difficult challenge.

>

> Does anyone have any experience or ideas on how we can help our

> son, as the doctors here in South Africa have never dealt much

> with CHARGE?

>

> Love and Gwynne

>

>

> ________________________________________________

> Get your own " 800 " number

> Voicemail, fax, email, and a lot more

> http://www.ureach.com/reg/tag

>

>

> Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

>

>

[Guest guest]

PS One reason I mentioned the zinc deficiency issue is that sometimes not

eating is a sign of a zinc deficiency.

Also, I am on a list where people are utilizing gluten-casein free

diets. I will ask them if they have heard of this kind of cramping,

discomfort.

Best wishes.

Mom to kendra, alexander and camille

At 05:36 PM 12/15/01 -0500, you wrote:

>Dear Parents

>

>Our baby is now two years and three months. For the last

>two months he has suffered from what seems to be severe

>intermittent, abdominal cramping. His been constipated at times

>but not always and his stomach is bloated most of the time. He

>passes frequent, fowl smelling winds. His doctors have excluded

>gallstones (his stools were quite pale). The abdominal x-ray

>showed marked gaseous distension.

>They think he may have GIARDIA and have given him FLAGYL and

>DUFALAC. He continues to cry as if in severe pain and has not

>eaten for the last week.. He is on a gluten/casein free diet

>and has managed to take in some rice milk. He has been on this

>diet for four months now. He also recently had grommets and his

>ears are not infected.

>

>Getting him to sleep at night remains a difficult challenge.

>

>Does anyone have any experience or ideas on how we can help our

>son, as the doctors here in South Africa have never dealt much

>with CHARGE?

>

>Love and Gwynne

>

>

>________________________________________________

>Get your own " 800 " number

>Voicemail, fax, email, and a lot more

>http://www.ureach.com/reg/tag

>

>

>Membership of this email support groups does not constitute membership in

>the CHARGE Syndrome Foundation.

>For information about the CHARGE Syndrome

>Foundation or to become a member (and get the newsletter)

>please contact marion@... or visit

>the CHARGE Syndrome Foundation web page

>at http://www.chargesyndrome.org

>6th International CHARGE Syndrome Conference, Cleveland, Ohio,

>July 25-27, 2003. Information will be available at our website

>www.chargesyndrome.org or by calling 1-.

>

>

>