Re: IDF consulting immunologist program

[Guest guest]

Okay found the archives. Still dont know how the consulting program works.

does it work with your existing insurance or is it privately funded Thanks.

Becky

IDF consulting immunologist program

>

>

> Hi, everyone. Ben is taking the Acidophillus every day, still on

antibiotic, decognestant cough medicine, breathing tx twice a day. He still

has yucky stuff coming out his nose, and last night started with this

congested cough, of course the diarrhea is still with us. His ped wants to

see him tomorrow, shes wanting him to see the gastroenterologist again. I

dont want to because last time he just charged us 240.00, told me it was

toddlers diarrhea and not to give him juice. I told him twice I dont ever

give ben juice. He said " no juice for four days then call me " . So i wait

four days, call him and have to leave a voice mail. He never calls back. No

thanks. so i called the consulting immuno. program and she's at a seminar.I

left voice mail, i was wanting to ask how the program works. I could look in

our archives, but I dont know how to find them!! Can anyone tell me where

they are located? (dumb question, huh, sorry...) Thanks, Becky

>

>

> [Attachments have been removed from this message]

>

> > This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

[Guest guest]

Becky, the IDF Consulting Immunologist program works at a catapult more or

less. I believe Ben's physician must call.

Per the IDF web site

" The Immune Deficiency Foundation Consulting Immunologist Program, sponsored

by Centeon, is an established service for healthcare professionals;

primarily physicians. The primary component of the program is a central and

unified, nationwide too-free medical/scientific telephone information

service (network). The network was established to provide healthcare

professionals with easy and rapid access to experts, who can provide

up-to-date information and insight on patient-specific diagnosis and

management issues for Primary Immune Deficiency diseases. In addition, the

program will offer medical professionals peer to peer, collegial support and

expertise on the Primary Immune Deficiency diseases. This program is also

geared toward providing a true-benefit to patients and families. To reach

the Consulting Immunologist Program, call Tamara Brown at or by

e-mail at tb@.... "

hope that helps.

Ursula - & Macey (CVID) mom

[Guest guest]

Becky, sounds like Matt when he was younger. At 13yo I still keep an aware

eye/ear to his GI habits. It also helped Matt to put him on soy. The other

thing that helped was to limit his wheat. Periodically he does that to

himself now when his stools become troublesome.

Good luck. I truely believe the link between PID and GI

Helen

[Guest guest]

, I spent half the day on the phone and computer. I found a

pediatric GI in south bend (about an hour away) that takes my insurance,

wonder of all wonders. so im having the ped. write a referral to him

tomorrow. I believe ben's gi prob. are directly from his immunity probs. The

ped believes so too. So hopefully i can get this appt made tomorrow. thanks

alot, Becky

Re: IDF consulting immunologist program

>

>

> Becky,

>

> Is there another GI that you can see? I will tell you from my experience,

> GI troubles & PID's have gone hand & hand w/ Zach. The GI had his doubts

> that The GI troubles were caused by the PID, but it's funny that now that

> Zach is better PID wise & so are his GI troubles. I truely believ that

The

> GI troubles, at least in Zach's case were caused by the PID. Now our GI

> beleives it also. 2 other patients of his that recieve IVIg are doing

> better now too.

>

>

>

> > This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

[Guest guest]

well,l constant diarrhea alternating with mushy stools. Foul smelling,

totally intolerant of milk, drinks only water, koolaid, seven up, Similac

Lactose free formula.Sometimes abdominal distention, if he is given the

smallest amount of milk or juice (any kind)-green, explosive diarrhea that

is very difficult to stop. Before he starts an ear inf. or a runny nose, his

loose stools become even more loose. He weighs 28-29 pounds, which he has

weighed since last october. since he hasnt gained much height , he seems

like hes filled out, until you weigh him.

Whew, thats all i can think of at the moment! Becky

Re: IDF consulting immunologist program

>

>

> Becky,

> Specifically,

> what are his GI symptoms?

>

>

> > This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

[Guest guest]

Dear Helen: My daughter's problems have decreased since the IVIG, her

colitis now is do to stress. Our immunologist also feels there is a link to

cvid and GI problems. Just my two cents worth,

annette and alissa

>From: HBDOEM@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Re: IDF consulting immunologist program

>Date: Mon, 27 Sep 1999 21:24:21 EDT

>

>From: HBDOEM@...

>

>Becky, sounds like Matt when he was younger. At 13yo I still keep an aware

>eye/ear to his GI habits. It also helped Matt to put him on soy. The other

>thing that helped was to limit his wheat. Periodically he does that to

>himself now when his stools become troublesome.

>Good luck. I truely believe the link between PID and GI

>Helen

>

>>This forum is open to parents and caregivers of children diagnosed with a

>Primary Immune Deficiency. Opinions or medical advice stated here are the

>sole responsibility of the poster and should not be taken as professional

>advice.

[Guest guest]

Becky,

Your son could have Fructose Malabsorption Deficiency...a very uncommon form

of malabsorption. My son was diagnosed with it at the age of 2 1/2 after to

going from doctor to doctor to try to figure out what was wrong with him.

Often times, these patients also have lactose intolerance as well (which is a

totally different problem). To confirm a diagnosis you would need for him to

undergo a 2 1/2 to 3 hour breath hyrogren test with fructose. Fructose

Malabsorption is rare for the most part, but your son certainly fits the

description...hope this helps. BTW....GI would need to run the test as it is

a specialized test.

Autumn mom to Mark Cd5-Cd19 PID/ GERD, A!A, ASA

[Guest guest]

Autumn, I will look into having the new GI check into this.Just out of

curiosity, and I know it sounds weird, did your son's diapers actually smell

sweet when they were just wet diapers? I mentioned it to the ped, i mean

there is no amnonia smell at all, just sweet like fruit. She just kind of

shook her head at me, so I dropped it. But i didn't forget it. They did a

blood glucose and it was allright. But,I cant give ben even the smallest

taste of juice. He can have apple slices, just a couple and only once or

twice a week. Thanks for telling me about the test, it never hurts to make

them think of these uncommon things, sometimes they see so much of the

ordinary (toddlers diarrher, lol) they forget the uncommon. Thanks again,

Becky

To: <PedPIDonelist>

Sent: Tuesday, September 28, 1999 8:01 AM

Subject: Re: IDF consulting immunologist program

> From: Autti@...

>

> Becky,

>

> Your son could have Fructose Malabsorption Deficiency...a very uncommon

form

> of malabsorption. My son was diagnosed with it at the age of 2 1/2 after

to

> going from doctor to doctor to try to figure out what was wrong with him.

> Often times, these patients also have lactose intolerance as well (which

is a

> totally different problem). To confirm a diagnosis you would need for him

to

> undergo a 2 1/2 to 3 hour breath hyrogren test with fructose. Fructose

> Malabsorption is rare for the most part, but your son certainly fits the

> description...hope this helps. BTW....GI would need to run the test as it

is

> a specialized test.

>

> Autumn mom to Mark Cd5-Cd19 PID/ GERD, A!A, ASA

>

> > This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

[Guest guest]

thanks Helen, I haven't tried the wheat restriction yet. Now, the soy

formula he was on the whole first year of his life. He had loose stools

then, and lots more diarrhea. I dont know if the soy had lactose, I assume

not? for some reason this Lactose Free Similac has helped so far. i'm almost

afraid to try anything else new! Once the explosive diarrhea starts, it

takes almost two weeks to get him back to just loose stools. I will read up

on the wheat, thank you for jogging my memory on that. Becky

Re: IDF consulting immunologist program

> From: HBDOEM@...

>

> Becky, sounds like Matt when he was younger. At 13yo I still keep an aware

> eye/ear to his GI habits. It also helped Matt to put him on soy. The other

> thing that helped was to limit his wheat. Periodically he does that to

> himself now when his stools become troublesome.

> Good luck. I truely believe the link between PID and GI

> Helen

>

> > This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

[Guest guest]

Thanks , the funny thing is all Ben ever had was soy formula. He

always had loose stools, never a normal bowel movement. At a year I tried

whole, skim and 2 % milk. All caused explosive, green diarrhea which was

difficult to stop. I took him off all milk product then added things back

one by one. I tried soy milk (didn try goats, lol), lactaid, etc. For some

strange reason, lactose free similac formula just helped. The stools are

much like when he was on soy formula. so i am assuming this is probably the

best i can get at this point. In my mind, I am pointing the finger to the

immune system, you know? thanks for your help, I really appreciate it. Becky

Re: IDF consulting immunologist program

> >

> >

> >>

> >>

> >> Becky,

> >> Specifically,

> >> what are his GI symptoms?

> >>

> >>

> >> > This forum is open to parents and caregivers of children diagnosed

with a

> >Primary Immune Deficiency. Opinions or medical advice stated here are

the

> >sole responsibility of the poster and should not be taken as professional

> >advice.

> >

> >>This forum is open to parents and caregivers of children diagnosed with

a

> Primary Immune Deficiency. Opinions or medical advice stated here are the

> sole responsibility of the poster and should not be taken as professional

> advice.

> >

>

> > This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

[Guest guest]

thanks Annette, I agree with your immuno. I really feel very strongly that

his cvid is causing the gi problems. I keep wondering if i pushed the ped.

towards IVIG, if his gi symptoms would decrease? I go back and forth on

that. Thanks for the two cents! Becky

Re: IDF consulting immunologist program

> >Date: Mon, 27 Sep 1999 21:24:21 EDT

> >

> >From: HBDOEM@...

> >

> >Becky, sounds like Matt when he was younger. At 13yo I still keep an

aware

> >eye/ear to his GI habits. It also helped Matt to put him on soy. The

other

> >thing that helped was to limit his wheat. Periodically he does that to

> >himself now when his stools become troublesome.

> >Good luck. I truely believe the link between PID and GI

> >Helen

> >

> >>This forum is open to parents and caregivers of children diagnosed with

a

> >Primary Immune Deficiency. Opinions or medical advice stated here are

the

> >sole responsibility of the poster and should not be taken as professional

> >advice.

>

> > This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

[Guest guest]

Hi Becky,

I have been following this at a glance and I just thought of something. Has

Ben ever been tested for soy allergy? The way you describe his stools it

sounds like he could be allergic to soy. Just a thought ;o)

Re: IDF consulting immunologist program

>

>

>Thanks , the funny thing is all Ben ever had was soy formula. He

>always had loose stools, never a normal bowel movement. At a year I tried

>whole, skim and 2 % milk. All caused explosive, green diarrhea which was

>difficult to stop. I took him off all milk product then added things back

>one by one. I tried soy milk (didn try goats, lol), lactaid, etc. For some

>strange reason, lactose free similac formula just helped. The stools are

>much like when he was on soy formula. so i am assuming this is probably the

>best i can get at this point. In my mind, I am pointing the finger to the

>immune system, you know? thanks for your help, I really appreciate it.

Becky

> Re: IDF consulting immunologist program

>> >

>> >

>> >>

>> >>

>> >> Becky,

>> >> Specifically,

>> >> what are his GI symptoms?

>> >>

>> >>

>> >> > This forum is open to parents and caregivers of children diagnosed

>with a

>> >Primary Immune Deficiency. Opinions or medical advice stated here are

>the

>> >sole responsibility of the poster and should not be taken as

professional

>> >advice.

>> >

>> >>This forum is open to parents and caregivers of children diagnosed with

>a

>> Primary Immune Deficiency. Opinions or medical advice stated here are

the

>> sole responsibility of the poster and should not be taken as professional

>> advice.

>> >

>>

>> > This forum is open to parents and caregivers of children diagnosed with

a

>Primary Immune Deficiency. Opinions or medical advice stated here are the

>sole responsibility of the poster and should not be taken as professional

>advice.

>

>>This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

[Guest guest]

You know something ? He has never been tested for allergies to

anything. That is something to bring up today at the peds. Sometimes I

wonder why I don't think of these things! Thanks, Becky

Re: IDF consulting immunologist program

> >> >

> >> >

> >> >>

> >> >>

> >> >> Becky,

> >> >> Specifically,

> >> >> what are his GI symptoms?

> >> >>

> >> >>

> >> >> > This forum is open to parents and caregivers of children diagnosed

> >with a

> >> >Primary Immune Deficiency. Opinions or medical advice stated here are

> >the

> >> >sole responsibility of the poster and should not be taken as

> professional

> >> >advice.

> >> >

> >> >>This forum is open to parents and caregivers of children diagnosed

with

> >a

> >> Primary Immune Deficiency. Opinions or medical advice stated here are

> the

> >> sole responsibility of the poster and should not be taken as

professional

> >> advice.

> >> >

> >>

> >> > This forum is open to parents and caregivers of children diagnosed

with

> a

> >Primary Immune Deficiency. Opinions or medical advice stated here are

the

> >sole responsibility of the poster and should not be taken as professional

> >advice.

> >

> >>This forum is open to parents and caregivers of children diagnosed with

a

> Primary Immune Deficiency. Opinions or medical advice stated here are the

> sole responsibility of the poster and should not be taken as professional

> advice.

>

> > This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

[Guest guest]

Becky,

I am Rosemarie, and I just recently joined the list. I am new the immunoligical

side of all of this, and I have to say that it is quite overwhelming...

(I thought that my autistic world had language that I didn't understand ... but

now I feel like I am in med school LOL :->)

My son is autistic and definately has immune issues that we are trying to

address. He is currently on a gluten and casein free diet. This diet is

something that I would not change for anything at this point. Before we started

the diet, he had chronic diarhea and abdominal cramping that would

cause him to double over in pain on a regular basis ... since eliminating these

items, he has normal stool and is much happier and much more

" with this world. "

Many children do have " just " a wheat intolerance, but some have the issue with

gluten as well (gluten is the protein in wheat, rye, oat ..).

Casein is the protein in milk.

Good luck!

Rosemarie

<<thanks Helen, I haven't tried the wheat restriction yet. Now, the soy

formula he was on the whole first year of his life. He had loose stools

then, and lots more diarrhea. I dont know if the soy had lactose, I assume

not? for some reason this Lactose Free Similac has helped so far. i'm almost

afraid to try anything else new! Once the explosive diarrhea starts, it

takes almost two weeks to get him back to just loose stools. I will read up

on the wheat, thank you for jogging my memory on that. Becky>>

[Guest guest]

Thanks for the info Rosemarie. I am very overwhelmed at the thought of a

wheat or gluten free diet, even as a trial! I rmemeber as a child, I tested

highly allergic to wheat, malt, gluten, barley, you name it. What an awful

diet that was. thank god for allergy shots, they certainly worked for me.

The ped ordered a blood test to check for allergies. So we shall see...i am

very interested in the results. Thanks again, Becky

Re: IDF consulting immunologist program

> From: rdubrowsky@...

>

>

>

>

> Becky,

>

> I am Rosemarie, and I just recently joined the list. I am new the

immunoligical

> side of all of this, and I have to say that it is quite overwhelming...

> (I thought that my autistic world had language that I didn't understand

.... but

> now I feel like I am in med school LOL :->)

> My son is autistic and definately has immune issues that we are trying to

> address. He is currently on a gluten and casein free diet. This diet is

> something that I would not change for anything at this point. Before we

started

> the diet, he had chronic diarhea and abdominal cramping that would

> cause him to double over in pain on a regular basis ... since eliminating

these

> items, he has normal stool and is much happier and much more

> " with this world. "

>

> Many children do have " just " a wheat intolerance, but some have the issue

with

> gluten as well (gluten is the protein in wheat, rye, oat ..).

>

> Casein is the protein in milk.

>

> Good luck!

>

> Rosemarie

>

>

> <<thanks Helen, I haven't tried the wheat restriction yet. Now, the soy

> formula he was on the whole first year of his life. He had loose stools

> then, and lots more diarrhea. I dont know if the soy had lactose, I assume

> not? for some reason this Lactose Free Similac has helped so far. i'm

almost

> afraid to try anything else new! Once the explosive diarrhea starts, it

> takes almost two weeks to get him back to just loose stools. I will read

up

> on the wheat, thank you for jogging my memory on that. Becky>>

>

> > This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

[Guest guest]

Becky,

Is there another GI that you can see? I will tell you from my experience,

GI troubles & PID's have gone hand & hand w/ Zach. The GI had his doubts

that The GI troubles were caused by the PID, but it's funny that now that

Zach is better PID wise & so are his GI troubles. I truely believ that The

GI troubles, at least in Zach's case were caused by the PID. Now our GI

beleives it also. 2 other patients of his that recieve IVIg are doing

better now too.

[Guest guest]

Becky,

Specifically,

what are his GI symptoms?

[Guest guest]

Becky,

Sounds similar to Zach when he was younger, but he vomited too. I took him

off Lactose too & juice etc. What I found was that he was having trouble

digesting the protein in the formula not just the lactose. Assuming you've

had all the stool cultures & blood, tests, My personal reccomendation would

be to check w/you ped & try a totally dairy free formula. We tried the

lactose free for a long time w/no success. Then We had great success w/soy

& goat. Goat is more expensive but is supposedly better nutrition wise, but

taste wise kids don't like it. Zach developed an allergy to soy last year

(age 6) after yrs & yrs of sooo much soy.

Just a note though. It took about 3 months off the dairy to see results.

Talk it over w/your dr. but what can it hurt to try if you've exausted all

other measures?

At 06:53 PM 9/27/99 -0500, you wrote:

>

>

>well,l constant diarrhea alternating with mushy stools. Foul smelling,

>totally intolerant of milk, drinks only water, koolaid, seven up, Similac

>Lactose free formula.Sometimes abdominal distention, if he is given the

>smallest amount of milk or juice (any kind)-green, explosive diarrhea that

>is very difficult to stop. Before he starts an ear inf. or a runny nose, his

>loose stools become even more loose. He weighs 28-29 pounds, which he has

>weighed since last october. since he hasnt gained much height , he seems

>like hes filled out, until you weigh him.

>Whew, thats all i can think of at the moment! Becky

> Re: IDF consulting immunologist program

>

>

>>

>>

>> Becky,

>> Specifically,

>> what are his GI symptoms?

>>

>>

>> > This forum is open to parents and caregivers of children diagnosed with a

>Primary Immune Deficiency. Opinions or medical advice stated here are the

>sole responsibility of the poster and should not be taken as professional

>advice.

>

>>This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

>

[Guest guest]

Dear Becky, Alissa's GI problems decreased and also asthma problems

decreased a bit with the IVIG. I wish now they had started her on it years

ago. Take care and good luck,

annette and alissa

>

>Reply-To: PedPIDonelist

>To: <PedPIDonelist>

>Subject: Re: IDF consulting immunologist program

>Date: Tue, 28 Sep 1999 10:51:15 -0500

>

>

>

>thanks Annette, I agree with your immuno. I really feel very strongly that

>his cvid is causing the gi problems. I keep wondering if i pushed the ped.

>towards IVIG, if his gi symptoms would decrease? I go back and forth on

>that. Thanks for the two cents! Becky

> Re: IDF consulting immunologist program

> > >Date: Mon, 27 Sep 1999 21:24:21 EDT

> > >

> > >From: HBDOEM@...

> > >

> > >Becky, sounds like Matt when he was younger. At 13yo I still keep an

>aware

> > >eye/ear to his GI habits. It also helped Matt to put him on soy. The

>other

> > >thing that helped was to limit his wheat. Periodically he does that to

> > >himself now when his stools become troublesome.

> > >Good luck. I truely believe the link between PID and GI

> > >Helen

> > >

> > >>This forum is open to parents and caregivers of children diagnosed

>with

>a

> > >Primary Immune Deficiency. Opinions or medical advice stated here are

>the

> > >sole responsibility of the poster and should not be taken as

>professional

> > >advice.

> >

> > > This forum is open to parents and caregivers of children diagnosed

>with a

>Primary Immune Deficiency. Opinions or medical advice stated here are the

>sole responsibility of the poster and should not be taken as professional

>advice.

>

>>This forum is open to parents and caregivers of children diagnosed with a

>Primary Immune Deficiency. Opinions or medical advice stated here are the

>sole responsibility of the poster and should not be taken as professional

>advice.

[Guest guest]

Do you mean Neutramagin formula?

Re: IDF consulting immunologist program

>

>

>FYI on the nutramingim. was on that formula for

>8 months. The thing about the formula is the stools

>are almost always loose diarreha type. But it was the

>only thing she did projectile vomit. She even did

>that with breast milk.

>

>It is like someone said very expensive. Our dr always

>gave us lots of free samples. It is predigested and

>has no lastose or soy in it.

>

>=====

> and

>(congential neutropenia, hypogammaglobulinemia, chronic sinusitis and

leukopenia)

>mom to Evan 6, 4 and Abby Rose 2

>>This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

[Guest guest]

Hi!

I have also felt strongly that the GI problems have to be related to the

CVID. has had them since he was very young. He also underwent every

yucky test the doctors could think of in order to help with a diagnosis.

There never was a clear cut diagnosis of the GI problems though. Just my two

cents worth.

Lee

[Guest guest]

yes.

sandra

[Guest guest]

thanks lee, i always feel better with a little back up! Becky

Re: IDF consulting immunologist program

> From: Kmeyer1020@...

>

> Hi!

>

> I have also felt strongly that the GI problems have to be related to the

> CVID. has had them since he was very young. He also underwent every

> yucky test the doctors could think of in order to help with a diagnosis.

> There never was a clear cut diagnosis of the GI problems though. Just my

two

> cents worth.

>

> Lee

>

> > This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.