RE: Help? Any Ideas?

[Guest guest]

" ...sinus infections, bronchitis, migraines(but

they have been around for a very long time) and stomach trouble...CT showed

entire colon

inflamed, diagnosed with infectious colitis, stool samples had blood in

them but cultures showed no infection... -mild inflammation in

the transverse colon and esophagus. Comes down with bronchitis again

the following week and ends up two weeks from the first visit to ER-

back in the ER with identical problem of infectious colitis (no

treatment, just pain killers). During both of these times with the

colitis he complains of back pain...Increase

nexium and add sucralfate...Vomiting

starts from 1-4 am lasts most of the day...right side and up between shoulder

blade...

cloudy urine, 2+ protein in urine, slightly elevated liver enzymes,

high A/G ratio. Immuno says not related to symptoms. Any ideas? "

Theresa,

I don't have answers for you but, if it were my kiddo, I'd want to check...

Colitis: Did they do 3 consecutive stool tests to check for c.diff toxin?

Liver/stones: Did they check LDH (lactate dehydrogenase) for a liver problem?

Did they check for gallstones?

Pancreas: Did they check amylase and lipase? Bilirubin?

mom to CVIDer

[Guest guest]

gallbladder??? kidney stones??? Either of these could cause the symptoms and

sometimes a rare appendicitis acts this way.

BARBIE

________________________________

From: TERESA EOS <tereeos6@...>

group < >

Sent: Wednesday, December 17, 2008 2:16:15 AM

Subject: Help? Any Ideas?

Hi All,

My son Devin, 16, CVID has had a bad year. Nothing really major, but just

constant problems, sinus infections, bronchitis, migraines(but they have been

around for a very long time) and stomach trouble. Not much help from doctors.

First couple weeks of school were great, no problems at all (only 1 bad

headache)

After abasketball workout he had bad stomach pain (he had 7 ulcers found a few

years ago & he thought his stomach was just acting up). We finally went to ER

his pain was really bad, CT showed entire colon inflamed, diagnosed with

infectious colitis, stool samples had blood in them but cultures showed no

infection. Sent home-pain for 3 days then back to normal. Went in approx. 1

week after ER visit for colonoscopy & upper endoscopy nothing out of the

ordinary -mild inflammation in the transverse colon and esophagus. Comes down

with bronchitis again the following week and ends up two weeks from the first

visit to ER- back in the ER with identical problem of infectious colitis (no

treatment, just pain killers). During both of these times with the colitis he

complains of back pain. About 1 week after 2nd colitis has stabbing pain in

lower right back, was not doing any exercise or activity to bring on became very

severe, after several trips to doctors

simply told it was muscle pain. Went away about 5 days later. About 6 days

after that- pain in middle back when swallowing liquid or food, to the point he

was unable to eat or drink. Sometimes pain radiated out to the right side and up

between shoulder blades. After CT scan, upper gi - nothing found, the docs best

bet was ulcer in esophagus. Increase nexium and add sucralfate. Since the back

pain starting in the mid-back he has had 5 seperate

days about 3 to 4 days apart of what seems like a stomach flu. Vomiting starts

from 1-4 am lasts most of the day. He said it feels like food poisoning. Pain

in the back has continued intermittently but much more intense on right side and

up between shoulder blade. Latest labs showed cloudy urine, 2+ protein in

urine, slightly elevated liver enzymes, high A/G ratio. Immuno says not related

to symptoms. Any ideas?

Thanks,

(Mom to Devin, 16, CVID)

[Guest guest]

Thanks for replies. They only did the stool tests from the 1st colitis once,

ordered at the ER. I dont see any tests for amylase or lipase but bilirubin is

..7 with range .2-1.1 on most recent labs. I also don't see LDH. Are those all

tests for the liver? His GI doc has been next to impossible to get hold of,

their practice was bought out and they are now very understaffed. We have an

appt with a new GI on 12-30. As far as his gallbladder, I think I've they have

done is the CT to check for stones.

Thanks

@...: dietdoc@...: Wed, 17 Dec 2008

03:46:53 -0800Subject: Re: Help? Any Ideas?

" ...sinus infections, bronchitis, migraines(butthey have been around for a very

long time) and stomach trouble...CT showed entire coloninflamed, diagnosed with

infectious colitis, stool samples had blood inthem but cultures showed no

infection... -mild inflammation inthe transverse colon and esophagus. Comes down

with bronchitis againthe following week and ends up two weeks from the first

visit to ER-back in the ER with identical problem of infectious colitis

(notreatment, just pain killers). During both of these times with thecolitis he

complains of back pain...Increasenexium and add sucralfate...Vomitingstarts from

1-4 am lasts most of the day...right side and up between shoulder blade...cloudy

urine, 2+ protein in urine, slightly elevated liver enzymes,high A/G ratio.

Immuno says not related to symptoms. Any ideas? " Theresa,I don't have answers for

you but, if it were my kiddo, I'd want to check...Colitis: Did they do 3

consecutive stool tests to check for c.diff toxin?Liver/stones: Did they check

LDH (lactate dehydrogenase) for a liver problem? Did they check for

gallstones?Pancreas: Did they check amylase and lipase? Bilirubin?mom to

CVIDer

[Guest guest]

Kidney stones can still be a possibility. They are tricky sometimes. I had my

first one when I was 15 yo and sometimes they can be small and multiple and pass

and not be detected. They can cause signs of infection in the urine and also

protein and blood. VERY PAINFUL and can be mistaken for bowel problems and gall

stones etc. Many doctors think that kids are too young. Best way to get rid of

them is to DRINK DRINK and DRINK .

BARBIE

________________________________

From: TERESA EOS <tereeos6@...>

group < >

Sent: Wednesday, December 17, 2008 12:42:02 PM

Subject: RE: Help? Any Ideas?

Thanks for replies. They only did the stool tests from the 1st colitis once,

ordered at the ER. I dont see any tests for amylase or lipase but bilirubin is

..7 with range .2-1.1 on most recent labs. I also don't see LDH. Are those all

tests for the liver? His GI doc has been next to impossible to get hold of,

their practice was bought out and they are now very understaffed. We have an

appt with a new GI on 12-30. As far as his gallbladder, I think I've they have

done is the CT to check for stones.

Thanks

groups (DOT) comFrom: dietdocsbcglobal (DOT) netDate: Wed, 17 Dec 2008

03:46:53 -0800Subject: Re: Help? Any Ideas?

" ...sinus infections, bronchitis, migraines(butthey have been around for a very

long time) and stomach trouble...CT showed entire coloninflamed, diagnosed with

infectious colitis, stool samples had blood inthem but cultures showed no

infection... -mild inflammation inthe transverse colon and esophagus. Comes down

with bronchitis againthe following week and ends up two weeks from the first

visit to ER-back in the ER with identical problem of infectious colitis

(notreatment, just pain killers). During both of these times with thecolitis he

complains of back pain...Increasenexi um and add sucralfate.. .Vomitingstarts

from 1-4 am lasts most of the day...right side and up between shoulder

blade...cloudy urine, 2+ protein in urine, slightly elevated liver enzymes,high

A/G ratio. Immuno says not related to symptoms. Any ideas? " Theresa, I don't have

answers for you but, if it were my kiddo, I'd want to check...Colitis: Did they

do 3 consecutive stool tests to

check for c.diff toxin?Liver/ stones: Did they check LDH (lactate

dehydrogenase) for a liver problem? Did they check for gallstones?Pancreas : Did

they check amylase and lipase? Bilirubin?mo m to CVIDer [Non-text

portions of this message have been removed]

[Guest guest]

Great article

BARBIE

________________________________

From: Schulman <dietdoc@...>

Sent: Wednesday, December 17, 2008 1:27:20 PM

Subject: Re: Help? Any Ideas?

http://www.mayoclin ic.com/health/ abdominal- pain/DG00013

Theresa,

I just found this article and you might find it helpful. It lists different

kinds of GI related pain and associates it with possible condition and when to

call the doc. It's a must read for everyone.

____________ _________ _________ __

From: TERESA EOS <tereeos6msn (DOT) com>

group <groups (DOT) com>

Sent: Wednesday, December 17, 2008 10:42:02 AM

Subject: RE: Help? Any Ideas?

Thanks for replies. They only did the stool tests from the 1st colitis once,

ordered at the ER. I dont see any tests for amylase or lipase but bilirubin is

..7 with range .2-1.1 on most recent labs. I also don't see LDH. Are those all

tests for the liver? His GI doc has been next to impossible to get hold of,

their practice was bought out and they are now very understaffed. We have an

appt with a new GI on 12-30. As far as his gallbladder, I think I've they have

done is the CT to check for stones.

Thanks

groups (DOT) comFrom: dietdocsbcglobal (DOT) netDate: Wed, 17 Dec 2008

03:46:53 -0800Subject: Re: Help? Any Ideas?

" ...sinus infections, bronchitis, migraines(butthey have been around for a very

long time) and stomach trouble...CT showed entire coloninflamed, diagnosed with

infectious colitis, stool samples had blood inthem but cultures showed no

infection... -mild inflammation inthe transverse colon and esophagus. Comes down

with bronchitis againthe following week and ends up two weeks from the first

visit to ER-back in the ER with identical problem of infectious colitis

(notreatment, just pain killers). During both of these times with thecolitis he

complains of back pain...Increasenexi um and add sucralfate.. .Vomitingstarts

from 1-4 am lasts most of the day...right side and up between shoulder

blade...cloudy urine, 2+ protein in urine, slightly elevated liver enzymes,high

A/G ratio. Immuno says not related to symptoms. Any ideas? " Theresa, I don't have

answers for you but, if it were my kiddo, I'd want to check...Colitis: Did they

do 3 consecutive stool tests to

check for c.diff toxin?Liver/ stones: Did they check LDH (lactate dehydrogenase)

for a liver problem? Did they check for gallstones?Pancreas : Did they check

amylase and lipase? Bilirubin?mo m to CVIDer [Non-text portions of this

message have been removed]

[Guest guest]

---That sounds exactly like my symptoms right before I had my gall

bladder out. My sister had hers out too.....and we would both describe

it like a stabbing, or even a charlie horse, between the shoulder

blades. I was pregnant at the time, and drs kept telling me it was the

baby kicking(it was myfirst kid so I believed them!)

But have they checked his gall bladder out?

valarie

mom to 3 w/cvid

In , TERESA EOS <tereeos6@...> wrote:

>

>

> Hi All,

>

> My son Devin, 16, CVID has had a bad year. Nothing really major,

but just constant problems, sinus infections, bronchitis,

migraines(but they have been around for a very long time) and stomach

trouble. Not much help from doctors.

>

> First couple weeks of school were great, no problems at all (only 1

bad headache)

> After abasketball workout he had bad stomach pain (he had 7 ulcers

found a few years ago & he thought his stomach was just acting up).

We finally went to ER his pain was really bad, CT showed entire colon

inflamed, diagnosed with infectious colitis, stool samples had blood

in them but cultures showed no infection. Sent home-pain for 3 days

then back to normal. Went in approx. 1 week after ER visit for

colonoscopy & upper endoscopy nothing out of the ordinary -mild

inflammation in the transverse colon and esophagus. Comes down with

bronchitis again the following week and ends up two weeks from the

first visit to ER- back in the ER with identical problem of infectious

colitis (no treatment, just pain killers). During both of these times

with the colitis he complains of back pain. About 1 week after 2nd

colitis has stabbing pain in lower right back, was not doing any

exercise or activity to bring on became very severe, after several

trips to doctors simply told it was muscle pain. Went away about 5

days later. About 6 days after that- pain in middle back when

swallowing liquid or food, to the point he was unable to eat or drink.

Sometimes pain radiated out to the right side and up between shoulder

blades. After CT scan, upper gi - nothing found, the docs best bet

was ulcer in esophagus. Increase nexium and add sucralfate. Since

the back pain starting in the mid-back he has had 5 seperate

> days about 3 to 4 days apart of what seems like a stomach flu.

Vomiting starts from 1-4 am lasts most of the day. He said it feels

like food poisoning. Pain in the back has continued intermittently

but much more intense on right side and up between shoulder blade.

Latest labs showed cloudy urine, 2+ protein in urine, slightly

elevated liver enzymes, high A/G ratio. Immuno says not related to

symptoms. Any ideas?

>

> Thanks,

> (Mom to Devin, 16, CVID)

>

>

>

[Guest guest]

Thanks for the mayo link, very good article. We live in Colorado and we've had

trouble finding a good GI. I really liked the doctor we had but he didn't seem

to be very decisive as far as figuring out how to treat him. Our immuno ordered

an ultrasound of his kidneys-everything ok. The CT of the belly and upper gi,

have been the only other tests done. Would a problem with his gallbladder cause

him to have pain at the mid back when swallowing liquids or solids? Is a

hide-a-scan or a ultrasound of the gallbladder whats normally used to see if

there is anything going on? The mid back pain has been intermittent since it

first started but I can't imagine it's not related to his vomiting. I asked his

immuno about the numbers that were off on his labs and the response I got was

that it wouldn't cause his symptoms.

@...: mother5590@...: Wed, 17 Dec 2008

12:41:36 -0800Subject: Re: Help? Any Ideas?

Great articleBARBIE ________________________________From: Schulman

<dietdoc@...>@...: Wednesday, December 17,

2008 1:27:20 PMSubject: Re: Help? Any Ideas?http://www.mayoclin

ic.com/health/ abdominal- pain/DG00013Theresa,I just found this article and you

might find it helpful. It lists different kinds of GI related pain and

associates it with possible condition and when to call the doc. It's a must read

for everyone.____________ _________ _________ __From: TERESA EOS

<tereeos6msn (DOT) com>group <groups (DOT) com>Sent: Wednesday,

December 17, 2008 10:42:02 AMSubject: RE: Help? Any Ideas?Thanks for

replies. They only did the stool tests from the 1st colitis once, ordered at the

ER. I dont see any tests for amylase or lipase but bilirubin is .7 with range

..2-1.1 on most recent labs. I also don't see LDH. Are those all tests for the

liver? His GI doc has been next to impossible to get hold of, their practice was

bought out and they are now very understaffed. We have an appt with a new GI on

12-30. As far as his gallbladder, I think I've they have done is the CT to check

for stones.Thanksgroups (DOT) comFrom: dietdocsbcglobal (DOT)

netDate: Wed, 17 Dec 2008 03:46:53 -0800Subject: Re: Help? Any

Ideas? " ...sinus infections, bronchitis, migraines(butthey have been around for a

very long time) and stomach trouble...CT showed entire coloninflamed, diagnosed

with infectious colitis, stool samples had blood inthem but cultures showed no

infection... -mild inflammation inthe transverse colon and esophagus. Comes down

with bronchitis againthe following week and ends up two weeks from the first

visit to ER-back in the ER with identical problem of infectious colitis

(notreatment, just pain killers). During both of these times with thecolitis he

complains of back pain...Increasenexi um and add sucralfate.. .Vomitingstarts

from 1-4 am lasts most of the day...right side and up between shoulder

blade...cloudy urine, 2+ protein in urine, slightly elevated liver enzymes,high

A/G ratio. Immuno says not related to symptoms. Any ideas? " Theresa, I don't have

answers for you but, if it were my kiddo, I'd want to check...Colitis: Did they

do 3 consecutive stool tests tocheck for c.diff toxin?Liver/ stones: Did they

check LDH (lactate dehydrogenase) for a liver problem? Did they check for

gallstones?Pancreas : Did they check amylase and lipase? Bilirubin?mo m

to CVIDer

[Guest guest]

I'm so sorry that I don't have answers for you. But, if he has pain and a blood

draw, I'd ask that the docs recheck liver panel and pancreas (lipases). Also,

get proper stool samples for the whole shebang (microorganisms and eggs). Are

you near Nat. Jewish? Our immuno once consulted with a dr. Leung (immuno/GI)

years ago. Perhaps others have ideas for trustworthy GIs in your area.

I'm not sure what the protocol is for checking gallbladder. But you should have

a doctor you can defer to for answers.

Keep us posted.

Sent on the Now Network™ from my Sprint® BlackBerry

Re: Help? Any

Ideas? " ...sinus infections, bronchitis, migraines(butthey have been around for a

very long time) and stomach trouble...CT showed entire coloninflamed, diagnosed

with infectious colitis, stool samples had blood inthem but cultures showed no

infection... -mild inflammation inthe transverse colon and esophagus. Comes down

with bronchitis againthe following week and ends up two weeks from the first

visit to ER-back in the ER with identical problem of infectious colitis

(notreatment, just pain killers). During both of these times with thecolitis he

complains of back pain...Increasenexi um and add sucralfate.. .Vomitingstarts

from 1-4 am lasts most of the day...right side and up between shoulder

blade...cloudy urine, 2+ pro!

tein in

urine, slightly elevated liver enzymes,high A/G ratio. Immuno says not related

to symptoms. Any ideas? " Theresa, I don't have answers for you but, if it were my

kiddo, I'd want to check...Colitis: Did they do 3 consecutive stool tests

tocheck for c.diff toxin?Liver/ stones: Did they check LDH (lactate

dehydrogenase) for a liver problem? Did they check for gallstones?Pancreas : Did

they check amylase and lipase? Bilirubin?mo m to CVIDer [Non-text

portions of this message have been removed] [Non-text portions of this message

have been removed]

[Guest guest]

We aren't too far from National Jewish. We have had a visit with Dr. Gelfand

there a little over a year ago and had a bad experience, so I've been leary to

go back to National Jewish. I will certainly look up Dr. Leung and see if he's

still around. It seems like everytime I read about another kiddo in the

group having trouble their doctors are so much more aggressive in seeking an

answer. It seems like most of the docs we see in the ER and otherwise are a

little overwhelmed by his problems. These replies have all been very helpful,

thanks so much.

@...: dietdoc@...: Thu, 18 Dec 2008

19:58:32 +0000Subject: Re: Help? Any Ideas?

I'm so sorry that I don't have answers for you. But, if he has pain and a blood

draw, I'd ask that the docs recheck liver panel and pancreas (lipases). Also,

get proper stool samples for the whole shebang (microorganisms and eggs). Are

you near Nat. Jewish? Our immuno once consulted with a dr. Leung (immuno/GI)

years ago. Perhaps others have ideas for trustworthy GIs in your area. I'm not

sure what the protocol is for checking gallbladder. But you should have a doctor

you can defer to for answers. Keep us posted. Sent on the Now Network�

from my Sprint® BlackBerry Re:

Help? Any Ideas? " ...sinus infections, bronchitis, migraines(butthey

have been around for a very long time) and stomach trouble...CT showed entire

coloninflamed, diagnosed with infectious colitis, stool samples had blood inthem

but cultures showed no infection... -mild inflammation inthe transverse colon

and esophagus. Comes down with bronchitis againthe following week and ends up

two weeks from the first visit to ER-back in the ER with identical problem of

infectious colitis (notreatment, just pain killers). During both of these times

with thecolitis he complains of back pain...Increasenexi um and add sucralfate..

..Vomitingstarts from 1-4 am lasts most of the day...right side and up between

shoulder blade...cloudy urine, 2+ pro! tein in urine, slightly elevated liver

enzymes,high A/G ratio. Immuno says not related to symptoms. Any ideas? " Theresa,

I don't have answers for you but, if it were my kiddo, I'd want to

check...Colitis: Did they do 3 consecutive stool tests tocheck for c.diff

toxin?Liver/ stones: Did they check LDH (lactate dehydrogenase) for a liver

problem? Did they check for gallstones?Pancreas : Did they check amylase and

lipase? Bilirubin?mo m to CVIDer [Non-text portions of this message have

been removed]

[Guest guest]

Theresa,

I'm so sorry -- had forgotten you had a negative experience there. That's

terrible and I would never tell you to return to a place that let you down.

Maybe others in CO can suggest a doc?

Sent on the Now Network™ from my Sprint® BlackBerry

Re:

Help? Any Ideas? " ...sinus infections, bronchitis, migraines(butthey

have been around for a very long time) and stomach trouble...CT showed entire

coloninflamed, diagnosed with infectious colitis, stool samples had blood inthem

but cultures showed no infection... -mild inflammation inthe transverse colon

and esophagus. Comes down with bronchitis againthe following week and ends up

two weeks from the first visit to ER-back in the ER with identical problem of

infectious colitis (notreatment, just pain killers). During both of these times

with thecolitis he complains of back pain...Increasenexi um and add sucralfate..

..Vomitingstarts from 1-4 am lasts most of the day...right side and up between

shoulder blade...cloudy urine, 2+ pro! tein in urine, slightly elevated liver

enzymes,high A/G ratio. Immuno says not related to symptoms. Any ideas? " Theresa,

I don't have answers for you but, if it were my kiddo, I'd want to

check...Colitis: Did they do 3 consecutive stool tests tocheck for c.diff

toxin?Liver/ stones: Did they check LDH (lactate dehydrogenase) for a liver

problem? Did they check for gallstones?Pancreas : Did they check amylase and

lipase? Bilirubin?mo m to CVIDer [Non-text portions of this message have

been removed]

[Guest guest]

Becki and ...

 

We too had a less than pleasant experience with Dr Gelfand. We had high hopes

and expectations as he had diagnosed a co-worker's son with very rare immune

disorder and she highly recoomended him and strongly urged us to see him.

Needless to say our experience was less than that. We drove 6hours, and he did

basically no testing on my youngest son, and refused to look at previous labs

etc because our boys " looked too good " and there was no way my kids could have

an immune deficiency. That and all of our previous testing was " invalid " and

" wrong " .

 

I was told to take my eldest off IVIG right then and there, refused to believe

that my eldest had a history of an invasive fungal infection that ate at his

orbital floor (despite lab and CT results to prove it) They also said that they

could not have immune probs as my eldest tested positive for allergy testing for

Alternaria (this was the same fungus that caused his fungal infection, which he

was not positive for before said infection) We were also quite rudely told that

the boys could not have ANY T cell problems ( alex has history of low T cell

amounts and Max has history of not responding on T cell function testing)

because pf how they looked and " did I know what a T Cell immune deficiency child

looked like? " (those were his exact words)

He spent all of 20min with me the first meeting and for the second he showed up

late (I met with his fellow) and was quite irritated with any and all of my

questions.

 

Since then my youngest who was deemed " normal " by his standards is starting

G-CSF after his bone marrow biopsy, is on IV iron as well, and has been sick

requiring antibiotics 4 times since the end of September, His total Igg has

dropped to 400 from 780 (still normal for his age range so I'm not that

concerned) My oldest who is on IVIG has also required anitbiotics for infections

etc and has had poor lung function testing since then as well. (although that

according to Dr Gelfand was poorly controlled asthma, it COULDNT possibly be the

repeated lung infections.)

 

The fellow we met with was nice, although I had to call 5 times to get the

results of the complement testing they did as no one would call me back. The

fellow's dictation of my oldest suggest that they were going to be part of

follow up and my current though is over my dead body. This guy didnt even

EXAMINE my children. It was devasting as he was talked up sooo much and I had

high expectations as well, hoping to get answers and some possible genetic

testing done on my boys, that had been previously suggested by an IDF doc I had

talked to at a family conference.

 

I did call the IDF after my expereince, and unfortunately mine was not a new

complaint. Apparantly this doc does not believe in " gray areas " and unless you

are a classic textbook Immune deficincey~ severe CVID, SCID, XLA~ then you are

fine. I was given other names to try but to be honest I am scarred from this

experience and have yet to find the courage to seek answers again. Right now

remains on IVIG until spring when the current Immuno wants to try him off

again as he partly agreed with this Dr G. ( we have recently moved from MN to

NM) but we will see. Max the one needing IV iron and GCSF is also being followed

by the hematologist so we will see what happens in the next few months.

 

Please let us know how it goes, and know I EMPATHIZE COMPLETLEY and feel bad for

each and everyone of us who goes through this.

 

Missy

From: Becki Rion <rionfam@...>

Subject: Re: Help? Any Ideas?

Date: Friday, December 26, 2008, 9:38 PM

,

Sounds like you got the same kind of response that we did...only

with us he said there was no way Reagon was having allergies because

she has no IgE and that the skin rash she had was not eczema..even

though the dermatologist there had already said it was. We now

follow their eczema regiment as treatment for it. He acted like I

was crazy when I told him that although she had no IgE, she tested

positive for food sensitivities that were cellular immune mediated

and that when we cut the foods out that she tested positive for, her

GI and skin issues would resolve. Since we were there two weeks I

even let them feed her a known food sensitivity and she broke out

within hours of eating it. He still wouldn't believe me. He also

wouldn't believe how severe her reactions to IVIG were and told me

he'd have to see one to believe it because he was able to infuse IVIG

to patients in an hour without causing any side effects. I left

frustrated with that aspect of our visit, but very happy with the

eczema treatment knowledge we learned there.

Good luck! I know how frustrating it is when no one can figure these

poor kids out!! I hope you get some answers soon.

Becki

[Guest guest]

Hi All,

Missy your experience with Dr. Gelfand was identical to mine. There were a

couple of things he said like " Do you trust me? " and " IVIG is used as a crutch

for many " that really got to me. I'm glad to hear that you complained to the

IDF. I should have after our visit. We saw him almost 18 months ago. Devin's

problems have increased quite a bit since then so I'm so glad I didn't follow

his advice. Did he talk to you like you had no idea what was going on with your

kids? I felt like he was suggesting some of the illnesses weren't really what

they were diagnosed as. That may sound wierd but when I told him Devin had

pneumonia 8 times, he said " How do you know? " . I thought at the time maybe it

was just our doctor that he didn't like. I don't know, the whole visit was

really strange.

This time I plan on being much more prepared, I'm going to bring records from

the ER, labs, and tests. I'm going to write everything down too as I have a

habit of forgetting things too.

@...: m_boggio@...: Fri, 26 Dec 2008

20:16:46 -0800Subject: Re: Re: Help? Any Ideas?

Becki and ... We too had a less than pleasant experience with Dr Gelfand.

We had high hopes and expectations as he had diagnosed a co-worker's son with

very rare immune disorder and she highly recoomended him and strongly urged us

to see him. Needless to say our experience was less than that. We drove 6hours,

and he did basically no testing on my youngest son, and refused to look at

previous labs etc because our boys " looked too good " and there was no way my

kids could have an immune deficiency. That and all of our previous testing was

" invalid " and " wrong " . I was told to take my eldest off IVIG right then and

there, refused to believe that my eldest had a history of an invasive fungal

infection that ate at his orbital floor (despite lab and CT results to prove it)

They also said that they could not have immune probs as my eldest tested

positive for allergy testing for Alternaria (this was the same fungus that

caused his fungal infection, which he was not positive for before said

infection) We were also quite rudely told that the boys could not have ANY T

cell problems ( alex has history of low T cell amounts and Max has history of

not responding on T cell function testing) because pf how they looked and " did I

know what a T Cell immune deficiency child looked like? " (those were his exact

words) He spent all of 20min with me the first meeting and for the second he

showed up late (I met with his fellow) and was quite irritated with any and all

of my questions. Since then my youngest who was deemed " normal " by his

standards is starting G-CSF after his bone marrow biopsy, is on IV iron as well,

and has been sick requiring antibiotics 4 times since the end of September, His

total Igg has dropped to 400 from 780 (still normal for his age range so I'm not

that concerned) My oldest who is on IVIG has also required anitbiotics for

infections etc and has had poor lung function testing since then as well.

(although that according to Dr Gelfand was poorly controlled asthma, it COULDNT

possibly be the repeated lung infections.) The fellow we met with was nice,

although I had to call 5 times to get the results of the complement testing they

did as no one would call me back. The fellow's dictation of my oldest suggest

that they were going to be part of follow up and my current though is over my

dead body. This guy didnt even EXAMINE my children. It was devasting as he was

talked up sooo much and I had high expectations as well, hoping to get answers

and some possible genetic testing done on my boys, that had been previously

suggested by an IDF doc I had talked to at a family conference. I did call the

IDF after my expereince, and unfortunately mine was not a new complaint.

Apparantly this doc does not believe in " gray areas " and unless you are a

classic textbook Immune deficincey~ severe CVID, SCID, XLA~ then you are fine. I

was given other names to try but to be honest I am scarred from this experience

and have yet to find the courage to seek answers again. Right now remains

on IVIG until spring when the current Immuno wants to try him off again as he

partly agreed with this Dr G. ( we have recently moved from MN to NM) but we

will see. Max the one needing IV iron and GCSF is also being followed by the

hematologist so we will see what happens in the next few months. Please let us

know how it goes, and know I EMPATHIZE COMPLETLEY and feel bad for each and

everyone of us who goes through this. MissyFrom: Becki Rion <rionfam@...>Subject:

Re: Help? Any Ideas?@...: Friday, December 26, 2008,

9:38 PM,Sounds like you got the same kind of response that we did...only

with us he said there was no way Reagon was having allergies because she has no

IgE and that the skin rash she had was not eczema..even though the dermatologist

there had already said it was. We now follow their eczema regiment as treatment

for it. He acted like I was crazy when I told him that although she had no IgE,

she tested positive for food sensitivities that were cellular immune mediated

and that when we cut the foods out that she tested positive for, her GI and skin

issues would resolve. Since we were there two weeks I even let them feed her a

known food sensitivity and she broke out within hours of eating it. He still

wouldn't believe me. He also wouldn't believe how severe her reactions to IVIG

were and told me he'd have to see one to believe it because he was able to

infuse IVIG to patients in an hour without causing any side effects. I left

frustrated with that aspect of our visit, but very happy with the eczema

treatment knowledge we learned there. Good luck! I know how frustrating it is

when no one can figure these poor kids out!! I hope you get some answers

soon.Becki

[Guest guest]

Dear ,

Again, I'm so sorry about your experience at National Jewish. It can be

traumatic for a mom to have to deal with professionals that have let their

children down. And I so appreciate the brave moms that were forthcoming with

their experiences as well.

Given what you've been through already, I just wanted to make sure that I did

not confuse you in any way. Please know that I have never actually met with Dr.

Lueng so it's hard for me to make a referral. He was consulted by our immuno on

my daughter's case several years ago (immuno to immuno) and was very smart.

Unfortunately, I can not tell you about his bedside manner or whether or not he

can help Devin. I'm wonderfing if the IDF has any insights or if anyone in our

group has actually met with him.

Also, you mention that Devin has been on sub-q for almost 4 years and his IgG

levels are 680-700. At this point, there are no set guidelines for exactly

where IgG levels should be while on sug-q -- and it may vary for each child.

However, these number do seem significantly below what the average child is

running in this group. (My daughter could hardly manage with these levels as

her IVIG trough.) Most kiddos in our group seem to manage best with IgG at

1000+ on sub-q.

Anyway, it looks like Dr. Leung has a lot of expertise in allergic conditions --

though my immuno consulted him on a GI case years ago.

I'm so sorry that I can't be of more help in making sure you get the right care.

Maybe someone in the group has met him and can give proper feedback? Anyone?

Please let us know how it goes.

mom to CVIDer

________________________________

From: TERESA EOS <tereeos6@...>

group < >

Sent: Friday, December 26, 2008 6:59:49 PM

Subject: RE: Re: Help? Any Ideas?

Becki,

I have looked up some other docs at National Jewish and I'm going to give them

another try. had suggested Dr. Lueng who is still there and I have set

an appointment with him. (Thanks ) I'm going to specifically ask not to

see Dr. Gelfand. He doesn't seem to need medical records, labs, or history to

un-diagnose an immune deficiency which kind of left my head spinning a bit. His

opinion was that Devin couldn't have an immune problem because he had allergies

to cats, dogs, dust and trees and because he looked fine. I really am only

looking for a new immunologist because we have been with our current one for

several years and Devin is still frequently ill. He's been on IVIG and now

sub-q for almost 4 years and his IGG levels are staying around 680-700. I'm

just not sure that's enough for him.

In the meantime we see a new GI doctor who I hope will be more available than

our old one. Devin had another night of vomiting last night that started around

2:30 a.m. and again with the middle back pain when eating. I kind of figure

it's time for some new eyes. He just has a lot of chronic problems that really

disrupt his life and he's just sick of it and of course so am I.

Mom Devin 16 CVID

groups (DOT) comFrom: rionfamgvtc (DOT) comDate: Fri, 26 Dec 2008

22:04:13 +0000Subject: Re: Help? Any Ideas?

,I'm glad to hear we weren't the only ones! I had heard amazing things

about Dr. Gelfand and so we waited months for an appointment to see him and then

flew up there from Texas and spent 2 weeks for testing. Although their eczema

treatment program was wonderful and ended up being a lifesaver for us and

Reagon..I was very disappointed with the immunology aspect of it. He probably

spent a total of 15 min. talking to us in the 2 weeks we were there..didn' t

show up for a " sit down group discussion " for a treatment plan that he was

supposed to be at with us and the other docs and never bothered to follow up

with us on results for some tests he ran! I know these doctors are very

busy..but I have to say, I left very disappointed! BeckiReagon 7 yrs CVID >> > We aren't too far

from National Jewish. We have had a visit with Dr. Gelfand there a little over a

year ago and had a bad experience,

so I've been leary to go back to National Jewish. I will certainly look up Dr.

Leung and see if he's still around. It seems like everytime I read about another

kiddo in the group having trouble their doctors are so much more

aggressive in seeking an answer. It seems like most of the docs we see in the ER

and otherwise are a little overwhelmed by his problems. These replies have all

been very helpful, thanks so much.> > > > > > @...: dietdoc@...:

Thu, 18 Dec 2008 19:58:32 +0000Subject: Re: Help? Any Ideas?> > > > I'm

so sorry that I don't have answers for you. But, if he has pain and a blood

draw, I'd ask that the docs recheck liver panel and pancreas (lipases). Also,

get proper stool samples for the whole shebang (microorganisms and eggs). Are

you near Nat. Jewish? Our immuno once consulted with a dr. Leung (immuno/GI)

years ago. Perhaps others have ideas for trustworthy GIs in your area. I'm not

sure what the protocol is

for checking gallbladder. But you should have a doctor you can defer to for

answers. Keep us posted. Sent on the Now Network� from my Sprint®

BlackBerry Re: Help? Any Ideas? " ...sinus infections,

bronchitis, migraines(butthey have been around for a very long time) and stomach

trouble...CT showed entire coloninflamed, diagnosed with infectious colitis,

stool samples had blood inthem but cultures showed no infection... -mild

inflammation inthe transverse colon and esophagus. Comes down

with bronchitis againthe following week and ends up two weeks from the first

visit to ER-back in the ER with identical problem of infectious colitis

(notreatment, just pain killers). During both of these times with thecolitis he

complains of back pain...Increasenexi um and add sucralfate.. .Vomitingstarts

from 1-4 am lasts most of the day...right side and up between shoulder

blade...cloudy urine, 2+ pro! tein in urine, slightly elevated liver

enzymes,high A/G ratio. Immuno says not related to symptoms. Any ideas? " Theresa,

I don't have answers for you but, if it were my kiddo, I'd want to

check...Colitis: Did they do 3 consecutive stool tests tocheck for c.diff

toxin?Liver/ stones: Did they check LDH (lactate dehydrogenase) for a liver

problem? Did they check for gallstones?Pancreas : Did they check amylase and

lipase? Bilirubin?mo m to CVIDer [Non-text portions of this message have

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