Melody

[Guest guest]

> Melody,

> My son had difficulty with his stomach not emptying out when ill,

> even with colds. It is not as much a problem now that he is a teen.

> I would be interested in what your GI says about this with

> . I hope he feels better soon.

> Jan

This has always been a source of great frustration for our GI.

was dx with Delayed Gastric Eemptying at 9 mos., meaning his

stomach does not empty las fast it should. It is dx using a nuclear

medicine test called a Gastric Emptying Scan. It is treated by using

Reglan or a similar med to aid the stomach in emptying faster and

also by using Miralax or a similar med to regulate and assist with

constipation issues (which is a very common symptom of DGE). This

worked for him for a while until he contracted a terrible gastric

virus they called gastroparesis, which wreaked havoc on his system.

It forced us in the hospital for 7 days with fevers of 105+,

vomiting, and diarrhea and a release with an NG tube as the only way

we could feed him and keep him hydrated off the IV. 7 days later we

were back as he could hold nothing down by mouth or by tube and he

had a fundo, g button, central line for TPN and pyloroplasty, which

is a procedure to fix the pyloric valve to be open wide to keep food

from emptying slowly. That should have fixed it, but it seems his

system was somehow damaged by that virus to a point where it cannot

function properly if he is not well. Any illness affects his GI

tract and the more severe the illness, the worse the problems he has

are as a result. The only thing we have found that helps restore his

system is to dillute his formula pump feeds with Pedialyte to keep

they system moving and keep him hydrated. Once his system has a

chance to rest some on the dilluted formula, he seems to recover use

of his system and we can go back to full strength feeds. This is why

I am so concerned with the number of illnesses he is having and the

lack of treatment to prevent these illnesses. I am concerned that

one day, his system will just cease to function anymore and permanent

damage will have occurred. I am glad to hear your child has outgrown

these problems. It gives me some hope that maybe things will get

better for my child, too.

Melody, mom to 21 mo old , THI, GERD, RAD, DGE, MSPI, Dumping

Syndrome

[Guest guest]

Thanks for the reply, Ursula. I know the IDF does not necessarily

endorse drs they give out names for...but it is frustrating when you

get a name you think is going to be better than the last bad dr and it

turns out to not necessarily be the case.

The ID, when he asked if was doing infusions, mentioned that

he did them in his own office, so I am assuming he would be

comfortable prescribing it. I don't think our ped would go over the

immuno's head tho, so if we were going to get it from someone, I think

it would have to be the ID.

As far as his gut issues are concerned, he has had issues since

birth...severe reflux and bad DGE. Those alone were able to be

treated with meds once we were referred to a GI and treated

aggressively with meds. Then, when he was 10 mos old, he came down

with a severe viral GI bug and 105 deg fever. We were inpatient for 7

dats and they determined that the infection basically destroyed his

gut. He was dx with Gastroparesis at that point. He could barely

move food though and went home only becuase we were sent with an NG

tube...he refused to eat or drink. Within a week, we were back

inpatient as he could no longer keep anythiung down via the tube

either. The decision was made at that time to perform the Nissen

Fundo and also a pyloroplasty (due to a severe delay in gastric

emptying by then) and to also place a permenent g tube. He was so

dehydrated, they could not get a line with 10 sticks and he had to

have a c-line placed. Once out of surgery, his gut was in such bad

shape, he was forced to rely on TPN for several days to give his gut

total rest. So, to answer your question, yes he had issues from

birth, but the severe GI infection he had did some pretty serious

damage to his GI system, some of which has resolved, and some we are

still battling with the after effects almost 3 yrs later. After that

is when we noticed the string of infections starting up. This is what

finally led to the initial immune testing.

Thanks for the ideas regarding the drs. In looking at the drs we have

now, I would have to say I think the GI would be the most take charge

and I know he has a personal interest invested in him. He is one of

the best. I really liked the ID so far and was impressed with the

fact that, not only did he look at all ' records on the TCH

computer system and familiarize himself with his history before coming

to see him, he also personally called with the lab results to make

sure he could answer any questions we might have. He could have

easily had a nurse call, but the personal attention we received after

only one visit made an impressive impression on me. He was also very

friendly and personable and had a wonderful bedside manner.

Does the gut history he has change whether or not the IVIG will help

him or possibly his gut issues? His gut was not great before that

illness, but it was so much worse afterwards and has just never

returned to " normal " since then. Then this MRSA on top of everything

else has me worried too. I am not sure what to think about his health

anymore and just wish we could find someone who seems trustworthy and

truely cares to oversee his immunology.

Again, thanks to everyone who has replied. If anyone else has

information or advice to share, I would gratefully appreciate it.

Melody, mom to 3.5 yr old (THI, GERD, DGE/Gastroparesis, RAD,

hypotonia, gtube/pump fed) and 12.5 mo old (GERD, DGE, AFO's,

ear tubes, global dev delays, hypotonia, myopia, possible undx neuro

and genetic issues-awaiting testing results)

>

> Melody - I wanted to mention that the IDF giving a name for an

immunologist

> means that the doctor has received their literature in the past. I

believe

> at this time there are only one or two Immunology centers endorsed

by the

> IDF. One I think is Duke and the other might be at UCLA Stanford.

>

> Would the ID be comfortable prescribing the IVIG? What about your

> pediatrician? Both are allowed to order the med if they deem it

necessary.

>

> Which was there first the gut issues or the infections? Could it be

that a

> bad infection in the past tore down his gut? It might be that the

lack of

> IgA in the gut is causing issues. If that's the case the IVIG won't

be able

> to help due to only trace amounts of IgA being in it.

>

> Also to mention your ID or ped can redraw the titers. They don't

> necessarily have to interpret them but if the results show up all

low then

> they can pass them on to the immuno. I mean what is he going to do,

yell at

> them for thoroughness?

>

> Pick one of his specialist to lead the band. Have this doctor call the

> other docs (GI, ID, Immuno) and be 's advocate. Have your

> conversations and plead your case with that one person and be mommy to

> everyone else. If they want to halt something or start something

new then

> have the docs talk amongst themselves. When docs talk they tend to

document

> everything said to cover their fanny and when things hit the fan you

have

> that to turn to. If the situation is as it sounds then I think everyone

> will start coming down on the immuno or rise to the task and take over

> themselves to get IVIG started.

>

> Good luck and keep your chin up. I can remember so so well where

you're at.

>

> Ursula - mom to Macey (10,CVID) and (13)

> http://members.cox.net/maceyh

>

> Immune Deficiency Foundation http://www.primaryimmune.org

> Pediatric PID email list

> Modell Foundation http://jmfworld.org

>

[Guest guest]

Melody,

I'm in agreement that we all think you're great! Don't pay any attention to

what your neighbor said....you know some people just don't get it.

Sherry