Re: question re- kids with G.E.R.D. & Motility

[Guest guest]

Hi Chelle,

>

> I don't understand what exactly the problem is with

> your son or what's causing it, but have you tried some

> of the simpler tactics?

>

has been taking losec for nearly 2 years now but for the last 4

weeks double doses. He sleeps on a bed with a 30 degree slope. He can

not take nsaids due to severe family allergies to all of them. He is

allergic to all citrus products so never has them as they are a know

latex cross-reactor. He has had several rounds of aspiration pneumonia

in the past (3 in the last 6 months). He also has tmj problems which

complicate swallowing issues.

[Guest guest]

Hi :

We just saw Dr. Marcon at Sick Kids with h last week. She apparently is

THE authority on reflux in kids. She is trying a couple of things with

h before doing anything invasive. (fundoplication) She doubled the

Losec to 40mg per day (double the usual adult dose) We also do the

Domperidone thing. The problem is that the Verapamil she takes for her

dilated aorta also relaxes the smooth muscle of the esophagus, making the

reflux even worse.

h is having a ph probe test and a barium swallow. (repeats of earlier

tests). I will keep you posted. We have been struggling with this problem

since h was born so hopefully Dr. Marcon will help her. She seems

really wonderful...spent 2 hours with us and will be following us closely.

Like h has had aspiration pneumonia about every month to six

weeks since birth. (heck that puts us over 50 now!) She does have scarred

lungs as a result so I think that the docs are pretty serious about solving

this problem. As soon as I have any treatments that seem to work I will let

you know. A couple of suggestions are to limit higher fat content foods to

before 4pm. (fat is slower to travel through the gut) and limit fluids in

the evening. (she also told us to give Losec in the am and pm to keep the

stomach acid ph more even) We have found that crackers help with the pain.

(h also suffers from abdominal pain) We keep them everywhere for her.

Hope this helps and we'll also send along some prayers cause we're sure they

help too!

Carol

Re: question re- kids with G.E.R.D. & Motility

> Hi Chelle,

>

> >

> > I don't understand what exactly the problem is with

> > your son or what's causing it, but have you tried some

> > of the simpler tactics?

> >

> has been taking losec for nearly 2 years now but for the last 4

> weeks double doses. He sleeps on a bed with a 30 degree slope. He can

> not take nsaids due to severe family allergies to all of them. He is

> allergic to all citrus products so never has them as they are a know

> latex cross-reactor. He has had several rounds of aspiration pneumonia

> in the past (3 in the last 6 months). He also has tmj problems which

> complicate swallowing issues.

>

>

>

>

>

[Guest guest]

,

I hate to admit this, but you totally lost me there.

I'm afraid I can't help you! :/ The best I can do is

off you and your son moral support. Feel free to email

me off-list if you'd like.

I'm really sorry!

Chelle, HEDS,

IL, USA

__________________________________________________

[Guest guest]

Re: question re- kids with G.E.R.D. & Motility

A friend's daughter has severe GERD, but not EDS. She had the pH probe.

The ENT did NOT warn the mother that the daughter could have vomiting from

it! So, poor Suzi was not prepared and the girl vomited ALL THE WAY HOME!

Suzi ended up removing the probe herself since her daughter was so

uncomfortable with it! Suzi even tried calling the ENT and he never did

return her phone calls about the vomiting!

So, beware and ask lots of questions about effects of the probe on the body.

Take plastic bags for vomiting, etc!

Bonnie

[Guest guest]

Hi Carol,

We were at the pain clinic today at HSC. is doing so well with

the tramadol it is amazing.

Unfortunately, is not so lucky. He has been doing the losec 20

mg twice a day. He is taking domperidone 3 times a day. Soda crackers

are his best friends. We have been limiting his fat intake early in the

day too.

He hasn't had any scopes. His last swallow was 18 months ago.

The docs at the pain clinic are not prepared to address the meds until

we have a better picture of the G.I. issues. Dr. Brown has indicated

that he would made the time for Josh if the scope is done at HSC.

To date the GI doc hasn't wanted to do anything more invasive but I

suspect that we won't have a choice this time. I am nervous about the

whole ideas because Josh also has latex and nickel allergies.

Do you think that your GI doc would talk to ours?

I recently met a Mom that lives near us with a 3 year old who was just

diagnosed with EDS. It sounds like she has some feeding/GI issues too.