Re: in Japan - GI blues.

[Guest guest]

Debi,

Wow!! I am so glad you finally know (documented) what is happening to

. I am very heart sick about the dumping. It sounds like the

pyloroplasty was to aggresive for him. Did the doctors talk about maybe

being able to tighten things back up a bit to slow the transfer of food

from the stomach the intestine? Not like you wan to go back to the

hospital.... I am very glad you are home coming from someone who has

stayed in hospitals for those very long stays.

has always and will continue to have a place in my prayers.

Now, please find some time to get yourself a good massage or two.

Staying in hospitals with your child for any length of time requires at

least one good massage. Please find some time to reflect on everything

you and your family have gone through. It is so hard to take care of

oneself and others around you when you are in constant fight or flight

as I am assuming you have been and will continue to be at least for a

while with . I swear staying in hospitals for an extended period

of time creates that delayed stress syndrome in we parents.

J

> is at last out of hospital after months. the good news is that

> he has gained 300 grams.

>

> Our experience shows just how VERY important a good GI doctor is - in

> some cases in the early stages before growth hormone etc - as or more

> important than the geneticist or endocrinologist. If you don't have a

> good one, then get one.....We had to forfeit 3 years of experience at

> another hospital (since they won't cooperate) and go to the UK and

> back to get an appointment with one of Japan's two GIs but it was

> worth it. Getting doctors (particularly in different hospitals and

> particular in Japan) to cooperate is something I haven't yet found an

> answer to and it is very frustrating............so can well understand

> your feeling Jody. GI doctor knows nothing about RSS and can

> advise on food content but not feeding regimes etc....etc, etc.

>

> We have now two new diagnoses over and above his RSS condition (UPD7

> confirmed).

>

> 1) has serious allergies (nice to know after insisting on

> allergies but being ignored) - but they take nearly 3 months to show

> through. (argh)

> Instead of showing on the skin, we had to do an endoscopy to find his

> intestinal wall and the villi there shrunk. Apparently this happens in

> only around 5% of allergy cases and is severe. Since, we can't tell

> what the offending foods are, the assumption is that he could be

> allergic to all milk protein, soy protein, eggs, gluten, wheat, meat,

> fish etc. So we are on a diet of rice and vegetables - the only

> seasoning allowed is salt. I am on the same diet as I am giving

> breast milk. Have a craving for chocolate. eats a tiny amount by

> mouth but it is a very recent development so I am delighted.

>

> 2) also has dumping syndrome.

> Now we know that ' severe abdominal pain and extraordinary slow

> weight gain was due to allergies (something that we parents had

> insisted on all along), we also know that the nissen fundo and the

> pyroplasty that we did was a mistake. It has instead created the

> problem of dumping. When we put food in, the operation resulted in

> food staying in his stomach for only 10 seconds. It then plonks into

> his intestines undigested, sends his blood sugars rising and then

> plummeting down. I am getting used to bringing him back to our world

> when he loses consciousness - often at night when I am not at most

> attentive. So over and above his inability to cope with protein,

> now can't cope with sugars either and we are having to slow his

> digestion down rather than speeding it up.

>

> Treatment:

> ' main nutrition now comes from a highly hydrolized milk here

> called MA-1 but since paediatric medicine is so far behind here there

> are no formulas that include maltidextrin so I was discharged with a 3

> kilo bag from a local dairy bakery and instructed to add 2g to the

> feed per day! I add breast milk and rice dream rice milk to help

> stabilise his blood sugars (since the extra immunoglobins either help

> protect the intestinal wall or are more complex sugars and take longer

> to digest). is on 24 hour feeding - without which he tends to

> lose consciousness.

>

> Debi

> mother to , aged 3 years 6 months, 9.0 kilos, 85cm, RSS, GH,

> dumping, milk/soy protein allergies?

>

>

>