Re: in Japan - GI blues.

[Guest guest]

Hi Debi,

I am so glad to hear that things are finally looking up for you and

. It is great that he is home and that you now know exactly what

you are dealing with.

I know that there is a lot of work ahead of you, but it is all worth

it in the end.

Please keep all of us updated with how you and are doing.

Judith, Steve, (RSS) and (non RSS) 5 year old twins

[Guest guest]

Debi

I am glad to hear that is out of the hospital.

Poor thing. Both he and you are so strong.

B

5 and Kelli 2 3/4

--- Collis/Tanuma wrote:

> 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?

>

>

> [Non-text portions of this message have been

> removed]

>

>

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[Guest guest]

hey debbie,

glad you found out what else you have to do to help james!! good luck!!

jodie c

[Guest guest]

Hi,

Congrats on him leaving the hospital! I felt so badly for you during

the last post. I have a really really stupid question...Emerence

has not needed any stomach surgeries...can the pyloroplasty be

revered??? Would that help the dumping? I so hope continues

to grow!

, mom to , 5 and Emerence 2 Rss/SGA 27 mo 31 " 21 lb.

> 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?

>

>

>