How to handle doctors?-any advice.

[Guest guest]

hello,

it seemed that everyone really had a good time at the convention and it provided

a good relief to chat over things together.

I wanted to ask advice regarding doctors. had been doing well for a while

with his new GI doctor in Japan. He gained 1 kilo and he was food reaction free.

However after 2.5 months he started to go downhill and by 4 months on a new

allergy formula he had a severe reaction trying to wretch, sticking his fingers

in his eyes, stretching his body and feet and moaning and crying to mama to stop

the pain. He couldn't get up and couldn't hold his head up. When I finally

stopped the pump he improved instantly and again when I put a sugar solution

through.

I am having trouble keeping his blood sugar up with sugar solutions alone.

Breast milk is better and rice milk does an even better job but surely that can

only be a short stopgap measure? I would have liked 24 hours or so of stomach

rest in hospital to try and reset his body to start a new food. (This has

happened about 10 times so far in ' life and we have never been successful

at restarting a food once a reaction has occurred - cause still not fully

determined).

After 4 days struggling at home in hot temperatures and typhoon, ' new

doctor finally called me late yeasterday afternoon. I was awaiting instructions

but he just ripped into me saying I was nearly 100% unreliable and so the

information I had provided to date must also be so and so anything we said was

probably near useless. That I should go and find another doctor since it was too

much trouble.

Paediatric GI doctors are very rare here. He is one of 2 and he knows it. I

think he doesn't like parents asking questions. I can't fathom what caused this

huge outburst except that he was possibly having trouble getting a bed slot for

. And maybe he thought we had not followed his strict feeding suggestions

although we have to the letter. This was all in Japanese - who are usually so

polite at least on the surface - so it was a huge shock. I felt like I had been

stabbed and I'm no closer to knowing how to treat short or longer-term. I

am also up around the clock trying to maintain on a minimum stable level.

I can't go back to his original hospital since we left them earlier this year

through lack of experience and placed our chips with this new team. We really

don't have anywhere else to go and I am struggling to stay calm and focused

myself now on day 5. should be starting a new food already but I was told

they would call me when they had a bed maybe sometime towards the end of next

week and in the meantime I would have to decide what to put in ' tube

myself. I just don't feel qualified either on the weight maintenance or blood

sugar dumping side which is relatively new to us. He also slammed the phone down

on my Japanese husband so it can't be to do with regular problems such as

exasperation with foreigners or unwillingness to deal with women.

I am sure the doctor is frustrated that things have not gone to plan but I

really am unsure of how to handle this. Any advice would be much appreciated.

Has anyone else had such a reaction from a medical professional particularly in

an emergency situation? I am exhausted, extremely worried about ,

disappointed that I'm back to square one and now agog and completely at a loss.

Debi

mum to in Japan, age 3 years 8 months, RSS, GHT, weight - 9.4 kilos and

falling fast. height 85 cm.