Re: How to handle doctors?-any advice.

[Guest guest]

I don't have any advice , but can tell you i been there, and when I recently

asked endo to contact specialist , was basically tld i was in denial and needed

to accept diagnosis. Which left me feeling even guiltier, since i havent

insisted they all test for gluc etc. and he is hypoglycemic and now i think that

may have attributed to him being delayed even further. not many good endo's here

for peds and he knows it , but i don't think they like to be wrong and takes

that frustration out on parents. Sorry i cldn't help but s'one on listserve

will i'm sure.

Sheryl

Collis/Tanuma wrote:

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.

[Guest guest]

Debi,

I've had some very bad reactions from some of the NICU personnel who couldn't

get my son to bottle feed in the hospital (before his RSS diagnosis, which

explained it). They didn't seem to want to face their own limitations in a

very bad way. This may be what you're dealing with. I tend to think it would

be wise to be very cautious about it - people can be mean when their pride is

involved.

You may want to try someone else again. I don't know if you've already tried

these, but on a websearch, I found the link

http://www.tokyowithkids.com/discussions/messages/35/536.html?SundayMay12005

0912pm

which said, 'For allergy detection and treatment the Japan Allergy Center in

Shimbashi, Tokyo (03)3591-5464 and the National Children's Hospital in

Setagaya-ku (03) 3414-8121 are among those listed.'

I'm praying for you and ! I'll also ask my friends to pray. Even if you

have exhausted your options with the doctors, God can give them a change of

heart or something else you may have not considered yet...

Inga

At 12:07 PM 7/28/2005 +0900, you wrote:

>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 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

>

>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.

>

>

>

[Guest guest]

Debi,

Joe and I have had such a reaction from a doctor. Screaming and

yelling in Janelle's hospital room while she was vented. It came down

to her fears of a law suit because she thought we were looking for

something she was doing wrong instead of learning what was going on

with Janelle and since we had a long history with her medical problems

we were trying to help if we could.

It was very hard to take. After the blow-up we ended up having a good

realtionship and she turned into one of the doctors we really trusted.

I do not know if this will happen in your case since the doctor has not

called with a room. I wish we could make this easier for you.

You will have to get some rest. Please call someone to come and help

you so you can sleep if only for two hours. It is when you need to

help your child and you are so exhausted you can not sit up without

seeing stars that you realize you really can not do it all by yourself

just because you are the Mum. Please make sure you have a phone by your

side at all times so if you do get this exhausted you can call someone.

Praying for you and your family.

> Debi,

>

> I've had some very bad reactions from some of the NICU personnel who

> couldn't

> get my son to bottle feed in the hospital (before his RSS diagnosis,

> which

> explained it). They didn't seem to want to face their own limitations

> in a

> very bad way. This may be what you're dealing with. I tend to think

> it would

> be wise to be very cautious about it - people can be mean when their

> pride is

> involved.

>

> You may want to try someone else again. I don't know if you've

> already tried

> these, but on a websearch, I found the link

> http://www.tokyowithkids.com/discussions/messages/35/536.html?

> SundayMay12005

> 0912pm

> which said, 'For allergy detection and treatment the Japan Allergy

> Center in

> Shimbashi, Tokyo (03)3591-5464 and the National Children's Hospital in

> Setagaya-ku (03) 3414-8121 are among those listed.'

>

> I'm praying for you and ! I'll also ask my friends to pray.

> Even if you

> have exhausted your options with the doctors, God can give them a

> change of

> heart or something else you may have not considered yet...

>

> Inga

>

>

> At 12:07 PM 7/28/2005 +0900, you wrote:

>> 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 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

>>

>> 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.

>>

>>

>>

[Guest guest]

Hi Debi

I am so sorry to hear james is so unwell again.

I cant give you any advice on Doctors, I could probably write a book

on them though?!?!

has james ever been on an elemental formula? Liam has been on

neocate since he was about 12 months?? These formulas are suppose to

be completely hypoallergenic and very easily absorbed.

I would love to talk to you about and what is happening,please

email me privately I will give you my phone number or you could

ring . I may not be much help, but sometimes, someone to just listen

is good.

Jody(mum to Liam and cameron in Australia)

> 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.

>

>

>

[Guest guest]

Debi,

Have you tried adding cornstarch to the tube feeds to help stabilize

' blood sugars? (I don't know if he is allergic to corn....) If

you can use it, it will help prevent the ups and downs he gets from

the sugar mixture.

Wish I could help more.

Jodi Z

[Guest guest]

thank you to everyone for advice. It has really helped me to try not to panic.

Now on day 7 at home, I have managed to stabilise ' blood sugar levels with

breast milk and rice milk (complex carbohydrate). Sugar solutions don't work for

at present maybe due to his dumping syndrome. I've tried a regular sugar

solution and then a multidextrin (complex sugar) one in rotation without

success. Cornstarch didn't work for in the past and now he is not allowed

it in case he is also allergic to this.

Inga, thank you for the contacts in Tokyo. Unfortunately, the National

Children's Hospital is the one we had to drop due to lack of experience and

allergy clinics here only deal with exema and asthma not food allergy testing,

but I'm gleaning the list for any other examples. That was very nice of you,

thank you.

has now lost near 10% of his body weight in this week and although his

doctor did call in for a brief, gruff 40 seconds last night he was not prepared

to take questions or see us as an outpatient in the immediate term. He would

give no intermediate feeding instructions and just said that a bed should become

free sometime next week for to go into hospital. ( Although completely

unsatisfactory, I think that was his way of saying he probably overreacted in

telling me I was 100% unreliable and a bad mother!).

I am about to prepare a very short! email to clarify the points he insists we

didn't supply but actually were just not absorbed by a very hierarchical staff

structure and a junior staff who are clearly petrified of their rather draconian

boss. I will be careful to tread carefully as suggested. , I was so

relieved to hear of your experience and I hope he is prepared to listen too. We

can't hang on much longer with such rapid weight loss in this very hot weather.

The doctor wants him to have an endoscopy next week but he has lost all of his

flesh and muscle mass and so I fear he will soon not be up to a general

anaesthetic. Again the doctor insists that as long as he is getting 1200 cc per

day in any type of fluid he will not lose weight. How do you get through to such

people - you would only have to look at the child to see how much weakened and

emaciated he is but he won't see him as an outpatient or watch the video that I

took of his most recent violent food reaction at home. There I was with my

button on the recorder while was screaming for me to do something for his

pain. ....anyway, there I go again, I must control this panic if I'm to get any

response I guess. I've nowhere else to go. If only we lived in a larger market

where, heaven forbid, there were more sick children. Is that not a sad wish or

what?

thank you for listening.

Debi,

mum to in Japan, 3 years 8 months.........argh, 85 cm, GHT.