What is wrong with Liam???

[Guest guest]

Hi

Do any of you ever go through times, where you feel people are

looking at your child and questioning what is wrong with them.

Yesterday I was at swimming lessons for Cameron(my oldest) I was

sitting with a group of mothers Ive just met this yr through Cams

school. Liam(RSS) was running riot with the other kids, when someone

offered him a biscuit which he took, I quickly took it off him

because he is allergic to milk( his allergist just recently told us

to carry an epipen as it is quite severe), Liam then screamed the

place down, wanting his bicuit back. During this one mother

said 'Arent I suppose to encourage him to eat' so I had to explain

the milk thing. Someone said they didnt think he could eat, I got

asked why dont I try feeding him more and leaving the tube feeds out,

and then someone said they didnt think you could have an anaphylactic

reaction to milk(this women was a paediatric nurse).

Now I dont think any of them meant to be rude,I think they were

curious. Liam is so healthy at the moment, he is playing well with

other kids( infact he is quite bossy) he always has a drink of water

with him and looks like he is drinking it, but its usually still full

at the end of the day. He pretends to eat, insists on having

something if we are out with other kids, but it will be the same

potato chip in his hand an hour later.

Our kids are so hard to explain! I want people to understand, but

somedays Im not sure I do myself?

Sorry, I dont know why it got to me, I cant wait till s

finished her RSS/SGA book, im going to carry it everwhere, or maybe

it will teach me the right answers for these people.

Thanks for listening

Jody(mum to Liam 3 next month and Cameron)

[Guest guest]

Reading this made me think of my Liam. He also has food allergies and does

not eat much. First off Don't you just hate When people give your kids food

without asking you first?? Food allergies or not, it's just a pet peeve of

mine, but more so with TWO food allergic kids.... (BTW are you on the POFAK

list?).

I am with you on not knowing what to say to poeple when they make comments.

It is soo fusteruating. Why can't people mind their own bussiness?

I know that did not help much.....

Mom to Liam (3 1/2 years old 35 " 27 lbs

SGA, Hypothyriod, Epilepsy.) Starting GHT 5/19/04

[Guest guest]

Jody - my husband and I were just reminiscing about this last

night. The days when I would have out in public and people

would make side comments like " send her home with me and I will

fatten her up in a week " (like I was failing to feed her). Even

though I knew I was doing the right thing, it was a knife wound to

the heart every time because it made me think that THESE people

truly didn't understand and really thought I wasn't doing something

right. That really hurt then, and hurts even know when I remember.

So, on that note, there isn't anything you can do to change people's

minds except educate them. If it is a quick meeting in a park, you

may have to settle for a smile and leave, if you have more time, you

can begin the dialogue with " he has a growth disorder and for some

reason, these kids need a lot more food and a lot more growth

hormone than normal kids need to grow. " You may not need to even

try and explain that the kids don't have good appetites -- invites a

lot of discussion. Just explain that they need sometimes 150-200%

more calories than a normal child....

And you are right, once we have the Guidebook, we can whip it out!

> Hi

> Do any of you ever go through times, where you feel people are

> looking at your child and questioning what is wrong with them.

> Yesterday I was at swimming lessons for Cameron(my oldest) I was

> sitting with a group of mothers Ive just met this yr through Cams

> school. Liam(RSS) was running riot with the other kids, when

someone

> offered him a biscuit which he took, I quickly took it off him

> because he is allergic to milk( his allergist just recently told

us

> to carry an epipen as it is quite severe), Liam then screamed the

> place down, wanting his bicuit back. During this one mother

> said 'Arent I suppose to encourage him to eat' so I had to explain

> the milk thing. Someone said they didnt think he could eat, I got

> asked why dont I try feeding him more and leaving the tube feeds

out,

> and then someone said they didnt think you could have an

anaphylactic

> reaction to milk(this women was a paediatric nurse).

> Now I dont think any of them meant to be rude,I think they were

> curious. Liam is so healthy at the moment, he is playing well with

> other kids( infact he is quite bossy) he always has a drink of

water

> with him and looks like he is drinking it, but its usually still

full

> at the end of the day. He pretends to eat, insists on having

> something if we are out with other kids, but it will be the same

> potato chip in his hand an hour later.

> Our kids are so hard to explain! I want people to understand, but

> somedays Im not sure I do myself?

> Sorry, I dont know why it got to me, I cant wait till s

> finished her RSS/SGA book, im going to carry it everwhere, or

maybe

> it will teach me the right answers for these people.

> Thanks for listening

> Jody(mum to Liam 3 next month and Cameron)