Re: Off Topic -familial juvenile hyperuricemic nephro...

January 25, 2005

My heart goes out to Bubba. Gout is the most painful thing I have ever

dealt with in my life.

I can remember not being able to stand the weight of a sheet on my foot

or the air of a fan.

Poor Bubba!

My advice for what it is worth. Keep an eye out for food triggers you

can keep out of his diet, for me it is nuts but I know others who say other

foods.

After this episode is over and he is back to pain free. He needs to be

aware of an attack coming on and NOT " push through the pain " it only makes it

many times worse when you finally get your weight off it. Take the anti

inflammatories at the first sign of pain and rest. (what a sucky thing to tell

a

16 year old).

Push water the allopurinol has been for me a miracle drug and the water

will help it do its job and maybe help him to not have these episodes at all.

It will take a while for the medication to do its job but have faith.

He is lucky to have an understanding Mom like you.

Hugs from Washington.

January 25, 2005

Thank you !

I saw last night how painful this is for him, it has been rough the

last month with the ankle and knee pain, but the swollen toe was the

worst of all. He was in tears from 2AM until his dad drove an hour to

bring him some Norco for the pain (I know, BAD DAD, but at this point

sharing an RX is beside the point, he just wanted the pain to stop

until we could get him to the DR). He couldn't handle a sheet

touching him and nothing helped at all!

I looked up a list of foods to avoid, and weirdly enough those are

all foods he avoids already! All the foods on the " good " list are

foods he eats often and loves.... so making dietary changes is going

to be tough but hopefully we can find some of the triggers and

eliminate them!

Poor baby, he is so upset! He can't go to school since he is unable

to wear shoes or walk and he is the only one of my three kids who

actually LOVES school! He was so angry when the Dr talked to us....

it took 18 months to get him over Valley Fever and then he got Mono!

Everytime he starts to feel good something hits and he can't just get

a little sick!

He got a shot of Stadol as well as a shot of Toradol and he is

finally asleep. I can only hope that when he wakes up and starts the

allopurinol and colchicine that the pain will be relieved some!

It sucks to see a kid this big (6 foot 2 and 262 pounds) knocked down

by something as off the wall as this!

HUGS!

Cindee

> My heart goes out to Bubba. Gout is the most painful thing I have

ever

> dealt with in my life.

> I can remember not being able to stand the weight of a sheet on

my foot

> or the air of a fan.

> Poor Bubba!

> My advice for what it is worth. Keep an eye out for food

triggers you

> can keep out of his diet, for me it is nuts but I know others who

say other

> foods.

> After this episode is over and he is back to pain free. He

needs to be

> aware of an attack coming on and NOT " push through the pain " it

only makes it

> many times worse when you finally get your weight off it. Take

the anti

> inflammatories at the first sign of pain and rest. (what a sucky

thing to tell a

> 16 year old).

> Push water the allopurinol has been for me a miracle drug and

the water

> will help it do its job and maybe help him to not have these

episodes at all.

> It will take a while for the medication to do its job but have

faith.

> He is lucky to have an understanding Mom like you.

>

> Hugs from Washington.

>

January 25, 2005

I can only hope that when he wakes up and starts the

> allopurinol and colchicine that the pain will be relieved some!

>

> It sucks to see a kid this big (6 foot 2 and 262 pounds) knocked

down

> by something as off the wall as this!

>

> HUGS!

>

> Cindee

Cindee, is he supposed to start the allopurinol right away?

marta

January 25, 2005

I can only hope that when he wakes up and starts the

> allopurinol and colchicine that the pain will be relieved some!

>

> It sucks to see a kid this big (6 foot 2 and 262 pounds) knocked

down

> by something as off the wall as this!

>

> HUGS!

>

> Cindee

Cindee, is he supposed to start the allopurinol right away?

marta

January 25, 2005

He has an RX for it as well as the colchicine that they want him to

start today....but they want him to see a specialist as soon as they

can get hom in to see one. His Dr is treating him the same as he does

his adult patients with gout, but he said he is much more concerned

about the possibility of kidney failure as well as joint pain and

deformity later in life since he is getting this at such a young age.

Bubbas dad had kidney failure at the age of 17 and his grandfather

not only had Gout, he died of Kidney failure.....pretty scary for a

kid!

Bubba looked it up on the internet and the stuff he has found so far

isn't all that good. He is a bit angry and frustrated. But he has

looked up Gout diets...and he found that the foods he does eat are

good and the " bad " foods he hates anyways, so that made him smile! He

is drinking 100% cherry juice right now because he found tons of

recommendations for it online.

I have not been able to find much about the Juvenile form of Gout

online, so I am very anxious to see a specialist and see what the

long-term prognosis is for him. His PCP is a bit worried - he said

Bubba is the very first case of it he has ever seen and that alone

worries me! But I am sure there are specialists here in the Valley

who have dealt with this , at least I hope so!

Cindee

>

> I can only hope that when he wakes up and starts the

> > allopurinol and colchicine that the pain will be relieved some!

> >

> > It sucks to see a kid this big (6 foot 2 and 262 pounds) knocked

> down

> > by something as off the wall as this!

> >

> > HUGS!

> >

> > Cindee

>

> Cindee, is he supposed to start the allopurinol right away?

>

> marta

January 25, 2005