Update on

[Guest guest]

--Sophie,

What great news!!!!! thanks for sharing, its always so good to read

of the small victories!!!

Hopefully things will stay status quo for the longest time!

hugs Helen and (9,systemic)

- In , " slevindoski " <slevindoski@...>

wrote:

>

> I just wanted to post some good news! After 18 months of abnormal

lab

> results, 's labs this week were 100% normal. Apparently

the

> last round of joint injections in her ankles completely got rid of

the

> inflammation in her body! I am praying this lasts for a long time-

-

> preferably forever! She is on MTX and Humira. I am okay with the

meds

> she is on for now. The last time we started tapering, we got down

to

> 5mg of MTX every other week, and she flared really badly. That

was 18

> months ago and this is the first time she has been normal since.

As

> scary as these drugs are--I do not want to repeat that terrible

flare!

>

> Thanks for all the posts regarding facial scarring. She is still

> developing small pink marks, but we are keeping sunscreen on, and

she

> is off the Naprosyn. Reading some of your descriptions, I am

certain

> it is the scarring caused by Naprosyn. Who would have thought

after 18

> months on a med, it could start doing that???

>

> I am praying all our kids are well!

> Take care.

> Sophie

> 's mom, systemic jra, age 6

>

[Guest guest]

Helen,

I am no expert, but would it have anything to do with the rate that they

put remicaid into Nick. I know that you have talked about how you don't

have to wait as long to have the Remicaid IV'd into Nick. It probably

isn't the deal, but thought I would throw that as an option.

I am glad everyone got some sleep, and Nick kept his food down. My

girls all feel bad for Nick. And Allie says, " oh yea then he is the

hospital, and you know how awful that food is! Why would he want to eat

there! " Out of the mouths of babes.

________________________________

From: [mailto: ] On

Behalf Of hburger64

Sent: Tuesday, October 03, 2006 10:10 AM

Subject: Update On

Hi Everyone.

I did try to post this morning, but it never showed up, so I am

sorry If it shows up after I post again.

I want to start by saying thank you for all the good thoughts and

prayers. Yesterday was an emotionally draining day.

As I had mentioned started to vomit at 3am Sunday morning.

It continued ALL day ( at least 20x's) at suppertime I remembered

the anti-nausea supp. the doc prescribed last time he was vomiting.

So before I went to work I gave him one of those and gave hubby

instuctions to call me if he was to get worse.

I got home from work early at 5.30am ( i had to go in early) and

Nick struggled down the stairs when he heard me come in. He said he

was so weak he couldnt stand up. He curled up on the floor and fell

asleep. I told hubby that I was taking him in and got online to make

the earliest appt ( I love our new online appt making, you can see

exactly whats available each day)

By this time Nick was so weak I was carrying him and although hes a

lightweight, 52 lbs of dead weight gets tough after awhile. I laid

him down on a bench in the doctors office and went to register him.

When I got back to him he was getting up saying he needed to use the

bathroom as he was about to throw up again. He walked into the

restroom, walked to the toliet and before I knew it slumped to his

knees and then kealed completely over. I had no chance to catch him.

Apparently I was pretty calm when I stuck my head out the door and

requested some help as my child has passed out ( Laurie the

receptionist said I was awfully calm, I didnt feel it) before I knew

it there were about 10 people in the bathroom with us, including

both peds.with crash bags and oxygen. Nick was as white as could be,

his legs and arms were ice cold, his eyes were doing some weird

rolling and his heart was racing. They got him to an exam room and

he started to pink up with the O2. At all times there were at least

3 people monitoring him. I cannot tell you how impressed I was with

the quick response of our doctors office.

The ped wanted to send us to the local hopital for further eval and

iv fluids by ambulance, but I told him I would rather go to

Childrens ( all his docs are there, as are his records) and the doc

agreed to let me drive him as long as hubby came with and Nick was

not in any resp. distress. By this time his vitals were all pretty

good.

The ped called ahead and also wrote a letter explaining everything

to the ER doctos he talked to. Nick was taken straight back once we

arrived at Childrens and started on IV fluids. he ended up getting

1000cc of saline and 500cc of dextrose ( his glucose was low). After

they talked to the rheumy on call ( ours was not around) they didnt

think it was remicade but felt he needed stress dosing of prednisone

as we are in the middle of tapering and they felt his adrenal gland

couldnt cope. So he got prednisone in his IV and I have to give him

15mg for the next two days at home.

Nick did perk up some with the IV fluids, but he is so weak and out

of it. I am suprised they didnt keep him over night just to keep an

eye on him. They wouldnt even let him eat a cracker there as they "

did'nt want to jinx it " I figured if he threw it up again, it was

better to be in the hospital then at home where they can see hes not

tolerating anything. We were released around supper time last night.

Nick has slept and slept, it's all he can do, he is just so weak.

Today I am hoping to get fluids in him and some bland solids. Its

been nearly 24 hours since he vomited so thats a good sign. But he

doesnt want to eat and of course hes lost 3lbs again since last

wednesdays weigh in.

He is suppose to follow up with Dr W tomorrow at 10am and his ped

sometime this week.

I am so stressed out with it all, I don't know if I can take much

more of this beloved child of mine suffering. I want my fiesty.

subborn little trouble maker back. This limp, pale, sleeping child

here is not my noodle.

I think I need at day at the spa or something, do you think hubby

will send me )) at least I called in to work and got 10 hours of

sleep last night, thats a treat in itself.

Sorry this is so long, yesterday was a LONG day! and again, thank

you for all your support and prayers. I dont know what I would do

without you all, you are my rock.

Hugs Helen and (9,systemic)

[Guest guest]

,

funny you should mention the flow rate of the remicade, he was

getting it quicker and quicker with Vehe as Vehe was cutting out

some of the starting/slow rates and jumping in higher to start.

I forgot to mention this to Dr W last wednesday, so when we went for

the infusion they went by the standard protocal and he got it slower

than he has in the last 10 months!!!

hey, think it was too slow!! LOL

Your girls are such sweeties, Nick says hi back....

hugs Helen and (9,systemic)

>

> Helen,

>

> I am no expert, but would it have anything to do with the rate

that they

> put remicaid into Nick. I know that you have talked about how you

don't

> have to wait as long to have the Remicaid IV'd into Nick. It

probably

> isn't the deal, but thought I would throw that as an option.

>

> I am glad everyone got some sleep, and Nick kept his food down. My

> girls all feel bad for Nick. And Allie says, " oh yea then he is the

> hospital, and you know how awful that food is! Why would he want

to eat

> there! " Out of the mouths of babes.

>

>

>

>

>

>

> ________________________________

>

> From: [mailto: ] On

> Behalf Of hburger64

> Sent: Tuesday, October 03, 2006 10:10 AM

>

> Subject: Update On

>

>

>

> Hi Everyone.

>

> I did try to post this morning, but it never showed up, so I am

> sorry If it shows up after I post again.

>

> I want to start by saying thank you for all the good thoughts and

> prayers. Yesterday was an emotionally draining day.

>

> As I had mentioned started to vomit at 3am Sunday

morning.

> It continued ALL day ( at least 20x's) at suppertime I remembered

> the anti-nausea supp. the doc prescribed last time he was

vomiting.

> So before I went to work I gave him one of those and gave hubby

> instuctions to call me if he was to get worse.

>

> I got home from work early at 5.30am ( i had to go in early) and

> Nick struggled down the stairs when he heard me come in. He said

he

> was so weak he couldnt stand up. He curled up on the floor and

fell

> asleep. I told hubby that I was taking him in and got online to

make

> the earliest appt ( I love our new online appt making, you can see

> exactly whats available each day)

>

> By this time Nick was so weak I was carrying him and although hes

a

> lightweight, 52 lbs of dead weight gets tough after awhile. I laid

> him down on a bench in the doctors office and went to register

him.

> When I got back to him he was getting up saying he needed to use

the

> bathroom as he was about to throw up again. He walked into the

> restroom, walked to the toliet and before I knew it slumped to his

> knees and then kealed completely over. I had no chance to catch

him.

>

> Apparently I was pretty calm when I stuck my head out the door and

> requested some help as my child has passed out ( Laurie the

> receptionist said I was awfully calm, I didnt feel it) before I

knew

> it there were about 10 people in the bathroom with us, including

> both peds.with crash bags and oxygen. Nick was as white as could

be,

> his legs and arms were ice cold, his eyes were doing some weird

> rolling and his heart was racing. They got him to an exam room and

> he started to pink up with the O2. At all times there were at

least

> 3 people monitoring him. I cannot tell you how impressed I was

with

> the quick response of our doctors office.

>

> The ped wanted to send us to the local hopital for further eval

and

> iv fluids by ambulance, but I told him I would rather go to

> Childrens ( all his docs are there, as are his records) and the

doc

> agreed to let me drive him as long as hubby came with and Nick was

> not in any resp. distress. By this time his vitals were all pretty

> good.

>

> The ped called ahead and also wrote a letter explaining everything

> to the ER doctos he talked to. Nick was taken straight back once

we

> arrived at Childrens and started on IV fluids. he ended up getting

> 1000cc of saline and 500cc of dextrose ( his glucose was low).

After

> they talked to the rheumy on call ( ours was not around) they

didnt

> think it was remicade but felt he needed stress dosing of

prednisone

> as we are in the middle of tapering and they felt his adrenal

gland

> couldnt cope. So he got prednisone in his IV and I have to give

him

> 15mg for the next two days at home.

>

> Nick did perk up some with the IV fluids, but he is so weak and

out

> of it. I am suprised they didnt keep him over night just to keep

an

> eye on him. They wouldnt even let him eat a cracker there as

they "

> did'nt want to jinx it " I figured if he threw it up again, it was

> better to be in the hospital then at home where they can see hes

not

> tolerating anything. We were released around supper time last

night.

>

> Nick has slept and slept, it's all he can do, he is just so weak.

> Today I am hoping to get fluids in him and some bland solids. Its

> been nearly 24 hours since he vomited so thats a good sign. But he

> doesnt want to eat and of course hes lost 3lbs again since last

> wednesdays weigh in.

> He is suppose to follow up with Dr W tomorrow at 10am and his ped

> sometime this week.

>

> I am so stressed out with it all, I don't know if I can take much

> more of this beloved child of mine suffering. I want my fiesty.

> subborn little trouble maker back. This limp, pale, sleeping child

> here is not my noodle.

>

> I think I need at day at the spa or something, do you think hubby

> will send me )) at least I called in to work and got 10 hours of

> sleep last night, thats a treat in itself.

>

> Sorry this is so long, yesterday was a LONG day! and again, thank

> you for all your support and prayers. I dont know what I would do

> without you all, you are my rock.

>

> Hugs Helen and (9,systemic)

>

>

>

>

>

>

>

[Guest guest]

Wow Helen, what a day! I'm sure you are as emotionally exhausted as you are

physically. Glad things are looking up, but poor Nick sure needs a break.

Hannah was quite upset when I told her last night. Let him know she said extra

prayers for him last night! Keep us posted on how he's doing.

Beth (Hannah, 10 in 1 week!, unspec arthritis, asthma; gerd)

hburger64 <hburger64@...> wrote:

Hi Everyone.

I did try to post this morning, but it never showed up, so I am

sorry If it shows up after I post again.

I want to start by saying thank you for all the good thoughts and

prayers. Yesterday was an emotionally draining day.

As I had mentioned started to vomit at 3am Sunday morning.

It continued ALL day ( at least 20x's) at suppertime I remembered

the anti-nausea supp. the doc prescribed last time he was vomiting.

So before I went to work I gave him one of those and gave hubby

instuctions to call me if he was to get worse.

I got home from work early at 5.30am ( i had to go in early) and

Nick struggled down the stairs when he heard me come in. He said he

was so weak he couldnt stand up. He curled up on the floor and fell

asleep. I told hubby that I was taking him in and got online to make

the earliest appt ( I love our new online appt making, you can see

exactly whats available each day)

By this time Nick was so weak I was carrying him and although hes a

lightweight, 52 lbs of dead weight gets tough after awhile. I laid

him down on a bench in the doctors office and went to register him.

When I got back to him he was getting up saying he needed to use the

bathroom as he was about to throw up again. He walked into the

restroom, walked to the toliet and before I knew it slumped to his

knees and then kealed completely over. I had no chance to catch him.

Apparently I was pretty calm when I stuck my head out the door and

requested some help as my child has passed out ( Laurie the

receptionist said I was awfully calm, I didnt feel it) before I knew

it there were about 10 people in the bathroom with us, including

both peds.with crash bags and oxygen. Nick was as white as could be,

his legs and arms were ice cold, his eyes were doing some weird

rolling and his heart was racing. They got him to an exam room and

he started to pink up with the O2. At all times there were at least

3 people monitoring him. I cannot tell you how impressed I was with

the quick response of our doctors office.

The ped wanted to send us to the local hopital for further eval and

iv fluids by ambulance, but I told him I would rather go to

Childrens ( all his docs are there, as are his records) and the doc

agreed to let me drive him as long as hubby came with and Nick was

not in any resp. distress. By this time his vitals were all pretty

good.

The ped called ahead and also wrote a letter explaining everything

to the ER doctos he talked to. Nick was taken straight back once we

arrived at Childrens and started on IV fluids. he ended up getting

1000cc of saline and 500cc of dextrose ( his glucose was low). After

they talked to the rheumy on call ( ours was not around) they didnt

think it was remicade but felt he needed stress dosing of prednisone

as we are in the middle of tapering and they felt his adrenal gland

couldnt cope. So he got prednisone in his IV and I have to give him

15mg for the next two days at home.

Nick did perk up some with the IV fluids, but he is so weak and out

of it. I am suprised they didnt keep him over night just to keep an

eye on him. They wouldnt even let him eat a cracker there as they "

did'nt want to jinx it " I figured if he threw it up again, it was

better to be in the hospital then at home where they can see hes not

tolerating anything. We were released around supper time last night.

Nick has slept and slept, it's all he can do, he is just so weak.

Today I am hoping to get fluids in him and some bland solids. Its

been nearly 24 hours since he vomited so thats a good sign. But he

doesnt want to eat and of course hes lost 3lbs again since last

wednesdays weigh in.

He is suppose to follow up with Dr W tomorrow at 10am and his ped

sometime this week.

I am so stressed out with it all, I don't know if I can take much

more of this beloved child of mine suffering. I want my fiesty.

subborn little trouble maker back. This limp, pale, sleeping child

here is not my noodle.

I think I need at day at the spa or something, do you think hubby

will send me )) at least I called in to work and got 10 hours of

sleep last night, thats a treat in itself.

Sorry this is so long, yesterday was a LONG day! and again, thank

you for all your support and prayers. I dont know what I would do

without you all, you are my rock.

Hugs Helen and (9,systemic)

[Guest guest]

Helen, glad to hear nick is improving. Do they know yet what caused

him to get so sick in the first place? He sure didnt have 3 lbs. to

spare. seems like it comes off him lots easier than getting it back

on. Glad you were able to get some sleep. I have no doubt that you

were in great need of it.

Hope things continue to improve...keep us posted as your able.

Continued prayers for Nicky Noodle.

sonia (drea 11 systemic jra/gerd)--

- In , " hburger64 " <hburger64@...> wrote:

>

> Hi Everyone.

>

> I did try to post this morning, but it never showed up, so I am

> sorry If it shows up after I post again.

>

> I want to start by saying thank you for all the good thoughts and

> prayers. Yesterday was an emotionally draining day.

>

> As I had mentioned started to vomit at 3am Sunday

morning.

> It continued ALL day ( at least 20x's) at suppertime I remembered

> the anti-nausea supp. the doc prescribed last time he was

vomiting.

> So before I went to work I gave him one of those and gave hubby

> instuctions to call me if he was to get worse.

>

> I got home from work early at 5.30am ( i had to go in early) and

> Nick struggled down the stairs when he heard me come in. He said

he

> was so weak he couldnt stand up. He curled up on the floor and

fell

> asleep. I told hubby that I was taking him in and got online to

make

> the earliest appt ( I love our new online appt making, you can see

> exactly whats available each day)

>

> By this time Nick was so weak I was carrying him and although hes

a

> lightweight, 52 lbs of dead weight gets tough after awhile. I laid

> him down on a bench in the doctors office and went to register

him.

> When I got back to him he was getting up saying he needed to use

the

> bathroom as he was about to throw up again. He walked into the

> restroom, walked to the toliet and before I knew it slumped to his

> knees and then kealed completely over. I had no chance to catch

him.

>

> Apparently I was pretty calm when I stuck my head out the door and

> requested some help as my child has passed out ( Laurie the

> receptionist said I was awfully calm, I didnt feel it) before I

knew

> it there were about 10 people in the bathroom with us, including

> both peds.with crash bags and oxygen. Nick was as white as could

be,

> his legs and arms were ice cold, his eyes were doing some weird

> rolling and his heart was racing. They got him to an exam room and

> he started to pink up with the O2. At all times there were at

least

> 3 people monitoring him. I cannot tell you how impressed I was

with

> the quick response of our doctors office.

>

> The ped wanted to send us to the local hopital for further eval

and

> iv fluids by ambulance, but I told him I would rather go to

> Childrens ( all his docs are there, as are his records) and the

doc

> agreed to let me drive him as long as hubby came with and Nick was

> not in any resp. distress. By this time his vitals were all pretty

> good.

>

> The ped called ahead and also wrote a letter explaining everything

> to the ER doctos he talked to. Nick was taken straight back once

we

> arrived at Childrens and started on IV fluids. he ended up getting

> 1000cc of saline and 500cc of dextrose ( his glucose was low).

After

> they talked to the rheumy on call ( ours was not around) they

didnt

> think it was remicade but felt he needed stress dosing of

prednisone

> as we are in the middle of tapering and they felt his adrenal

gland

> couldnt cope. So he got prednisone in his IV and I have to give

him

> 15mg for the next two days at home.

>

> Nick did perk up some with the IV fluids, but he is so weak and

out

> of it. I am suprised they didnt keep him over night just to keep

an

> eye on him. They wouldnt even let him eat a cracker there as

they "

> did'nt want to jinx it " I figured if he threw it up again, it was

> better to be in the hospital then at home where they can see hes

not

> tolerating anything. We were released around supper time last

night.

>

> Nick has slept and slept, it's all he can do, he is just so weak.

> Today I am hoping to get fluids in him and some bland solids. Its

> been nearly 24 hours since he vomited so thats a good sign. But he

> doesnt want to eat and of course hes lost 3lbs again since last

> wednesdays weigh in.

> He is suppose to follow up with Dr W tomorrow at 10am and his ped

> sometime this week.

>

> I am so stressed out with it all, I don't know if I can take much

> more of this beloved child of mine suffering. I want my fiesty.

> subborn little trouble maker back. This limp, pale, sleeping child

> here is not my noodle.

>

> I think I need at day at the spa or something, do you think hubby

> will send me )) at least I called in to work and got 10 hours of

> sleep last night, thats a treat in itself.

>

> Sorry this is so long, yesterday was a LONG day! and again, thank

> you for all your support and prayers. I dont know what I would do

> without you all, you are my rock.

>

> Hugs Helen and (9,systemic)

>

[Guest guest]

C'mon Noodle! You can do it! Sending some special 'fight' from the

land of Oz, to get you going again.

And Helen, you absolutely deserve some " you " time. It's hard to tear

yourself away when your child is so ill, but you know what they say

(as lots of people keep telling me) if you don't look after

yourself, you can't look after the kids. (Letting hubby fend for

himself from time to time is ok too!)

As for the 10 hours of sleep....you have NO idea how envious I am.

;-)

{{{{HUGS}}}}}

& Prayers

Jo

Bayly, 4, extended oligo

>

> Hi Everyone.

>

> I did try to post this morning, but it never showed up, so I am

> sorry If it shows up after I post again.

>

> I want to start by saying thank you for all the good thoughts and

> prayers. Yesterday was an emotionally draining day.

>

I am so stressed out with it all, I don't know if I can take much

> more of this beloved child of mine suffering. I want my fiesty.

> subborn little trouble maker back. This limp, pale, sleeping child

> here is not my noodle.

>

> I think I need at day at the spa or something, do you think hubby

> will send me )) at least I called in to work and got 10 hours of

> sleep last night, thats a treat in itself.

>

> Sorry this is so long, yesterday was a LONG day! and again, thank

> you for all your support and prayers. I dont know what I would do

> without you all, you are my rock.

>

> Hugs Helen and (9,systemic)

[Guest guest]

Glad to hear Nick has improved. How scary for you! Working full-

time and dealing with this is a challenge to say the least! Take

care of yourself.

Sophie

> >

> > Hi Everyone.

> >

> > I did try to post this morning, but it never showed up, so I am

> > sorry If it shows up after I post again.

> >

> > I want to start by saying thank you for all the good thoughts and

> > prayers. Yesterday was an emotionally draining day.

> >

> > As I had mentioned started to vomit at 3am Sunday

> morning.

> > It continued ALL day ( at least 20x's) at suppertime I remembered

> > the anti-nausea supp. the doc prescribed last time he was

> vomiting.

> > So before I went to work I gave him one of those and gave hubby

> > instuctions to call me if he was to get worse.

> >

> > I got home from work early at 5.30am ( i had to go in early) and

> > Nick struggled down the stairs when he heard me come in. He said

> he

> > was so weak he couldnt stand up. He curled up on the floor and

> fell

> > asleep. I told hubby that I was taking him in and got online to

> make

> > the earliest appt ( I love our new online appt making, you can

see

> > exactly whats available each day)

> >

> > By this time Nick was so weak I was carrying him and although

hes

> a

> > lightweight, 52 lbs of dead weight gets tough after awhile. I

laid

> > him down on a bench in the doctors office and went to register

> him.

> > When I got back to him he was getting up saying he needed to use

> the

> > bathroom as he was about to throw up again. He walked into the

> > restroom, walked to the toliet and before I knew it slumped to

his

> > knees and then kealed completely over. I had no chance to catch

> him.

> >

> > Apparently I was pretty calm when I stuck my head out the door

and

> > requested some help as my child has passed out ( Laurie the

> > receptionist said I was awfully calm, I didnt feel it) before I

> knew

> > it there were about 10 people in the bathroom with us, including

> > both peds.with crash bags and oxygen. Nick was as white as could

> be,

> > his legs and arms were ice cold, his eyes were doing some weird

> > rolling and his heart was racing. They got him to an exam room

and

> > he started to pink up with the O2. At all times there were at

> least

> > 3 people monitoring him. I cannot tell you how impressed I was

> with

> > the quick response of our doctors office.

> >

> > The ped wanted to send us to the local hopital for further eval

> and

> > iv fluids by ambulance, but I told him I would rather go to

> > Childrens ( all his docs are there, as are his records) and the

> doc

> > agreed to let me drive him as long as hubby came with and Nick

was

> > not in any resp. distress. By this time his vitals were all

pretty

> > good.

> >

> > The ped called ahead and also wrote a letter explaining

everything

> > to the ER doctos he talked to. Nick was taken straight back once

> we

> > arrived at Childrens and started on IV fluids. he ended up

getting

> > 1000cc of saline and 500cc of dextrose ( his glucose was low).

> After

> > they talked to the rheumy on call ( ours was not around) they

> didnt

> > think it was remicade but felt he needed stress dosing of

> prednisone

> > as we are in the middle of tapering and they felt his adrenal

> gland

> > couldnt cope. So he got prednisone in his IV and I have to give

> him

> > 15mg for the next two days at home.

> >

> > Nick did perk up some with the IV fluids, but he is so weak and

> out

> > of it. I am suprised they didnt keep him over night just to keep

> an

> > eye on him. They wouldnt even let him eat a cracker there as

> they "

> > did'nt want to jinx it " I figured if he threw it up again, it was

> > better to be in the hospital then at home where they can see hes

> not

> > tolerating anything. We were released around supper time last

> night.

> >

> > Nick has slept and slept, it's all he can do, he is just so weak.

> > Today I am hoping to get fluids in him and some bland solids. Its

> > been nearly 24 hours since he vomited so thats a good sign. But

he

> > doesnt want to eat and of course hes lost 3lbs again since last

> > wednesdays weigh in.

> > He is suppose to follow up with Dr W tomorrow at 10am and his ped

> > sometime this week.

> >

> > I am so stressed out with it all, I don't know if I can take much

> > more of this beloved child of mine suffering. I want my fiesty.

> > subborn little trouble maker back. This limp, pale, sleeping

child

> > here is not my noodle.

> >

> > I think I need at day at the spa or something, do you think hubby

> > will send me )) at least I called in to work and got 10 hours

of

> > sleep last night, thats a treat in itself.

> >

> > Sorry this is so long, yesterday was a LONG day! and again, thank

> > you for all your support and prayers. I dont know what I would do

> > without you all, you are my rock.

> >

> > Hugs Helen and (9,systemic)

> >

>

[Guest guest]

Helen - I have no words. Only lots of virtual hugs! Tell Nick as soon as he's

better we are going to take you guys out for CHICKEN FINGERS!!!

Alia and Caroline, age 4, poly and uveitis

Update On

Hi Everyone.

I did try to post this morning, but it never showed up, so I am

sorry If it shows up after I post again.

I want to start by saying thank you for all the good thoughts and

prayers. Yesterday was an emotionally draining day.

As I had mentioned started to vomit at 3am Sunday morning.

It continued ALL day ( at least 20x's) at suppertime I remembered

the anti-nausea supp. the doc prescribed last time he was vomiting.

So before I went to work I gave him one of those and gave hubby

instuctions to call me if he was to get worse.

I got home from work early at 5.30am ( i had to go in early) and

Nick struggled down the stairs when he heard me come in. He said he

was so weak he couldnt stand up. He curled up on the floor and fell

asleep. I told hubby that I was taking him in and got online to make

the earliest appt ( I love our new online appt making, you can see

exactly whats available each day)

By this time Nick was so weak I was carrying him and although hes a

lightweight, 52 lbs of dead weight gets tough after awhile. I laid

him down on a bench in the doctors office and went to register him.

When I got back to him he was getting up saying he needed to use the

bathroom as he was about to throw up again. He walked into the

restroom, walked to the toliet and before I knew it slumped to his

knees and then kealed completely over. I had no chance to catch him.

Apparently I was pretty calm when I stuck my head out the door and

requested some help as my child has passed out ( Laurie the

receptionist said I was awfully calm, I didnt feel it) before I knew

it there were about 10 people in the bathroom with us, including

both peds.with crash bags and oxygen. Nick was as white as could be,

his legs and arms were ice cold, his eyes were doing some weird

rolling and his heart was racing. They got him to an exam room and

he started to pink up with the O2. At all times there were at least

3 people monitoring him. I cannot tell you how impressed I was with

the quick response of our doctors office.

The ped wanted to send us to the local hopital for further eval and

iv fluids by ambulance, but I told him I would rather go to

Childrens ( all his docs are there, as are his records) and the doc

agreed to let me drive him as long as hubby came with and Nick was

not in any resp. distress. By this time his vitals were all pretty

good.

The ped called ahead and also wrote a letter explaining everything

to the ER doctos he talked to. Nick was taken straight back once we

arrived at Childrens and started on IV fluids. he ended up getting

1000cc of saline and 500cc of dextrose ( his glucose was low). After

they talked to the rheumy on call ( ours was not around) they didnt

think it was remicade but felt he needed stress dosing of prednisone

as we are in the middle of tapering and they felt his adrenal gland

couldnt cope. So he got prednisone in his IV and I have to give him

15mg for the next two days at home.

Nick did perk up some with the IV fluids, but he is so weak and out

of it. I am suprised they didnt keep him over night just to keep an

eye on him. They wouldnt even let him eat a cracker there as they "

did'nt want to jinx it " I figured if he threw it up again, it was

better to be in the hospital then at home where they can see hes not

tolerating anything. We were released around supper time last night.

Nick has slept and slept, it's all he can do, he is just so weak.

Today I am hoping to get fluids in him and some bland solids. Its

been nearly 24 hours since he vomited so thats a good sign. But he

doesnt want to eat and of course hes lost 3lbs again since last

wednesdays weigh in.

He is suppose to follow up with Dr W tomorrow at 10am and his ped

sometime this week.

I am so stressed out with it all, I don't know if I can take much

more of this beloved child of mine suffering. I want my fiesty.

subborn little trouble maker back. This limp, pale, sleeping child

here is not my noodle.

I think I need at day at the spa or something, do you think hubby

will send me )) at least I called in to work and got 10 hours of

sleep last night, thats a treat in itself.

Sorry this is so long, yesterday was a LONG day! and again, thank

you for all your support and prayers. I dont know what I would do

without you all, you are my rock.

Hugs Helen and (9,systemic)

________________________________________________________________________

Check out the new AOL. Most comprehensive set of free safety and security

tools, free access to millions of high-quality videos from across the web, free

AOL Mail and more.

[Guest guest]

Tonia,

I am so happy to hear that is doing

well with everything. As a mother of 2, I can appreciate how relieved you must

be that the surgery is over and he’s fine.

It sounds like he’s in good spirits,

especially since he can communicate with the outside world now that he has a

laptop!

Please continue to update us as things

progress.

On a side note, have they mentioned how

long his hospital stay might be? Just wondering, since I will be out at TCC for

a consult with Dr. Rice on Thursday, 11/2.

You did give me your cell number, but I

wasn’t sure if they had an idea yet of how long he’d be there.

Also, I know you have much more important

things to deal with right now, but I would love to hear your thoughts on Dr. Rice

in general, since I will be dealing with him soon myself.

My thoughts and prayers continue to be with

you and !

in NY

From: achalasia [mailto:achalasia ] On Behalf Of toniasdogsandi

Sent: Saturday, October 28, 2006

3:26 PM

achalasia

Subject: Update on

Thank you all for your post !

is now in the peds cardiac unit.He is doing so well with all

of this.He is still having pain from the shoulder but very little.He

has started his lung exercises today and thats kinda ruff with the

coughing and all but hes not complained and is just getting it

done.He doesnt have bowel sounds yet but this is normal they say at

this point early on.All in all hes doing very good ThankGod!!!!!

I am so amazed at how well has done.

I will try to check in more often now that he is a little more

settled.Hubby went out the other day and bought him a laptop (early

christmas + some)lol and I can use it in the room now when he falls

asleep.lol This thing has been wonderful!!Well worth the big bucks

last minute I am telling you.He watched movies waiting to go into

the O R ,keeps hes mind off food, and everything else.You now kids

and there friends and computers,give them those 2 things and they

can conquer anything else.ITS BEEN JUST AS GREAT AS THIS SITE!!!!!!!!

Anyway- I hope all is well with the many others having there

surgeries!!!!Hope to read some post on them soon.

A word to the new members-Please find a specialist that is

reccomended from this site!I wish I would have done this the first

time and we wouldnt be here now.Thanks for all the advice and

persistent to get us up here.

Hugs to you all and Thanks for everything! I have been so blessed to

have you all in our lives now.You all are so great for your kind

words,advice,and concern you have for others.

WE HAVE TO PLAN A BIG ACHALASIA FAMILY GET TOGETHER!SERIOUSLY-LETS

FIND A MEDIUM AND GET SOMETHING PLANNED SOMEWHERE.WHO'S GAME????

XOXOX Tonia

[Guest guest]

Tonia,

Glad to hear he’s doing so well. Sounds like mom is doing

pretty well too. Wish him well for us and best wishes on a speedy recovery.

– Husband of

From:

achalasia [mailto:achalasia ] On Behalf Of toniasdogsandi

Sent: Saturday, October 28, 2006 3:26 PM

achalasia

Subject: Update on

Thank you all for your post !

is now in the peds cardiac unit.He is doing so well with all

of this.He is still having pain from the shoulder but very little.He

has started his lung exercises today and thats kinda ruff with the

coughing and all but hes not complained and is just getting it

done.He doesnt have bowel sounds yet but this is normal they say at

this point early on.All in all hes doing very good ThankGod!!!!!

I am so amazed at how well has done.

I will try to check in more often now that he is a little more

settled.Hubby went out the other day and bought him a laptop (early

christmas + some)lol and I can use it in the room now when he falls

asleep.lol This thing has been wonderful!!Well worth the big bucks

last minute I am telling you.He watched movies waiting to go into

the O R ,keeps hes mind off food, and everything else.You now kids

and there friends and computers,give them those 2 things and they

can conquer anything else.ITS BEEN JUST AS GREAT AS THIS SITE!!!!!!!!

Anyway- I hope all is well with the many others having there

surgeries!!!!Hope to read some post on them soon.

A word to the new members-Please find a specialist that is

reccomended from this site!I wish I would have done this the first

time and we wouldnt be here now.Thanks for all the advice and

persistent to get us up here.

Hugs to you all and Thanks for everything! I have been so blessed to

have you all in our lives now.You all are so great for your kind

words,advice,and concern you have for others.

WE HAVE TO PLAN A BIG ACHALASIA FAMILY GET TOGETHER!SERIOUSLY-LETS

FIND A MEDIUM AND GET SOMETHING PLANNED SOMEWHERE.WHO'S GAME????

XOXOX Tonia

[Guest guest]

Tonia

OH Honey I’m so glad he is doing ok, you give him a big hug

from me!!! I’m sure the video’s and stuff is helping to keep his

mind off of stuff. Me and are game to a meet up!!! I can’t

wait to meet all of you and just hug everyone of you!!! You take care!!

And tell we are all thinking of him and wishing him a fast and speedy

recovery. As far as the tummy sounds, yes that’s normal, everything

kind of slows down from the drugs.

C Warren

Co-Founder

www.achalasia.us

From:

achalasia [mailto:achalasia ] On Behalf Of toniasdogsandi

Sent: Saturday, October 28, 2006 3:26 PM

achalasia

Subject: Update on

Thank you all for your post !

is now in the peds cardiac unit.He is doing so well with all

of this.He is still having pain from the shoulder but very little.He

has started his lung exercises today and thats kinda ruff with the

coughing and all but hes not complained and is just getting it

done.He doesnt have bowel sounds yet but this is normal they say at

this point early on.All in all hes doing very good ThankGod!!!!!

I am so amazed at how well has done.

I will try to check in more often now that he is a little more

settled.Hubby went out the other day and bought him a laptop (early

christmas + some)lol and I can use it in the room now when he falls

asleep.lol This thing has been wonderful!!Well worth the big bucks

last minute I am telling you.He watched movies waiting to go into

the O R ,keeps hes mind off food, and everything else.You now kids

and there friends and computers,give them those 2 things and they

can conquer anything else.ITS BEEN JUST AS GREAT AS THIS SITE!!!!!!!!

Anyway- I hope all is well with the many others having there

surgeries!!!!Hope to read some post on them soon.

A word to the new members-Please find a specialist that is

reccomended from this site!I wish I would have done this the first

time and we wouldnt be here now.Thanks for all the advice and

persistent to get us up here.

Hugs to you all and Thanks for everything! I have been so blessed to

have you all in our lives now.You all are so great for your kind

words,advice,and concern you have for others.

WE HAVE TO PLAN A BIG ACHALASIA FAMILY GET TOGETHER!SERIOUSLY-LETS

FIND A MEDIUM AND GET SOMETHING PLANNED SOMEWHERE.WHO'S GAME????

XOXOX Tonia

[Guest guest]

Thanks

-- In achalasia , " L. Warren "

<LWarren@...> wrote:

>

> Tonia,

>

>

>

> Glad to hear he's doing so well. Sounds like mom is doing pretty

well too.

> Wish him well for us and best wishes on a speedy recovery.

>

>

>

> - Husband of

>

>

>

> From: achalasia [mailto:achalasia ]

On Behalf

> Of toniasdogsandi

> Sent: Saturday, October 28, 2006 3:26 PM

> achalasia

> Subject: Update on

>

>

>

> Thank you all for your post !

>

> is now in the peds cardiac unit.He is doing so well with all

> of this.He is still having pain from the shoulder but very

little.He

> has started his lung exercises today and thats kinda ruff with the

> coughing and all but hes not complained and is just getting it

> done.He doesnt have bowel sounds yet but this is normal they say

at

> this point early on.All in all hes doing very good ThankGod!!!!!

> I am so amazed at how well has done.

>

> I will try to check in more often now that he is a little more

> settled.Hubby went out the other day and bought him a laptop

(early

> christmas + some)lol and I can use it in the room now when he

falls

> asleep.lol This thing has been wonderful!!Well worth the big bucks

> last minute I am telling you.He watched movies waiting to go into

> the O R ,keeps hes mind off food, and everything else.You now kids

> and there friends and computers,give them those 2 things and they

> can conquer anything else.ITS BEEN JUST AS GREAT AS THIS

SITE!!!!!!!!

>

> Anyway- I hope all is well with the many others having there

> surgeries!!!!Hope to read some post on them soon.

>

> A word to the new members-Please find a specialist that is

> reccomended from this site!I wish I would have done this the first

> time and we wouldnt be here now.Thanks for all the advice and

> persistent to get us up here.

>

> Hugs to you all and Thanks for everything! I have been so blessed

to

> have you all in our lives now.You all are so great for your kind

> words,advice,and concern you have for others.

>

> WE HAVE TO PLAN A BIG ACHALASIA FAMILY GET TOGETHER!SERIOUSLY-LETS

> FIND A MEDIUM AND GET SOMETHING PLANNED SOMEWHERE.WHO'S GAME????

>

> XOXOX Tonia

>

[Guest guest]

Thank you for your encouraging words, Priscilla. We're hoping that will once eat as heartily as Evan.

Warm regards,

Update on

Evan was on an NG tube for 5 months --months 2-7 and it was roughgetting him off --took me 2 weeks of doing nothing but drip by dripfeeding and we narrowly avoided a stomach tube. He didn't know howto swallow or anything about feeding. I worked for 3 hours to get afeed down and it was time to start the next --around the clock prettymuch --course I did sleep some. He would not eat any for anyoneelse. They told me the longer they are on the tube the more likelythere's big problems getting off. But it can be done and many onhere have done it. I feel this all contributed to Evan's speechproblems --no speech at 5 years old but tried hard --we went with SRJprogram and are now up to 3 word sentences. As noted Evan came off the tube at 7 months old but we had no realsuccess until his chocolate cake for his first birthday. Thecardiologists told us to make everything chocolate if we had to butget him eating. Grin. It worked. He still loves chocolate--absolute favorite food we use as a motivator for his therapies is .. . 's chocolate frosties. It was still an uphill battleprobably thru most of his 2nd year and after that he ate as heartilyas any of us --he stays skinny because he's so active.Priscilla K>>>>>>>> Update on Postedby: " Müller" mueller-winterhispeed (DOT) ch jettamulli Fri Nov 3, 2006 12:06 pm (PST) Hello all,Are there any other parents with tube fed kids on this list? Howabout tube weaning and re-introducing oral feeding?Kind regards,with Saskia, Nora-Jane / 5yrs & / 23mo / DS / ASDII / severeGERD (on a proton pump inhibitor & zelnorm & ng-tube)Switzerland >>>>>>>> Priscilla Kendrick, married 29 years to Darrel and parents of 9 kids including Evan, 10, born with Down Syndrome and Spina Bifida"My strength is made perfect in weakness." "My grace is sufficient." II Corinthians 12:9 KJV__________________________________________________________Check out the New - Fire up a more powerful email and get things done faster. (http://advision.webevents./mailbeta)

[Guest guest]

,

I can't begin to totally understand exactly what you are going thru; our had cardiac issues and more when very small. Just know that you are being prayed for and well thought of over here in the US. It's so difficult to get thru these early years with a medically involved child

But you are doing such a fantastic job. Our best to you.

Sherry mom to 17 DS/Autism

[Guest guest]

I am so happy to hear your little man is out of the hospital! eeks

I sure wish I had some wisdom to help you all figure this out. Isn't that strange that he can keep things down at night but not during the day? Must be a clue in that, don't you think?

This kind of reminds me of Mickey.. Allyson's son, who used to vomit all the time too. I have not heard from in so longg........last time I had, he was still vomiting off and on at around 6. Nothing as serious as , but it was really bad for some time. I don't think they ever found out why either.

All Ihave ever read about tube weaning is to start slow, stop feeds so the child is hungry. Does he have just the ng tube, or did they insert one? Some of the kids just never eat with the ng in place, and start only with it gone. Wouldn't matter with a G tube though.

Good luck... keeping you in our prayers. It's tough, I know to have a kid so sick and miserable. You guys are doing a great job. Things will resolve somehow! What a mystery this is.

Carol in IL

Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS.

My problem is not how I look. It's how you see me.

Update on

Hello all,

after us spending exactly one month (sic) in hospital, was finally allowed home last Wednesday. (We had to stop TNI for that time and he got a stomach flu and a cold right away.)

The good news is that he's gaining weight again and seems much livelier and healthier again since he's getting enough calories. The bad news ist that he's 100% tube fed now. He can't keep anything down anymore, not even the stuff he gets through his tube, unless we feed him during his sleep. So he gets 500ml of Pediasure over the course of 10 hours during the night and about 200ml of water during the day, mostly during his after-dinner nap. We hope his stomach will tolerate food again soon. We'll be starting to introduce thickened apple juice in about a weeks time and see how he reacts to it. He wants to eat, but as soon as the food reaches his stomach he starts vomiting which has kept the specialists at the childrens hospital baffled since they've never seen anything like it. He also gets a motility drug to speed up his GI tract, but we're not quite sure if it is really doing the job. We started him on half the Nutrivene dose yesterday and

today with a low dose of Ginkgo (conveniently given through his tube while sleeping - at least one advantage).

Are there any other parents with tube fed kids on this list? How about tube weaning and re-introducing oral feeding?

Kind regards,

with Saskia, Nora-Jane / 5yrs & / 23mo / DS / ASDII / severe GERD (on a proton pump inhibitor & zelnorm & ng-tube)

Switzerland

[Guest guest]

Hey ! Laurel was NG tube fed from birth to 6 months; learned to nurse and eat no problem, and I don't associate her speech difficulty with that at all. Important with Nutrivene to use at least a 6.5 Fr diameter tube- smaller ones clog up. Feeding larger amounts at a time is better than 'drip', but maybe that's what stopped the vomiting. new-vis.com is an eccelent feeding website! ~

Everyone is raving about the all-new .

[Guest guest]

Thanks . Actually he has a 7 point somethingorother diameter

tube, so the vits just barely go through. Thats one positive thing

about a tube - no big fuss about the bad taste, you just squirt it in!

doesn't tolerate more than 60ml/hour and only while he's

sleeping. The problem is that you can't thicken pediasure if you're

using a tube, it'll clog up right away. And due to his reflux and low

muscle tone in his torso can't keep down any fluids when he's

sitting up. We hope this will improve in time.

Thanks for the link!

-- In Down Syndrome Treatment , jamie <jamie2hnts@...>

wrote:

>

> Hey ! Laurel was NG tube fed from birth to 6 months;

learned to nurse and eat no problem, and I don't associate her speech

difficulty with that at all. Important with Nutrivene to use at least

a 6.5 Fr diameter tube- smaller ones clog up. Feeding larger amounts

at a time is better than 'drip', but maybe that's what stopped the

vomiting. new-vis.com is an eccelent feeding website! ~

>

> ---------------------------------

> Everyone is raving about the all-new .

>

[Guest guest]

Im glad you are figuring somethign out. They would love to have her at NIH if

she is possible HIDS im sure!!! Look into that too.

vanessa

update on

I just thought I would let you all know what is going on with right

now. I had posted that I would let you know how she is doing on her Singulair. I

believe I last posted when she had some fevers while on it. Well, I just had her

to the ped. rheum. today and she is still doing really well on the medication.

She did have two fevers while on it, but then the doctor increased her dosage

and we have been fine since. She still will get up in the middle of the night

for usually three nights in a row. She is still a little extra irritable and

this time she had one day of joint pain (at least that she let me know about).

She still has a very sensitive belly and things like apple juice will cause her

real stomach upset and then a rash on her bottom. All these occur about 3 weeks

apart like her fever cycles had been. With these symptoms the doctor is really

looking toward HIDS. The genetic testing is another matter - I have to make MORE

phone calls to try to get it paid for. Has anyone else worked with GeneDx? I was

just curious. I really don't want to have to pay up front but that is what I am

told will most likely happen. Our insurance will pay for it but I cannot get

anyone on the phone at the insurance who can just write a letter to GeneDx

saying that they will guarantee payment- VERY frustrating.

So that is where I am at right now. Happy with the lack of fevers but still

wanting answers. I am very happy with our physician and his insights into this

disorder are fascinating.

I wish you all a feverfree holiday season!!

Lori Rodgers

mom to

-10

Jenna - 7

Abby - 5

Sam - 2 (? PFS - possible HIDS)

[Guest guest]

Thanks

I am on the infinite list at NIH. I have been since April! I would love to wait

for answers from them but I don't know if I can go another year with this

horrible wait for answers! Last I heard they won't let any new kids know until

after the new year and then up to 18 months to get scheduled!

Lori

>

> From: " Bisson " <proudmom@...>

> Date: 2006/12/21 Thu AM 02:16:11 EST

> < >

> Subject: Re: update on

>

> Im glad you are figuring somethign out. They would love to have her at NIH if

she is possible HIDS im sure!!! Look into that too.

> vanessa

> update on

>

>

> I just thought I would let you all know what is going on with right

now. I had posted that I would let you know how she is doing on her Singulair. I

believe I last posted when she had some fevers while on it. Well, I just had her

to the ped. rheum. today and she is still doing really well on the medication.

She did have two fevers while on it, but then the doctor increased her dosage

and we have been fine since. She still will get up in the middle of the night

for usually three nights in a row. She is still a little extra irritable and

this time she had one day of joint pain (at least that she let me know about).

She still has a very sensitive belly and things like apple juice will cause her

real stomach upset and then a rash on her bottom. All these occur about 3 weeks

apart like her fever cycles had been. With these symptoms the doctor is really

looking toward HIDS. The genetic testing is another matter - I have to make MORE

phone calls to try to get it paid for. Has anyone else worked with GeneDx? I was

just curious. I really don't want to have to pay up front but that is what I am

told will most likely happen. Our insurance will pay for it but I cannot get

anyone on the phone at the insurance who can just write a letter to GeneDx

saying that they will guarantee payment- VERY frustrating.

> So that is where I am at right now. Happy with the lack of fevers but still

wanting answers. I am very happy with our physician and his insights into this

disorder are fascinating.

> I wish you all a feverfree holiday season!!

> Lori Rodgers

> mom to

> -10

> Jenna - 7

> Abby - 5

> Sam - 2 (? PFS - possible HIDS)

>

>

>

>

>

>

>

[Guest guest]

Lori,

Maybe send an email to check on your status. We applied in March. I sent an

email when Beverly took over the program again to make sure we were still in

the system. We got the call in October and were scheduled for December (so

no long wait there), but they had to reschedule because the doctor wasn't

actually going to be there then, so we will now be going in February (our

choice to coincide with a school break--we could have gone in January). But

I know that scheduling depends on which program and doctor they want you to

see. is going into the part of the study. I don't know if there

might be a longer wait for the HIDS part? Still, it might be worth sending

Beverly an email to check if you haven't already tried that.

-

On 12/21/06, slsjasrodgers@... <slsjasrodgers@...> wrote:

>

> Thanks

> I am on the infinite list at NIH. I have been since April! I would love to

> wait for answers from them but I don't know if I can go another year with

> this horrible wait for answers! Last I heard they won't let any new kids

> know until after the new year and then up to 18 months to get scheduled!

> Lori

>

[Guest guest]

Thanks

I send an email to Beverly about every two months at this point - just to check

I am not sure what they are thinking about Sam. From her emails it sounds like

her file hasn't even gone through review yet.

Oh well - we just keep on waiting!

Thanks for the tips though!

Lori

>

> From: " Klooster " <andreaklooster@...>

> Date: 2006/12/21 Thu AM 11:07:50 EST

>

> Subject: Re: Re: update on

>

> Lori,

>

> Maybe send an email to check on your status. We applied in March. I sent an

> email when Beverly took over the program again to make sure we were still in

> the system. We got the call in October and were scheduled for December (so

> no long wait there), but they had to reschedule because the doctor wasn't

> actually going to be there then, so we will now be going in February (our

> choice to coincide with a school break--we could have gone in January). But

> I know that scheduling depends on which program and doctor they want you to

> see. is going into the part of the study. I don't know if there

> might be a longer wait for the HIDS part? Still, it might be worth sending

> Beverly an email to check if you haven't already tried that.

>

> -

>

> On 12/21/06, slsjasrodgers@... <slsjasrodgers@...> wrote:

> >

> > Thanks

> > I am on the infinite list at NIH. I have been since April! I would love to

> > wait for answers from them but I don't know if I can go another year with

> > this horrible wait for answers! Last I heard they won't let any new kids

> > know until after the new year and then up to 18 months to get scheduled!

> > Lori

> >

>

>

>

[Guest guest]

Lori - we had the testing done through GeneDx as well and as I

recall, they had us fill out a form, requesting the specific tests

and the form had a place to fill in the insurance information and a

place to put in your credit card info. I filled in both (the

insurance and gave them a credit card number) and never ended up

getting charged, so I'm assuming insurance paid for it! Don't know

if the order form has changed (this was about 2 years ago), but

thought this might help.

Good luck & happy holidays!

am

>

> I just thought I would let you all know what is going on with

right now. I had posted that I would let you know how she

is doing on her Singulair. I believe I last posted when she had some

fevers while on it. Well, I just had her to the ped. rheum. today

and she is still doing really well on the medication. She did have

two fevers while on it, but then the doctor increased her dosage and

we have been fine since. She still will get up in the middle of the

night for usually three nights in a row. She is still a little extra

irritable and this time she had one day of joint pain (at least that

she let me know about). She still has a very sensitive belly and

things like apple juice will cause her real stomach upset and then a

rash on her bottom. All these occur about 3 weeks apart like her

fever cycles had been. With these symptoms the doctor is really

looking toward HIDS. The genetic testing is another matter - I have

to make MORE phone calls to try to get it paid for. Has anyone else

worked with GeneDx? I was just curious. I really don't want to have

to pay up front but that is what I am told will most likely happen.

Our insurance will pay for it but I cannot get anyone on the phone

at the insurance who can just write a letter to GeneDx saying that

they will guarantee payment- VERY frustrating.

> So that is where I am at right now. Happy with the lack of fevers

but still wanting answers. I am very happy with our physician and

his insights into this disorder are fascinating.

> I wish you all a feverfree holiday season!!

> Lori Rodgers

> mom to

> -10

> Jenna - 7

> Abby - 5

> Sam - 2 (? PFS - possible HIDS)

>

[Guest guest]

Lori - we had the testing done through GeneDx as well and as I

recall, they had us fill out a form, requesting the specific tests

and the form had a place to fill in the insurance information and a

place to put in your credit card info. I filled in both (the

insurance and gave them a credit card number) and never ended up

getting charged, so I'm assuming insurance paid for it! Don't know

if the order form has changed (this was about 2 years ago), but

thought this might help.

Good luck & happy holidays!

am

>

> I just thought I would let you all know what is going on with

right now. I had posted that I would let you know how she

is doing on her Singulair. I believe I last posted when she had some

fevers while on it. Well, I just had her to the ped. rheum. today

and she is still doing really well on the medication. She did have

two fevers while on it, but then the doctor increased her dosage and

we have been fine since. She still will get up in the middle of the

night for usually three nights in a row. She is still a little extra

irritable and this time she had one day of joint pain (at least that

she let me know about). She still has a very sensitive belly and

things like apple juice will cause her real stomach upset and then a

rash on her bottom. All these occur about 3 weeks apart like her

fever cycles had been. With these symptoms the doctor is really

looking toward HIDS. The genetic testing is another matter - I have

to make MORE phone calls to try to get it paid for. Has anyone else

worked with GeneDx? I was just curious. I really don't want to have

to pay up front but that is what I am told will most likely happen.

Our insurance will pay for it but I cannot get anyone on the phone

at the insurance who can just write a letter to GeneDx saying that

they will guarantee payment- VERY frustrating.

> So that is where I am at right now. Happy with the lack of fevers

but still wanting answers. I am very happy with our physician and

his insights into this disorder are fascinating.

> I wish you all a feverfree holiday season!!

> Lori Rodgers

> mom to

> -10

> Jenna - 7

> Abby - 5

> Sam - 2 (? PFS - possible HIDS)

>

[Guest guest]

Thank you

I have a similar form and I am now working with them directly on this. They are

being helpful. It is amazing how no one feels it is their job to make the phone

call. The company says insurance should call them, insurance says the company

needs to call them. Amazing how hard a phone call is!!

Well thanks for listening and for the advice! I am hoping by the time she is 5

we have some answers

Happy holidays to all

Lori

mom to

- 10

Jenna - 7

Abby - 5

- 2 (?PFS)

>

> From: " maryamjn " <maryamjn@...>

> Date: 2006/12/22 Fri PM 05:58:55 EST

>

> Subject: Re: update on

>

> Lori - we had the testing done through GeneDx as well and as I

> recall, they had us fill out a form, requesting the specific tests

> and the form had a place to fill in the insurance information and a

> place to put in your credit card info. I filled in both (the

> insurance and gave them a credit card number) and never ended up

> getting charged, so I'm assuming insurance paid for it! Don't know

> if the order form has changed (this was about 2 years ago), but

> thought this might help.

>

> Good luck & happy holidays!

> am

>

>

>

>

> >

> > I just thought I would let you all know what is going on with

> right now. I had posted that I would let you know how she

> is doing on her Singulair. I believe I last posted when she had some

> fevers while on it. Well, I just had her to the ped. rheum. today

> and she is still doing really well on the medication. She did have

> two fevers while on it, but then the doctor increased her dosage and

> we have been fine since. She still will get up in the middle of the

> night for usually three nights in a row. She is still a little extra

> irritable and this time she had one day of joint pain (at least that

> she let me know about). She still has a very sensitive belly and

> things like apple juice will cause her real stomach upset and then a

> rash on her bottom. All these occur about 3 weeks apart like her

> fever cycles had been. With these symptoms the doctor is really

> looking toward HIDS. The genetic testing is another matter - I have

> to make MORE phone calls to try to get it paid for. Has anyone else

> worked with GeneDx? I was just curious. I really don't want to have

> to pay up front but that is what I am told will most likely happen.

> Our insurance will pay for it but I cannot get anyone on the phone

> at the insurance who can just write a letter to GeneDx saying that

> they will guarantee payment- VERY frustrating.

> > So that is where I am at right now. Happy with the lack of fevers

> but still wanting answers. I am very happy with our physician and

> his insights into this disorder are fascinating.

> > I wish you all a feverfree holiday season!!

> > Lori Rodgers

> > mom to

> > -10

> > Jenna - 7

> > Abby - 5

> > Sam - 2 (? PFS - possible HIDS)

> >

>

>

>

>

[Guest guest]

Hi Lori,

My son is the one that is being seen by Sam's doctor's partner, Dr.

Bingham and yes, we went through Gene Dx. Actually, I did not have to have any

contact with them at all. Dr. Bingham had her office contact them for me to

make sure the genetic testing would be covered. It took several weeks for them

to approve it, but they did. I still had to give a copy of my credit card to

the doctor's office for them to mail along with a copy of my insurance card

(just in case), but they did not need to use it. Gene Dx sent me a copy of the

$500.00 invoice that was submitted to the insurance, but my card was not

charged.

was tested for HIDS and the invoice shows MVK 8, 10 mutation analysis.

The results were negative.

I must say I finally took Dr. Bingham's advice and started giving ½ tsp. of the

steroid at the start of 's fever and it aborts the fever within an hour

and a half, it is amazing. I was always against using steroids and kept it in

my cabinet (just in case), but I couldn't stand to see him so miserable during

his episodes and to hear him crying " boo, boo, mommy, boo, boo " constantly was

just too heart breaking.

Take care,

Bobbie Rota

Mother of (22 months old)