Re: Any suggestions anyone???

[Guest guest]

I dont know Helen, i would be ready to take him into the peds for labs and

see if they can figure out whats going on with him, has he ever seen a gastro

doc?? To me it doesn't seem med related, but this is along time to not feel

well. Keep us posted (as you do so well, i on the other hand stink at

posting updates).

Luv and hugs,

Aj and Holly (12 yrs old, systemic jra since 9/94)

_www.caringbridge.org/visit/holly_ (http://www.caringbridge.org/visit/holly)

[Guest guest]

You might want to check into serum sickness with the Remicade. One of the

doctors I went to was concerned that the reason I was throwing up was because

the Remicade was making me sick, it turned out that the surgery I had last year

broke, but serum sickness is a real thing, definitely check into that.

Lots of Love

(JAS, 21)

[Guest guest]

,

What surgery broke??? I hadn't thought of serum sickness

either...Talk to you soon

Luv and hugs,

Aj and Holly (12 yrs old, systemic jra since 9/94)

_www.caringbridge.org/visit/holly_ (http://www.caringbridge.org/visit/holly)

[Guest guest]

Hi Helen:

Poor guy! Vomiting scares the you know what out of me, let alone a youngster

doing it so much:( Does his ped know about his vomiting? I concur with the

others, see the ped ASAP.

Please let us know how Mr. Nick is doing and what you find out. Will keep

him and you in my thoughts and prayers that this is over quickly for him.

Take care.

Patty

[Guest guest]

Personally, I would call the ped now. I would bet he is at the least

dehydrated. Even though he may be drinking, he could still be. How often

is he urinating? When was 6, he went through something similar but

I never thought of dehydration as he was drinking and eating, although

not much. We messed around for about one week, and finally was able to

get the office staff at the drs to understand that he needed to see the

ped. She took one look at him and put him in the hospital for fluids. I

am not trying to scare you, but vomiting for almost one month is not

good, especially at his weight. He could be damaging his stomach or

esophagus. This could somehow be med related and the dr should be aware

of this. Any oral meds he is taking, he is probably not getting the full

benefits of due to the vomiting. I would let the ped in on what is going

on and let him/her make the decision as to whether this is something bad

or not. I hope Nick is feeling well soon. JMHO, Michele ( 18,

spondy)

Any suggestions anyone???

I need to get some idea from you guys as to what could possibly be

going on with .

It all started at the begining of December when Nick had a couple of

days where he threw up on the bus ride to school. Nick has a

tendency for motion sickness and was pretty bad as a younger child

but had been doing better as he has gotten older. He sits at the

front of the bus and tries to look out the drivers front window to

try and help. Prior to this Nick has thrown up once in awhile at

home, usually in the mornings. Although he doesnt tell me so i dont

know how often this happens. I talked to his rheumy about this and

she rx zofran for when he felt sick. We were thinking it could have

been the MTX.

December 23rd Nick got sick and threw up a LOT during the day. I

figured it was a bug and would pass. But since then hes throw up

during the night on the 26th and now last night and this morning.

between bouts of vomiting hes acting perfectly fine, hes not had any

fevers now since xmas day.

Im getting concerned with the frequency at which hes throwing up. A

stomach bug doesnt usually last this long and hes basically been

throwing up the whole month. ive tried to limit his diet to the BRAT

diet, but to tell the truth hes not eating much and his weight is

down to 46lbs. Hes not had any changes to his meds recently and is

currently on remicade ( last infusion Nov 28th) prednisone, folic

acid, MTX, prilosec and indomethacin and zofran ( not helping any)

Any ideas????? Im ready to see his ped soon if this doesnt stop. His

rheumy is out on medical leave although i have talked to her a few

times on the phone and we dont see the new temp rheumy until jan 20th

Anything i can do to help in the meantime???

hugs Helen and (8,systemic)

[Guest guest]

...sorry to hear the reflux is back. I hope it will relieve itself soon!

Donna

[Guest guest]

Yeah I was really disapointed to say the least. That whole surgery and for

nothing. My body has been pretty messed up recently.. I currently cannot take a

deep breath without a stabbing pain in my right side..my doctors have

decided its not my lungs because i am not short of breath.. the doctors are

thinking pancreatis now but they arent sure.. I have no clue but I am totally

unable to take a deep breath so i have been shallow breathing for the last

week..

I'm 21 and totally falling apart ..maybe 2006 will be my year.. I hope for

everyone..

Lots of Love

(JAS, 21)

[Guest guest]

My Neisen Fundoplication reversed itself.. so I'm back to having acid reflux and

throwing up in the morning due to having to much acid in my stomach.. not as

much as before I had the surgery but it shouldnt be happening at all and it is..

sadly.. but i guess it only reversed itself a little bit so thats good i

guess...

Re: Any suggestions anyone???

,

What surgery broke??? I hadn't thought of serum sickness

either...Talk to you soon

Luv and hugs,

Aj and Holly (12 yrs old, systemic jra since 9/94)

_www.caringbridge.org/visit/holly_ (http://www.caringbridge.org/visit/holly)

[Guest guest]

,

I hope that its not pancreatitis but my sister that has chrones had

similar symptoms and that is what she had. I hope you get some

answers quickly because I am sure you must be feeling rather lousy!

Thinking of you today and praying you will have a better day

tomorrow!

(Aundrea 10 systemic jra)---

In , bncknwurnumber@a... wrote:

>

> Yeah I was really disapointed to say the least. That whole surgery

and for

> nothing. My body has been pretty messed up recently.. I currently

cannot take a

> deep breath without a stabbing pain in my right side..my doctors

have

> decided its not my lungs because i am not short of breath.. the

doctors are

> thinking pancreatis now but they arent sure.. I have no clue but I

am totally

> unable to take a deep breath so i have been shallow breathing for

the last week..

> I'm 21 and totally falling apart ..maybe 2006 will be my year.. I

hope for

> everyone..

>

> Lots of Love

> (JAS, 21)

>

>

>

[Guest guest]

, positive vibes coming your way for a better year in 2006! hang tight

and hang tough!

Donna

[Guest guest]

Helen in my assessment may have or not, developed some

sensitivity to a med or combination of meds. Along with all the

preservatives in the foods today! Well its only my thought.

Plus factor in the emotional roller coaster these little one's are on!

Hope the doctor comes to some conclusion and is able to help .

hplta

Rusty

happy 6th day of Hannaka to all!

[Guest guest]

,

has bouts with this. She started out young with stomach problems.

Her Dr did a test to measure the acid in her blood. When that came back with

more than a adult should have. This doctor put on Sodium Bicarbate (

Baking Soda) lolol. It worked until she got older. When she got that way again

they changed her meds again. Today she still has bouts with it. So far we know

she is Hyperglycemic. But that still doesn't help much. She tried to make

sure she eats and never lets the stomach get empty. I hope you get to feeling

better. went up the steps night before last. I didn't know she felt

sick.

She crawled up the steps and then fell out on the floor. THEN she hollers for

me to come help her to the bathroom. Last night she was in my bed at 2am

waking me up with her spine hurting along with her legs and she had a real bad

headache plus sick stomach feeling. Crossing my fingers she gets a better nights

sleep tonight. I got up those steps night before last and said ok how

come you went up the steps instead of staying downstairs. Her reply was well

if I got sick I know you would have wanted me in my bathroom lolol. I told her

she should have gotten on my bed downstairs instead of crawling up stairs.

lolol.

Robbin

[Guest guest]

HI Helen,

After reading your post, before you even mentioned the MTX, I was

wondering to myself if Nick was taking that, I read here often, but

it is hard soemtimes to keep up with all the kiddo's meds. Anyways,

my first thought is the MTX. My son Bronson's stomach problems began

gradually and eventually, he was like Nick, throwing up daily, once

in the morning, once or more times at night, and fine in between.

His Rheumatologist also perscribed meds for his stomach, but for him

to take only on the MTX day, well, between the time I received the

perscription, and his next MTX day, he had thrown up so much that I

called his doctor again, and he said Bronson needed to be taken off

the MTX immediately, that it sounded like he was having a type of

reaction to it. So, that is what we did, there was no gradual

weaning off, we just stopped the MTX completely, and about a week

later, the throwing up stopped. Bronson still can't even think about

the shot or apple juice (it's what we first put the injectable MTX

liquid in when he was taking it orally) without feeling like he's

going to throw up, and it's been 2 years since he took MTX.

Obviously, I am not a doctor, and you would need to find out more

from yours, but your story with Nick sounded very familar to me. I

hope he is feeling better soon and you can figure out what exactly

is going on with him.

Jodi, Bronson, 10, systemic

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

>

> I need to get some idea from you guys as to what could possibly be

> going on with .

>

> It all started at the begining of December when Nick had a couple

of

> days where he threw up on the bus ride to school. Nick has a

> tendency for motion sickness and was pretty bad as a younger child

> but had been doing better as he has gotten older. He sits at the

> front of the bus and tries to look out the drivers front window to

> try and help. Prior to this Nick has thrown up once in awhile at

> home, usually in the mornings. Although he doesnt tell me so i

dont

> know how often this happens. I talked to his rheumy about this and

> she rx zofran for when he felt sick. We were thinking it could

have

> been the MTX.

>

> December 23rd Nick got sick and threw up a LOT during the day. I

> figured it was a bug and would pass. But since then hes throw up

> during the night on the 26th and now last night and this morning.

> between bouts of vomiting hes acting perfectly fine, hes not had

any

> fevers now since xmas day.

>

> Im getting concerned with the frequency at which hes throwing up.

A

> stomach bug doesnt usually last this long and hes basically been

> throwing up the whole month. ive tried to limit his diet to the

BRAT

> diet, but to tell the truth hes not eating much and his weight is

> down to 46lbs. Hes not had any changes to his meds recently and is

> currently on remicade ( last infusion Nov 28th) prednisone, folic

> acid, MTX, prilosec and indomethacin and zofran ( not helping any)

>

> Any ideas????? Im ready to see his ped soon if this doesnt stop.

His

> rheumy is out on medical leave although i have talked to her a few

> times on the phone and we dont see the new temp rheumy until jan

20th

>

> Anything i can do to help in the meantime???

>

> hugs Helen and (8,systemic)

>

[Guest guest]

Hi Helen,

This sounds so familiar to my situation. I took MTX for about one year with

no problems, I then began getting sick on a regular basis. It was a

nausiating sickness that you could just tell was sort of a chemical sickness

rather than a bug. This sickness went on for months because I was in a

great deal of pain and not willing to stop the MTX. Finally I did stop the

MTX and within 2 weeks, I was no longer sick. Evidently I had built up a

reaction of some sort to the MTX. I did not take my Folic Acid religiously

and that could have been the issue, but I think I eventually built up an

allergic reaction to it. Even though I have not taken it for years, I get

sick immediately when I take it. If smelling it causes a gag reaction, he

probably has the same thing.

Any suggestions anyone???

I need to get some idea from you guys as to what could possibly be

going on with .

It all started at the begining of December when Nick had a couple of

days where he threw up on the bus ride to school. Nick has a

tendency for motion sickness and was pretty bad as a younger child

but had been doing better as he has gotten older. He sits at the

front of the bus and tries to look out the drivers front window to

try and help. Prior to this Nick has thrown up once in awhile at

home, usually in the mornings. Although he doesnt tell me so i dont

know how often this happens. I talked to his rheumy about this and

she rx zofran for when he felt sick. We were thinking it could have

been the MTX.

December 23rd Nick got sick and threw up a LOT during the day. I

figured it was a bug and would pass. But since then hes throw up

during the night on the 26th and now last night and this morning.

between bouts of vomiting hes acting perfectly fine, hes not had any

fevers now since xmas day.

Im getting concerned with the frequency at which hes throwing up. A

stomach bug doesnt usually last this long and hes basically been

throwing up the whole month. ive tried to limit his diet to the BRAT

diet, but to tell the truth hes not eating much and his weight is

down to 46lbs. Hes not had any changes to his meds recently and is

currently on remicade ( last infusion Nov 28th) prednisone, folic

acid, MTX, prilosec and indomethacin and zofran ( not helping any)

Any ideas????? Im ready to see his ped soon if this doesnt stop. His

rheumy is out on medical leave although i have talked to her a few

times on the phone and we dont see the new temp rheumy until jan 20th

Anything i can do to help in the meantime???

hugs Helen and (8,systemic)

[Guest guest]

Hi lisa,

Don't rule out Rheumatic nodules on your lungs. I had them at age 21 and

they are very painful. I would be breathing just fine and then all the

sudden when I moved in a certain position I had to stop breathing because

the pain was so great. They eventaully went away on their own.

taylor (poly, 35)

Re: Any suggestions anyone???

Yeah I was really disapointed to say the least. That whole surgery and for

nothing. My body has been pretty messed up recently.. I currently cannot

take a

deep breath without a stabbing pain in my right side..my doctors have

decided its not my lungs because i am not short of breath.. the doctors are

thinking pancreatis now but they arent sure.. I have no clue but I am

totally

unable to take a deep breath so i have been shallow breathing for the last

week..

I'm 21 and totally falling apart ..maybe 2006 will be my year.. I hope for

everyone..

Lots of Love

(JAS, 21)

[Guest guest]

Helen,

My sister that has chrones disease also had this reaction to

mtx...She would have frequent bouts of vomiting. She had also

become anemic and her liver enzymes were very elevated. It stopped

after she dc/d mtx.

(Aundrea 10 systemic jra)--

- In , " " <brian.taylor@h...>

wrote:

>

> Hi Helen,

> This sounds so familiar to my situation. I took MTX for about one

year with

> no problems, I then began getting sick on a regular basis. It

was a

> nausiating sickness that you could just tell was sort of a

chemical sickness

> rather than a bug. This sickness went on for months because I was

in a

> great deal of pain and not willing to stop the MTX. Finally I did

stop the

> MTX and within 2 weeks, I was no longer sick. Evidently I had

built up a

> reaction of some sort to the MTX. I did not take my Folic Acid

religiously

> and that could have been the issue, but I think I eventually built

up an

> allergic reaction to it. Even though I have not taken it for

years, I get

> sick immediately when I take it. If smelling it causes a gag

reaction, he

> probably has the same thing.

>

> Any suggestions anyone???

>

>

> I need to get some idea from you guys as to what could possibly be

> going on with .

>

> It all started at the begining of December when Nick had a couple

of

> days where he threw up on the bus ride to school. Nick has a

> tendency for motion sickness and was pretty bad as a younger child

> but had been doing better as he has gotten older. He sits at the

> front of the bus and tries to look out the drivers front window to

> try and help. Prior to this Nick has thrown up once in awhile at

> home, usually in the mornings. Although he doesnt tell me so i dont

> know how often this happens. I talked to his rheumy about this and

> she rx zofran for when he felt sick. We were thinking it could have

> been the MTX.

>

> December 23rd Nick got sick and threw up a LOT during the day. I

> figured it was a bug and would pass. But since then hes throw up

> during the night on the 26th and now last night and this morning.

> between bouts of vomiting hes acting perfectly fine, hes not had

any

> fevers now since xmas day.

>

> Im getting concerned with the frequency at which hes throwing up. A

> stomach bug doesnt usually last this long and hes basically been

> throwing up the whole month. ive tried to limit his diet to the

BRAT

> diet, but to tell the truth hes not eating much and his weight is

> down to 46lbs. Hes not had any changes to his meds recently and is

> currently on remicade ( last infusion Nov 28th) prednisone, folic

> acid, MTX, prilosec and indomethacin and zofran ( not helping any)

>

> Any ideas????? Im ready to see his ped soon if this doesnt stop.

His

> rheumy is out on medical leave although i have talked to her a few

> times on the phone and we dont see the new temp rheumy until jan

20th

>

> Anything i can do to help in the meantime???

>

> hugs Helen and (8,systemic)

>

>

>

>

>

>

>

>

[Guest guest]

-Jodi.

Thanks for the info, I hope its not the MTX, I have changed the day

he gets the shot from sat to friday nights to give him more time

over the weekend to recover. I have also moved some of this other

meds from Am to PM and so far so good. he did fine with last

weekends shot.

I hope it works!

hugs Helen and (8,systemic)

-- In , " momofboyzx2 " <momofboyzx2@y...>

wrote:

>

> HI Helen,

> After reading your post, before you even mentioned the MTX, I was

> wondering to myself if Nick was taking that, I read here often,

but

> it is hard soemtimes to keep up with all the kiddo's meds.

Anyways,

> my first thought is the MTX. My son Bronson's stomach problems

began

> gradually and eventually, he was like Nick, throwing up daily,

once

> in the morning, once or more times at night, and fine in between.

> His Rheumatologist also perscribed meds for his stomach, but for

him

> to take only on the MTX day, well, between the time I received the

> perscription, and his next MTX day, he had thrown up so much that

I

> called his doctor again, and he said Bronson needed to be taken

off

> the MTX immediately, that it sounded like he was having a type of

> reaction to it. So, that is what we did, there was no gradual

> weaning off, we just stopped the MTX completely, and about a week

> later, the throwing up stopped. Bronson still can't even think

about

> the shot or apple juice (it's what we first put the injectable MTX

> liquid in when he was taking it orally) without feeling like he's

> going to throw up, and it's been 2 years since he took MTX.

> Obviously, I am not a doctor, and you would need to find out more

> from yours, but your story with Nick sounded very familar to me. I

> hope he is feeling better soon and you can figure out what exactly

> is going on with him.

> Jodi, Bronson, 10, systemic

>

>

>

>

>

>

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

> >

> > I need to get some idea from you guys as to what could possibly

be

> > going on with .

> >

> > It all started at the begining of December when Nick had a

couple

> of

> > days where he threw up on the bus ride to school. Nick has a

> > tendency for motion sickness and was pretty bad as a younger

child

> > but had been doing better as he has gotten older. He sits at the

> > front of the bus and tries to look out the drivers front window

to

> > try and help. Prior to this Nick has thrown up once in awhile at

> > home, usually in the mornings. Although he doesnt tell me so i

> dont

> > know how often this happens. I talked to his rheumy about this

and

> > she rx zofran for when he felt sick. We were thinking it could

> have

> > been the MTX.

> >

> > December 23rd Nick got sick and threw up a LOT during the day. I

> > figured it was a bug and would pass. But since then hes throw up

> > during the night on the 26th and now last night and this

morning.

> > between bouts of vomiting hes acting perfectly fine, hes not had

> any

> > fevers now since xmas day.

> >

> > Im getting concerned with the frequency at which hes throwing

up.

> A

> > stomach bug doesnt usually last this long and hes basically been

> > throwing up the whole month. ive tried to limit his diet to the

> BRAT

> > diet, but to tell the truth hes not eating much and his weight

is

> > down to 46lbs. Hes not had any changes to his meds recently and

is

> > currently on remicade ( last infusion Nov 28th) prednisone,

folic

> > acid, MTX, prilosec and indomethacin and zofran ( not helping

any)

> >

> > Any ideas????? Im ready to see his ped soon if this doesnt stop.

> His

> > rheumy is out on medical leave although i have talked to her a

few

> > times on the phone and we dont see the new temp rheumy until jan

> 20th

> >

> > Anything i can do to help in the meantime???

> >

> > hugs Helen and (8,systemic)

> >

>