New question?

[Guest guest]

Hi Dawn, we are having the same problem with Conan. His numbers are

the highest they have ever been and since june, he has had a

collapsed lung, due to some weird virus, staph infection, blisters

on his skin again,.... mouth sores I have heard that some children

do not do well if there numbers are over a certain point.. we

average in the 500-600 range... up from 2-400, we are now in 900 and

he seems like he is getting sicker,, although he was in all

winter... only exceptions doctors appnt..now since the weather is

nice, we are out and about, this may be an important factor,, so I

am not going out with him to see what happens before next IVIG which

he gets every 3 weeks..... we have also been on IVIG for about 10

months now..... It is always a struggle to find out what is what

with this illness... what came first , so to speak..... anyway..

just thought I;d share.. Kathleen mom to Conan 2, CVID low

everything, liver problems, Gerd, CVS,constipation, in the process

of waiting for a dx for mito or metabolic stuff...

> Hello all...I hope all your children are doing well. I have a

question

> hoping to get some ideas. 's level igg was 707 the

highest ever

> for the month of June. He gets ivig every four weeks now back

from 3

> weeks in April. Since April he has had two episodes of the croup,

two

> sinus infections and two eye infections and is now again starting

with the

> 103 fever, cough, vomiting and congestion. I took him to the pedi

yes.

> Mon. she was concerned since he seems to have gone down hill the

last two

> months. The doc did move his ivig from 3 to 4 weeks but his

numbers look

> great so far??? The doc did an x-ray of the chest Mon. and it

looked

> fine?? I have called the immuno today but am confused where to

turn. The

> pedi doesn't seem to be responsive to my concerns but did ask if

he has

> any new exposure to different children or if he is in school. He

went to

> camp 1 day this year so far with the same children he went to

school with.

> He has been to sick to go. I am not sure what to do. He has

been on

> ivig just over a year now. thanks Dawn mother to cvid,

acid

> reflux, asthma sensory issues and developmental delay

>

>

>

> ____________________________________________________

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[Guest guest]

Hi folks, Thanks for all the wonderfull information and positive

energy. Beth is just getting over a cold that has been very persestant

in our family. She is doing much better but yesterday something wierd

happened. She developed a runny nose that will all of a sudden out of

the blue just run like water. No big thing in itself exept for the

coloration of the dripping. It's a dark orange to yellow color allmost

like food coloring. It puts me in mind of once when I was on an

antibiotic the same thing occoured with my urine. Beth is only on the

gleevic and no antibiotics at this time. Has anyone else experienced

anything similar while on gleevec. It's definatly not blood and like I

said it allmost reminds you of food coloring. Thanks again for all the

posts on here you have no idea how great it is to have a source of

information and comforte from those who are walking the same road.

Ray

[Guest guest]

You will probably get more post but Beth has a infection,any time it is not

clear,antibiotics will help,probably should see the doc.

[ ] New question?

Hi folks, Thanks for all the wonderfull information and positive

energy. Beth is just getting over a cold that has been very persestant

in our family. She is doing much better but yesterday something wierd

happened. She developed a runny nose that will all of a sudden out of

the blue just run like water. No big thing in itself exept for the

coloration of the dripping. It's a dark orange to yellow color allmost

like food coloring. It puts me in mind of once when I was on an

antibiotic the same thing occoured with my urine. Beth is only on the

gleevic and no antibiotics at this time. Has anyone else experienced

anything similar while on gleevec. It's definatly not blood and like I

said it allmost reminds you of food coloring. Thanks again for all the

posts on here you have no idea how great it is to have a source of

information and comforte from those who are walking the same road.

Ray

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

Beth and I both work in a hospital, She is a respiratory therapist

and I'm a paramedic. This is not the typical yellow,brownish speutum

you see with infections. It's more like someone put food coloring in

her speutum. I have seen this kind of thing before when people are

placed on different meds. I had an experience like this years ago

when I had been exposed to a sick baby and placed on a medication

called refampin. No one warned me and the first time I urinated only

to see it coming out like bright orange coolaide was a bit alarming.

I figured what Beth has is something more like that and just wondered

if anyone else has had this with gleevic but judging by the lack of

responses I'm going to guess not to many if any have had this. Thanks

for your reply.

Ray

>

> You will probably get more post but Beth has a infection,any time

it is not clear,antibiotics will help,probably should see the doc.

>

>

> [ ] New question?

>

> Hi folks, Thanks for all the wonderfull information and positive

> energy. Beth is just getting over a cold that has been very

persestant

> in our family. She is doing much better but yesterday something

wierd

> happened. She developed a runny nose that will all of a sudden out

of

> the blue just run like water. No big thing in itself exept for the

> coloration of the dripping. It's a dark orange to yellow color

allmost

> like food coloring. It puts me in mind of once when I was on an

> antibiotic the same thing occoured with my urine. Beth is only on

the

> gleevic and no antibiotics at this time. Has anyone else

experienced

> anything similar while on gleevec. It's definatly not blood and

like I

> said it allmost reminds you of food coloring. Thanks again for all

the

> posts on here you have no idea how great it is to have a source of

> information and comforte from those who are walking the same road.

> Ray

>

>

>

>

>

>

______________________________________________________________________

______________

> Never miss a thing. Make your home page.

> http://www./r/hs

>

>