new to group

[Guest guest]

yup, I would guess thats it Jackie on <redjaxjm@...> wrote: well he may have told ya all that it went away, but if he is drinking, it probably did not go away and will NOT stay away when he is consuming alcohol..he probably just doesnt care anymore DeWitt <trees911 > wrote: Well he didn't have to have any more

treatments . . . . . maybe he has it and is just not gonna do anymore about it., I don't think he goes in much for check upsJackie on <redjaxjm > wrote: it went away? How did that happen and are you sure? Some people have a spontaneous clearance but if he is still drinking, I just dont know how it could be gone! The alcohol is like pouring lighter fluid on a fire.. Yes, attitude IS a lot of it and if you can get your life all set up that you KNOW that you will NOT be on this forever,, and that while its hard, YOU CAN DO IT... and you CAN deal with the side effects as long as you have a good doc... My son had a daughter who was born just after I started tx and I had her almost half of the time and it was hard,, real hard,, because I was so

tired all the time,,, but we managed,, and I think the MOST important thing is that your family understand that while you may not look sick, you ARE SICK and that you are fighting for your life.... DeWitt <trees911 > wrote: I am! I think a lot of it is attitude!!! I did however, have a little sit down talk with my daughter explaining that I am probably going to be very tired ( I am already and haven't started treatment) and I would probably not be able to babysit a lot, or help them move. She is positive, her husband's father had hep c and drank the whole time he was having it, and it went away. But he is on VA disability and all he does is sit around and drink, oh well, I am not a big drinker, so not drinking is nothing to me, just don't tell me I can't have my

water!Jackie on <redjaxjm > wrote: well you may be one of the lucky ones and just sail right through and be able to work the entire time,, I have seen people do it! Lets hope for the best hon! DeWitt <trees911 > wrote: guess I will have to do some calculating!Jackie on <redjaxjm > wrote: yes, you will as your hemoglobin and RBC's get lower, you will be more tired and actually just SICK of treatment,, lol,, I knew others who took time off initially, to get 'used' to treatment and

then at the end, they had no more time left and it was awful.. I worked for the first 12 weeks and it was much easier at first.. at least for me, but everyone is different.. DeWitt <trees911 > wrote: Thanks Jackie, I had no idea I would be tired at the end!Jackie on <redjaxjm > wrote: , since you have a desk job, it should make it easier to be able to work while on tx, I was a 911 paramedic working 24 hour shifts,, it was awful and as I got more and more anemic, I found I was unable to get up as quick to run a call as well as my thinking became muddled and that could have been dangerous in my life of work,, so at week 12, I went on medical

leave. If it was me, I'd either use the summer as the first part of your treatment OR the last part,, cuz both times are hard,, the end because you are usually very anemic and tired.. and the beginning as you are 'getting used to' the treatment... DeWitt <trees911 > wrote: Thanks for sharing! I can see where the ins. is so important. I am sooo hoping not to miss a lot of work. I work as a secretary in a school department, so I will be able to have some rest in the summer, I am thinking I could maybe start April vacation, but may see if I can wait till summer vacation.jcellis63 <chrisellis63myacc (DOT) net> wrote: I went through about 24 weeks of

treatment with the Interferon / ribaviron combo back in 2003 and had to stop because of a laps in insurance coverage. Didnt clear but came darn close. When I discontinued treatment my viral load was 45. Once the hang over effect wore off I felt better than I had in years. I actually out ran my ten year old grand daughter across the parking lot. Of course I was out of breath and had to rest and she was ready to go again but it was something that I couldnt do before treatment because of joint and muscle pain. Even though I didnt clear I was still greatful to have treated. When I get my life stabilized and I'm sure I can dedicate a year or so to healing and treating I'm going to try it again. The meds can be harsh and nothing to take lightly but presently our best hope. The side effects can be managed. I have a family member with cancer and on chemo. She is discribing similar side effects with her meds to those I had.

Hers are worse. The cost seems to be the biggest issue and avoiding a laps in insurance coverage is imperative. I gave my injections to the lateral thigh area and alternating legs each weak. Had some local redness and swelling but kept the site clean and it always resolved itself in time for the next injection. Only twice did I hesitate. Dont know why. It was painless. I'm a Nurse and give injections well but learned a new respect having to give them to myself. Hugs from ME Never miss an email again! Toolbar alerts you the instant new Mail arrives. Check it out. Jackie Hugs from ME Need Mail bonding?Go to the Q & A for great tips from Answers users. Jackie Hugs from ME Don't pick lemons.See all the new 2007 cars at Autos. Jackie Hugs from ME The fish are biting.Get more visitors on your site using Search Marketing. Jackie Hugs from ME 8:00? 8:25? 8:40? Find a flick in no timewith the Search movie showtime shortcut. Jackie Hugs

from ME

Looking for earth-friendly autos? Browse Top Cars by "Green Rating" at Autos' Green Center.

[Guest guest]

Oh I understand completely, but bottom line is you can't help someone who doesn't want it.Rick Kipp <rickkipp@...> wrote: Jackie, I agree with you 100%, because I've been there. I've been through 3 tx's, all without lessening my fairly heavy intake of alcholol. To me it was denial, can't happen to me, and severe "who gives a damn" depression. All through the treatments, these issues were not adequately discussed with anyone, professional or personal friend. However, I DID finally quit in

May, '06 just before a fairly routine surgery that went terrible wrong. Still sufferring from all that mess, but somehow, mortality and the ethics to do the right thing for my family convinced me. I quit drinking and smoking both on the same day. I may die of HCV and not pure alcholism, but at least I can now give the dragon a much more even fight. As a 'Nam vet, I can see the ease that one can slip into this man's morass. He deserves sympathy and understanding, even if he appears to be totally selfish now.>> well he may have told ya all that it went away, but if he is drinking, it probably did not go away and will NOT stay away when he is consuming alcohol..he probably just doesnt care

anymoreHugs from ME

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[Guest guest]

I know Rick,, I was married to an alcohol for 15 years,, been there, done that... I will offer understanding but I will also tell the truth.. Im glad you quit, that is quite the feat. Stopping alcohol is very difficult, I know but YOU DID IT.. and IM sure that your family really loves and appreciates that you did this not only for yourself but for them too.. Are you going to treat again?Rick Kipp <rickkipp@...> wrote: Jackie, I agree with you 100%, because I've been there.

I've been through 3 tx's, all without lessening my fairly heavy intake of alcholol. To me it was denial, can't happen to me, and severe "who gives a damn" depression. All through the treatments, these issues were not adequately discussed with anyone, professional or personal friend. However, I DID finally quit in May, '06 just before a fairly routine surgery that went terrible wrong. Still sufferring from all that mess, but somehow, mortality and the ethics to do the right thing for my family convinced me. I quit drinking and smoking both on the same day. I may die of HCV and not pure alcholism, but at least I can now give the dragon a much more even fight. As a 'Nam vet, I can see the ease that one can slip into this man's morass. He deserves sympathy and understanding, even if he appears to be totally selfish now.>> well he may have told ya all that it went away, but if he is drinking, it probably did not go away and will NOT stay away when he is consuming alcohol..he probably just doesnt care anymoreJackie

[Guest guest]

RE: Jackie's post:

I plan on taking a year off and then consider treating with the hope

that there will be something newer out there with less side effects and

perhaps with better results. My Doc and wife both want me to take some

time off, so I am. I still have many other problems I'm dealing with,

as that surgery really screwed me up. I truly appreciate your support.

I believe I'm on the right track, but if you're not on that track by

60, like me, your sort of out of luck! Drank for nearly 45 years - and

That should be sufficient! Thanks, Jackie

[Guest guest]

Well, you are welcome Rick,, thats a good idea to take some time off, get your health back in shape and remember that this disease moves in decades, not days,months or even years.. IF you take good care of yourself, a year might be just what you need... Im sorry about your surgery nightmare and I hope you will be ok,, let us know how we can help ya hon! jaxRick Kipp <rickkipp@...> wrote: RE: Jackie's post:I plan on taking a year off and then

consider treating with the hope that there will be something newer out there with less side effects and perhaps with better results. My Doc and wife both want me to take some time off, so I am. I still have many other problems I'm dealing with, as that surgery really screwed me up. I truly appreciate your support. I believe I'm on the right track, but if you're not on that track by 60, like me, your sort of out of luck! Drank for nearly 45 years - and That should be sufficient! Thanks, JackieJackie

[Guest guest]

In a message dated 3/14/2007 9:02:16 A.M. Eastern Standard Time,

shaunav@... writes:

Should I keep the appointment or cancel? I'm afraid that if we cancel then

it will start up again.

Shauna

Keep the appointment. It does sound like OCD could be the problem. And

yes, the OCD'r does learn to control the rituals. However, it usually doesn't

happen at home. The control is usually more evident in public places like

school or someone else's home where it might be noticed & questioned.

My dd's OCD came on so fast & furious that I don't really have the

experience with the early on " little by little " progress that some have. Maybe

it's

just early enough that your son does still have more control that most do when

it's really overwhelming. I don't know. I'm sure someone here on the board

will be able to comment on that for you.

It seems like now would be an excellent time to get him into someone who can

start teaching your boy *now* how to control the thoughts & compulsions -

while he can see clearly that he has a choice to perform them or not. There's

a couple good books out for kids - if you don't already have them, run out &

pick them up - one is called " Mr. Worry " and the other is " Up & Down the

Worry Hill " I've heard parents on the board rave about both of them for

younger

kids.

As far as the Pokemon obsession (what kid wasn't obsessed with that craze

when it was popular!!! Both my kids lived, breathed & ate Pokemon - it's all

they ever did for a couple of years) and the tearing up paper & stuffing it in

the pocket at school... unless you find handfuls every single day - along

with piles or boxes or bags hidden elsewhere in his room... I just don't know

that I would worry so much about those things. My son used to play with

ANYTHING during class - he was bored to tears. He could experience an entire

adventure out of a paper clip & a microscopic piece of an old gum wrapper...

HA.

I think that's just boy stuff.

LT (oh, welcome to the group!)

<BR><BR><BR>**************************************<BR> AOL now offers free

email to everyone. Find out more about what's free from AOL at

http://www.aol.com.

[Guest guest]

I actually bought a book a few years ago titled " Quirky Kids " or something.

That was before dd had full blown OCD. She also has ADHD.

Laurie

Shauna Verbus <shaunav@...> wrote:

Hi everyone, my name is Shauna and I just signed up to the group a few days

ago. First let me say that my heart goes out to all of you dealing with this

disorder and others. I have two kids ages 11 and 9 and my 11 year old is the

one that was most recently having issues that caused me to seek out more

information on this disorder. I am also concerned about my daughter

developing this because of a few things she does but I will try to focus on

my son for now. He has always been a little " quirky " and has ADHD which he

is on Adderall XR for. He's on a low dose of 10 mg. When I say he was always

" quirky " some of the things he used to do would be to rip little pieces of

paper up at school and then put them in his pockets. He'd also collect weird

objects like erasers or twisties. He was fascinated with Magnetix and could

play with those for a long time. He was obsessed with Pokemon for the

longest time. He has done well in school academically since going on the

meds in 3rd grade but socially he doesn't make a lot of friends. He does

have a best friend that he has known since he was a baby. He was a neighbor

and even though we've both made some moves within the area they were able to

maintain that relationship and usually get together every other weekend or

so.

So to get to my concern...about a month ago we went to the doctor for my

sons ADHD med check. I told his pediatrician that I was concerned my son may

have OCD because recently he was starting to count his steps (he admitted to

us when confronted about why he was walking funny). He was also picking his

lips and making them bleed a little. The Dr. said the picking could be a

side effect from the Adderall but the counting was definitely not. He said

if it's not affecting his life too much then it sounds like it is minor and

not to worry too much about it right now.

Then about two weeks go by and my son out of no where started with other

habits. Every time he went to a different room he would have to do 4 little

quick steps. He started doing these little weird hand movements where he had

to shake each hand in the air 4 times. Then at the dinner table he had to

tap his fork 4 times on the plate before he would eat.

I called his Dr. back and he said that it did sound like we should have him

evaluated and gave us a few recommendations. I scheduled an appointment for

the end of March. But now here is the kicker....his symptoms have stopped!

We think it may have been related to a few things. First the stress of

school (he just started Middle school this year and also moved this past

summer so new school area and new kids). Also his best friend said he was

going to come over a few weeks ago and spend the night but then at the last

minute couldn't. Then he said the next day he could play but then had a big

report for school he had to work on. Of course my son was very disappointed.

I think he thought that his friend didn't like him anymore. Well...this past

weekend they finally got to play and his friend spent the night. Since then

he has been fine and realizes that his friend still thinks of him as his

best bud LOL. My husband and I commented to him that we've noticed he hasn't

been doing his counting and he said that he was able to control it better

now.

Should I keep the appointment or cancel? I'm afraid that if we cancel then

it will start up again.

Thanks for any input,

Shauna

[Guest guest]

welcome - may as well keep the app't as it is in the family - but did

he have strep recently - maybe PANDAS??? any sickness can make it

flare too

hang in - we're here

eileen

Quoting Shauna Verbus <shaunav@...>:

> Hi everyone, my name is Shauna and I just signed up to the group a few days

> ago. First let me say that my heart goes out to all of you dealing with this

> disorder and others. I have two kids ages 11 and 9 and my 11 year old is the

> one that was most recently having issues that caused me to seek out more

> information on this disorder. I am also concerned about my daughter

> developing this because of a few things she does but I will try to focus on

> my son for now. He has always been a little " quirky " and has ADHD which he

> is on Adderall XR for. He's on a low dose of 10 mg. When I say he was always

> " quirky " some of the things he used to do would be to rip little pieces of

> paper up at school and then put them in his pockets. He'd also collect weird

> objects like erasers or twisties. He was fascinated with Magnetix and could

> play with those for a long time. He was obsessed with Pokemon for the

> longest time. He has done well in school academically since going on the

> meds in 3rd grade but socially he doesn't make a lot of friends. He does

> have a best friend that he has known since he was a baby. He was a neighbor

> and even though we've both made some moves within the area they were able to

> maintain that relationship and usually get together every other weekend or

> so.

>

> So to get to my concern...about a month ago we went to the doctor for my

> sons ADHD med check. I told his pediatrician that I was concerned my son may

> have OCD because recently he was starting to count his steps (he admitted to

> us when confronted about why he was walking funny). He was also picking his

> lips and making them bleed a little. The Dr. said the picking could be a

> side effect from the Adderall but the counting was definitely not. He said

> if it's not affecting his life too much then it sounds like it is minor and

> not to worry too much about it right now.

>

> Then about two weeks go by and my son out of no where started with other

> habits. Every time he went to a different room he would have to do 4 little

> quick steps. He started doing these little weird hand movements where he had

> to shake each hand in the air 4 times. Then at the dinner table he had to

> tap his fork 4 times on the plate before he would eat.

>

> I called his Dr. back and he said that it did sound like we should have him

> evaluated and gave us a few recommendations. I scheduled an appointment for

> the end of March. But now here is the kicker....his symptoms have stopped!

> We think it may have been related to a few things. First the stress of

> school (he just started Middle school this year and also moved this past

> summer so new school area and new kids). Also his best friend said he was

> going to come over a few weeks ago and spend the night but then at the last

> minute couldn't. Then he said the next day he could play but then had a big

> report for school he had to work on. Of course my son was very disappointed.

> I think he thought that his friend didn't like him anymore. Well...this past

> weekend they finally got to play and his friend spent the night. Since then

> he has been fine and realizes that his friend still thinks of him as his

> best bud LOL. My husband and I commented to him that we've noticed he hasn't

> been doing his counting and he said that he was able to control it better

> now.

>

> Should I keep the appointment or cancel? I'm afraid that if we cancel then

> it will start up again.

>

> Thanks for any input,

> Shauna

>

>

>

>

>

[Guest guest]

Sorry it took so long for me to respond but thank you for your insight. We

will keep the appointment as I know this will probably be an ongoing thing.

I think he is still doing some of the rituals but is keeping them to

himself. I'm not sure. As far as the Pokemon thing I guess I wasn't so much

worried about it...just thought it was odd that most kids his age didn't

hold onto it as long as he did.

And I had to LOL at your comment about the paper clip and gum wrapper. That

sounds exactly like my son! Forget all of the expensive toys because he

could just play for hours with things in the junk drawer!

Shauna

_____

From:

[mailto: ] On Behalf Of jtlt@...

Sent: Wednesday, March 14, 2007 10:31 AM

Subject: Re: New to group

In a message dated 3/14/2007 9:02:16 A.M. Eastern Standard Time,

shaunavcomcast (DOT) <mailto:shaunav%40comcast.net> net writes:

Should I keep the appointment or cancel? I'm afraid that if we cancel then

it will start up again.

Shauna

Keep the appointment. It does sound like OCD could be the problem. And

yes, the OCD'r does learn to control the rituals. However, it usually

doesn't

happen at home. The control is usually more evident in public places like

school or someone else's home where it might be noticed & questioned.

My dd's OCD came on so fast & furious that I don't really have the

experience with the early on " little by little " progress that some have.

Maybe it's

just early enough that your son does still have more control that most do

when

it's really overwhelming. I don't know. I'm sure someone here on the board

will be able to comment on that for you.

It seems like now would be an excellent time to get him into someone who can

start teaching your boy *now* how to control the thoughts & compulsions -

while he can see clearly that he has a choice to perform them or not.

There's

a couple good books out for kids - if you don't already have them, run out &

pick them up - one is called " Mr. Worry " and the other is " Up & Down the

Worry Hill " I've heard parents on the board rave about both of them for

younger

kids.

As far as the Pokemon obsession (what kid wasn't obsessed with that craze

when it was popular!!! Both my kids lived, breathed & ate Pokemon - it's all

they ever did for a couple of years) and the tearing up paper & stuffing it

in

the pocket at school... unless you find handfuls every single day - along

with piles or boxes or bags hidden elsewhere in his room... I just don't

know

that I would worry so much about those things. My son used to play with

ANYTHING during class - he was bored to tears. He could experience an entire

adventure out of a paper clip & a microscopic piece of an old gum wrapper...

HA.

I think that's just boy stuff.

LT (oh, welcome to the group!)

<BR><BR><BR>**************************************<BR> AOL now offers free

email to everyone. Find out more about what's free from AOL at

http://www.aol. <http://www.aol.com.> com.

[Guest guest]

Thanks, Eileen. I don't think it was from strep because it does run in both

sides of our family but it's hard to say. He had strep throat in the fall.

He has had a bad cough since the bad symptoms stopped. He gets this dry

tight cough all the time and it will last for weeks and then go away. We

always thought it was allergy or sinus related. His dr. yesterday said it

could be a tic type cough but I think it could be a combination of being

sick and he has to cough so many times. It is driving us bananas LOL. And

the kids in school are starting to tell him to shut up. We aren't going to

give him his Adderall XR tomorrow to see if that has any affect on the

cough.

Shauna

_____

From:

[mailto: ] On Behalf Of

autumn71A@...

Sent: Friday, March 16, 2007 1:45 PM

Subject: Re: New to group

welcome - may as well keep the app't as it is in the family - but did

he have strep recently - maybe PANDAS??? any sickness can make it

flare too

hang in - we're here

eileen

Quoting Shauna Verbus <shaunavcomcast (DOT) <mailto:shaunav%40comcast.net> net>:

> Hi everyone, my name is Shauna and I just signed up to the group a few

days

> ago. First let me say that my heart goes out to all of you dealing with

this

> disorder and others. I have two kids ages 11 and 9 and my 11 year old is

the

> one that was most recently having issues that caused me to seek out more

> information on this disorder. I am also concerned about my daughter

> developing this because of a few things she does but I will try to focus

on

> my son for now. He has always been a little " quirky " and has ADHD which he

> is on Adderall XR for. He's on a low dose of 10 mg. When I say he was

always

> " quirky " some of the things he used to do would be to rip little pieces of

> paper up at school and then put them in his pockets. He'd also collect

weird

> objects like erasers or twisties. He was fascinated with Magnetix and

could

> play with those for a long time. He was obsessed with Pokemon for the

> longest time. He has done well in school academically since going on the

> meds in 3rd grade but socially he doesn't make a lot of friends. He does

> have a best friend that he has known since he was a baby. He was a

neighbor

> and even though we've both made some moves within the area they were able

to

> maintain that relationship and usually get together every other weekend or

> so.

>

> So to get to my concern...about a month ago we went to the doctor for my

> sons ADHD med check. I told his pediatrician that I was concerned my son

may

> have OCD because recently he was starting to count his steps (he admitted

to

> us when confronted about why he was walking funny). He was also picking

his

> lips and making them bleed a little. The Dr. said the picking could be a

> side effect from the Adderall but the counting was definitely not. He said

> if it's not affecting his life too much then it sounds like it is minor

and

> not to worry too much about it right now.

>

> Then about two weeks go by and my son out of no where started with other

> habits. Every time he went to a different room he would have to do 4

little

> quick steps. He started doing these little weird hand movements where he

had

> to shake each hand in the air 4 times. Then at the dinner table he had to

> tap his fork 4 times on the plate before he would eat.

>

> I called his Dr. back and he said that it did sound like we should have

him

> evaluated and gave us a few recommendations. I scheduled an appointment

for

> the end of March. But now here is the kicker....his symptoms have stopped!

> We think it may have been related to a few things. First the stress of

> school (he just started Middle school this year and also moved this past

> summer so new school area and new kids). Also his best friend said he was

> going to come over a few weeks ago and spend the night but then at the

last

> minute couldn't. Then he said the next day he could play but then had a

big

> report for school he had to work on. Of course my son was very

disappointed.

> I think he thought that his friend didn't like him anymore. Well...this

past

> weekend they finally got to play and his friend spent the night. Since

then

> he has been fine and realizes that his friend still thinks of him as his

> best bud LOL. My husband and I commented to him that we've noticed he

hasn't

> been doing his counting and he said that he was able to control it better

> now.

>

> Should I keep the appointment or cancel? I'm afraid that if we cancel then

> it will start up again.

>

> Thanks for any input,

> Shauna

>

>

>

>

>

[Guest guest]

In a message dated 3/20/2007 12:11:50 P.M. Eastern Daylight Time,

writes:

We also just found out that she has Spina Bifida.

I found this comment interesting and wondered if you could elaborate a bit

more on it. Our 18 month old son has a neurogenic bladder and he is going

through another full work up for tethered cord and/or spina bifida (he had a

full brain and spine MRI at 6 months). I am very frustrated. I see that your

daughter is 5 when she was diagnosed. What did they find and how did they

find it?

I also wanted to extend my support to the new members. I am sorry that your

children have been so sick and I empathize with you about needing and

wanting answers. This is a GREAT group and I have learned soooo much from

being

here. I hope it is as helpful to you as it has been to me.

I also wanted to let you know that we use the glycolax and the miralax. We,

personally, haven't found either product to be all that helpful for us. But

we haven't noticed any significant difference in the generic and the name

brand. That's us personally. Just thought I'd throw that in there. LOL

Take Care and God Bless,

(http://www.caringbridge.com/ny/my2angels)

Mommy to

Annette, specific antibody deficiency and Subclass IGG 2 adn 4 deficient.

IVIG x 4 years, Sub Q IG x 18 months and LOVES it.

pervious T and B cell abnormalities and antibody deficiency. IVIG x

18 months. He had a complete recovery of function at the 6 months post IVIG

trial and remains IVIG free. In the process of retesting all of his

immunizations for the 3rd time to see if he held them this time.

Mommy to 3 other beautiful and complicated children as well. LOL

_www.caringbridge.com/ny/my2angels_

(http://www.caringbridge.com/ny/my2angels)

************************************** AOL now offers free email to everyone.

Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

Hi ,

Well, it was an accident that we found out about the Spina Bifida. She has had

back pain ever since we can remember. Car trips with her when she was an infant

were a definate no. When she was about 9 months old she would sleep with her

fists behind her back supporting her spine. Her left leg is also turned in. We

have taken her to doctor after doctor. Even Shriners. They looked at her hips,

her back, and all of that but couldn't find anything that would support her

pain. The Shriner's doctor told me it was in my head and that she was fine. He

finally agreed to do a bone scan. With that it came back " strange " . He did

another xray and it showed something abnormal. So, we had pretty much given up.

Her immunologist had run a kidney test by accident, and it showed that she is

loosing protein big time. He sent us to a kidney specialist. While getting all

the paperwork together for this doctor I came across a VCUG scan that was done

when she was 2. In the report it

said that there was no reflux, but has spina bifida occulta in L5. It was news

to me. Her ped at the time never said anything to us. I called the Shriners

doctor and he said that it could be the " abnormality " that they have been seeing

on her xrays and mris. So I gave the information to her new IM Ped. He is

looking into it. It is very upsetting that I had this report for a year and

never read it. UGggg. Bad mom. I hope that they are able to help your son.

Cheryl

Re: new to group

In a message dated 3/20/2007 12:11:50 P.M. Eastern Daylight Time,

groups (DOT) com writes:

We also just found out that she has Spina Bifida.

I found this comment interesting and wondered if you could elaborate a bit

more on it. Our 18 month old son has a neurogenic bladder and he is going

through another full work up for tethered cord and/or spina bifida (he had a

full brain and spine MRI at 6 months). I am very frustrated. I see that your

daughter is 5 when she was diagnosed. What did they find and how did they

find it?

I also wanted to extend my support to the new members. I am sorry that your

children have been so sick and I empathize with you about needing and

wanting answers. This is a GREAT group and I have learned soooo much from

being

here. I hope it is as helpful to you as it has been to me.

I also wanted to let you know that we use the glycolax and the miralax. We,

personally, haven't found either product to be all that helpful for us. But

we haven't noticed any significant difference in the generic and the name

brand. That's us personally. Just thought I'd throw that in there. LOL

Take Care and God Bless,

(http://www.caringbr idge.com/ ny/my2angels)

Mommy to

Annette, specific antibody deficiency and Subclass IGG 2 adn 4 deficient.

IVIG x 4 years, Sub Q IG x 18 months and LOVES it.

pervious T and B cell abnormalities and antibody deficiency. IVIG x

18 months. He had a complete recovery of function at the 6 months post IVIG

trial and remains IVIG free. In the process of retesting all of his

immunizations for the 3rd time to see if he held them this time.

Mommy to 3 other beautiful and complicated children as well. LOL

_www.caringbridge. com/ny/my2angels _

(http://www.caringbr idge.com/ ny/my2angels)

************ ********* ********* ******** AOL now offers free email to everyone.

Find out more about what's free from AOL at http://www.aol. com.

[Guest guest]

Cheryl, You are not a bad mom!!! There had to be at least 2 medical

professionals that looked at that same report and no one said anything to you.

You are not the Dr. they are the ones who are supposed to help you that is why

you take your daughter to them. I understand you feelings I also feel the bad

mom thing sometimes, but I always tell myself that I would do anything for my

daughter and I know that to be true.

cheryl peterson <petersonclan5@...> wrote: Hi ,

Well, it was an accident that we found out about the Spina Bifida. She has had

back pain ever since we can remember. Car trips with her when she was an infant

were a definate no. When she was about 9 months old she would sleep with her

fists behind her back supporting her spine. Her left leg is also turned in. We

have taken her to doctor after doctor. Even Shriners. They looked at her hips,

her back, and all of that but couldn't find anything that would support her

pain. The Shriner's doctor told me it was in my head and that she was fine. He

finally agreed to do a bone scan. With that it came back " strange " . He did

another xray and it showed something abnormal. So, we had pretty much given up.

Her immunologist had run a kidney test by accident, and it showed that she is

loosing protein big time. He sent us to a kidney specialist. While getting all

the paperwork together for this doctor I came across a VCUG scan that was done

when she was 2. In the report it

said that there was no reflux, but has spina bifida occulta in L5. It was news

to me. Her ped at the time never said anything to us. I called the Shriners

doctor and he said that it could be the " abnormality " that they have been seeing

on her xrays and mris. So I gave the information to her new IM Ped. He is

looking into it. It is very upsetting that I had this report for a year and

never read it. UGggg. Bad mom. I hope that they are able to help your son.

Cheryl

Re: new to group

In a message dated 3/20/2007 12:11:50 P.M. Eastern Daylight Time,

groups (DOT) com writes:

We also just found out that she has Spina Bifida.

I found this comment interesting and wondered if you could elaborate a bit

more on it. Our 18 month old son has a neurogenic bladder and he is going

through another full work up for tethered cord and/or spina bifida (he had a

full brain and spine MRI at 6 months). I am very frustrated. I see that your

daughter is 5 when she was diagnosed. What did they find and how did they

find it?

I also wanted to extend my support to the new members. I am sorry that your

children have been so sick and I empathize with you about needing and

wanting answers. This is a GREAT group and I have learned soooo much from being

here. I hope it is as helpful to you as it has been to me.

I also wanted to let you know that we use the glycolax and the miralax. We,

personally, haven't found either product to be all that helpful for us. But

we haven't noticed any significant difference in the generic and the name

brand. That's us personally. Just thought I'd throw that in there. LOL

Take Care and God Bless,

(http://www.caringbr idge.com/ ny/my2angels)

Mommy to

Annette, specific antibody deficiency and Subclass IGG 2 adn 4 deficient.

IVIG x 4 years, Sub Q IG x 18 months and LOVES it.

pervious T and B cell abnormalities and antibody deficiency. IVIG x

18 months. He had a complete recovery of function at the 6 months post IVIG

trial and remains IVIG free. In the process of retesting all of his

immunizations for the 3rd time to see if he held them this time.

Mommy to 3 other beautiful and complicated children as well. LOL

_www.caringbridge. com/ny/my2angels _

(http://www.caringbr idge.com/ ny/my2angels)

************ ********* ********* ******** AOL now offers free email to everyone.

Find out more about what's free from AOL at http://www.aol. com.

[Guest guest]

Cheryl, You are not a bad mom!!! There had to be at least 2 medical

professionals that looked at that same report and no one said anything to you.

You are not the Dr. they are the ones who are supposed to help you that is why

you take your daughter to them. I understand you feelings I also feel the bad

mom thing sometimes, but I always tell myself that I would do anything for my

daughter and I know that to be true.

cheryl peterson <petersonclan5@...> wrote: Hi ,

Well, it was an accident that we found out about the Spina Bifida. She has had

back pain ever since we can remember. Car trips with her when she was an infant

were a definate no. When she was about 9 months old she would sleep with her

fists behind her back supporting her spine. Her left leg is also turned in. We

have taken her to doctor after doctor. Even Shriners. They looked at her hips,

her back, and all of that but couldn't find anything that would support her

pain. The Shriner's doctor told me it was in my head and that she was fine. He

finally agreed to do a bone scan. With that it came back " strange " . He did

another xray and it showed something abnormal. So, we had pretty much given up.

Her immunologist had run a kidney test by accident, and it showed that she is

loosing protein big time. He sent us to a kidney specialist. While getting all

the paperwork together for this doctor I came across a VCUG scan that was done

when she was 2. In the report it

said that there was no reflux, but has spina bifida occulta in L5. It was news

to me. Her ped at the time never said anything to us. I called the Shriners

doctor and he said that it could be the " abnormality " that they have been seeing

on her xrays and mris. So I gave the information to her new IM Ped. He is

looking into it. It is very upsetting that I had this report for a year and

never read it. UGggg. Bad mom. I hope that they are able to help your son.

Cheryl

Re: new to group

In a message dated 3/20/2007 12:11:50 P.M. Eastern Daylight Time,

groups (DOT) com writes:

We also just found out that she has Spina Bifida.

I found this comment interesting and wondered if you could elaborate a bit

more on it. Our 18 month old son has a neurogenic bladder and he is going

through another full work up for tethered cord and/or spina bifida (he had a

full brain and spine MRI at 6 months). I am very frustrated. I see that your

daughter is 5 when she was diagnosed. What did they find and how did they

find it?

I also wanted to extend my support to the new members. I am sorry that your

children have been so sick and I empathize with you about needing and

wanting answers. This is a GREAT group and I have learned soooo much from being

here. I hope it is as helpful to you as it has been to me.

I also wanted to let you know that we use the glycolax and the miralax. We,

personally, haven't found either product to be all that helpful for us. But

we haven't noticed any significant difference in the generic and the name

brand. That's us personally. Just thought I'd throw that in there. LOL

Take Care and God Bless,

(http://www.caringbr idge.com/ ny/my2angels)

Mommy to

Annette, specific antibody deficiency and Subclass IGG 2 adn 4 deficient.

IVIG x 4 years, Sub Q IG x 18 months and LOVES it.

pervious T and B cell abnormalities and antibody deficiency. IVIG x

18 months. He had a complete recovery of function at the 6 months post IVIG

trial and remains IVIG free. In the process of retesting all of his

immunizations for the 3rd time to see if he held them this time.

Mommy to 3 other beautiful and complicated children as well. LOL

_www.caringbridge. com/ny/my2angels _

(http://www.caringbr idge.com/ ny/my2angels)

************ ********* ********* ******** AOL now offers free email to everyone.

Find out more about what's free from AOL at http://www.aol. com.

[Guest guest]

I can relate with the feeling of frustation with the Docs not

relaying info. My son at 3 years had a run of all the IgG,M,E,A...

His IgA in the labs range was " low " and the others were normal. The

concern at that time (and the only one that was talked about) was

that his C3 and C4 were very low. The Doc had Byran go on

antibiotics for a sinus infection he was in the middle of and then

have us test him again for the C3/C4. After 2 weeks on the ABX the

numbers came up and the Doc called me to say that everything

was " fine " ...no need to worry. My irritation is that he NEVER told

me about the low IgA meaning anything to 's health. He never

sat me down for a consult about PID or even further looked into the

low reading. FOUR years later, my child was continually ill that

another Doc said " let's run some Immuno tests " ...The new Doctor calls

me up and says- " you know he is selective IgA deficient-right " What

is that, I respond?! His lab report came back as ZERO. I then

thought back about the first Doc and just became irrate. How could

he not have talked with me about this??? was so ill all the

time and I would call the pediatrician and say how sick he was and

the response was always to let the cold move along and call back in 2

weeks if he didn't improve...well, of course by then he was

terrible! AND because I didn't know it had anything to do with his

PID I never took him back to the Allergy/immuno--I took him to the

pediatrician that didn't know about 's PID---because I was not

told!

So, I can understand your own personal frustration about how you

didn't pick up on your childs report--it happened to me too and I

feel so resposible for all those years of my little boy being so

sick...and here it was found at the age of three and he battled along

until 7. Hopefully, the knowledge now can help with the treatment

plan for your child. I know my boy is doing much better with the

medical treatment he is on knowing what we are dealing with.

Best of luck to you and your little one,

Beth

Hi ,

> Well, it was an accident that we found out about the Spina Bifida.

She has had back pain ever since we can remember. Car trips with her

when she was an infant were a definate no. When she was about 9

months old she would sleep with her fists behind her back supporting

her spine. Her left leg is also turned in. We have taken her to

doctor after doctor. Even Shriners. They looked at her hips, her

back, and all of that but couldn't find anything that would support

her pain. The Shriner's doctor told me it was in my head and that she

was fine. He finally agreed to do a bone scan. With that it came

back " strange " . He did another xray and it showed something abnormal.

So, we had pretty much given up. Her immunologist had run a kidney

test by accident, and it showed that she is loosing protein big time.

He sent us to a kidney specialist. While getting all the paperwork

together for this doctor I came across a VCUG scan that was done when

she was 2. In the report it

> said that there was no reflux, but has spina bifida occulta in L5.

It was news to me. Her ped at the time never said anything to us. I

called the Shriners doctor and he said that it could be

the " abnormality " that they have been seeing on her xrays and mris.

So I gave the information to her new IM Ped. He is looking into it.

It is very upsetting that I had this report for a year and never read

it. UGggg. Bad mom. I hope that they are able to help your son.

>

> Cheryl

>

> Re: new to group

>

> In a message dated 3/20/2007 12:11:50 P.M. Eastern Daylight Time,

>

> groups (DOT) com writes:

>

> We also just found out that she has Spina Bifida.

>

> I found this comment interesting and wondered if you could

elaborate a bit

>

> more on it. Our 18 month old son has a neurogenic bladder and he is

going

>

> through another full work up for tethered cord and/or spina bifida

(he had a

>

> full brain and spine MRI at 6 months). I am very frustrated. I see

that your

>

> daughter is 5 when she was diagnosed. What did they find and how

did they

>

> find it?

>

> I also wanted to extend my support to the new members. I am sorry

that your

>

> children have been so sick and I empathize with you about needing

and

>

> wanting answers. This is a GREAT group and I have learned soooo

much from being

>

> here. I hope it is as helpful to you as it has been to me.

>

> I also wanted to let you know that we use the glycolax and the

miralax. We,

>

> personally, haven't found either product to be all that helpful for

us. But

>

> we haven't noticed any significant difference in the generic and

the name

>

> brand. That's us personally. Just thought I'd throw that in there.

LOL

>

> Take Care and God Bless,

>

>

>

> (http://www.caringbr idge.com/ ny/my2angels)

>

> Mommy to

>

> Annette, specific antibody deficiency and Subclass IGG 2 adn 4

deficient.

>

> IVIG x 4 years, Sub Q IG x 18 months and LOVES it.

>

> pervious T and B cell abnormalities and antibody deficiency.

IVIG x

>

> 18 months. He had a complete recovery of function at the 6 months

post IVIG

>

> trial and remains IVIG free. In the process of retesting all of his

>

> immunizations for the 3rd time to see if he held them this time.

>

> Mommy to 3 other beautiful and complicated children as well. LOL

>

> _www.caringbridge. com/ny/my2angels _

>

> (http://www.caringbr idge.com/ ny/my2angels)

>

> ************ ********* ********* ******** AOL now offers free email

to everyone.

>

> Find out more about what's free from AOL at http://www.aol. com.

>

>

[Guest guest]

Hi,

welcome to the family. I don’t know about the signal to cut off

ratio. I just know that if you are positive for the antibody, you need

the next test to see if you have active virus. Have you had that test

done yet? When my doc got the results of the antibody test, they called

and told me to come down that day for another test. It shouldn’t

take long to find out and personally, I’d rather just do the test than

wonder and try to figure out if the last test was a true or false

positive. That seems like a waste of energy to me. Being diagnosed

is very stressful, but it’s better than not knowing.

We’re

here for you. We’ve been where you are.

New to group

Hi!! I am new to the

group.I went to the doctor last week for my blood

work results and he told me that I tested positive for Hepatitis C. I

was tested by the HepatitisPanel, Acute w/reflex. The lab work says

that the Hepatitis C Antibody is reactive with a signal to cut-off of

reactive 3.11 H and non-reactive <1.00. I found that the signal-to-

cutoff ratio is (3.8 or greater) to test positive. My blood work also

states that my test is reactive with a low s/co rato and the CDC

recommends supplemental testing. Research from the internet has told me

that usually people who have a low signal to cut off ratio are normally

false positives. Can anyone tell me if

this is correct?

[Guest guest]

Hello, My name is Leanne and my son is four. Go to see an immunologist. He

recommended a tonsillectomy. We made an appointment to see and Ear Nose &

Throat Dr. We had his tonsils removed and it worked. I hope this works for you

has it has for many in the past.

Leanne

mrs_megan_79 <mrs_megan_79@...> wrote:

Hi, my names im 27 years old married with 3 kids 9,5,1 my 5

year old is the reason I joined this group after 6 months of sudden

unexplained fevers and mouth sores last from 7 to 15 days each month

I was told it was strep, I was told it was hand foot and mouth, I was

told it was viral and it go away what finally got the attention of

doctors was that this month we are on our second cycle of the same

symptoms on march 6th day 5 of the last cycle we ended up in the ER

due to a fever of 105.3 that last 24 hours no Tylenol or Motrin could

break it she had a rash over her body that look the same as strep

they tester her but it was negative the gave her penicillin and a

dose of some medicine right before we left it was late and all I

remember was the nurse saying it would help with the severe mouth

ulcers i cant recall the name and the cant find it in the report from

the ER but when we got home at 2am I gave her a dose of antibiotics

and we went to bed when we got up at 8am she was better like nothing

was ever wrong from the 7th to the 24th she was healthy as can be

then the morning of the 24th she complained about her mouth sores

starting again so I took her in on the 26th to see her pediatrician

as we waited for the doctor she started to get the chills and the

nurse took her temp saying that it was 100.5 when we got into to see

the doctor after descussing all my concerns she told me that she was

sure it was syndrome they took blood and urine. I spent hours

last night on the net trying to figure out whats going on with her

and my friend and neighbor found this group.....well thats us in a

nut shell any question or help i can get would be great....THANK

YOU!!!!

[Guest guest]

Hello, My name is Leanne and my son is four. Go to see an immunologist. He

recommended a tonsillectomy. We made an appointment to see and Ear Nose &

Throat Dr. We had his tonsils removed and it worked. I hope this works for you

has it has for many in the past.

Leanne

mrs_megan_79 <mrs_megan_79@...> wrote:

Hi, my names im 27 years old married with 3 kids 9,5,1 my 5

year old is the reason I joined this group after 6 months of sudden

unexplained fevers and mouth sores last from 7 to 15 days each month

I was told it was strep, I was told it was hand foot and mouth, I was

told it was viral and it go away what finally got the attention of

doctors was that this month we are on our second cycle of the same

symptoms on march 6th day 5 of the last cycle we ended up in the ER

due to a fever of 105.3 that last 24 hours no Tylenol or Motrin could

break it she had a rash over her body that look the same as strep

they tester her but it was negative the gave her penicillin and a

dose of some medicine right before we left it was late and all I

remember was the nurse saying it would help with the severe mouth

ulcers i cant recall the name and the cant find it in the report from

the ER but when we got home at 2am I gave her a dose of antibiotics

and we went to bed when we got up at 8am she was better like nothing

was ever wrong from the 7th to the 24th she was healthy as can be

then the morning of the 24th she complained about her mouth sores

starting again so I took her in on the 26th to see her pediatrician

as we waited for the doctor she started to get the chills and the

nurse took her temp saying that it was 100.5 when we got into to see

the doctor after descussing all my concerns she told me that she was

sure it was syndrome they took blood and urine. I spent hours

last night on the net trying to figure out whats going on with her

and my friend and neighbor found this group.....well thats us in a

nut shell any question or help i can get would be great....THANK

YOU!!!!

[Guest guest]

Hello, My name is Leanne and my son is four. Go to see an immunologist. He

recommended a tonsillectomy. We made an appointment to see and Ear Nose &

Throat Dr. We had his tonsils removed and it worked. I hope this works for you

has it has for many in the past.

Leanne

mrs_megan_79 <mrs_megan_79@...> wrote:

Hi, my names im 27 years old married with 3 kids 9,5,1 my 5

year old is the reason I joined this group after 6 months of sudden

unexplained fevers and mouth sores last from 7 to 15 days each month

I was told it was strep, I was told it was hand foot and mouth, I was

told it was viral and it go away what finally got the attention of

doctors was that this month we are on our second cycle of the same

symptoms on march 6th day 5 of the last cycle we ended up in the ER

due to a fever of 105.3 that last 24 hours no Tylenol or Motrin could

break it she had a rash over her body that look the same as strep

they tester her but it was negative the gave her penicillin and a

dose of some medicine right before we left it was late and all I

remember was the nurse saying it would help with the severe mouth

ulcers i cant recall the name and the cant find it in the report from

the ER but when we got home at 2am I gave her a dose of antibiotics

and we went to bed when we got up at 8am she was better like nothing

was ever wrong from the 7th to the 24th she was healthy as can be

then the morning of the 24th she complained about her mouth sores

starting again so I took her in on the 26th to see her pediatrician

as we waited for the doctor she started to get the chills and the

nurse took her temp saying that it was 100.5 when we got into to see

the doctor after descussing all my concerns she told me that she was

sure it was syndrome they took blood and urine. I spent hours

last night on the net trying to figure out whats going on with her

and my friend and neighbor found this group.....well thats us in a

nut shell any question or help i can get would be great....THANK

YOU!!!!

[Guest guest]

after spending the last 48 hours ready anything and everything i can

find on i discussed this with my husband and we see it as the

best choice but we are scared to death.....thank you for responding

> Hi, my names im 27 years old married with 3 kids

9,5,1 my 5

> year old is the reason I joined this group after 6 months of sudden

> unexplained fevers and mouth sores last from 7 to 15 days each

month

> I was told it was strep, I was told it was hand foot and mouth, I

was

> told it was viral and it go away what finally got the attention of

> doctors was that this month we are on our second cycle of the same

> symptoms on march 6th day 5 of the last cycle we ended up in the ER

> due to a fever of 105.3 that last 24 hours no Tylenol or Motrin

could

> break it she had a rash over her body that look the same as strep

> they tester her but it was negative the gave her penicillin and a

> dose of some medicine right before we left it was late and all I

> remember was the nurse saying it would help with the severe mouth

> ulcers i cant recall the name and the cant find it in the report

from

> the ER but when we got home at 2am I gave her a dose of antibiotics

> and we went to bed when we got up at 8am she was better like

nothing

> was ever wrong from the 7th to the 24th she was healthy as can be

> then the morning of the 24th she complained about her mouth sores

> starting again so I took her in on the 26th to see her pediatrician

> as we waited for the doctor she started to get the chills and the

> nurse took her temp saying that it was 100.5 when we got into to

see

> the doctor after descussing all my concerns she told me that she

was

> sure it was syndrome they took blood and urine. I spent hours

> last night on the net trying to figure out whats going on with her

> and my friend and neighbor found this group.....well thats us in a

> nut shell any question or help i can get would be great....THANK

> YOU!!!!

>

>

>

>

>

>

>

[Guest guest]

after spending the last 48 hours ready anything and everything i can

find on i discussed this with my husband and we see it as the

best choice but we are scared to death.....thank you for responding

> Hi, my names im 27 years old married with 3 kids

9,5,1 my 5

> year old is the reason I joined this group after 6 months of sudden

> unexplained fevers and mouth sores last from 7 to 15 days each

month

> I was told it was strep, I was told it was hand foot and mouth, I

was

> told it was viral and it go away what finally got the attention of

> doctors was that this month we are on our second cycle of the same

> symptoms on march 6th day 5 of the last cycle we ended up in the ER

> due to a fever of 105.3 that last 24 hours no Tylenol or Motrin

could

> break it she had a rash over her body that look the same as strep

> they tester her but it was negative the gave her penicillin and a

> dose of some medicine right before we left it was late and all I

> remember was the nurse saying it would help with the severe mouth

> ulcers i cant recall the name and the cant find it in the report

from

> the ER but when we got home at 2am I gave her a dose of antibiotics

> and we went to bed when we got up at 8am she was better like

nothing

> was ever wrong from the 7th to the 24th she was healthy as can be

> then the morning of the 24th she complained about her mouth sores

> starting again so I took her in on the 26th to see her pediatrician

> as we waited for the doctor she started to get the chills and the

> nurse took her temp saying that it was 100.5 when we got into to

see

> the doctor after descussing all my concerns she told me that she

was

> sure it was syndrome they took blood and urine. I spent hours

> last night on the net trying to figure out whats going on with her

> and my friend and neighbor found this group.....well thats us in a

> nut shell any question or help i can get would be great....THANK

> YOU!!!!

>

>

>

>

>

>

>

[Guest guest]

after spending the last 48 hours ready anything and everything i can

find on i discussed this with my husband and we see it as the

best choice but we are scared to death.....thank you for responding

> Hi, my names im 27 years old married with 3 kids

9,5,1 my 5

> year old is the reason I joined this group after 6 months of sudden

> unexplained fevers and mouth sores last from 7 to 15 days each

month

> I was told it was strep, I was told it was hand foot and mouth, I

was

> told it was viral and it go away what finally got the attention of

> doctors was that this month we are on our second cycle of the same

> symptoms on march 6th day 5 of the last cycle we ended up in the ER

> due to a fever of 105.3 that last 24 hours no Tylenol or Motrin

could

> break it she had a rash over her body that look the same as strep

> they tester her but it was negative the gave her penicillin and a

> dose of some medicine right before we left it was late and all I

> remember was the nurse saying it would help with the severe mouth

> ulcers i cant recall the name and the cant find it in the report

from

> the ER but when we got home at 2am I gave her a dose of antibiotics

> and we went to bed when we got up at 8am she was better like

nothing

> was ever wrong from the 7th to the 24th she was healthy as can be

> then the morning of the 24th she complained about her mouth sores

> starting again so I took her in on the 26th to see her pediatrician

> as we waited for the doctor she started to get the chills and the

> nurse took her temp saying that it was 100.5 when we got into to

see

> the doctor after descussing all my concerns she told me that she

was

> sure it was syndrome they took blood and urine. I spent hours

> last night on the net trying to figure out whats going on with her

> and my friend and neighbor found this group.....well thats us in a

> nut shell any question or help i can get would be great....THANK

> YOU!!!!

>

>

>

>

>

>

>

[Guest guest]

after spending the last 48 hours ready anything and everything i can

find on i discussed this with my husband and we see it as the

best choice but we are scared to death.....thank you for responding

> Hi, my names im 27 years old married with 3 kids

9,5,1 my 5

> year old is the reason I joined this group after 6 months of sudden

> unexplained fevers and mouth sores last from 7 to 15 days each

month

> I was told it was strep, I was told it was hand foot and mouth, I

was

> told it was viral and it go away what finally got the attention of

> doctors was that this month we are on our second cycle of the same

> symptoms on march 6th day 5 of the last cycle we ended up in the ER

> due to a fever of 105.3 that last 24 hours no Tylenol or Motrin

could

> break it she had a rash over her body that look the same as strep

> they tester her but it was negative the gave her penicillin and a

> dose of some medicine right before we left it was late and all I

> remember was the nurse saying it would help with the severe mouth

> ulcers i cant recall the name and the cant find it in the report

from

> the ER but when we got home at 2am I gave her a dose of antibiotics

> and we went to bed when we got up at 8am she was better like

nothing

> was ever wrong from the 7th to the 24th she was healthy as can be

> then the morning of the 24th she complained about her mouth sores

> starting again so I took her in on the 26th to see her pediatrician

> as we waited for the doctor she started to get the chills and the

> nurse took her temp saying that it was 100.5 when we got into to

see

> the doctor after descussing all my concerns she told me that she

was

> sure it was syndrome they took blood and urine. I spent hours

> last night on the net trying to figure out whats going on with her

> and my friend and neighbor found this group.....well thats us in a

> nut shell any question or help i can get would be great....THANK

> YOU!!!!

>

>

>

>

>

>

>

[Guest guest]

after spending the last 48 hours ready anything and everything i can

find on i discussed this with my husband and we see it as the

best choice but we are scared to death.....thank you for responding

> Hi, my names im 27 years old married with 3 kids

9,5,1 my 5

> year old is the reason I joined this group after 6 months of sudden

> unexplained fevers and mouth sores last from 7 to 15 days each

month

> I was told it was strep, I was told it was hand foot and mouth, I

was

> told it was viral and it go away what finally got the attention of

> doctors was that this month we are on our second cycle of the same

> symptoms on march 6th day 5 of the last cycle we ended up in the ER

> due to a fever of 105.3 that last 24 hours no Tylenol or Motrin

could

> break it she had a rash over her body that look the same as strep

> they tester her but it was negative the gave her penicillin and a

> dose of some medicine right before we left it was late and all I

> remember was the nurse saying it would help with the severe mouth

> ulcers i cant recall the name and the cant find it in the report

from

> the ER but when we got home at 2am I gave her a dose of antibiotics

> and we went to bed when we got up at 8am she was better like

nothing

> was ever wrong from the 7th to the 24th she was healthy as can be

> then the morning of the 24th she complained about her mouth sores

> starting again so I took her in on the 26th to see her pediatrician

> as we waited for the doctor she started to get the chills and the

> nurse took her temp saying that it was 100.5 when we got into to

see

> the doctor after descussing all my concerns she told me that she

was

> sure it was syndrome they took blood and urine. I spent hours

> last night on the net trying to figure out whats going on with her

> and my friend and neighbor found this group.....well thats us in a

> nut shell any question or help i can get would be great....THANK

> YOU!!!!

>

>

>

>

>

>

>

[Guest guest]

after spending the last 48 hours ready anything and everything i can

find on i discussed this with my husband and we see it as the

best choice but we are scared to death.....thank you for responding

> Hi, my names im 27 years old married with 3 kids

9,5,1 my 5

> year old is the reason I joined this group after 6 months of sudden

> unexplained fevers and mouth sores last from 7 to 15 days each

month

> I was told it was strep, I was told it was hand foot and mouth, I

was

> told it was viral and it go away what finally got the attention of

> doctors was that this month we are on our second cycle of the same

> symptoms on march 6th day 5 of the last cycle we ended up in the ER

> due to a fever of 105.3 that last 24 hours no Tylenol or Motrin

could

> break it she had a rash over her body that look the same as strep

> they tester her but it was negative the gave her penicillin and a

> dose of some medicine right before we left it was late and all I

> remember was the nurse saying it would help with the severe mouth

> ulcers i cant recall the name and the cant find it in the report

from

> the ER but when we got home at 2am I gave her a dose of antibiotics

> and we went to bed when we got up at 8am she was better like

nothing

> was ever wrong from the 7th to the 24th she was healthy as can be

> then the morning of the 24th she complained about her mouth sores

> starting again so I took her in on the 26th to see her pediatrician

> as we waited for the doctor she started to get the chills and the

> nurse took her temp saying that it was 100.5 when we got into to

see

> the doctor after descussing all my concerns she told me that she

was

> sure it was syndrome they took blood and urine. I spent hours

> last night on the net trying to figure out whats going on with her

> and my friend and neighbor found this group.....well thats us in a

> nut shell any question or help i can get would be great....THANK

> YOU!!!!

>

>

>

>

>

>

>