aseptic meningitis

[Guest guest]

Hi Kim,

Thanks for the info! Since this was the first time that Wade had reacted

like this, they weren't sure what it was, so they did the spinal tap to rule

out viral & bacterial meningitis. The infectious disease doc did tell me

that if he reacted this way again within hours to 1 week post infusion, they

would need to do another tap to see if his csf showed the same abnormalities

as this time. If it did, then after that they could safely assume that it

was a reaction to the ivig.

How long does it usually take to et back to normal after a reaction

like this? Wade has been home since Thursday night & yesterday & today he

looks worse & says he feels worse now than before he left the hospital. He

started yesterday with temperature elevations that never broke until 3:00am

this morning & his temp is on the rise again now. He has an appointment with

the ped @ 10:50am, so hopefully he will have some new light to shed on this.

Thanks again for your help & insight! Hope is doing well & enjoying

the Spring weather!

Love & Hugs,

Beth, Mom to Wade,15 (CVID,etc.)

>From: " kaclight " <kaclight@...>

>Reply-

>

>Subject: Aseptic Meningitis

>Date: Tue, 30 Apr 2002 02:51:26 -0000

>

>Beth,

>

>My daughter has had several episodes of aseptic meningitis.

>It has always been due to IVIg administration - mainly related to the

>rate of infusion. Our immunologist does not make Jess go through a

>spinal tap. If it is within 72 hours of an infusion, we operate on

>the assumption that it is IVIg induced and just watch it carefully.

>It is a documented reaction on IVIg. I don't know if that is smart or

>not, but I would hate to see Jess have to have a tap everytime it

>happens. We even had to get the immunologist on the phone for the ER

>doc once to convince him that all Jess needed was fluids and some

>meds. We still had to sign a form refusing the tap, stating that we

>were responsible. I hope that Wade does not have it happen often.

>It is horrible to see your child in so much pain - and scary too.

>

>Kim, mom to , selective antibody deficiency

>

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Poor Casey!

When Rebekah was having all of her side effects, what worked was to

dramatically slow the rate. The infusion center was pumping it in at an

initial rate of 25 mL/hour and increasing it to 80 mL/hour. Rebekah was 2.5

years old at the time. Now, we start at 5 mL/hour and double it every 15

minutes until we hit 50 mL/hour. Yes, it takes longer, but those headaches

were awful!

We also found that we needed to keep her hydrated. We start the day before

by pushing an extra 8 ounces of fluid and we give her an extra 8 ounces

after we get the needle in.

I will say that the side effects did seem to become milder and milder over

time. But Rebekah remains sensitive to rate. When we bumped the rate from

a max of 45 to 50, it probably took 4 treatments before she didn't get any

headaches that bothered her. I guess, for Rebekah, slow, steady infusions

will be necessary. I know that some kids can take it at a rather fast rate,

but not Rebekah.

Hope Casey is feeling better soon!

Pam

wife to (17 years)

mother to , 10, Hannah, 8, Rebekah, 4, and Leah, 2

Aseptic Meningitis

My question is.......will this happen again at the next treatment? what have

you experienced and what has worked as far as dealing with it.

[Guest guest]

Hi Fran

what is aseptic meningitis? Aubrey had menigitis when he was 7 months old

but they did not do lumbar puncture test as he was so young and ill. They

therefore did not know what strain it was and no bacteria was found in blood

cultures. It was after this that the started although we did not know

what it was until he was 4.

Do you think this could be why they have as a result of the

meningitis?

Lorna

Mum to Aubrey 8 and Imara 18 mths

Liverpool, England

>From: " Fran Bulone " <fbulone@...>

>Reply-

>< >

>Subject: Re: Bella

>Date: Tue, 3 May 2005 09:56:20 -0400

>

>Sue

>ph has aseptic meningitis. Meaning they found numeroua WBCs in his

>cerebrospinal fluid however they found NO bacteria or viral loads.

>

>It was during an episode, where his blood was checked because fever had

>elevated to 106.5 within minutes and the pediatrician wanted him in the ER.

>They decided since his sed rate was extreme at 145, and his WBC count I

>believe was around 45,000 also extreme, they were afraid of endocarditis or

>bacterial meningitis. Turned out high WBC's in the CSF and that is

>considered Aseptic Meningitis.

>

>I think (only my opinion) since ph's WBCs as an infant and young

>toddler

>ALWAYS elevated to an extreme (less extreme now at 5 they run 17,000 to

>29,000).... in his blood work... why wouldn't they elevate in CSF. Some

>docs

>agreed with me while others say no, he really had aseptic meningitis!

>

>Anyway, my home number is 704-843-7277

>My cell is 704-989-1173... Home is better to hear!!!

>Living in the rural section of Charlotte gives poor cell reception!! LOL

>God Bless

>Fran

>Fran A Bulone

>Mom to ph 5 yrs old

>Waxhaw, NC

>

>Owner & Moderator Group

>

>

>

>

[Guest guest]

>>>Hi Fran

what is aseptic meningitis? Aubrey had menigitis when he was 7 months old

but they did not do lumbar puncture test as he was so young and ill. They

therefore did not know what strain it was and no bacteria was found in blood

cultures. It was after this that the started although we did not know

what it was until he was 4.

Do you think this could be why they have as a result of the

meningitis?

Lorna

Mum to Aubrey 8 and Imara 18 mths

Liverpool, England>>>

Lorna,

I believe has a trigger. And the trigger may be different in each

child. Not all of the children here on the list have had meningitis.

Actually according to our discussions and the surveys we have received

back.... there is a very small number of children who have had meningitis.

Aseptic Meningitis is meningitis. When the spinal tap is done and the CSF

(cerebrospinal fluid) is collected and sent to the lab, there is NO bacteria

found and no viral load found. However there is an elevated WBC count in the

CSF and that creates the diagnosis of aseptic meningitis.

A while back people thought it might be strep infection triggering.

Then we had the allergen theory...

Another was vaccines...

Many theories.

The only commonality I can see is that most people have noticed SOMETHING

that triggered an abnormal response in our children's immune system. NOT

all.... but then again we have had MANY children come to our group, who

later had DNA studies done and were found NOT to have and instead have

actual genetic mutations for the other Periodic Fever disorders.

It is difficult because withing the past 10 years, NIH and other large

research organizations around the world have identified MANY markers and the

diagnosis gets changed.

This IS another reason why some of our children have what is called Clinical

FMF and Clinical TRAPS.

Their symptoms are more like those disorders and they respond BETTER to the

treatment used in those disorders... so classification changes.

I have learned so much researching and networking with medical professionals

and the other Periodic Fever Organizations... (especially for HIDS and FMF)

and working closely with the NIH.

God Bless

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

Thanks for such a speedy reply and for being such a wealth of information!

Lorna

>From: " Fran Bulone " <fbulone@...>

>Reply-

>< >

>Subject: Re: aseptic meningitis

>Date: Tue, 3 May 2005 10:17:27 -0400

>

> >>>Hi Fran

>

>what is aseptic meningitis? Aubrey had menigitis when he was 7 months old

>but they did not do lumbar puncture test as he was so young and ill. They

>therefore did not know what strain it was and no bacteria was found in

>blood

>cultures. It was after this that the started although we did not

>know

>what it was until he was 4.

>

>Do you think this could be why they have as a result of the

>meningitis?

>

>Lorna

>Mum to Aubrey 8 and Imara 18 mths

>Liverpool, England>>>

>

>

>

>

>Lorna,

>I believe has a trigger. And the trigger may be different in each

>child. Not all of the children here on the list have had meningitis.

>Actually according to our discussions and the surveys we have received

>back.... there is a very small number of children who have had meningitis.

>

>Aseptic Meningitis is meningitis. When the spinal tap is done and the CSF

>(cerebrospinal fluid) is collected and sent to the lab, there is NO

>bacteria

>found and no viral load found. However there is an elevated WBC count in

>the

>CSF and that creates the diagnosis of aseptic meningitis.

>

>A while back people thought it might be strep infection triggering.

>Then we had the allergen theory...

>Another was vaccines...

>

>Many theories.

>The only commonality I can see is that most people have noticed SOMETHING

>that triggered an abnormal response in our children's immune system. NOT

>all.... but then again we have had MANY children come to our group, who

>later had DNA studies done and were found NOT to have and instead

>have

>actual genetic mutations for the other Periodic Fever disorders.

>

>It is difficult because withing the past 10 years, NIH and other large

>research organizations around the world have identified MANY markers and

>the

>diagnosis gets changed.

>

>This IS another reason why some of our children have what is called

>Clinical

>FMF and Clinical TRAPS.

>

>Their symptoms are more like those disorders and they respond BETTER to the

>treatment used in those disorders... so classification changes.

>

>I have learned so much researching and networking with medical

>professionals

>and the other Periodic Fever Organizations... (especially for HIDS and FMF)

>and working closely with the NIH.

>God Bless

>Fran

>Fran A Bulone

>Mom to ph 5 yrs old

>Waxhaw, NC

>

>Owner & Moderator Group

>

>

>

>

>

[Guest guest]

-I am so sorry to hear Blake has had these problems!

(((HUGS))))

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

_____

From: [mailto: ] On Behalf Of

marie

Sent: Thursday, April 27, 2006 8:21 PM

Subject: Aseptic Meningitis

Hi ALL!!

First I want to tell dale that she did " Hit the nail on the head "

when she told me she believed Blake may have Aseptic Meningitis.

I took Blake to the Pediatrician after posting here. The Dr. did

tell us that all signs were to AM. It took him being inpatient in

our local hospital & a call to the immunologist. He spent 2 days in

patient. He went home after having no fever or headache for 24 hrs.

The Immunologist gave orders for Blake to go back to the Gammagard

S/D.

Well, i told the nurse at the center about our previous week. She

called the Immuno. & he was not in. But his partner was. The

partner could NOT find the order for the Gammagard S/D. He tells the

nurse to just premeditate with Tylenol & Benadryl. this " should "

keep problems at bay!! So, they have to give Blake the Gammagard

Liquid again(3rd time...a charm......NOT!!!!) the even ran the stuff

at super low rate......30 cc hrly. We get to leave around 5:00.

Well, no matter what was given, what was slowed down, Blake again

has Aseptic Meningitis!!!!

We took Blake to the Immunologist amidst the symptoms. Blake also

has a staff infection on his right eye. Evidently a stye was

developing & it became infected(true Blake style....can't just have

a stye). The culture has come back from some of the fluid in the

stye. Staph & strep(I already said " true Blake style " !!)

The Immunologist sent the order to the Center for Blake to get ONLY

Gammagard S/D. He also called the pharmacy to tell them WHY he was

making the order. That by no means is Blake to get anything that he

has not approved. He called the nurses & they in turn called me to

let me know they got the call & the orders. They also apologized

for Blake getting so sick. & that it had to happen 2 times in a row

for things to get changed back in order.

I was impressed that the immunologist was on top of things this

week. usually he will tell us it is normal to have issues with IVIG.

But this time, he was really worried because Blake usually does not

have issues at infusion anymore & plus the fact that Blake was

SOOOOO sick coming into his office. A sight he has not seen since

Blake was about 10 yrs. old(that is on an out-patient visit).

I for one now know what to look for in Aseptic Meningitis. it is

scary not only for (DH) & myself to see, but for Blake to

experience!!

Gotta run.

Thanks for helping dale 0:).

We appreciate all the help we get from everyone!!!

_____

[Guest guest]

My understanding is that the headaches and neckaches that kids can

experience after IVIG is called " aseptic meningitis " . Meningitis

just means an inflammation of the meninges....the fibrous tissue

that coves the brain and the spinal cord. " I Guess " that IVIG can

cause the meninges to inflame in some kids. I think it is fairly

benign and goes away after days or so. Maggie, our three year old

had it after her first IVIG and then her with her subsequent dose,

they gave her an IV steroid injection to prevent another episode and

it worked. Aspetic meningitis and viral meningitis are two

different birds. Aspetic meningitis is not caused by a virus (as in

viral) or bacteria (as in bacterial)...it is simply an

imflammation. My understanding is that it is fairly common with

first time IVIGers. Feel free to pipe up anyone if I am wrong. I

know that some kids do end up in the hospital with the aseptic

meningitis....I imagine that it scares the heck out of physicians

that don't understand it. It can be very painful and my guess is

that is why some kids end up in the hospital.

Terri Cerda mom (46), Molly (5) and Maggie (3) CVID with B Cell

disorder

[Guest guest]

hi Terri,

thanks for responding.

The hospital said my daughter's meningitis was viral, the dr said aseptic and

the CDC website says the terms viral and aseptic mean one and the same. Either

way, she had not been feeling well with severe headache (her regular doc thought

is was migraine but no migraine meds were working) for 3-4 days prior to her

second IVIG...she had a cold that week previous, which they said could also set

her up for meningitis... BUT she definitely got worse after the IVIG. I think

this has left some of the question as to which came first...She has been ill

since that time with extreme leg pain, chronic daily migraine (complicated by

meningitis but being managed now), and terrible fatigue...and they seem to look

to the meningitis as the cause or trigger. The biggest issue for me is whether

I need to be concerned about her IVIG, which is why I wondered what other's had

experienced.

cerdaclan <tcerda@...> wrote:

My understanding is that the headaches and neckaches that kids can

experience after IVIG is called " aseptic meningitis " . Meningitis

just means an inflammation of the meninges....the fibrous tissue

that coves the brain and the spinal cord. " I Guess " that IVIG can

cause the meninges to inflame in some kids. I think it is fairly

benign and goes away after days or so. Maggie, our three year old

had it after her first IVIG and then her with her subsequent dose,

they gave her an IV steroid injection to prevent another episode and

it worked. Aspetic meningitis and viral meningitis are two

different birds. Aspetic meningitis is not caused by a virus (as in

viral) or bacteria (as in bacterial)...it is simply an

imflammation. My understanding is that it is fairly common with

first time IVIGers. Feel free to pipe up anyone if I am wrong. I

know that some kids do end up in the hospital with the aseptic

meningitis....I imagine that it scares the heck out of physicians

that don't understand it. It can be very painful and my guess is

that is why some kids end up in the hospital.

Terri Cerda mom (46), Molly (5) and Maggie (3) CVID with B Cell

disorder

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: /messages

[Guest guest]

It is atypical to get the aseptic menigits symptoms from SCIG according to the

nurse that trained me.

SCIG is absorbed over 24-48 hours and the reason for the reaction to IVIG is

that the IGG crosses the blood brain barrier and the high protein

concentration is what caused the symptoms. This is how my nurse described it

to me.

Hope that helps.

S.

Mom to , 4, PID nos, NK cell defect

Currently on week two of trial off SCIG>

Quoting nancy barnes <nancyb315@...>:

> Wondering if anyone knows if you only get aseptic meningitis from IVIG, or

> SCIG as well?

>

> Thanks,

>

> (mom to cvider)

>

>

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

> Sick sense of humor? Visit TV's Comedy with an Edge to see what's on,

> when.

>

>

[Guest guest]

, that is the way I understood it, too.

Peace be with you,

Pattie

The Will of God will never take you where the Grace of God won't be with

you.

[Guest guest]

Thank you and Pattie, I appreciate the information and it puts me at ease.

lmschatz@... wrote: It is atypical to

get the aseptic menigits symptoms from SCIG according to the

nurse that trained me.

SCIG is absorbed over 24-48 hours and the reason for the reaction to IVIG is

that the IGG crosses the blood brain barrier and the high protein

concentration is what caused the symptoms. This is how my nurse described it

to me.

Hope that helps.

S.

Mom to , 4, PID nos, NK cell defect

Currently on week two of trial off SCIG>

Quoting nancy barnes <nancyb315@...>:

> Wondering if anyone knows if you only get aseptic meningitis from IVIG, or

> SCIG as well?

>

> Thanks,

>

> (mom to cvider)

>

>

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

> Sick sense of humor? Visit TV's Comedy with an Edge to see what's on,

> when.

>

>

[Guest guest]

http://en.wikipedia.org/wiki/Aseptic_meningitis

lists as cause many viral bacterial and fungal infections

many which we discuss re CFS

I wonder if we get aseptic meningitis as a diagnosis then people would

belive we are truly sick???? and we'd get better insurance coverage

for treatments?

amy

[Guest guest]

hi ,

I am so sorry for your troubles... we had this happen to my oldest about a year

and a half ago... it was soooo scary! He was using Gammaguard Liquid at the

time -- we did home infusion and the nurse had just left when he suddenly had a

grand mal seizure and when he came around had some temporary paralysis and was

screaming because of the pain in his belly and head... we spent the night in

Children's ER. But it took many doses of pretty strong pain killers to calm him

down so he could sleep. He ended up missing 2-3 weeks of school, during which

time he made us keep all the lights in the house off and his younger brothers

had to keep all noise to a minimum. He spent most of this time on the couch

laying down with no desire for TV or video games. To this day, he is on

medication to control the daily migraines he has had ever since and his vision

was permanently changed (although the doctors insist this is a cooincidence).

For Ben, he had already had very bad migraines with the powdered Gammaguard and

his infusion time was already up to 7 hours... so we tried Gammunex over 10

hours and he had breathing trouble. That's when we switched to SCIG Vivaglobin

and things have been much better for us. I'm sure it makes it very difficult if

he has problems with the Vivaglobin. I remember how frightening it was worrying

about whether we would be able to find a product he could tolerate again. He

had been on the Gammaguard for 6 years with no major problems prior to this.

I hope you are able to find one that works for him! My thoughts are with you!

, mom to 3 with CVID: Ben (9), (6) and Matty

(3)http://www.teamhope.info/http://foxfamilypidd.bravehost.com/

EMAILING FOR THE GREATER GOODJoin me

[Guest guest]

Thank you so much for your kind words. He has not eaten by mouth since this

nightmare began. It is a good thing he has a gtube for supplemental nutrition

or we would be back in for iv fluids due to dehydration. He has been walking

like a little old man, with prblems standing stright up, of flexibiliuty of

joints. He also walks with his head cocked to the side all the time, I am sure

from the headaches.

I am praying that the Privigen is tolerated well.. I am really going to insist

on very, very slow infusion rates. We had to do that when he was on Polygam

because he would have post infusion migraines with the shakes. I am afraid of

seizures because he has an abnormal EEG with right sided brain spikes. I am

told it is only a matter of time before he begins having grand mal seizures.

Thank you again, I really appreciate you taking the time to relate your scary

story. It helps to know you are not alone in this journey.

in CT mom to 6 ½ years old

________________________________

From: [mailto: ] On Behalf Of

Fox

Sent: Friday, September 19, 2008 1:12 PM

Subject: re: Aseptic Meningitis

hi ,

I am so sorry for your troubles... we had this happen to my oldest about a year

and a half ago... it was soooo scary! He was using Gammaguard Liquid at the time

-- we did home infusion and the nurse had just left when he suddenly had a grand

mal seizure and when he came around had some temporary paralysis and was

screaming because of the pain in his belly and head... we spent the night in

Children's ER. But it took many doses of pretty strong pain killers to calm him

down so he could sleep. He ended up missing 2-3 weeks of school, during which

time he made us keep all the lights in the house off and his younger brothers

had to keep all noise to a minimum. He spent most of this time on the couch

laying down with no desire for TV or video games. To this day, he is on

medication to control the daily migraines he has had ever since and his vision

was permanently changed (although the doctors insist this is a cooincidence).

For Ben, he had already had very bad migraines with the powdered Gammaguard and

his infusion time was already up to 7 hours... so we tried Gammunex over 10

hours and he had breathing trouble. That's when we switched to SCIG Vivaglobin

and things have been much better for us. I'm sure it makes it very difficult if

he has problems with the Vivaglobin. I remember how frightening it was worrying

about whether we would be able to find a product he could tolerate again. He had

been on the Gammaguard for 6 years with no major problems prior to this.

I hope you are able to find one that works for him! My thoughts are with you!

, mom to 3 with CVID: Ben (9), (6) and Matty

(3)http://www.teamhope.info/http://foxfamilypidd.bravehost.com/

<http://www.teamhope.info/http:/foxfamilypidd.bravehost.com/>

EMAILING FOR THE GREATER GOODJoin me

[Guest guest]

Hi ,

            I missed the earlier posts, but when I saw the subject line Aseptic

Meningitis, I thought I would write.  Our son was diagnosed with Aseptic

Meningitis in October of 2006, a year later they found the virus in the brain

cells that caused his Aseptic meningitis, so it was no longer Aseptic.(and

unfortunately he was not able to get the virus out of his system)  It,

unfortunately, caused his brain to atropy(not common) and he lost his ability to

walk, but it took a year for that to happen.  He had difficulty walking for

about 3-4 months before he lost altogether.  It also affected his speech.  I'm

not sure if our experience is anything close to yours, but feel free to email me

anytime at julieg52@... about our experience, i know we would have

appreciated it a couple of years ago. 

 

 

My thoughts are with you, Stay strong,

Murray

From: Ladden <LLadden@...>

Subject: RE: re: Aseptic Meningitis

Date: Friday, September 19, 2008, 1:19 PM

Thank you so much for your kind words. He has not eaten by mouth since this

nightmare began. It is a good thing he has a gtube for supplemental nutrition or

we would be back in for iv fluids due to dehydration. He has been walking like a

little old man, with prblems standing stright up, of flexibiliuty of joints. He

also walks with his head cocked to the side all the time, I am sure from the

headaches.

I am praying that the Privigen is tolerated well.. I am really going to insist

on very, very slow infusion rates. We had to do that when he was on Polygam

because he would have post infusion migraines with the shakes. I am afraid of

seizures because he has an abnormal EEG with right sided brain spikes. I am told

it is only a matter of time before he begins having grand mal seizures.

Thank you again, I really appreciate you taking the time to relate your scary

story. It helps to know you are not alone in this journey.

in CT mom to 6 ½ years old

____________ _________ _________ __

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Fox

Sent: Friday, September 19, 2008 1:12 PM

groups (DOT) com

Subject: re: Aseptic Meningitis

hi ,

I am so sorry for your troubles... we had this happen to my oldest about a year

and a half ago... it was soooo scary! He was using Gammaguard Liquid at the time

-- we did home infusion and the nurse had just left when he suddenly had a grand

mal seizure and when he came around had some temporary paralysis and was

screaming because of the pain in his belly and head... we spent the night in

Children's ER. But it took many doses of pretty strong pain killers to calm him

down so he could sleep. He ended up missing 2-3 weeks of school, during which

time he made us keep all the lights in the house off and his younger brothers

had to keep all noise to a minimum. He spent most of this time on the couch

laying down with no desire for TV or video games. To this day, he is on

medication to control the daily migraines he has had ever since and his vision

was permanently changed (although the doctors insist this is a cooincidence) .

For Ben, he had already had very bad migraines with the powdered Gammaguard and

his infusion time was already up to 7 hours... so we tried Gammunex over 10

hours and he had breathing trouble. That's when we switched to SCIG Vivaglobin

and things have been much better for us. I'm sure it makes it very difficult if

he has problems with the Vivaglobin. I remember how frightening it was worrying

about whether we would be able to find a product he could tolerate again. He had

been on the Gammaguard for 6 years with no major problems prior to this.

I hope you are able to find one that works for him! My thoughts are with you!

, mom to 3 with CVID: Ben (9), (6) and Matty

(3)http://www.teamhope .info/http: //foxfamilypidd. bravehost. com/

<http://www.teamhope .info/http: /foxfamilypidd. bravehost. com/>

EMAILING FOR THE GREATER GOODJoin me

[Guest guest]

In a message dated 9/19/2008 5:23:37 P.M. Eastern Daylight Time,

daleweath@... writes:

if the body reacts to certain

portions of the foreign protein -- it can cause an inflamation of the

meninges which creates excruciating pain - light sensitivity, sound

sensitivity, the worst headache imaginable, dizzyness, nausea, etc.

Until today, I had not heard of any long-term affects of this. Katy's

always resolved within a week and she was never hospitalized for it.

Brittany had this when on her old product in her early IVIG days. She was

hospitalized! They never told me it was Aseptic Meningitis!!

,

Janet mom to Brittany age 17, CVID, Urticaria & Angioedema, plus.....

**************Looking for simple solutions to your real-life financial

challenges? Check out WalletPop for the latest news and information, tips and

calculators. (http://www.walletpop.com/?NCID=emlcntuswall00000001)

[Guest guest]

from Dale, Mom to Katy, CVID, married and grown

Just want to clarify what we're talking about here.

Asceptic (means without a bacteria or virus cause - not caused by a germ)

and Meningitis -- means inflammation of the meninges (the lining of the

brain and spinal cord).

If an IgG product is given too rapidly or if the body reacts to certain

portions of the foreign protein -- it can cause an inflamation of the

meninges which creates excruciating pain - light sensitivity, sound

sensitivity, the worst headache imaginable, dizzyness, nausea, etc.

Until today, I had not heard of any long-term affects of this. Katy's

always resolved within a week and she was never hospitalized for it.

She did it 3 times in a row on one particular product.

I just don't want anyone to think that you can get Infectious Meningitis

from the product itself. That's not what we are talking about!

Hope that helps,

In His service,

dale

[Guest guest]

I was wondering about that myself. had it 3 times, but no long term

affects. He was never hospitalized either.

@...: daleweath@...: Fri, 19 Sep 2008

14:22:33 -0700Subject: Re: re: Aseptic Meningitis

from Dale, Mom to Katy, CVID, married and grownJust want to clarify what we're

talking about here.Asceptic (means without a bacteria or virus cause - not

caused by a germ)and Meningitis -- means inflammation of the meninges (the

lining of the brain and spinal cord).If an IgG product is given too rapidly or

if the body reacts to certain portions of the foreign protein -- it can cause an

inflamation of the meninges which creates excruciating pain - light sensitivity,

sound sensitivity, the worst headache imaginable, dizzyness, nausea, etc. Until

today, I had not heard of any long-term affects of this. Katy's always resolved

within a week and she was never hospitalized for it.She did it 3 times in a row

on one particular product.I just don't want anyone to think that you can get

Infectious Meningitis from the product itself. That's not what we are talking

about!Hope that helps,In His service,dale

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[Guest guest]

After rulling out sepsis from cultures and 3 days of iv vancomycin and

fortax(second time with this course in 1 month), and listening to me and

the residents and nurses on the floor, they decided not to do a spinal

and diagnose with aseptic meningitis.

He is getting better quickly and I see no residual effects.

, what a frightening experience you had to go through! Our kids seem to

get tough from all they go through. My heart goes out to the two of you. I

hope you had support through all this.

The good news is he is getting better. ((HUGS))

Janet, mom to Brittany, age 17, CVID, Angioedema & Urticaria, Vitamin D def.

Hyperparathyroid & sill testing thyroid

**************Looking for simple solutions to your real-life financial

challenges? Check out WalletPop for the latest news and information, tips and

calculators. (http://www.walletpop.com/?NCID=emlcntuswall00000001)

[Guest guest]

Hi

The reason was hospitalized is because they orginally believed it

to be sepsis, originating from the new port that had been inserted the

day before. We had been in the hospital 4 times since August 13th due

to port problems. First his port needed to be changed on 8/13 because

he had grown quickly and a lot from growth hormone shots over a 6 month

time. Four inches and 20 lbs had caused the port to be too small,

twisted and almost impossible to access. It had popped out the pocket,

we had found after surgery to replace it and had imbedded into chest

muscle tissue.

The port was very hard to remove, so after the new port was inserted on

August 13th,it swelled and oozed from the stitches site. was

admitted due to suspicion of new port infection. The site continued to

swell and be incredibly painful. Utrasound found that the port was

encased in a large fluid pocket.

Surgery wanted to save the new port, because this was the 3rd port in

the same location and they knew if the port was removed, it would have

to be placed on the right side . They aspirated the site for culture

and everyone was convinced it was infected. It was not, it has a large

ceroma, from the the extensive tissue damage from the previous port

removal.

We went home and his regular immune doc was back from his vacatio and

took one look at it, severeal days after discharge and said it needed to

be removed right away. The site had swollen worse that it had been and

was leaking fluid.

They did not want to openup the other side of the chest at the same time

just in case this site was really infected, so they admitted us again on

9/12 for port insertion on the right side and decided to give him his

ivig at the saite to make sure all was ok.

About 5 hours after discharge, dropped to the ground in a

children's museum and would not wake up for 3 days. His site was

swollen again, so everyone thought it was infected. They did an

ultrasound and found some fluid, but not the amount he had with the

previous port. I did not think it was a port infection, but rather an

IVIG reaction, because he had stiff joints(which is very significant

because he has hyperflexibility of the joints), extreme light

sensitiivity and could not hold his spine and head straight. His joints

were red and swollen. He was on ICU watch because his heart rate and bp

dropped significantly. He has nonprogressive dysautonomia, so his has

hypertension and tachycardia as a baseline, so when his sleeping heart

dropped about 50 points from his norm and his bp dropped to 70 over 37,

they called icu to be on standby.

After rulling out sepsis from cultures and 3 days of iv vancomycin and

fortax(second time with this course in 1 month), and listening to me and

the residents and nurses on the floor, they decided not to do a spinal

and diagnose with aseptic meningitis.

He is getting better quickly and I see no residual effects.

in CT mom to

________________________________

From: [mailto: ] On Behalf

Of BBsmart2@...

Sent: Friday, September 19, 2008 8:22 PM

Subject: Re: re: Aseptic Meningitis

In a message dated 9/19/2008 5:23:37 P.M. Eastern Daylight Time,

daleweath@... <mailto:daleweath%40gmail.com> writes:

if the body reacts to certain

portions of the foreign protein -- it can cause an inflamation of the

meninges which creates excruciating pain - light sensitivity, sound

sensitivity, the worst headache imaginable, dizzyness, nausea, etc.

Until today, I had not heard of any long-term affects of this. Katy's

always resolved within a week and she was never hospitalized for it.

Brittany had this when on her old product in her early IVIG days. She

was

hospitalized! They never told me it was Aseptic Meningitis!!

,

Janet mom to Brittany age 17, CVID, Urticaria & Angioedema, plus.....

**************Looking for simple solutions to your real-life financial

challenges? Check out WalletPop for the latest news and information,

tips and

calculators. (http://www.walletpop.com/?NCID=emlcntuswall00000001

<http://www.walletpop.com/?NCID=emlcntuswall00000001> )

[Guest guest]

Hi ,

      Glad to hear everything is looking up, I was wondering about it possibly

being infectious related too, which is why I left a message about what happened

to our son.  His was infectious related miningitis, although they didn't think

so for a very long time, they called it Aseptic, but as it didn't clear up

they realized it had to be infectious.  But we have learned that we usually know

way more about what's normal for our children than the docs, so I'm glad they

listened to you and the nurses on the floor and felt like  spinal was not

necessary.  Best wishes.

 

From: Ladden <LLadden@...>

Subject: RE: re: Aseptic Meningitis

Date: Saturday, September 20, 2008, 8:55 AM

Hi

The reason was hospitalized is because they orginally believed it

to be sepsis, originating from the new port that had been inserted the

day before. We had been in the hospital 4 times since August 13th due

to port problems. First his port needed to be changed on 8/13 because

he had grown quickly and a lot from growth hormone shots over a 6 month

time. Four inches and 20 lbs had caused the port to be too small,

twisted and almost impossible to access. It had popped out the pocket,

we had found after surgery to replace it and had imbedded into chest

muscle tissue.

The port was very hard to remove, so after the new port was inserted on

August 13th,it swelled and oozed from the stitches site. was

admitted due to suspicion of new port infection. The site continued to

swell and be incredibly painful. Utrasound found that the port was

encased in a large fluid pocket.

Surgery wanted to save the new port, because this was the 3rd port in

the same location and they knew if the port was removed, it would have

to be placed on the right side . They aspirated the site for culture

and everyone was convinced it was infected. It was not, it has a large

ceroma, from the the extensive tissue damage from the previous port

removal.

We went home and his regular immune doc was back from his vacatio and

took one look at it, severeal days after discharge and said it needed to

be removed right away. The site had swollen worse that it had been and

was leaking fluid.

They did not want to openup the other side of the chest at the same time

just in case this site was really infected, so they admitted us again on

9/12 for port insertion on the right side and decided to give him his

ivig at the saite to make sure all was ok.

About 5 hours after discharge, dropped to the ground in a

children's museum and would not wake up for 3 days. His site was

swollen again, so everyone thought it was infected. They did an

ultrasound and found some fluid, but not the amount he had with the

previous port. I did not think it was a port infection, but rather an

IVIG reaction, because he had stiff joints(which is very significant

because he has hyperflexibility of the joints), extreme light

sensitiivity and could not hold his spine and head straight. His joints

were red and swollen. He was on ICU watch because his heart rate and bp

dropped significantly. He has nonprogressive dysautonomia, so his has

hypertension and tachycardia as a baseline, so when his sleeping heart

dropped about 50 points from his norm and his bp dropped to 70 over 37,

they called icu to be on standby.

After rulling out sepsis from cultures and 3 days of iv vancomycin and

fortax(second time with this course in 1 month), and listening to me and

the residents and nurses on the floor, they decided not to do a spinal

and diagnose with aseptic meningitis.

He is getting better quickly and I see no residual effects.

in CT mom to

____________ _________ _________ __

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf

Of BBsmart2aol (DOT) com

Sent: Friday, September 19, 2008 8:22 PM

groups (DOT) com

Subject: Re: re: Aseptic Meningitis

In a message dated 9/19/2008 5:23:37 P.M. Eastern Daylight Time,

daleweathgmail (DOT) com <mailto:daleweath% 40gmail.com> writes:

if the body reacts to certain

portions of the foreign protein -- it can cause an inflamation of the

meninges which creates excruciating pain - light sensitivity, sound

sensitivity, the worst headache imaginable, dizzyness, nausea, etc.

Until today, I had not heard of any long-term affects of this. Katy's

always resolved within a week and she was never hospitalized for it.

Brittany had this when on her old product in her early IVIG days. She

was

hospitalized! They never told me it was Aseptic Meningitis!!

,

Janet mom to Brittany age 17, CVID, Urticaria & Angioedema, plus.....

************ **Looking for simple solutions to your real-life financial

challenges? Check out WalletPop for the latest news and information,

tips and

calculators. (http://www.walletpo p.com/?NCID= emlcntuswall0000 0001

<http://www.walletpo p.com/?NCID= emlcntuswall0000 0001> )