Re: Update on Gwynn and Aiden (, , , Dale etc)

[Guest guest]

Hi, .

Did they say why they checked LDH? Did they check for c.dif toxin or just

suspect it?

Also, have you connected with Kathy Antilla at the IDF? I think she is from

your area and might have ideas.

I'm so sorry to hear that your kids are still going through this.

[Guest guest]

hi ,

has your dr told you why he does not think ivig would help Gwynn or Aiden?

It is no wonder you are feeling burnt out with two ill children, and still

seeking answers. How frustrating. I am pleased to hear that you have a

referral for Aiden and Gwynn to the Mayo Clinic. Hang in there, and I will be

praying for a appointment and answers soon.

Hugs,

sarah larson <mom2gwynn@...> wrote: Hey

guys...I am still here just don't chime in as

often. Life is crazy as usual... to answer your

question...yes some of those tests have been done and

some have not...I don't know off the top of my head

what was what. Her LDH remains high, her CRP is almost

always slightly elevated. The ANA was normal I think?

Both kids have unique issues and both share alot of

the same things. Aiden was just diagnosed after 3

courses of abx and a fever lasting more than 6 weeks

with a chronic sinus infection,this followed a

pneumonia which is his 3rd in 6 months ..he is not

eating well has lost more than 3 pounds in the last

month and is just miserable...they had to stop the

latest abx because they are concerned of c-diff

because he has had diarhea for more than 10

days...according to our immuno he does not think IVIG

will help my kids although in his first note to our

ped he said it may be neccesary. Gwynn has had several

nasty viral bugs...complains daily of stomach pain and

joint pain. She has had a cough x's 3 weeks. She has

bowel movements that literally fill the toilet but are

of normal consistency. She occasionally vomits with

blood in it and sometimes has black tarry stools.

I am very burned out and at my wits end. Yesterday the

doc called in a referral for both kids to be evaluated

at the mayo clinic...we are going to find out shortly

when we will be going there....

~~

--- nancy barnes <nancyb315@...> wrote:

> ,

>

> I think we have had some conversation about this

> before, but have you taken Gwynn to see a pediatric

> rheumatologist? It could be what is sometimes

> related to CVID, but it could be ja. Has anyone

> done labs to test things like her ANA, CRP, RF, SED

> rate, etc?

>

> (mom to , 16)

>

> sarah larson <mom2gwynn@...> wrote:

> Betsy-

>

> Gwynn has complained of leg pain since shortly

> before

> she was diagnosed with her pid 3 years ago. It gets

> worse when she is sick to the point that she says

> she

> can not walk. Recently when she gets sick I can

> hear

> all her joints popping and cracking like she is a

> little old lady. wrists, back and ankles are the

> worst. She cries about it alot and

> tylenol/ibprofen

> only seem to take the edge off. She also complains

> of

> stomach pain almost constantly...so far nobody

> seems

> to know what is causing either.

>

> ~~

> --- henrysamsmom98 <bfurler@...> wrote:

>

> > Do your kids have muscle or joint pain due to

> PID?

> > Did IVIG help? Sam

> > has been complaining of his legs and arms hurting

> on

> > and off for months

> > now. He will probably start IVIG fairly soon

> > (pending the IG levels -

> > Immunologist forgot to draw them) and I have high

> > hopes he will feel

> > better.

> > Thanks!

> > Betsy - mom to Sam - 3 yr old - possible PID and

> > Henry - 9 yr old -

> > metabolic 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]

-

They checked Gwynn's LDH because when they had checked

it before it was up?...it is still up? Not sure what

that means it is one of several tests that they have

not advised why they are abnormal. They just suspect

the c-diff...stool culture results are pending.

I have not talked to Kathy...I know she is wonderful

but her son's immuno is my kids current immuno and

obviously I am not happy with the current situation so

I feel like she might not be the right person for me

to vent to. Don't get me wrong, my immuno has been

good to us but I don't want to accept that this is the

best it can be....I want some sort of normalcy and

really think we should trial IVIG.

~~

--- Schulman <dietdoc@...> wrote:

> Hi, .

>

> Did they say why they checked LDH? Did they check

> for c.dif toxin or just suspect it?

>

> Also, have you connected with Kathy Antilla at the

> IDF? I think she is from your area and might have

> ideas.

>

> I'm so sorry to hear that your kids are still going

> through this.

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

> 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]

He said that because they have specific antibody

deficiency and because Gwynn has had alot of viral

issues that the IVIG would not help with viral

infections. Gwynn has had some bacterial things mostly

kidney infections....Aiden however is almost all

bacterial so that should not apply to him....I don't

really understand it at all because originally in his

first note to there ped he said Gwynn may need IVIG?

Not sure what changed his mind other than some of her

numbers are improving...clinical picture is not

though....I think something is missing and he often

tells me he thinks there may be a Tcell defect but

then never investigates...it has been 18 months since

he ran any igg levels etc...and complete work up was

never repeated as far as I know...Not sure why?

Yes I hope we get somewhere! Thanks for the prayers!

~~

--- nancy barnes <nancyb315@...> wrote:

> hi ,

>

> has your dr told you why he does not think ivig

> would help Gwynn or Aiden?

>

> It is no wonder you are feeling burnt out with two

> ill children, and still seeking answers. How

> frustrating. I am pleased to hear that you have a

> referral for Aiden and Gwynn to the Mayo Clinic.

> Hang in there, and I will be praying for a

> appointment and answers soon.

>

> Hugs,

>

>

>

> sarah larson <mom2gwynn@...> wrote:

> Hey guys...I am still here

> just don't chime in as

> often. Life is crazy as usual... to answer

> your

> question...yes some of those tests have been done

> and

> some have not...I don't know off the top of my head

> what was what. Her LDH remains high, her CRP is

> almost

> always slightly elevated. The ANA was normal I

> think?

>

> Both kids have unique issues and both share alot of

> the same things. Aiden was just diagnosed after 3

> courses of abx and a fever lasting more than 6

> weeks

> with a chronic sinus infection,this followed a

> pneumonia which is his 3rd in 6 months ..he is not

> eating well has lost more than 3 pounds in the last

> month and is just miserable...they had to stop the

> latest abx because they are concerned of c-diff

> because he has had diarhea for more than 10

> days...according to our immuno he does not think

> IVIG

> will help my kids although in his first note to our

> ped he said it may be neccesary. Gwynn has had

> several

> nasty viral bugs...complains daily of stomach pain

> and

> joint pain. She has had a cough x's 3 weeks. She

> has

> bowel movements that literally fill the toilet but

> are

> of normal consistency. She occasionally vomits with

> blood in it and sometimes has black tarry stools.

>

> I am very burned out and at my wits end. Yesterday

> the

> doc called in a referral for both kids to be

> evaluated

> at the mayo clinic...we are going to find out

> shortly

> when we will be going there....

>

> ~~

>

> --- nancy barnes <nancyb315@...> wrote:

>

> > ,

> >

> > I think we have had some conversation about this

> > before, but have you taken Gwynn to see a

> pediatric

> > rheumatologist? It could be what is sometimes

> > related to CVID, but it could be ja. Has anyone

> > done labs to test things like her ANA, CRP, RF,

> SED

> > rate, etc?

> >

> > (mom to , 16)

> >

> > sarah larson <mom2gwynn@...> wrote:

>

> > Betsy-

> >

> > Gwynn has complained of leg pain since shortly

> > before

> > she was diagnosed with her pid 3 years ago. It

> gets

> > worse when she is sick to the point that she

> says

> > she

> > can not walk. Recently when she gets sick I can

> > hear

> > all her joints popping and cracking like she is

> a

> > little old lady. wrists, back and ankles are the

> > worst. She cries about it alot and

> > tylenol/ibprofen

> > only seem to take the edge off. She also

> complains

> > of

> > stomach pain almost constantly...so far nobody

> > seems

> > to know what is causing either.

> >

> > ~~

> > --- henrysamsmom98 <bfurler@...>

> wrote:

> >

> > > Do your kids have muscle or joint pain due to

> > PID?

> > > Did IVIG help? Sam

> > > has been complaining of his legs and arms

> hurting

> > on

> > > and off for months

> > > now. He will probably start IVIG fairly soon

> > > (pending the IG levels -

> > > Immunologist forgot to draw them) and I have

> high

> > > hopes he will feel

> > > better.

> > > Thanks!

> > > Betsy - mom to Sam - 3 yr old - possible PID

> and

> > > Henry - 9 yr old -

> > > metabolic 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]

- Macey's on IVIG, has been for 10 years and I promise you " normal " is not

the norm with PID. Please do not put that much store in IVIG infusions.

Clinically stable is what we shoot for around here. It comes from a combination

of oral meds, subq, surgeries every now and then to clear things out, breathing

treatments, better eating and aggressive medical management. IVIG is a bandaid.

On top of that it can sometimes take a patient 6 months to a year to see any

benefit from IgG. So patients do seem to feel better after the first month or

so but I wonder sometimes if that's more a psychosomatic affect. Realizing also

that according to IDF studies diagnosis can average taking 7 years of testing.

Ursula - mom to (14) and Macey (12, CVID)

http://www.primaryimmune.org

http://www.jmfworld.org

http://caringbridge.org/ga/macey/

[Guest guest]

-

Elevated LDH is an indicator of tissue damage so you may want to google it and

inquire at your next appointment. C.dif toxin is a more serious problem for

immunocompromised hosts and, if positive, needs to be treated.

I understand your feelings about wanting to maintain privacy, though Kathy may

have ideas for doctors in your area that might have more time to evaluate and

monitor your children's circumstances...if that is what you need. Also, she

knows what it is like to be at wits end with a chronically sick child (she

talked about this on Discovery Health).

Hang in there.

Re: Update on Gwynn and Aiden (, , , Dale

etc)

-

They checked Gwynn's LDH because when they had checked

it before it was up?...it is still up? Not sure what

that means it is one of several tests that they have

not advised why they are abnormal. They just suspect

the c-diff...stool culture results are pending.

I have not talked to Kathy...I know she is wonderful

but her son's immuno is my kids current immuno and

obviously I am not happy with the current situation so

I feel like she might not be the right person for me

to vent to. Don't get me wrong, my immuno has been

good to us but I don't want to accept that this is the

best it can be....I want some sort of normalcy and

really think we should trial IVIG.

~~

--- Schulman <dietdocsbcglobal (DOT) net> wrote:

> Hi, .

>

> Did they say why they checked LDH? Did they check

> for c.dif toxin or just suspect it?

>

> Also, have you connected with Kathy Antilla at the

> IDF? I think she is from your area and might have

> ideas.

>

> I'm so sorry to hear that your kids are still going

> through this.

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

> 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 -unsubscribe@ groups.

> To search group archives go to:

> http://groups. / group// messages

>

[Guest guest]

Thanks Ursula,

I know we are lucky to have been caught early to start

the diagnosis process....Gwynn was 3, Aiden 15 months

but I am concerned that her docs are comfortable with

the rate of inpatient hospitilizations, 30 missed days

of school, constant stomach pain and now Aiden is

basically always ill. I can only remember a two week

stretch that he had no illness in the last 7 months

and has had a fever for 6 weeks straight...it seems so

strange that they are not offering to trial IVIG...I

know alot of kids are worse of but I am not sure Aiden

knows what it feels like to be not sick. The weight

loss is really scary to me, I mean 3 lbs is alot for a

18 month old and he was only in the 25th percentile

for both height and weight before? Does anyone else's

kids with spec antibody def take IVIG?

--- Ursula Holleman <uahollem1@...> wrote:

> - Macey's on IVIG, has been for 10 years and I

> promise you " normal " is not the norm with PID.

> Please do not put that much store in IVIG infusions.

> Clinically stable is what we shoot for around here.

> It comes from a combination of oral meds, subq,

> surgeries every now and then to clear things out,

> breathing treatments, better eating and aggressive

> medical management. IVIG is a bandaid. On top of

> that it can sometimes take a patient 6 months to a

> year to see any benefit from IgG. So patients do

> seem to feel better after the first month or so but

> I wonder sometimes if that's more a psychosomatic

> affect. Realizing also that according to IDF

> studies diagnosis can average taking 7 years of

> testing.

>

> Ursula - mom to (14) and Macey (12, CVID)

> http://www.primaryimmune.org

> http://www.jmfworld.org

> http://caringbridge.org/ga/macey/

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

> 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]

Thanks everybody...When I say normal....I mean for

life with two PID kids. I just want to know we are

doing everything we possibly can! we should know about

the cdiff next week....I looked up LDH last

night....and will make sure Mayo looks at it.

We should hear from them shortly about when we should

come down.

Thanks for all your support...you are all great as

usual. It is so nice to have a group that is so

knowledeable.

On a side note...My husbands union is deciding tonight

whether to go on strike...should make life interesting

with no income...and if it goes long enough...No

health insurance....grrrr...life is never dull!

Thanks again!

~~

--- Schulman <dietdoc@...> wrote:

> -

>

> Elevated LDH is an indicator of tissue damage so you

> may want to google it and inquire at your next

> appointment. C.dif toxin is a more serious problem

> for immunocompromised hosts and, if positive, needs

> to be treated.

>

> I understand your feelings about wanting to maintain

> privacy, though Kathy may have ideas for doctors in

> your area that might have more time to evaluate and

> monitor your children's circumstances...if that is

> what you need. Also, she knows what it is like to

> be at wits end with a chronically sick child (she

> talked about this on Discovery Health).

>

> Hang in there.

>

>

> Re: Update on Gwynn and Aiden

> (, , , Dale etc)

>

> -

> They checked Gwynn's LDH because when they had

> checked

> it before it was up?...it is still up? Not sure what

> that means it is one of several tests that they have

> not advised why they are abnormal. They just suspect

> the c-diff...stool culture results are pending.

>

> I have not talked to Kathy...I know she is wonderful

> but her son's immuno is my kids current immuno and

> obviously I am not happy with the current situation

> so

> I feel like she might not be the right person for me

> to vent to. Don't get me wrong, my immuno has been

> good to us but I don't want to accept that this is

> the

> best it can be....I want some sort of normalcy and

> really think we should trial IVIG.

> ~~

>

> --- Schulman <dietdocsbcglobal (DOT) net> wrote:

>

> > Hi, .

> >

> > Did they say why they checked LDH? Did they check

> > for c.dif toxin or just suspect it?

> >

> > Also, have you connected with Kathy Antilla at the

> > IDF? I think she is from your area and might have

> > ideas.

> >

> > I'm so sorry to hear that your kids are still

> going

> > through this.

> >

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

> >

> > 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 -unsubscribe@ groups.

> > To search group archives go to:

> > http://groups. / group// messages

> >

[Guest guest]

,

Don't have much to offer about Mayo....

Who is referring??? your ped or Dr. S????

Wish I could help.

my work email is lschatz@...

Email there if you need me. I need to get some of my class work done, things

aren't great here. has a new cold sore coming and tomorrow will be our

last SCIG while we trial off...cold symptoms coming..

Warren is having more pain again, now in a different spot....I'm frustrated

with work and the issues there...

Hang in there. I'll try to give you a ring sometime this week. Feel free to

call my cell and I'll call you back....

Quoting sarah larson <mom2gwynn@...>:

> Hey guys...I am still here just don't chime in as

> often. Life is crazy as usual... to answer your

> question...yes some of those tests have been done and

> some have not...I don't know off the top of my head

> what was what. Her LDH remains high, her CRP is almost

> always slightly elevated. The ANA was normal I think?

>

> Both kids have unique issues and both share alot of

> the same things. Aiden was just diagnosed after 3

> courses of abx and a fever lasting more than 6 weeks

> with a chronic sinus infection,this followed a

> pneumonia which is his 3rd in 6 months ..he is not

> eating well has lost more than 3 pounds in the last

> month and is just miserable...they had to stop the

> latest abx because they are concerned of c-diff

> because he has had diarhea for more than 10

> days...according to our immuno he does not think IVIG

> will help my kids although in his first note to our

> ped he said it may be neccesary. Gwynn has had several

> nasty viral bugs...complains daily of stomach pain and

> joint pain. She has had a cough x's 3 weeks. She has

> bowel movements that literally fill the toilet but are

> of normal consistency. She occasionally vomits with

> blood in it and sometimes has black tarry stools.

>

> I am very burned out and at my wits end. Yesterday the

> doc called in a referral for both kids to be evaluated

> at the mayo clinic...we are going to find out shortly

> when we will be going there....

>

> ~~

>

> --- nancy barnes <nancyb315@...> wrote:

>

> > ,

> >

> > I think we have had some conversation about this

> > before, but have you taken Gwynn to see a pediatric

> > rheumatologist? It could be what is sometimes

> > related to CVID, but it could be ja. Has anyone

> > done labs to test things like her ANA, CRP, RF, SED

> > rate, etc?

> >

> > (mom to , 16)

> >

> > sarah larson <mom2gwynn@...> wrote:

> > Betsy-

> >

> > Gwynn has complained of leg pain since shortly

> > before

> > she was diagnosed with her pid 3 years ago. It gets

> > worse when she is sick to the point that she says

> > she

> > can not walk. Recently when she gets sick I can

> > hear

> > all her joints popping and cracking like she is a

> > little old lady. wrists, back and ankles are the

> > worst. She cries about it alot and

> > tylenol/ibprofen

> > only seem to take the edge off. She also complains

> > of

> > stomach pain almost constantly...so far nobody

> > seems

> > to know what is causing either.

> >

> > ~~

> > --- henrysamsmom98 <bfurler@...> wrote:

> >

> > > Do your kids have muscle or joint pain due to

> > PID?

> > > Did IVIG help? Sam

> > > has been complaining of his legs and arms hurting

> > on

> > > and off for months

> > > now. He will probably start IVIG fairly soon

> > > (pending the IG levels -

> > > Immunologist forgot to draw them) and I have high

> > > hopes he will feel

> > > better.

> > > Thanks!

> > > Betsy - mom to Sam - 3 yr old - possible PID and

> > > Henry - 9 yr old -

> > > metabolic 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]

, Don't let that stop you...Remember I had the same immuno and she knows

that. As her role, she is very good about understanding that who works for

one, may not work for another...They started with him long ago. Call her as

she may have some info

I'll email you another address off list....

Quoting sarah larson <mom2gwynn@...>:

> -

> They checked Gwynn's LDH because when they had checked

> it before it was up?...it is still up? Not sure what

> that means it is one of several tests that they have

> not advised why they are abnormal. They just suspect

> the c-diff...stool culture results are pending.

>

> I have not talked to Kathy...I know she is wonderful

> but her son's immuno is my kids current immuno and

> obviously I am not happy with the current situation so

> I feel like she might not be the right person for me

> to vent to. Don't get me wrong, my immuno has been

> good to us but I don't want to accept that this is the

> best it can be....I want some sort of normalcy and

> really think we should trial IVIG.

> ~~

>

> --- Schulman <dietdoc@...> wrote:

>

> > Hi, .

> >

> > Did they say why they checked LDH? Did they check

> > for c.dif toxin or just suspect it?

> >

> > Also, have you connected with Kathy Antilla at the

> > IDF? I think she is from your area and might have

> > ideas.

> >

> > I'm so sorry to hear that your kids are still going

> > through this.

> >

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

> >

> > 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]

The Ped is the referring doc...dr s would probably be

annoyed that we were going.

I am sorry to hear about not feeling well and I

know you are really nervous about the trial off. Hope

things go well. Hope Warren feels better soon.

~~

--- lmschatz@... wrote:

> ,

>

> Don't have much to offer about Mayo....

>

> Who is referring??? your ped or Dr. S????

>

> Wish I could help.

> my work email is lschatz@...

>

> Email there if you need me. I need to get some of

> my class work done, things

> aren't great here. has a new cold sore coming

> and tomorrow will be our

> last SCIG while we trial off...cold symptoms

> coming..

>

> Warren is having more pain again, now in a different

> spot....I'm frustrated

> with work and the issues there...

>

> Hang in there. I'll try to give you a ring sometime

> this week. Feel free to

> call my cell and I'll call you back....

>

>

> Quoting sarah larson <mom2gwynn@...>:

>

> > Hey guys...I am still here just don't chime in as

> > often. Life is crazy as usual... to answer

> your

> > question...yes some of those tests have been done

> and

> > some have not...I don't know off the top of my

> head

> > what was what. Her LDH remains high, her CRP is

> almost

> > always slightly elevated. The ANA was normal I

> think?

> >

> > Both kids have unique issues and both share alot

> of

> > the same things. Aiden was just diagnosed after 3

> > courses of abx and a fever lasting more than 6

> weeks

> > with a chronic sinus infection,this followed a

> > pneumonia which is his 3rd in 6 months ..he is not

> > eating well has lost more than 3 pounds in the

> last

> > month and is just miserable...they had to stop the

> > latest abx because they are concerned of c-diff

> > because he has had diarhea for more than 10

> > days...according to our immuno he does not think

> IVIG

> > will help my kids although in his first note to

> our

> > ped he said it may be neccesary. Gwynn has had

> several

> > nasty viral bugs...complains daily of stomach pain

> and

> > joint pain. She has had a cough x's 3 weeks. She

> has

> > bowel movements that literally fill the toilet but

> are

> > of normal consistency. She occasionally vomits

> with

> > blood in it and sometimes has black tarry stools.

> >

> > I am very burned out and at my wits end. Yesterday

> the

> > doc called in a referral for both kids to be

> evaluated

> > at the mayo clinic...we are going to find out

> shortly

> > when we will be going there....

> >

> > ~~

> >

> > --- nancy barnes <nancyb315@...> wrote:

> >

> > > ,

> > >

> > > I think we have had some conversation about this

> > > before, but have you taken Gwynn to see a

> pediatric

> > > rheumatologist? It could be what is sometimes

> > > related to CVID, but it could be ja. Has anyone

> > > done labs to test things like her ANA, CRP, RF,

> SED

> > > rate, etc?

> > >

> > > (mom to , 16)

> > >

> > > sarah larson <mom2gwynn@...> wrote:

>

> > > Betsy-

> > >

> > > Gwynn has complained of leg pain since shortly

> > > before

> > > she was diagnosed with her pid 3 years ago. It

> gets

> > > worse when she is sick to the point that she

> says

> > > she

> > > can not walk. Recently when she gets sick I can

> > > hear

> > > all her joints popping and cracking like she is

> a

> > > little old lady. wrists, back and ankles are

> the

> > > worst. She cries about it alot and

> > > tylenol/ibprofen

> > > only seem to take the edge off. She also

> complains

> > > of

> > > stomach pain almost constantly...so far nobody

> > > seems

> > > to know what is causing either.

> > >

> > > ~~

> > > --- henrysamsmom98 <bfurler@...>

> wrote:

> > >

> > > > Do your kids have muscle or joint pain due to

> > > PID?

> > > > Did IVIG help? Sam

> > > > has been complaining of his legs and arms

> hurting

> > > on

> > > > and off for months

> > > > now. He will probably start IVIG fairly soon

> > > > (pending the IG levels -

> > > > Immunologist forgot to draw them) and I have

> high

> > > > hopes he will feel

> > > > better.

> > > > Thanks!

> > > > Betsy - mom to Sam - 3 yr old - possible PID

> and

> > > > Henry - 9 yr old -

> > > > metabolic 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

>

> > > >