Re: hi- I'm a new member

[Guest guest]

, I couldn't help but hear your frustrations. My son is 4 and my 10 year

old is in the process of diagnosis. I am 36 and also cvid. It is a tough road

but hang in there. We have all had those days. I receive treatment and was

diagnosed only in December. My four year old was diagnosed at 2 and my ten year

old last month, possible. Some of his blood tests came back low. So we won't

know until further tests are done. Welcome. I wish you the best of luck and

hang onm I am sure you will get alot of replies. Dawn cvid mother to

cvid ect. and cvid? asthma, adhd anxiety

<nancyb315@...> wrote: hi everyone,

I am a new member. I am the mother of a 15 year old daughter with

CVID (diagnosed 6 months ago) allergies and chronic daily migraines.

Are there any other parents with teenagers out there that wouldn't

mind sharing some experiences, successes, etc? Could use some

encouragement right now.

Anyone else is welcome also.

Thanks-

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]

, I couldn't help but hear your frustrations. My son is 4 and my 10 year

old is in the process of diagnosis. I am 36 and also cvid. It is a tough road

but hang in there. We have all had those days. I receive treatment and was

diagnosed only in December. My four year old was diagnosed at 2 and my ten year

old last month, possible. Some of his blood tests came back low. So we won't

know until further tests are done. Welcome. I wish you the best of luck and

hang onm I am sure you will get alot of replies. Dawn cvid mother to

cvid ect. and cvid? asthma, adhd anxiety

<nancyb315@...> wrote: hi everyone,

I am a new member. I am the mother of a 15 year old daughter with

CVID (diagnosed 6 months ago) allergies and chronic daily migraines.

Are there any other parents with teenagers out there that wouldn't

mind sharing some experiences, successes, etc? Could use some

encouragement right now.

Anyone else is welcome also.

Thanks-

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]

, I couldn't help but hear your frustrations. My son is 4 and my 10 year

old is in the process of diagnosis. I am 36 and also cvid. It is a tough road

but hang in there. We have all had those days. I receive treatment and was

diagnosed only in December. My four year old was diagnosed at 2 and my ten year

old last month, possible. Some of his blood tests came back low. So we won't

know until further tests are done. Welcome. I wish you the best of luck and

hang onm I am sure you will get alot of replies. Dawn cvid mother to

cvid ect. and cvid? asthma, adhd anxiety

<nancyb315@...> wrote: hi everyone,

I am a new member. I am the mother of a 15 year old daughter with

CVID (diagnosed 6 months ago) allergies and chronic daily migraines.

Are there any other parents with teenagers out there that wouldn't

mind sharing some experiences, successes, etc? Could use some

encouragement right now.

Anyone else is welcome also.

Thanks-

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]

Dawn,

thanks for your encouragement.

Our neurologist just suggested I be tested... I think my daughter would be doing

better but got meningitis in Feb, increasing migraines to daily...also

unexplained leg pain persisting.

Anyway, thanks.

Dawn Souza <nwd30@...> wrote: , I couldn't help but hear your

frustrations. My son is 4 and my 10 year old is in the process of diagnosis. I

am 36 and also cvid. It is a tough road but hang in there. We have all had

those days. I receive treatment and was diagnosed only in December. My four

year old was diagnosed at 2 and my ten year old last month, possible. Some of

his blood tests came back low. So we won't know until further tests are done.

Welcome. I wish you the best of luck and hang onm I am sure you will get alot

of replies. Dawn cvid mother to cvid ect. and cvid? asthma,

adhd anxiety

<nancyb315@...> wrote: hi everyone,

I am a new member. I am the mother of a 15 year old daughter with

CVID (diagnosed 6 months ago) allergies and chronic daily migraines.

Are there any other parents with teenagers out there that wouldn't

mind sharing some experiences, successes, etc? Could use some

encouragement right now.

Anyone else is welcome also.

Thanks-

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]

Hi ,

Welcome...I have a 16 year old son with CVID. He was diagnosed in 2004.

You are welcome to email me off group anytime!! Teenagers have a lot going on

without being sick. We are doing homebound schooling (teacher comes 2 x week

for 1 hour), plus he goes to school whenever he feels good enough to. We

also have a 504 in place to protect his rights.

Email me...

Pam

Tim - CVID age 16

[Guest guest]

Welcome, ! I don't have teenagers yet-My oldest turned 12 this past

Feb, so it won't be LONG! I have two boys with Shwachman-Diamond Syndrome.

You will find lots of information and caring folks here on this list. I

just wanted to welcome you!

~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

Sent: Saturday, May 06, 2006 10:37 AM

Subject: hi- I'm a new member

hi everyone,

I am a new member. I am the mother of a 15 year old daughter with

CVID (diagnosed 6 months ago) allergies and chronic daily migraines.

Are there any other parents with teenagers out there that wouldn't

mind sharing some experiences, successes, etc? Could use some

encouragement right now.

Anyone else is welcome also.

Thanks-

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]

, welcome to the group. There's so much to figure out when you've

got a new diagnosis! I hope we can help you sort out your questions

and enable you to communicate well with your doctors.

Is your daughter on IgG replacement?

Thought it might be just a little bit of encouragement to share my

daughter's story in a nut shell.

She was perfectly healthy until age 11 and then went down suddenly

having trouble digesting everything, chronic sinus infections, ear

infections, eye infections, skin infections, migraines, body aches,

severe fatigue, you name it. Finally got her diagnosed after 2

excruciating years. Then started IVIG at age 13 (almost 14). The IVIG

stopped the infections very quickly, but it took her a while before she

got her strength back. At the end of 1 year of treatment, we were

seeing a different kid! She was back into cardio-kickboxing, etc. She

managed to graduate with her peers (even though she had missed 2 full

years of school during the un-diagnosed stage). She did community

theatre and took some college classes during her senior year. She was

always on the go. She went to college -- got her IVIG in the dorm from

a home-health care nurse. Had a blast. Partied and pursued her dream

of becoming an artist. She has recently married and is living in

Florida (against her parent's wishes!) but -- apparently doing well.

I say all that just to remind you that while CVID is a terrible thing to

have -- it will change a lot of things about your life -- it doesn't

mean that you have to give up your dreams. Katy had to make adjustments

in order to be an artist. She could throw pottery on the wheel because

she kept getting skin infections from the rough clay -- so --- she

arranged other projects to meet her goals and the professors applauded

her all the way. She just made adjustments for what she needed.

We were so devasted during those 2 years of not having a diagnosis and

Katy lost a lot of her dreams and goals. Getting the diagnosis and

starting treatment got her back to pursuing her dreams.

I hope that your daughter will also get back on track with her dreams

and start to feel stronger and better and able to do everything she

desires! Katy continued to improve her health over the next 2-3 years

-- then leveled off. When she switched from IV to Sub-Q for her IgG

replacement, she also saw improvement. So, just keep looking forward

and working to resolve the problems. Sounds like your daughter needs

resolution to those nasty migraines. We were unable to find a

neurologist who could help Katy's but, they went away after about a year

of IVIG. Now, she only has a migraine about once a year (usually close

to finals!).

I hope that you'll feel comfortable here -- ask your questions. If no

one answers -- ask them again.

I do want to encourage you to order the Patient and Family Handbook from

IDF. It's free to you by simply calling 1-800-296-4433.

May God bless you on your journey,

In His service,

dale

[Guest guest]

hi Dale,

thank you for sharing Katy's story with me. It does offer encouragement. I am

confused though...Did you say she missed 2 full years of school during her

undiagnosed stage? Is that when you began homeschooling? As I may have said,

has now been out of school 3 months. I think it is going to be most

difficult for her to make the adjustments to her hopes and dreams...she is still

in denial and avoids talking about it. She has been a competitive swimmer and

water polo player with hopes of a polo scholarship - and now it has been 3

months out of the pool. She always has high aspirations and great determination

though she seems to have lost a lot of hope as the unexplained leg pain and

low-grade temps drag on. (Were Katy's aches you mentioned more generalized body

aches?) I have high expectations for her appt at UCLA next week.

Because of her sports and tech program, returning to school is important to her.

I just want to see her back in the water again...her identity has been " water

polo player "

Thank you for mentioning the IDF booklet - I downloaded the booklet and copied

many of the pertinent pages for the principal (until I can get her one) and will

drop it by for her to read prior to our meeting.

is on IVIG therapy - she started in January and receives it every 3 wks.

Extreme fatigue and increased headache are her side effects. A member suggested

asking them to adjust her rate of infusion? So much to learn! You mentioned

her headaches...actually, they are significantly improved - she had 4 days in

the hospital on DHE IV (it acts on the hypothalamus) and was headache free 2

whole weeks (after being on meds like fentanyl, delotid, percoset, etc) and now

takes a prophalatic, excedrin migraine and on the worst days a vicodin. She

still has headaches every day but not totally disabling at this time.

I don't know where you live, but it sounds like Katy being in Florida is too far

away! I have two adult children in addition to amanda and feel fortunate to

have them close by. Occasionally they mention moving out of state as Orange

County, CA has become very costly (especially for young first time buyers) and I

just pray they don't...

I think it's great that you take time to encourage and inform others even when

Katy is no longer at home.

Thanks,

mom of amanda, 15, CVID, chronic migraines

Dale Weatherford <dale@...> wrote: , welcome to the group.

There's so much to figure out when you've

got a new diagnosis! I hope we can help you sort out your questions

and enable you to communicate well with your doctors.

Is your daughter on IgG replacement?

Thought it might be just a little bit of encouragement to share my

daughter's story in a nut shell.

She was perfectly healthy until age 11 and then went down suddenly

having trouble digesting everything, chronic sinus infections, ear

infections, eye infections, skin infections, migraines, body aches,

severe fatigue, you name it. Finally got her diagnosed after 2

excruciating years. Then started IVIG at age 13 (almost 14). The IVIG

stopped the infections very quickly, but it took her a while before she

got her strength back. At the end of 1 year of treatment, we were

seeing a different kid! She was back into cardio-kickboxing, etc. She

managed to graduate with her peers (even though she had missed 2 full

years of school during the un-diagnosed stage). She did community

theatre and took some college classes during her senior year. She was

always on the go. She went to college -- got her IVIG in the dorm from

a home-health care nurse. Had a blast. Partied and pursued her dream

of becoming an artist. She has recently married and is living in

Florida (against her parent's wishes!) but -- apparently doing well.

I say all that just to remind you that while CVID is a terrible thing to

have -- it will change a lot of things about your life -- it doesn't

mean that you have to give up your dreams. Katy had to make adjustments

in order to be an artist. She could throw pottery on the wheel because

she kept getting skin infections from the rough clay -- so --- she

arranged other projects to meet her goals and the professors applauded

her all the way. She just made adjustments for what she needed.

We were so devasted during those 2 years of not having a diagnosis and

Katy lost a lot of her dreams and goals. Getting the diagnosis and

starting treatment got her back to pursuing her dreams.

I hope that your daughter will also get back on track with her dreams

and start to feel stronger and better and able to do everything she

desires! Katy continued to improve her health over the next 2-3 years

-- then leveled off. When she switched from IV to Sub-Q for her IgG

replacement, she also saw improvement. So, just keep looking forward

and working to resolve the problems. Sounds like your daughter needs

resolution to those nasty migraines. We were unable to find a

neurologist who could help Katy's but, they went away after about a year

of IVIG. Now, she only has a migraine about once a year (usually close

to finals!).

I hope that you'll feel comfortable here -- ask your questions. If no

one answers -- ask them again.

I do want to encourage you to order the Patient and Family Handbook from

IDF. It's free to you by simply calling 1-800-296-4433.

May God bless you on your journey,

In His service,

dale

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]

Hi, !

I am the mom to a 4 year old CVIDer (also had leg/joint pain) who we school at

home right now and she is doing well. She gets treatment at UCLA. We actually

traveled across the country to get her care -- long story but not uncommon in

our group.

I am swamped this week but will read all of your posts. I wish you the best

and hope that your daughter get's the care she deserves. The infusion nurses

are wonderful at UCLA -- and a couple of can actually know how to do

subcutaneous infusions (right under the skin -- no vein needed). The research

lab is growing and they do really obscure immune function tests -- which, for my

daughter, are " routine " tests. = )

Best,

mom to CVIDer

[Guest guest]

nancy barnes wrote:

I am confused though...Did you say she missed 2 full years of school

We were homeschooling already when Katy became ill. But Katy was not

" out of school " because of her CVID. She was out of school because she

was not being treated properly. She had major gut problems that led her

pediatrician to tell me to eliminate all her lactose -- we did that.

Then it was all her wheat -- we did that. Then it was all her fructose

-- we did that. We kept eliminating until she was literally starving to

death. But anytime we would try to reintroduce her foods -- she would

" explode " with severe pain and diarrhea and vomitting and swelling that

was visible. It was a terrible time for us. The gastroenterologists

were of no help because even though they could see extensive

" inflammation " that couldn't determine a cause. So, she was actually

starving to death because of my mis-guided attempts at helping her feel

better. Finally, a gastroenterologist told us that she had to eat even

if it made her gut worse because we were doing more harm than good.

Soon after that we finally got a diagnosis and realized that he was

right -- it wasn't a particular food -- it was that her gut was

incredibly inflamed. A better diet would have been to provide good

nutrition for her but in easy to digest forms -- maybe even all liquid

-- but not starvation.

So, because she was not eating -- she experienced more fatigue, more

lack of mental concentration, etc. than she should have. It was NOT

from the CVID -- it was from starvation. She had headaches so severe

she could not read -- I read everything outloud for her -- but the next

day she had no recall of what I read. It was extremely frustrating

time. How much of this was CVID, how much was starvation -- it's hard

to separate out.

As I may have said, has now been out of school 3 months.

Is your school providing tutors to help her keep up?

I think it is going to be most difficult for her to make the adjustments

to her hopes and dreams...she is still in denial and avoids talking

about it. She has been a competitive swimmer and water polo player with

hopes of a polo scholarship - and now it has been 3 months out of the

pool. She always has high aspirations and great determination though

she seems to have lost a lot of hope as the unexplained leg pain and

low-grade temps drag on. (Were Katy's aches you mentioned more

generalized body aches?) I have high expectations for her appt at UCLA

next week.

>

> Because of her sports and tech program, returning to school is important to

her.

>

> I just want to see her back in the water again...her identity has been " water

polo player "

>

There are adjustments that will have to be made -- BUT and I want you

to hear me clearly. There is no reason to assume that she will have to

have a complete life change. Katy ended up dropping out of gymnastics.

She had been a competitive gymnast and was one of the top performers

in her age group -- until she got sick. Then because of the 2 years of

mis- or un- diagnosis -- she lost too much muscle to continue. She

could have started all over - but she had lost her identity as a gymnast

and lost all the friends that had continued in gymnastics. She coped

well and decided that since it wasn't a " major " dream in her life -- she

would now make time for other interests. She focused on dance, theatre,

voice lessons, and her own art instead of sports. She took

cardio-kickboxing for fun and recreation and decided to steer clear of

gymnastics.

But a friend of mine who was diagnosed with CVID decided that gymnastics

was an important dream of his. So, after diagnosis he dropped his other

sports to make sure he had enough energy to pursue his love. As far as

I know he's still pursuing that. Some families homeschool so that the

child can pursue their dreams. Katy found that she had less energy than

her peers as far as she couldn't do several nights in a row -- but, she

got back all her body strength. She's a very, very strong girl! I know

another boy who just got accepted to college for his soccer -- he's also

diagnosed CVID. Another girl I know is a competitive ice skater. So

--- it can be done. You may just have to make allowances for her to

catch up on sleep after a big game. Or she may have to not celebrate

quite as long and loudly as the other girls. Sleep will be vitally

important!!!!

I highly recommend that she talk with a personal trainer about keeping

her muscle strength up. If she's not ready for polo -- she still ought

to be in a therapy pool doing laps. Whatever it takes for her to feel

that she's working toward her dreams. Lots of competitive sports

players deal with diabetes, asthma and chronic fatigue syndrome -- but

it takes a lot of committment to do it.

Extreme fatigue and increased headache are her side effects.

I would also talk with your doctor about possibly changing brands of

product. There are several brands of IgG replacement on the market.

Its been shown that there is a need for multiple brands because

different people react differently to each one. So, if after 3 or 4

months you are still getting headaches and fatigue -- I would suggest

that your doctor needs to look into a different product. I don't know

which product you are using, but generally after 3 months you should

begin to see improvements -- not continual side effects.

Some questions I would like to ask are: Is she IgA deficient? If she

has 0 IgA, she could actually be getting a reaction that is pretty

serious. So -- please let me know if her IgA is undetectable. That

could be another set of problems.

But, each IgG replacement product (gammaglobulin) has a different pH,

different saline content, different sugar content, different

concentration, different osmolality, etc. A lot of patients report

doing better on one product than another. That report can be found by

your doctor in a publication called Clinical Focus on Primary Immune

Deficiencies Issue 11 of October 2003, published by IDF. He can get a

copy from the IDF or probably find it on-line.

Katy started out on one product and found her headaches were increasing

and she just felt rotten. After about 6 months her nurse recommended

changing brands -- our doctor had never heard of it -- but agreed. Katy

noticed an immediate improvement with the new brand. So..... I assumed

that Katy had been given a " bad " brand -- right? But soon there was a

lady on this group who posted that her daughter was having trouble with

my Katy's favorite brand. Guess what she switched to? Yup! The one

that had given Katy headaches -- and she is great on it. So..... it's

not that there's good brands and bad brands -- it's that you've got to

find the one that works for you.

A member suggested asking them to adjust her rate of infusion?

If you run the infusion too fast (and each person is different) you will

get an increased headache for up to 48 hours. After that -- it's

probably not the infusion rate.

> I don't know where you live,

I'm in Northern California -- close to San Francisco.

I'm glad to help. I've heard a lot of really good things about UCLA

Immunology program and have met some of the doctors there. They seem

really knowledgable. Hopefully, they can get you on the right track

and get her back in the pool and pursuing her dreams!

In His service,

dale

[Guest guest]

Dale,

thank you for your experienced input... met today with VP at my daughter's high

school - I was led to believe it would just be VP, my husband and I. My husband

had last minute speaking engagement so I brought a friend to help take notes (I

have my 6wk granddaughter in tow)....and more so for moral support...good

thing...she showed up with district psychologist and SIT coordinator (deals with

504's, IEP's, etc).

They told me there is no way amanda can get caught up (true) before school is

out and since she really only attended about 2 weeks before meningitis hit, they

" cannot " let her complete work on her own like last year (last year she was able

to come to a few classes now and then...) They wanted to put her in the

'alternative' h.s. for summer but they don't have anything beyond alg 1,

biology, basic english, etc. They want her to take the basic english (she is an

accelerated) through them just to give her credits, take second half of her Alg

2 second session summer school if she is well enough by then, then repeat

chemistry and spanish 2 next year...she completed the first semester with

good grades already but since they don't offer second sem til spring, they

expect her to just bide her time repeating coursework, not to mention this

would automatically preclude her from her tech program because her senior year

she would have to make up what she couldn't take her

junior year because she was repeating what she already completed. It's a mess

and I feel extremely angry that they let it come to this...they were remiss

by not offering a 504 OHI as soon as I told them she had a chronic illness

and/or meningitis, etc. etc. But now it is who is suffering.

I am trying to find info on school accountability in similar matters in

California but can't find anything. Debating writing district, seeking legal

consult...?? Meanwhile, amanda just cried and cried...

There are adjustments that will have to be made -- BUT and I want you

to hear me clearly. There is no reason to assume that she will have to

have a complete life change. Katy ended up dropping out of gymnastics.

I think it is all just too much for her to 'digest' at once...it's not as if she

is even feeling better yet. I know she will come out stronger on the other end,

and that God apparently has a plan other than what we had planned....it is just

painful watching her in both physical and emotional pain right now.

I highly recommend that she talk with a personal trainer about keeping

her muscle strength up. If she's not ready for polo -- she still ought

to be in a therapy pool doing laps. Whatever it takes for her to feel

that she's working toward her dreams. Lots of competitive sports

players deal with diabetes, asthma and chronic fatigue syndrome -- but

it takes a lot of committment to do it.

She had a great physical therapist group when she had her tendonitis from

competitive swim (they have worked with olympic swimmers..Lenny Krazelberg,

Katlyn Sandeno..) and the ortho gave her a prescrip for pt just to minimize more

muscle loss so I think I will call them...they are a bit more of a drive but

worth it.

Some questions I would like to ask are: Is she IgA deficient? If she

has 0 IgA, she could actually be getting a reaction that is pretty

serious. So -- please let me know if her IgA is undetectable. That

could be another set of problems.

Sadly, I don't know. The infectious disease dr wanted her tested so it is on

the top of my list of questions for her immuno. I will phone one of the docs

and ask.

Tomorrow she has her head mri w/contrast.

What city are you in up there? My husband is from San Bruno, we lived in

Millbrae for a year when my older kids were babies, my sister-in-law is in

Rhonert Park (by Santa ) and the rest of his family is in other parts of

northern cal so we are very familiar and visit one to two times a year.

Anyway, thanks for your encouragement. I am trying to encourage amanda.

nancy

mom to amanda, cvid, chronic daily migraines

Dale Weatherford <dale@...> wrote: nancy barnes wrote:

I am confused though...Did you say she missed 2 full years of school

We were homeschooling already when Katy became ill. But Katy was not

" out of school " because of her CVID. She was out of school because she

was not being treated properly. She had major gut problems that led her

pediatrician to tell me to eliminate all her lactose -- we did that.

Then it was all her wheat -- we did that. Then it was all her fructose

-- we did that. We kept eliminating until she was literally starving to

death. But anytime we would try to reintroduce her foods -- she would

" explode " with severe pain and diarrhea and vomitting and swelling that

was visible. It was a terrible time for us. The gastroenterologists

were of no help because even though they could see extensive

" inflammation " that couldn't determine a cause. So, she was actually

starving to death because of my mis-guided attempts at helping her feel

better. Finally, a gastroenterologist told us that she had to eat even

if it made her gut worse because we were doing more harm than good.

Soon after that we finally got a diagnosis and realized that he was

right -- it wasn't a particular food -- it was that her gut was

incredibly inflamed. A better diet would have been to provide good

nutrition for her but in easy to digest forms -- maybe even all liquid

-- but not starvation.

So, because she was not eating -- she experienced more fatigue, more

lack of mental concentration, etc. than she should have. It was NOT

from the CVID -- it was from starvation. She had headaches so severe

she could not read -- I read everything outloud for her -- but the next

day she had no recall of what I read. It was extremely frustrating

time. How much of this was CVID, how much was starvation -- it's hard

to separate out.

As I may have said, has now been out of school 3 months.

Is your school providing tutors to help her keep up?

I think it is going to be most difficult for her to make the adjustments

to her hopes and dreams...she is still in denial and avoids talking

about it. She has been a competitive swimmer and water polo player with

hopes of a polo scholarship - and now it has been 3 months out of the

pool. She always has high aspirations and great determination though

she seems to have lost a lot of hope as the unexplained leg pain and

low-grade temps drag on. (Were Katy's aches you mentioned more

generalized body aches?) I have high expectations for her appt at UCLA

next week.

>

> Because of her sports and tech program, returning to school is important to

her.

>

> I just want to see her back in the water again...her identity has been " water

polo player "

>

There are adjustments that will have to be made -- BUT and I want you

to hear me clearly. There is no reason to assume that she will have to

have a complete life change. Katy ended up dropping out of gymnastics.

She had been a competitive gymnast and was one of the top performers

in her age group -- until she got sick. Then because of the 2 years of

mis- or un- diagnosis -- she lost too much muscle to continue. She

could have started all over - but she had lost her identity as a gymnast

and lost all the friends that had continued in gymnastics. She coped

well and decided that since it wasn't a " major " dream in her life -- she

would now make time for other interests. She focused on dance, theatre,

voice lessons, and her own art instead of sports. She took

cardio-kickboxing for fun and recreation and decided to steer clear of

gymnastics.

But a friend of mine who was diagnosed with CVID decided that gymnastics

was an important dream of his. So, after diagnosis he dropped his other

sports to make sure he had enough energy to pursue his love. As far as

I know he's still pursuing that. Some families homeschool so that the

child can pursue their dreams. Katy found that she had less energy than

her peers as far as she couldn't do several nights in a row -- but, she

got back all her body strength. She's a very, very strong girl! I know

another boy who just got accepted to college for his soccer -- he's also

diagnosed CVID. Another girl I know is a competitive ice skater. So

--- it can be done. You may just have to make allowances for her to

catch up on sleep after a big game. Or she may have to not celebrate

quite as long and loudly as the other girls. Sleep will be vitally

important!!!!

I highly recommend that she talk with a personal trainer about keeping

her muscle strength up. If she's not ready for polo -- she still ought

to be in a therapy pool doing laps. Whatever it takes for her to feel

that she's working toward her dreams. Lots of competitive sports

players deal with diabetes, asthma and chronic fatigue syndrome -- but

it takes a lot of committment to do it.

Extreme fatigue and increased headache are her side effects.

I would also talk with your doctor about possibly changing brands of

product. There are several brands of IgG replacement on the market.

Its been shown that there is a need for multiple brands because

different people react differently to each one. So, if after 3 or 4

months you are still getting headaches and fatigue -- I would suggest

that your doctor needs to look into a different product. I don't know

which product you are using, but generally after 3 months you should

begin to see improvements -- not continual side effects.

Some questions I would like to ask are: Is she IgA deficient? If she

has 0 IgA, she could actually be getting a reaction that is pretty

serious. So -- please let me know if her IgA is undetectable. That

could be another set of problems.

But, each IgG replacement product (gammaglobulin) has a different pH,

different saline content, different sugar content, different

concentration, different osmolality, etc. A lot of patients report

doing better on one product than another. That report can be found by

your doctor in a publication called Clinical Focus on Primary Immune

Deficiencies Issue 11 of October 2003, published by IDF. He can get a

copy from the IDF or probably find it on-line.

Katy started out on one product and found her headaches were increasing

and she just felt rotten. After about 6 months her nurse recommended

changing brands -- our doctor had never heard of it -- but agreed. Katy

noticed an immediate improvement with the new brand. So..... I assumed

that Katy had been given a " bad " brand -- right? But soon there was a

lady on this group who posted that her daughter was having trouble with

my Katy's favorite brand. Guess what she switched to? Yup! The one

that had given Katy headaches -- and she is great on it. So..... it's

not that there's good brands and bad brands -- it's that you've got to

find the one that works for you.

A member suggested asking them to adjust her rate of infusion?

If you run the infusion too fast (and each person is different) you will

get an increased headache for up to 48 hours. After that -- it's

probably not the infusion rate.

> I don't know where you live,

I'm in Northern California -- close to San Francisco.

I'm glad to help. I've heard a lot of really good things about UCLA

Immunology program and have met some of the doctors there. They seem

really knowledgable. Hopefully, they can get you on the right track

and get her back in the pool and pursuing her dreams!

In His service,

dale

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>

> I am trying to find info on school accountability in similar matters in

California but can't find anything. Debating writing district, seeking legal

consult...?? Meanwhile, amanda just cried and cried...

Don't know anything about the school system since we homeschooled. But

I would certainly look into some kind of correspondence course, etc. to

help her catch up if she's determined to catch up. If it's okay for her

to lose a year -- then that's fine -- gives her more time to heal before

heading off to college or tech school or whatever she wants. Also some

local junior colleges will offer classes for high school students if

there's one nearby. My son attended junior college from the time he

was 13 just picking up classes he wanted and/or needed (that I didn't

want to teach!). I would certainly be asking how to get her where she

needs to go -- and where she wants to go as far as her education!

She had a great physical therapist group when she had her tendonitis

from competitive swim (they have worked with olympic swimmers..Lenny

Krazelberg, Katlyn Sandeno..) and the ortho gave her a prescrip for pt

just to minimize more muscle loss so I think I will call them...they are

a bit more of a drive but worth it.

That would be a great start to her recuperation and may help with the

coping, too. Exercise is a great stress reliever and helps you sort out

emotions.

> What city are you in up there?

We're in Mountain View. Let me know sometime you are up here - -I would

love to meet you and !

In His service,

dale