Introduction

January 12, 2006

Hi .....I have a great article for educators if you would like to give me your fax.

Introduction

Hi and Good Morning…My name is (31) and married to Mike. We have two sons and live in Cheyenne Wyoming. Our sons are (9) and (8). After 3 years our son was finally diagnosed with Aspie. He had been diagnosed ADHD. And we wondered why for three years no ADHD medication was working for him. About 3 months ago a therapist he had suggested that he might have Aspie. We switched therapists though and yesterday he was finally dx’d He started taking Abilify last night. The Nurse Practitioner he saw yesterday pulled out the DSM IV and read to us the Diagnostic Criteria for an Aspie and he fit perfectly. He said he has about 10 other kids he sees with Aspie and was acting exactly like they were. The odd body movements, no smiling, no eye to eye contact. He is stuck on cars and the Weather Channel. In his school we are right in the middle of getting him an IEP and this is going to change a lot of things for his schooling. I talked to his teacher last night and she was very glad to find out that he got the diagnoses, it explains so much for her. I am going to the school today and giving everyone copies of information I have found from the internet. I am so glad to find this group. Thanks for approving me.

– 9 Aspie

8 - ADHD

January 12, 2006

Good Morning !

I don’t have a fax. Unless you mean

my email address J

Mommy to – 9 – Aspie

– 8 – ADHD

Hi .....I have a great article for educators if you

would like to give me your fax.

January 12, 2006

, My son is 10 and stuck on cars and the TV Guide channel....... LOL....... he gets into the weather channel sometimes too..... How funny...... There is a great book which I bought called "Can I tell you about Asperger Syndrome". I gave it to my sons class which helped to explain to the students why he acts and reacts to the things he does. His classmates have learned alot from this book which has helped Warren tremendously. Check into it..... WELCOME TO THE GROUP!!!!! in Lancaster, Ca** <inspiringmind@...> wrote: Hi and Good Morning…My name is (31) and married to

Mike. We have two sons and live in Cheyenne Wyoming. Our sons are (9) and (8). After 3 years our son was finally diagnosed with Aspie. He had been diagnosed ADHD. And we wondered why for three years no ADHD medication was working for him. About 3 months ago a therapist he had suggested that he might have Aspie. We switched therapists though and yesterday he was finally dx’d He started taking Abilify last night. The Nurse Practitioner he saw yesterday pulled out the DSM IV and read to us the Diagnostic Criteria for an Aspie and he fit perfectly. He said he has about 10 other kids he sees with Aspie and was acting exactly like they were. The odd body movements, no smiling, no eye to eye contact.

He is stuck on cars and the Weather Channel. In his school we are right in the middle of getting him an IEP and this is going to change a lot of things for his schooling. I talked to his teacher last night and she was very glad to find out that he got the diagnoses, it explains so much for her. I am going to the school today and giving everyone copies of information I have found from the internet. I am so glad to find this group. Thanks for approving me. – 9 Aspie 8 - ADHD

Photos Got holiday prints? See all the ways to get quality prints in your hands ASAP.

January 13, 2006

I can mail it, give me your snail mail......

RE: Introduction

Good Morning !

I don’t have a fax. Unless you mean my email address J

Mommy to – 9 – Aspie

– 8 – ADHD

Hi .....I have a great article for educators if you would like to give me your fax.

January 13, 2006

Ok email me your email address and I will

send you my address off list.

inspiringmind@...

Mommy to – 9 – Aspie

– 8 – ADHD

I can mail it, give me your snail

mail......

January 14, 2006

m_bernstein@...

RE: Introduction

Ok email me your email address and I will send you my address off list.

inspiringmind@...

Mommy to – 9 – Aspie

– 8 – ADHD

I can mail it, give me your snail mail......

January 24, 2006

osdbmom wrote:

from Dale,

Welcome and company!

Are your kids on IgG replacement? IVIG or SubQ? I do recommend (if you

haven't yet) as a first step to contact the Immune Deficiency Foundation

and ask for all their material to help you understand what is going on.

That number is 1-800-296-4433. It's pretty overwhelming to be going

through this with one child -- but I can't imagine doing it with

multiple kiddos. But you'll find a lot of Moms on this list are doing

just that -- so welcome to the group. I hope that we can help answer

questions and support you through this hard stage of diagnosis.

In His service,

dale

January 25, 2006

Welcome Valarie, you sound like you have tons going on, all the testing is

frustrating but it is good to at least know what is going on.

I have a 10 year old daughter with CVID, asthma, GERD

Introduction

Hi, I am Valarie, and new to this board. I have 4 children, all have

asthma, my two boys are Donovan and Brennan, aged 5 and 3, and they

both have an IgG def, along with allergies, tracheobronchomalacia,and

brennan has laryngomalacia as well. They are both post nissen for

GERD. My daughter Savannah, aged 8, has severe asthma, food

allergies, and appears to suddenly be having something going on with

her immune system--she has had so much going on with her asthma, we

have even had to start lung percussion therapy with her just to get

her halfway to normal(whatever that is), and found that her globulins

A, M, G, and subclasses are all low now. Last yr, we tested them and

the only low was M, which was just a little low. But this year,

somehow, she suddenly has all of them crashing down. WE tested in

November, and theywere dropping, then tested again two weeks ago

while she was in the hospital, and they were even lower. Frustrating!!

Olivia is 9, and so far ALL she has is asthma, and I hope it stays

that way.

So, the immunologist we are supposed to be getting into is Dr.

Baker, University of Michigan, Ann Arbor, and I am wondering if anyone

here has been to him. I would love any input on that.

so I guess thats our intro, I am looking forward to meeting all of you.

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

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January 29, 2006

Wouldn't it be nice to have besides our virtual autism community, but an actual physical community where families live within walking distance and there are places to go to that would benefit the whole family and then have picnics and get togethers? Someday maybe that will happen. Bonnie Sayers http://autismspectrumdisorders.bellaonline.com ----------------Gail Africa <lilies@...> wrote: Hello, My name is Dawn and I have a 21 year old daughter named Niki. We are

getting older and our health is failing and we are frightened of what is going to happen to Niki when we are gone. **********Hi Dawn, welcome to the group. Sounds like it’s been a tough road for you and your family. I really can’t offer any advise, my son is 13. I know I would not want to move, but have you ever thought of moving to a different area, where there may be more of a support system for folks on the spectrum? I don’t really know where, but maybe someone else has some ideas….Again welcome, Gail A.

January 29, 2006

Hi Dawn, My son is 10 yrs old and is ADHD and AS. Here in California we have a place called The Regional Center which provides services for the blind, deaf, mentally and physically disabled. They are state funded and provide many different services. Currently my son is provided with a social skills group that he attends weekly with about 5 other boys who are all functioning at the same level. All the boys get along great and they have a therapist with them that helps guide them in their conversation and helps them recognise social cues. It seems to be making a difference. He does not interrupt so much anymore and he is learning how to self regulate certain behaviors. He is also starting to understand sarcasm which is huge...... I dont know where you live but I would look into such an agency in your state and find out what sewrvices can be provided for your daughter. Getting her into one of these groups would probably help her tremendously and would help her link up

with other people her age who are at her level which really makes them happy. Good Luck in your search!!!!!!! in Lancaster, CaDawn <dsard222@...> wrote: Hello, My name is Dawn and I have a 21 year old daughter named Niki. I tried to join one of these groups a few years ago, but I was called really bad names, had some other parents of autistic kids say I was a horrible person and mother and that I should be killed for saying these things about my daughter. So, I left that group and continued to try to see things through on my own. But we are at the end of our rope and don't know what to do anymore. We are getting older and our health is failing and we are frightened of what is going to

happen to Niki when we are gone. I know how lucky I am that my daughter is so high functioning. Niki is also the sweetest girl in the world. She is not violent, although there were a few blips on that screen when she was younger (10 to 12), but she now realizes how wrong her behavior was then and is embarrassed that she ever acted out that way. All in all, though, she was more the victim of other people's cruelty than the instigator. Her "violent incidents" were generally the result of her attempts to defend herself from the so-called "normal" kids in school, and then not being able to adequately explain what had led to the incident to the teachers and the other "normal" kid being able to talk rings around her and calling on other kids to back them up. So, she got in trouble and they walked away laughing. Eventually, she had just learned to take the tripping, the shoves, the spitting, the knocking her

books out of her arms, etc without reacting at all just to stay out of trouble. School, for her, was pure hell. Her school years were marked by several moves. Each district said something else. I still do not know, for sure, what is "wrong" with her. One said Aphasia, another high functioning autistic, another Asperger, then depression (although she is not depressed any more than any normal person gets blue once in a while), then PDD-NOS, the last guy just threw up his hands and said that he had no idea that she tested borderline for just about all of the above. Anyway, Niki does seem to "fit best" into the Asperger definition. The cadence of her speech is stilted, her tone of speech is always "off" in social situations. She "sounds" nasty and snippy when she is being nice and nice when she is seething mad and could be justified in being snippy with someone. She says things over and over, which we are used to but it can be annoying to others. She has this weird thing about "soft clothes" and folding her socks a certain way--even when we are all late and in a rush, she has to take a certain amount of time to cuff the dang socks. She loves cats, and we have a few. But, she often holds them too tightly, and you can see them struggling to get away and she just holds on tighter until I have to intercede and make her let it go. She takes a shower and forgets to come out--I mean really, the hot water is all gone and we have to finally tell her to come out. Once, we decided to wait to see how long she would stay in there, just for the fun of it. Finally, after THREE HOURS I couldn't stand it anymore and had to go tell her she had been in there for three hours, and she was just like, "really?" She has no concept of time

passing. Ten minutes, three hours--it's all the same to her. Things that are common sense for everyone else, obvious details, she misses. Like, we moved into the new house and my husband put all our books on the floor of the basement family room that had these built in shelves. We asked her to shelve the books. Now, we all love to read, so we have always had books on shelves. I am a librarian, so she has been raised coming to the library every day after school. Each book was perfectly placed, alpha by author, but with the spines in toward the wall. So, she did not just place them haphazardly. A lot of thought and care went into putting the books on the shelves, but they were spine in. Then again, other times she will get all hung up on a detail and miss the whole main point of a situation or movie or conversation. I received, as a wedding shower

gift in 1974, a small appliance called the Sunbeam Hotshot. Basically, it heats about 12 ounces of water very fast for instant coffee or soup or tea. It says on it, "Hot water heater." We have used it daily all her life. Not long ago, we were in the basement and we heard Niki sounding frustrated and then smelled something terrible. We called upstairs, "What's the matter?" and Niki said the Hotshot was broken, she was trying to make hot chocolate and it made a mess. When we got up there, we disovered that she had filled it with milk, which had scalded and burned and had come foaming out all over the place. And, she was just about to put more milk into it to "try again." Her room is a total mess. And, if we do not go in to tell her what to do, she is too overwhelmed to know where to start cleaning it. She also misunderstands the verbal tones and non-verbal signals of others. She always manages to move herself into someone's path, blocking them. She is double-jointed in her shouldrs and is able to stand, her hands clasped and totally stretched out behind her back. She stands like this very very often, and, quite frankly, it looks very awkward and abnormal and causes strangers to make remarks or look at her like ther eis something wrong with her. I've asked her to stop doing it in public, but she forgets and does it. I've seen her doing it in school and on her jobs. She thinks waitresses and sales clerks are being rude and insulting when they are being perfectly friendly. She thinks they are being friendly when they are being nasty and rude. She often does not realize when people are making fun of her, although she is getting better at that in recent years. She

is, and always has been, socially rejected. In her desire to be "normal," she has allowed herself to be used, abused, and manipulated by others, just so she would "have friends." As I said earlier, she is high functioning. She can present well. She can get through a ten minute interview and get a job, but in the last couple years, she has worked for BJ's wholesale, Tops Supermarkets, Giant eagle Markets, Target, Walmart, Blockbuster, Lowes Home improvement, and a few more i've forgotten. She is either fired after a few weeks or mocked and made fun of so badly she quits. She attends the local community college part time, mostly just so i can keep her on my health insurance policy. But again, she tells me that other students her age shun her and make fun of her. She overhears their snide comments and laughter. I know it sounds terrible, but there

are times I hope that the people who treat her so badly one day go on to have a "special" child of their own so they can feel the pain of watching their child be hurt all their life. Maybe then they will understand. All I've ever wanted to do is protect her and I've even failed at that. Thanks for any advice or information you can give me. I would like to maybe try to have her tested by someone to see if a diagnosis could be pinned down, but I have no idea where you go to do that. I tried several agencies, but they will only do it if we are on Medicaid. I tried my health insurance, but they just hooked her up with a social worker who did nothing but collect $35 a session and talked to her about her feelings, which is well and good, but does nothin to help her gain employment or learn to keep it. I think she needs some sort of mentor program where they will help her get a job and advocate for her when

problems pop up, if such a thing exists. Niki has dreams of maybe one day being married and having children. But the two or three guys her age, so far, that have shown interest have been abusive manipulators who took her money, used and abused her. All I want is for her to be safe and happy. Thanks for listening to all this. Dawn

Bring words and photos together (easily) with PhotoMail - it's free and works with .

January 30, 2006

-------Original Message-------

From: Bonnie Sayers

Date: 01/29/06 13:28:12

Wouldn't it be nice to have besides our virtual autism community, but an

actual physical community where families live within walking distance and

there are places to go to that would benefit the whole family and then have

picnics and get togethers?

Someday maybe that will happen.

Bonnie Sayers

http://autismspectrumdisorders.bellaonline.com

+++++++++++++++++++

Yes, then we would be with people who wouldn't mind if we didn't talk to

them, or went off on our own and ignored them

I should introduce myself - I'm , I live in Australia, my son, Ben, is

11 and has AS and ADD. I suspect he got both from me. Well, I know he did,

but if I say 'suspect' I can't be held responsible I can also blame my

Dad, because he passed it to me, so I am just the innocent one in the middle

February 27, 2006

Dee, we all feel your pain. The ivig has worked wonders for my son but it took

6-9 months to see results. The group is a great support. We all have lost jobs

and delayed college to take care of our children. Hang in there it does get

better especially since your headed in the right direction. Dawn cvid just

diagnosed mother to hypogammaglobulimia, acid reflux, asthma, develop

delay sensory issues

Dee Arrington <themomtoo@...> wrote: Hello,

I have 2 girls ages 16 and 13. 13 year old just

diagnosed with Antigen Specific Antibody Deficiency.

Her IgG, IgA, IgE counts are all low to non existent.

Her IgM counts are good. She has been sick since she

was an infant. Constant sinus infections, broncitis,

pnemonia, croup, ear infections, allergies, asthma,

she has had her tonsils and adenoids removed at 6

sinus surgery at 8 and still has had problems, This

summer asthma could not be controlled. Finally after

doing tests on her since August they now have a

diagnosis. She had her first infusion treatment on

Monday last week and had every possible side effect.

But lets hope this will be worth it.

It has gotten to the point my parents and siblings

think that I made up the illness to get attention for

her. I don't think they know what it is like. I have

lost too many jobs to count because of sick days. I

finally feel that she may have a chance for a normal

life. Now lets hope this works. They said we should

know in about 6 months if it works.

Thank you

Dee

__________________________________________________

February 27, 2006

In a message dated 2/27/2006 10:32:18 AM Pacific Standard Time,

themomtoo@... writes:

Constant sinus infections, broncitis,

pnemonia, croup, ear infections, allergies, asthma,

she has had her tonsils and adenoids removed at 6

sinus surgery at 8 and still has had problems,

Dee--

My son has had two sinus surgeries, tonsils and adenoids removed and four

sets of ear tubes. He didn't even start to get well with any of these. The

only thing that has worked for him is IVIG. There has been such an improvement

in the quality of his life it is unbelievable!! Please let us know how it's

going.

Sandi, Mom to --age 13--CVID

February 27, 2006

Dee,

Don't give up hope. You aren't alone in what you have gone through as

I am sure that you will soon find out from this group. I remember

being called an " overreactive first time mother " when Ian was an

infant and had a 105 temp with severe diarreah that we couldn't stop.

That night he ended up in the trama room at the Children's Hospital

in our area where specialists said he would not have made it through

the night. So just keep faith.

Ian is 10 and started IVIG November 2004. He also had terrible

reactions after the first infusion. As a result, they changed him to

Gammunex and he has done much better. You will want to let your

doctor know because there are different types.

Hope that things will get better for you soon.

February 27, 2006

" She had her first infusion treatment on Monday last week and had every

possible side effect. "

Welcome, Dee!

Parents in this group are terrific with giving suggestions about how to reduce

reactions (e.g., lower the rate, try a liquid/non mix brand, subcutaneous

infusions, etc.). It does get better.

(mom to 4 year old, low everything and okay on IgG therapy)

Dee Arrington <themomtoo@...> wrote:

Hello,

I have 2 girls ages 16 and 13. 13 year old just

diagnosed with Antigen Specific Antibody Deficiency.

Her IgG, IgA, IgE counts are all low to non existent.

Her IgM counts are good. She has been sick since she

was an infant. Constant sinus infections, broncitis,

pnemonia, croup, ear infections, allergies, asthma,

she has had her tonsils and adenoids removed at 6

sinus surgery at 8 and still has had problems, This

summer asthma could not be controlled. Finally after

doing tests on her since August they now have a

diagnosis. She had her first infusion treatment on

Monday last week and had every possible side effect.

But lets hope this will be worth it.

It has gotten to the point my parents and siblings

think that I made up the illness to get attention for

her. I don't think they know what it is like. I have

lost too many jobs to count because of sick days. I

finally feel that she may have a chance for a normal

life. Now lets hope this works. They said we should

know in about 6 months if it works.

Thank you

Dee

__________________________________________________

February 28, 2006

In a message dated 2/27/2006 12:33:56 PM Central Standard Time,

themomtoo@... writes:

> It has gotten to the point my parents and siblings

> think that I made up the illness to get attention for

> her

Dee:

Many of us have gone through this or similar. Some of us get bad advice from

well-meaning family or friends, some get accused of overreacting or making it

up, some get accused of actually causing the illness, etc. etc. It stinks that

in addition to all we go through with our children, we also have to deal with

this. But it is an all-too-common thread. You have to try to rise above, to

not let the turkeys get you down.

I had a well-meaning but wayyyy earthy friend question the amount of

antibiotics takes. I explained to her that I LOVE antibiotics, antibiotics

have

saved her life more than once. I acknowledged you have to be careful, not use

them when not needed, take them correctly, etc., but that without antibiotics,

would be dead. Simple as that.

My mother-in-law is forever getting aspects of 's PID confused and tells

other family members wrong info. She was wierd about it in other ways at

first, too -- once we were at Mc's and she was ordering, and asked for

ketchup packets (instead of just using the ketchup pump), " Because SHE has an

immune disorder " , pointing at little . Just ask for the ketchup, lady, they

don't need an explanation! I let her have it on that one, I mean when gets

older are you going to call her out like that?

Also, my sister-in-law is verrrrrry dramatic and it seems to just kill her

that I have a " special " child. Any time anything happens with (good or

bad), she has to bring up something in her life that " tops " it. It's sick and

strange and sad. Over the years I have learned not to discuss 's PID or any

sicknesses with her because her response will always drive me nuts. The

biggest example I have of this is when was in a PICU, fighting for life

with

bacterial meningitis, my SIL was grilling 's docs on whether her daughter

could have it too, as they had played together recently (valid question). They

explained this was not contagious, there was NO WAY her daughter could have

it. They re-explained it. She wouldn't believe it. They were getting mad at

her, she was being so obnoxious. She ended up taking her daughter to a different

ER and badgering the docs there into giving her daughter (who was 14 months

old and NOT sick at all) a needless spinal tap!

So there are all types of wacky friends and family out there. My husband

heard a great saying: " Everyone's normal 'til you get to know them. " Just vent

to

us -- we'll understand for sure!!!

Welcome...

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

March 19, 2006

Jordan, welcome. I have a 4 year old boy on ivig for two years now. His story

is long and multiple health issues. But I will focus on the immune. He has

hypogammaglobulineanmia his numbers were alot like you childs number for igg and

such. Treatment has been a god send for us. I have also been recently

diagnosed and am startinmg ivig therapy at 35 years old. It's great to see the

numbers go up but don't fear treatment. It's scary at first then it's amazing

what you get use to. My son also has reflux and is on prevacid too. I hope you

receive what help you need here. It's a great group. Dawn cvid mother to

cvid, developmental delay, acid reflux, asthma

Jordan <jcheckwood@...> wrote: I have been lurking since around October

of 04. It seems like I am

one of the few dads here, I guess that is what happens when you wife

does not use computers

Anyway, my daughter Elle's story

Born 1 week late via c-section 8lbs 12oz, spent 2 days in the NICU

for fluid aspiration.

Started dropping off the charts at 6 months of age. Diagnosed FTT,

battery of tests performed.

Negative for CF

endoscopy to rule out gastro issues, all ok, no celiac either (did

have reflux and was put on previced compound for several months,

whcih casued her to stop eating).

AMA we took her off previced at 18 months and she has been eating

well ever since.

Now Elle is 29 months old on 3-9-06 and 31 " and 23.4LBS way off the

charts.

At 12 months she was sent for allergy testing and found to have

absent IGA, low IGG, low IGM, and low IGG sub 1.

We were sent to doctor Arie Reubenstein in NYC, who diagnosed THOI.

She also saw doctor Olesky who diagnosed THOI and wanted to do

an IVIG trial.

Her allerigst/immonologist was totally against this and would not

allow it at the time.

An infectious disease doctor also looked at her charts going back to

birth and advised against IVIG at the time.

Numbers at 12 months

IGA - undetectable

IGG 191

IGM 15

IGE 47

Numbers at 24 months

IGA 15

IGG 384

IGM 45

IGE 79

The allergist is very happy with the numbers and she made good

titiers to prevnar.

He thinks we should do a wait and see with her. She has not been

back to a straight Immunologist(stein/Olesky) as they were too

aggresive in our opinion with regards to the IVIG.

Elle gets sick like other kids, ear infections, sinus infections,

cold nothing major, knock on wood.

She has had a runny nose since birth and multiple food allergies.

Thats the story so far, seeing another endo in April for growth

hormone testing again as she is borderline low.

Debating on seeing another Immunologist.

She does very well on antibiotics.

I am happy to see her numbers going up.

God bless you all and your families.

Any thoughts where to go from here?

Jordan

Elle - 10-7-03 - THOI

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

March 19, 2006

from dale,

Welcome to the group Jordan, we've had Dads in the past, just not any

currently that I know of.

As you've learned, a lot of times before the age of two -- everything

seems like a wait-and-see attitude and that's fine as long as the child

is relatively healthy as an overall picture.

Have you contacted the Immune Deficiency Foundation and gotten their

material on PID? I recommend the Patient and Family Handbook as a

necessity to all newly diagnosed or " in-the-process " parents. It's free

of charge. Their number is 1-800-296-4433.

I can't speak for your immunologist, but when IgA is totally absent, it

generally points to a genetic condition called IgA Deficiency -- and as

far as I know, it's not considered to be " transient " . With a subclass

IgG also low -- the recommendation is IVIG to try to prevent as many

infections as possible. That's probably why the immunologist was

already ready to start IVIG without waiting for further information.

However, as some other people on this group have experienced --

apparently IgA deficiency IS in real life sometimes transient! That

would be an interesting research project for someone! So

congratulations on her building IgA! That's great news and should give

you some hope that all of this will become a thing of the past soon.

However, at the present both her IgA and her total IgG look low to me.

Numbers are funny because each lab can list different numbers for the

" normal " . Also " normal " changes with each age group. So, I may be wrong.

The major question is: Is she adequately protected against germs.

However, if she build a response to prevnar that's pretty good. What

about her titers to her other vaccinations? Is she completely

protected there? How recently have they checked the prevnar -- because

some kids lose them after 3-6 months? They build initially, but don't

keep them.

Is this going to turn out to just be allergies? Maybe, but I'm afraid

that with numbers like these, you may need to look into the immunology

department in addition to the allergies. Is she just behind because of

her eating problems? Maybe, I hope so. But, those numbers are pretty

low. I don't know why you chose to listen to the allergist instead of

the immunologist. If you were not comfortable with the immunologist and

want a 2nd opinion, I would recommend Dr. Charlotte Rundles-Cunningham

at Mount Sinai in NYC. She's very knowledgable and personable. She

specializes in CVID and see lots of patients.

> Elle gets sick like other kids, ear infections, sinus infections,

> cold nothing major, knock on wood.

There are 2 very distinct patterns that we see with CVID. One has the

kid running to the hospital every other month for an IV antibiotic

because of major life threatening infections. The other pattern, like

my daughter, was just one simple little cold, stomach bug, skin rash,

ear infection, sinus infection, toe infection, eye infection, cold,

sinus infection, cold, etc. She has never been hospitalized, never even

been " seriously " ill -- but before IVIG she was just constantly ill.

Even though she was not " seriously ill " she was missing out on what we

call " quality of life " things. She couldn't enjoy the things she should

be enjoying and do the things that kids are supposed to be doing at that

age. She was constantly tired and ached all over. So, don't let a

doctor tell you that as long as she doesn't have a deep-seated

infection, she's fine! Because it just isn't the truth!

So, I hope some of this rambling will help you and your wife sort out

your decisions. I'm glad Elle is doing so well. I hope she continues

to improve and gets on with her life without needing IVIG or any other

intervention.

In His service,

dale

March 20, 2006

Dale and Jordan,

When I went to one break out session at the IDF conference....and I

can't remember who it was who spoke...either the chronic sinus infection

or immune deficiency and autoimmunity...but that typically IGA isn't

made until age 2...which is supported by our ....his was in the

upper teens initially and then dropped to the lower teens and now is in

normal range before starting SCIG....

Jordan,

The IDF information is very valuable...as is the info on the

modell foundation and baxter also has some information out there that is

really good.

Dale, your daughter is much like our ....quality of life was so

impacted...there is no comparison now....

Now, he is healthy and our whole family is busier....able to do normal

family things...and I don't feel like I need to be here constantly...

Hope that helps..

Re: Introduction