New here

[Guest guest]

" our physician assistant, said our daughter is too young to have the iv of

immunglobins "

This does not make any sense to me. I know newborns that have received IgG

replacement both via IV and subcutaneously (like insulin). Maybe something was

lost in communication? If a child needs antibody replacement, there are no age

constraints. Perhaps they want to " watch and wait " ? Regardless, you might

consider calling someone at the Immune Deficiency Foundation 800-296-4433 and,

if you don't have an immuno, finding an " experienced " one that can assess the

situation properly.

If you want to know what immunos and infectious disease docs (ID) people have

seen in your area, you could post a note to our group with your exact location

and anything else that might be helpful. Where is your dentist? Sorry, I am

losing the details -- please sign your name and give some info about your child

(name, age, diagnosis, etc.) so everyone can help you. : )

We use K12. It is a cyberschool-charter school. Accredited and follows a

nationally approved curriculum. It is available in about 1/2 of the states and

growing. http://www.k12.com/

mom to CVIDer

[Guest guest]

To add to what Ursula just said (below)...

Another resource is the: Patient Care and Cystic Fibrosis Center at U of MN:

612-624-0962

They rely heaviliy on the genetic mutation test as well -- and very skeptical of

other types of tests. Last time I spoke with them, they said the test was cheap

(yay) and a simple blood draw and ship to them. If you leave a message, they

nurses will return calls and may help to coordinate re-testing.

mom to CVIDer

Re: New Here

I'd go with the DNA test. Although there are mutations that haven't been found

yet. There is a lab I believe in Massachusetts that can test for over 700 known

CF types. Macey had two sweat and two DNA's (buccal swab and blood). She was

negative in all. It just seems that the infections are so similar and the

symptoms are alot alike that doctors want to rule it out.

Ursula - mom to (13) and Macey (11, CVID)

http://www.primaryimmune.org

http://www.jmfworld.org

http://members.cox.net/maceyh

[Guest guest]

ok, the doctor said that most children he knows does not get IgG replacements

till they are 15 and he wants to wait till then, we are in Elba, Alabama 2 hours

south of Mongtomery, her dentist is in birmingham alabama, 4 hours from here in

north alabama we are 30 minutes from the florida border our daughters name is

Jordan, she is 3 and she was diagnosed with traceamalasia and asthma and

recently diagnosed with PID in september when she was in icu... she has been in

the hosptial 25 times she has been a failure to thrive baby when she was 12

weeks old, she is still only at 10 percent on the chart... she eats everything

thanks janna

Schulman <dietdoc@...> wrote:

" our physician assistant, said our daughter is too young to have the

iv of immunglobins "

This does not make any sense to me. I know newborns that have received IgG

replacement both via IV and subcutaneously (like insulin). Maybe something was

lost in communication? If a child needs antibody replacement, there are no age

constraints. Perhaps they want to " watch and wait " ? Regardless, you might

consider calling someone at the Immune Deficiency Foundation 800-296-4433 and,

if you don't have an immuno, finding an " experienced " one that can assess the

situation properly.

If you want to know what immunos and infectious disease docs (ID) people have

seen in your area, you could post a note to our group with your exact location

and anything else that might be helpful. Where is your dentist? Sorry, I am

losing the details -- please sign your name and give some info about your child

(name, age, diagnosis, etc.) so everyone can help you. : )

We use K12. It is a cyberschool-charter school. Accredited and follows a

nationally approved curriculum. It is available in about 1/2 of the states and

growing. http://www.k12.com/

mom to CVIDer

[Guest guest]

You need to find a new doctor. Nothing about this disease is cut and dry. Is

there an immunologist in Dothan? If you're willing to come to Atlanta I can

give you a name for a good workup referral. You wouldn't have to use Atlanta

for ongoing care but they could come up with a thorough assessment and a plan of

care for the local pediatrician.

Ursula - mom to (13) and Macey (11, CVID)

http://www.primaryimmune.org

http://www.jmfworld.org

http://members.cox.net/maceyh

[Guest guest]

Holly wrote:

>

>

> Hi. My membership was just approved so I thought I would send an intro out.

> We are the Carpenters from lower Michigan. I am Holly, dh is Jim, Nate

> (10) and Jenavieve (4) are our children.

Welcome Holly,

I want you to know that I feel you are in the right place. It's

imperative that your daughter get some basic blood work done as soon as

possible. It's a simple blood test to check her IgG, IgA, IgM and IgE

levels. They can also check to see if she built protective titers to

her immunizations. That's a first step. Those tests can be done

whether she's sick or well.

2nd thing I would recommend is that you contact the Immune Deficiency

Foundation at 1-800-296-4433 and find an Immunologist in your area that

can take care of the initial diagnostic stuff and getting your daughter

on the path to health.

You need to know that if it turns out to be an immune deficiency, then

we're talking permanent -- or usually permanent. But, that doesn't mean

she has to stay sick all the time. There are a lot of functioning

adults out there with immune deficiencies. They hold down jobs, they

parent, they have rich and full lives -- just with precautions and

treatments that have to be worked into their schedule. Once our kids

get on treatment, many of them return to school, get involved in sports

and have good lives. My daughter went to college, partied and had a

typical college experience -- fell in love and dropped out to get

married (maybe that's not so normal!).

Right now you can't imagine this little one surviving -- let alone

thriving. But I want to assure you with proper treatment, there's a lot

of hope for good things to come. So. Get in touch with the Immune

Deficiency Foundation and find an immunolgist or get your local

pediatrician to run these basic tests. If the pediatrician has any

questions at all, he/she can contact the Consulting Immunologist program

which is a free service to doctors who need advice on how to treat or

diagnose PID. That number (for your doctor's use only - they won't talk

to parents!) is 1-877-666-0866.

Hope to hear from you soon about test results.

In His service,

dale

[Guest guest]

HI all

i was headed to the dr to get Jordans labs yesterday but we had lots of bad

weather yesterday tornadoes and such and from recollection, her IgA and her IgM

is low and her IgG is low as well, her IgA and IgM are half of what they are

supposed to be and the IgG is about 1/4 low... i will get the exact results next

week when we got back...

THanks

Janna

Dale Weatherford <dale@...> wrote:

janna morrow wrote:

>

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

Welcome Janna,

I hear your desperation. I'm amazed that she was diagnosed with PID yet

not treated for it. Do you know what her labs were? There are a lot of

PIDs. Is she low IgA? low IgG? low IgM? etc.

I'm assuming that since she was hospitalized with pneumonia, you are

talking about low IgG's and the proper treatment for that is to replace

the IgG levels. But because you're not getting top notch care -- I

would be most comfortable encouraging you to PLEASE, PLEASE contact the

Immune Deficiency Foundation to get a referral to an Immunologist in

your area. Like Ursula says, just because you have to travel for the

work-up doesn't mean that you have to travel all the time. Once the

diagnosis is made and the treatment plan put in place, your regular

pediatrician should be able to care for her as long as he/she is willing

to follow the immunologist's recommendations.

I'm very concerned for your daughter because it sounds like she's headed

to some serious damage from the infections if we don't get the proper

treatment soon.

I stayed with Katy's pediatrician for 2 years too long. If I knew then

what I know now -- I would have been out of his office after the first

time he didn't take me seriously. When he told me that I was making

Katy worse by " worrying " so much -- I should have realized I was in a

trap that I couldn't escape. Only when I changed pediatricians and

started over did we find the proper diagnosis.

Do you need to see a specialist? Yes. And the sooner the better.

In His service,

dale

---------------------------------

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[Guest guest]

Hi CJ,

Welcome to the group!

This group is awesome! Lots of support!

I think you'll find what you need here

Hugs

Judy

[Guest guest]

>Hi CJ,

Welcome to the group. This site has been a godsend to our family and

the parents here are absolutely wonderful. It is a great place to get

support, ask questions or vent if need be.

Take care,

Kim M

> Hello All I am new here. I name is CJ and I am a 27 year old stay at

> home mom with two girls.

[Guest guest]

Welcome, CJ! It's a VERY helpful group and we have parents of kids with

your same diagnosis. So, ask away! :-)

Dina

[Guest guest]

Hi CJ, welcome!

So has the doctor mentioned medication or therapy for your 4y/o yet?

I have a son, 17, with OCD. He also has an Aspergers diagnosis,

mild. We didn't get the latter until 8th grade, though " autism " was

on my mind from a pretty young age. His OCD began in 6th grade. He

had little tendencies/quirks towards OCD before that, but 6th grade

began 24/7 compulsions. Doing well overall now, compared to that

first year or so, still dealing with OCD. He's had his up/downs over

the years with it.

To give you a bit of hope re the 4 y/o, one of my other sons was

similar at that age and younger. Finally " grew out " out of it or

something, but it passed. He's " typical " , no diagnosis but probably

ADD (just my thought about him).

Is your younger daughter getting any type of services re her

Aspergers? Interesting that the younger one has the diagnosis before

the older one. Is she more affected?

Are you working on any of your 4 y/o's OCD behaviors yet? If she

does have Aspergers, it can be a " trial " trying to decide which (OCD

or Aspie) is causing a behavior, but for a lot of things you can work

on them the same way.

single mom, 3 sons

, 17, with OCD, dysgraphia and Aspergers/HFA

>

> Hello All I am new here. I name is CJ and I am a 27 year old stay

at

> home mom with two girls. I have a four year old with ADD/ OCD. She

has

> it pretty bad from the drs view. She cannot handle anything sticky.

> She hates dirt. She has to have everything clean and in order. If

its

>

[Guest guest]

welcome CJ - this place is great - one good thing is that you know so

much so early - hopefully they will be helped by that - and we're here

whenever you need

eileen

Quoting CJ <shymom24@...>:

> Hello All I am new here. I name is CJ and I am a 27 year old stay at

> home mom with two girls. I have a four year old with ADD/ OCD. She has

> it pretty bad from the drs view. She cannot handle anything sticky.

> She hates dirt. She has to have everything clean and in order. If its

> not she will go crazy. She can not handle a single drop of water on

> her clothes or she has to change them. She changes her undies 4 times

> a day at a minimum because she feels they are too " dirty " . This is

> just the begining of it. They are also testing her for aspergers and

> PDD. I also have another daughter who is 2 and she has been diagnosed

> iwth with autism spectrum disorder/ aspergers. I was informed of this

> group from another support group I am invovled in. I am hopeing to

> find some helpful information and some support. Thank you for allowing

> me to join.

> -cj

>

>

>

[Guest guest]

Welcome CJ. You will find wonderful support here and will learn you are not

alone, neither are your kids. That is great they both have their diagnoses so

young. That will help them.

I have a 5 yo dd dx with OCD and childhood anxiety about a year ago. She has

done well with therapy. I have an almost 17 yo ds with ADHD and a 3 1/2 yo dd

who will probably end up with all of the above!

Sharon

New here

Hello All I am new here. I name is CJ and I am a 27 year old stay at

home mom with two girls. I have a four year old with ADD/ OCD. She has

it pretty bad from the drs view. She cannot handle anything sticky.

She hates dirt. She has to have everything clean and in order. If its

not she will go crazy. She can not handle a single drop of water on

her clothes or she has to change them. She changes her undies 4 times

a day at a minimum because she feels they are too " dirty " . This is

just the begining of it. They are also testing her for aspergers and

PDD. I also have another daughter who is 2 and she has been diagnosed

iwth with autism spectrum disorder/ aspergers. I was informed of this

group from another support group I am invovled in. I am hopeing to

find some helpful information and some support. Thank you for allowing

me to join.

-cj

[Guest guest]

Welcome - this is an amazing group where you will learn so much .

Cheers Jaxx (New Zealand)

[Guest guest]

Welcome . I'm new here also. I'm 42 and live in Michigan. Looking forward to droping pounds with you. Janices_Mum <annas_mum@...> wrote: Happy Saturday to you all! I'm new around here and wanted to introduce myself. I'm (Evidently there are many of us?) and I live in Ohio. I'm 42 and married. We have one little daughter, , who is the light of my life. She's 8 and I am privileged to homeschool her. I'm on fire right now. I'm high with this new

life I've begun. It's so funny that it took me this long to get this serious about my life and health but no looking back! Only forward. I've been on this new journey in my life for 3 weeks now. It's good. I'm glad to have found my way here to step off some of the path with all of you! Thank you for allowing me to share this site. I'm looking forward to getting to know you all. Do you have a team on with Weight Loss Buddy site?

Want to start your own business? Learn how on Small Business.

[Guest guest]

Hi Dina,

I read your post and immediately thought of PANDAS which is a syndrome

characterized by sudden onset of OCD symptoms cause by strep throat.

The way your daughter's symptoms came on so suddenly brought this to

my mind. You may want to look into this. Here is a site to start with:

http://www.tourettesyndrome.net/pandas.htm

My 16 yo son had it and is now doing very well. He was treated at

Children's Hospital of Philadelphia and is now on an antibiotic

prophylactically.

Let me know if you have any questions.

Best of luck to you,

Robin in NJ

[Guest guest]

Hi Dina,

I read your post and immediately thought of PANDAS which is a syndrome

characterized by sudden onset of OCD symptoms cause by strep throat.

The way your daughter's symptoms came on so suddenly brought this to

my mind. You may want to look into this. Here is a site to start with:

http://www.tourettesyndrome.net/pandas.htm

My 16 yo son had it and is now doing very well. He was treated at

Children's Hospital of Philadelphia and is now on an antibiotic

prophylactically.

Let me know if you have any questions.

Best of luck to you,

Robin in NJ

[Guest guest]

what did you mean by treated???

eileen

Quoting Robin <rbeers@...>:

> Hi Dina,

> I read your post and immediately thought of PANDAS which is a syndrome

> characterized by sudden onset of OCD symptoms cause by strep throat.

> The way your daughter's symptoms came on so suddenly brought this to

> my mind. You may want to look into this. Here is a site to start with:

> http://www.tourettesyndrome.net/pandas.htm

> My 16 yo son had it and is now doing very well. He was treated at

> Children's Hospital of Philadelphia and is now on an antibiotic

> prophylactically.

> Let me know if you have any questions.

> Best of luck to you,

> Robin in NJ

>

>

>

>

[Guest guest]

He had the plasma apheresis done there. That's when they clean out

the antibodies from the blood. It took 2 weeks of visits which lasted

a few hours each. It was tough, but it helped my son.

Robin

> what did you mean by treated???

> eileen

>

>

>

>

>

>

>

>

>

> Quoting Robin <rbeers@...>:

>

> > Hi Dina,

> > I read your post and immediately thought of PANDAS which is a

syndrome

> > characterized by sudden onset of OCD symptoms cause by strep

throat.

> > The way your daughter's symptoms came on so suddenly brought this

to

> > my mind. You may want to look into this. Here is a site to start

with:

> > http://www.tourettesyndrome.net/pandas.htm

> > My 16 yo son had it and is now doing very well. He was treated at

> > Children's Hospital of Philadelphia and is now on an antibiotic

> > prophylactically.

> > Let me know if you have any questions.

> > Best of luck to you,

> > Robin in NJ

> >

> >

> >

> >

>

[Guest guest]

thanks - can i ask what his numbers were or how they decide when you

need to do that

eileen

Robin <rbeers@...>:

>

> He had the plasma apheresis done there. That's when they clean out

> the antibodies from the blood. It took 2 weeks of visits which lasted

> a few hours each. It was tough, but it helped my son.

> Robin

>

>

>

>

>

>

>

>

>

>> what did you mean by treated???

>> eileen

>>

>>

>>

>>

>>

>>

>>

>>

>>

>> Quoting Robin <rbeers@...>:

>>

>> > Hi Dina,

>> > I read your post and immediately thought of PANDAS which is a

> syndrome

>> > characterized by sudden onset of OCD symptoms cause by strep

> throat.

>> > The way your daughter's symptoms came on so suddenly brought this

> to

>> > my mind. You may want to look into this. Here is a site to start

> with:

>> > http://www.tourettesyndrome.net/pandas.htm

>> > My 16 yo son had it and is now doing very well. He was treated at

>> > Children's Hospital of Philadelphia and is now on an antibiotic

>> > prophylactically.

>> > Let me know if you have any questions.

>> > Best of luck to you,

>> > Robin in NJ

>> >

>> >

>> >

>> >

>>

>

>

>

[Guest guest]

Hi

I am new too... I am sure that we can all help each other. You have an interesting work schedule.. that must be hard on your time clock as you will be sleeping while others are working and you working while others are sleeping.. not good on the social life either.

Mandy

New here

I am from Alabama and am so disguisted by my weight right now. Iam in another weight loss group that deals with bible principles but Ineed a group to go along with it that can understand the 100 plusoverweight person. I have well over 100 to lose and am so discouragedright now. My work schedule has me working from 8pm til 4am. I get tobed about 5am. Sleep thru breakfast and then a fast lunch and thenusually a fast food supper.I am starting today eating a healthy lunchand taking something to work with me not from a fast food place.I amglad to have found a place that I am hoping understand the problems ofthe very overweight.

Send instant messages to your online friends http://au.messenger.

[Guest guest]

Hello and welcome to the club maybe you can start by tracking

what you eat and just moving some if you can start by taking 15mins a

day doing some kind of exercise and drink plenty of water..check out

this website sparkpeople.com good luck to you on your journey

Tema

>

> I am from Alabama and am so disguisted by my weight right now. I

> am in another weight loss group that deals with bible principles but I

> need a group to go along with it that can understand the 100 plus

> overweight person. I have well over 100 to lose and am so discouraged

> right now. My work schedule has me working from 8pm til 4am. I get to

> bed about 5am. Sleep thru breakfast and then a fast lunch and then

> usually a fast food supper.I am starting today eating a healthy lunch

> and taking something to work with me not from a fast food place.I am

> glad to have found a place that I am hoping understand the problems of

> the very overweight.

>

>

[Guest guest]

i was just researching the NIMH for this and they mentioned only doing

it if the child's " severely ill " -they also noted side affects -did

your son have any? and they really didn't leave it sounding too

promising but the OC website did??? more confusion!!!!!

thanks eileen

PS never thought of it this way but.... could dd's elevation be that

she just can fight a lot??? she does have an awesome immune system

anyone have thoughts or info?

thanks in advance

Quoting Robin <rbeers@...>:

>

> He had the plasma apheresis done there. That's when they clean out

> the antibodies from the blood. It took 2 weeks of visits which lasted

> a few hours each. It was tough, but it helped my son.

> Robin

>

>

>

>

>

>

>

>

>

>> what did you mean by treated???

>> eileen

>>

>>

>>

>>

>>

>>

>>

>>

>>

>> Quoting Robin <rbeers@...>:

>>

>> > Hi Dina,

>> > I read your post and immediately thought of PANDAS which is a

> syndrome

>> > characterized by sudden onset of OCD symptoms cause by strep

> throat.

>> > The way your daughter's symptoms came on so suddenly brought this

> to

>> > my mind. You may want to look into this. Here is a site to start

> with:

>> > http://www.tourettesyndrome.net/pandas.htm

>> > My 16 yo son had it and is now doing very well. He was treated at

>> > Children's Hospital of Philadelphia and is now on an antibiotic

>> > prophylactically.

>> > Let me know if you have any questions.

>> > Best of luck to you,

>> > Robin in NJ

>> >

>> >

>> >

>> >

>>

>

>

>

[Guest guest]

Hi,

Good for you having a plan. I hope your first day goes/went well.

I'm on day one, too.

Kim F

[Guest guest]

Welcome. MMM dont know much about working crazy hours. The family that I have and that work those crazy hours, they eat there dinner in the am.

NHMom to AbnEm...

[Guest guest]

Hi,

I just wanted to add that my DD received IVIG for PANDAS and it was a

lifesaver. This is another treatment that was also done at the NIMH

during the same study that the plasmapheresis was performed. She's

also on prophylactic antibiotics as well.

> > He had the plasma apheresis done there. That's when they clean out

> > the antibodies from the blood. It took 2 weeks of visits which

lasted

> > a few hours each. It was tough, but it helped my son.

> > Robin

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >> what did you mean by treated???

> >> eileen

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >> Quoting Robin <rbeers@>:

> >>

> >> > Hi Dina,

> >> > I read your post and immediately thought of PANDAS which is a

> > syndrome

> >> > characterized by sudden onset of OCD symptoms cause by strep

> > throat.

> >> > The way your daughter's symptoms came on so suddenly brought

this

> > to

> >> > my mind. You may want to look into this. Here is a site to

start

> > with:

> >> > http://www.tourettesyndrome.net/pandas.htm

> >> > My 16 yo son had it and is now doing very well. He was treated

at

> >> > Children's Hospital of Philadelphia and is now on an antibiotic

> >> > prophylactically.

> >> > Let me know if you have any questions.

> >> > Best of luck to you,

> >> > Robin in NJ

> >> >

> >> >

> >> >

> >> >

> >>

> >

> >

> >

>