Roll call

[Guest guest]

Hello, my name is and I have 4 children: Macy(18), Chase(14),

Zachary(14) - yes, twins - and Maddisyn (7 w/DS, although we like to call it " Up

Syndrome " ) and we live in North Carolina. I guess I would be called a " lurker "

as I too have read numerous posts, but have not posted anything myself.

I came upon this group while looking on-line for information on weighted pencils

and raised line paper; not sure how that happened, but am sure glad I joined. I

have read a lot of interesting posts on things to look for and think about for

Maddisyn's future.

Maddisyn is in a mainstream class and gets about 2 1/2 hours of resource daily.

She also receives OT and ST. When she was younger and non-verbal, she was taught

sign language and boy was that a blessing!!!! (I was beginning to hear her

" grunting " for what she wanted in my sleep! lol). I held her back in Pre-K, so

she is in the 1st grade this year. Knock-on-wood, I have only had 1 major issue

to date about her education during an IEP meeting. The Pre-K EC Coordinator told

me a year in advance that she would be going into a mainstream classroom; even

though I work in a Developmental Daycare (which is a blended facility) I just

assumed she would be going into a DD class. I was so excited!! I as well as her

older siblings had worked so hard with her on anything and everything. When it

came IEP time, the coordinator decided Maddisyn needed to be re-evaluated and

then we would meet. (Alarm bells immediately sounded in my head.) Sure enough,

when the time came, the same coordinator " tried " to tell me that Maddisyn had to

go into a self contained classroom at a different school. She " professionally "

read me the list of requirements for a child to meet before entering

Kindergarten and then asked me " If Maddisyn could do any of those things? " I

don't think I have ever been that upset/mad. I told her " nicely " in front of a

table full of people that I would homeschool Maddisyn before that happened and I

refused to sign the IEP. That got her thinking. Eventually, it was suggested

that Maddisyn repeat Pre-K but in the school setting (she attened the Pre-K

through the Center where I work). The coordinator jumped on that idea and said

let's give her 6 weeks, meet again and see where we are. I told her that

Maddisyn deserved a full 9 week session just like everyone else! To make a long

story short, they quickly found out, with the help of her Speech Therapist, that

is knew a whole lot more than they were giving her credit for. So she is still

in the same school, but in the First grade now. She will soon be in second grade

and will be changing schools. Ughhhhhh. Hope everyone there loves her as much as

they do at the school she is at now.

I would like to add one more thing: whenever I start to feel sorry for myself or

for Maddisyn, I quickly realize that so many others have much more to worry

about.

I firmly believe that " Life is not about avoiding the storm, but about learning

to dance in the rain. "

Thanks to everyone for their very helpful posts!!!!!

[Guest guest]

Still didn't hear from marie ??

Now the Mama in us is kickin' in....imagining horrible scenario's ,

when actually thier just getting much needed rest. LOL

" A well-behaved woman never made history " Mae West

http://facebook.com/people/andTrudy-Kinsey/1340460877

[Guest guest]

State: North Carolina

Kids: (11) - healthy

(8) - cvid secondary to mito

Meredith (6) - cvid secondary to mito

Madison (21 months) - monitoring since she has mito but immune

function ok so far

Treatment: and Meredith have been on IVIG since they were 3, so 5+

years for and 3+ years for Meredith. They get it at home, which we

love!

Sent from my iPad

On May 10, 2011, at 1:07 PM, " kristinz4 " <kristin-smith@...> wrote:

> We haven't done a roll call in a long time, I'd love to see who is still here

and learn more about some of our newer members.

>

> If you are willing, please answer the following questions:

>

> What State do you live in?

>

> What is your child(ren)'s age and diagnosis?

>

> Are they using Subq or IVIG?

>

>

[Guest guest]

State: North Carolina

Kids: (11) - healthy

(8) - cvid secondary to mito

Meredith (6) - cvid secondary to mito

Madison (21 months) - monitoring since she has mito but immune

function ok so far

Treatment: and Meredith have been on IVIG since they were 3, so 5+

years for and 3+ years for Meredith. They get it at home, which we

love!

Sent from my iPad

On May 10, 2011, at 1:07 PM, " kristinz4 " <kristin-smith@...> wrote:

> We haven't done a roll call in a long time, I'd love to see who is still here

and learn more about some of our newer members.

>

> If you are willing, please answer the following questions:

>

> What State do you live in?

>

> What is your child(ren)'s age and diagnosis?

>

> Are they using Subq or IVIG?

>

>

[Guest guest]

State: Iowa

Caelan 11: Hypogammaglobulinemia (low IgG and IgM), specific antibody

deficiency, specific T-cell deficiency; asthma, GERD, severe multiple food

allergies

Treatment: Hizentra SubQ

[Guest guest]

What State do you live in? Mississippi

What is your child(ren)'s age and diagnosis? Sam is 7 he will be 8 in July and

has CVID

Are they using Subq or IVIG? Had been on IVIG since he was 4 just recently made

the switch to sub q and are loving it!!

________________________________

From: kristinz4 <kristin-smith@...>

Sent: Tuesday, May 10, 2011 12:07 PM

Subject: Roll Call

 

We haven't done a roll call in a long time, I'd love to see who is still here

and learn more about some of our newer members.

If you are willing, please answer the following questions:

What State do you live in?

What is your child(ren)'s age and diagnosis?

Are they using Subq or IVIG?

[Guest guest]

What State do you live in? Mississippi

What is your child(ren)'s age and diagnosis? Sam is 7 he will be 8 in July and

has CVID

Are they using Subq or IVIG? Had been on IVIG since he was 4 just recently made

the switch to sub q and are loving it!!

________________________________

From: kristinz4 <kristin-smith@...>

Sent: Tuesday, May 10, 2011 12:07 PM

Subject: Roll Call

 

We haven't done a roll call in a long time, I'd love to see who is still here

and learn more about some of our newer members.

If you are willing, please answer the following questions:

What State do you live in?

What is your child(ren)'s age and diagnosis?

Are they using Subq or IVIG?

[Guest guest]

I am Melody, mom to 3 little boys with Mitochondrial Disease, Complex I

deficiency. We live outside of Houston, TX.

is 8.5, is 6, and is 3. All of them have immune

deficiency secondary to the Mito. All of them used to respond well to their

vaccinations, but none of them were able to retain their titer levels for

very long. and have now progressed to the point where

neither of them mount much of a response to their vaccines at all anymore.

was very ill when he was little and then we went through a

honeymoon period where he was much healthier, and now as of this past

spring, has been doing poorly again. IVIG has been recommended for him, but

we are still trying to decide what to do at this point.

was very ill when he was younger and progressed to the point where he

was on IVIG. His needle phobia became unbelievably difficult and we all

dreaded IVIG day. He trialed off it and has done relatively well,

considering he started school this year and has done ok. His immuno would

like to see him back on it, but we are doing well enough without it and I am

ok with not having to put him through it if possible. He has had bad

reactions to the IVIG products we have used in the past and needed a lot of

pretreatment and still needed round the clock meds and Zofran for days

following the infusion. We suspect he may have had aseptic meningitis at

one point from his infusions as well.

is doing the best of the 3, though he has had repeated infections

this year. He is still responding to vaccines, so we are hoping he

continues to respond well.

Our immuno has finally jumped on the SubQ bandwagon and said we could try

that at home if/when we put the boys on IVIG, so I am wondering how my

completely needle phobic child would do on that. It sounds much easier than

to have to be admitted for the day to the hospital and deal with all the bad

side effects for days following.

Melody

From: [mailto: ] On Behalf Of

kristinz4

Sent: Tuesday, May 10, 2011 12:08 PM

Subject: Roll Call

We haven't done a roll call in a long time, I'd love to see who is still

here and learn more about some of our newer members.

If you are willing, please answer the following questions:

What State do you live in?

What is your child(ren)'s age and diagnosis?

Are they using Subq or IVIG?

[Guest guest]

State: Louisiana

Kids:

Ashton - 7 healthy

Ainsley - 5 healthy

- 22 months Selective Antibody Deficiency, asthma and reflux

Friday will be his 4th infusion via IVIG

Sent from my iPhone

[Guest guest]

What State do you live in? California

What is your child(ren)'s age and diagnosis? andra 15 years, FG

Syndrome, CVID, possible Aplastic Anemia

andra is the youngest of 6 (ages 32-20), her siblings are for the most

part healthy, except for her brother who has Crohn's Disease

Are they using Subq or IVIG? Currently, she is using IVIG every four weeks,

she has been doing infusions since she was 8.

[Guest guest]

Hi Krisin,

As you know I am new to the group - I will reply to all, but I wanted to ask

you... do you compile a list of people with this information? If so, do you

then pass it around to the group? Just wondered. Thanks. Terri Cahill

From: kristin-smith@...

Date: Tue, 10 May 2011 17:11:19 +0000

Subject: Re: Roll Call

I'll start!

What State do you live in?

Indiana

What is your child(ren)'s age and diagnosis?

Conner - 16 with NEMO (cured by BMT) and MBL deficiency

Hayden - 16 MBL deficiency

Evan - 16 MBL deficiency

Kelsey - 15 NEMO carrier and MBL deficiency

Are they using Subq or IVIG?

No treatment at this time (but have done both subq and IVIG)

Take care,

[Guest guest]

What State do you live in? Albany, NY

What is your child(ren)'s age and diagnosis? 10 mths old, Sophia, Hyper IGE

(Jobs Syndrome), (husband also has condition)

Are they using Subq or IVIG? not yet, daily bactrim keeps her healthy without

symptoms

Other children: , 2yrs, healthy

>

> We haven't done a roll call in a long time, I'd love to see who is still here

and learn more about some of our newer members.

>

> If you are willing, please answer the following questions:

>

> What State do you live in?

>

> What is your child(ren)'s age and diagnosis?

>

> Are they using Subq or IVIG?

>