School?

[Guest guest]

Macey goes to school. Two years ago in Kindergarten she did go to a reduced

week (M,W,F) schedule during January & February due to fatigue. The teacher

approached the doctor not us. But it resolved. She goes as much as

possible and has gone from missing 50-60 days a year to 17 days this year.

She has attended school with levels as low as 215 IgG while off IVIG. This

was during K and it was also when the fatigue hit so bad.

Ursula

(on a different computer so no signature line available

[Guest guest]

In a message dated 6/30/03 5:45:16 PM Pacific Daylight Time, Bejenski@...

writes:

> Can everyone's kids go to school? If so, how much do they get

> sick?

Hi Lynne,

cannot attend school. He gets sick all of the time while he is at

home and while at school was near collapsing. He just couldn't handle all of

the bugs going around. For us it's a little different because he does not

receive IVIG (yet) and he also has a heart condition. But I do know the tired

part--he could not keep up with school energy-wise. I am hoping that after his

heart surgery, we will attack whatever is going on with his immune system and

get him back in school the following year. The current theory is that he may

also have " Tethered Cord Syndrome " as well.

Sorry, I guess I've digressed. I hated to take him out of school because

he absolutely loves it. But it was clear that his immune system could not

handle it. His Ped did mention at the time that some kids just need to out

temporarily until they're immune system builds back up again. Also, part of our

equation is the fact that whenever he is in school he starts getting Pneumonia

which is dangerous for his heart condition. Bri does have neighborhood kids to

play with and they can only play if they are well. I think this is imperative

for him!! Please let us know how it's going!! You will make the right

decision.

Sandi--Mom to , age 10. Immune Deficiency of unknown origin, Tetrology

of Fallot, Mitral Valve stenosis, chronic sinusitis, chronic ear infections,

asthma, severe allergies, GERD. Heart surgery pending (Pulmonary Valve

transplant scheduled for July 18th).

[Guest guest]

Lynne: Sorry this is so late, but we have been out of town and I am just

now getting to my 350+ messages. I have homeschooled Kaitlyn, who is ID,

sub-class2, humoral def. IgG & IgE. Her doctors said that she could not

withstand the MANY things that go around the schools. She gets 15 grams of

IVIG every 4 weeks and her energy level still runs low and she wants to lay

around and sleeps a good bit. She had to be taken out of daycare and stayed

home for 4 years before she started school. We have been homeschooling the

whole time. We start 4th grade in August. Hope this helps you in some way.

Let me know if I can help you get started with the home schooling. Is your

doctor an Immunologist? Do you have a good relationship with him? If so,

call and talk to him and let him know how she does during a day, sometimes

I think they forget how things affect these kids with ID. Let me know if I

can help you in any way. Xan, mom to , 14 1/2 & Kaitlyn, 9 1/2

school?

> How many of the PID kids go to school? Sis' Igg levels are dropping low

> again, her iron went too. The doc I thought had already signed the form

for

> homebound services. She sleeps on and off all through the day. We do a

little

> school, then she sleeps. We had an infusion on the 10th of last month,

her next

> is the 8th. Last week she started going down on her energy level. She

was

> swimming to almost an hour a day, now she doesn't want to swim at all.

> Anyway, the nurse said she talked to him yesterday, that he wanted her

to

> go to school, and have homebound if needed. Well, she can't even get thru

the

> day, without sleeping. Her homebound teacher said she does really well in

> the AM, she can teach for 1hour and 45 min. But the afternoon isn't very

good.

> She said maybe if she could go in the AM, come home at 11. What are

> everyone's thoughts? Can everyone's kids go to school? If so, how much

do they get

> sick? What level are their Igg rates?

> I'm sorry I'm throwing this at everyone, but I'm terrified of having to

> start this all over, the hospitals, etc.

> Thanks

> Lynne (mom to Sis Igg def, subclasses low, severe asthma, reflux, pseudo

> tumor. , severe asthma reflux

>

>

>

[Guest guest]

We homeschooled before we knew Rebekah's diagnosis, so I don't know how we

would have felt about schooling if she had been diagnosed closer to school

age and we had never done homeschooling before. I kind of think that God

put homeschooling on our heart very heavily before Rebekah was born so that,

after the diagnosis, having to homeschool would not seem like " another " hit

to our family. I also think that homeschooling the older two kids kept a

lot of germs out of the house in the 28 months it took to get Rebekah

diagnosed and treated!

Rebekah is coming up on 4. I can't imagine her handling an all-day

preschool program at this point. She still sleeps at least 3 hours every

afternoon...on her good days! During week 3, she is tired, easily moved to

tears and CRANKY!! (Can you tell from my typing that we are in week 3 right

now?). I don't think that she could manage a half-day program either at

this point! And the key phrase is " at this point " . I hope that, as more

time passes and she has more healthy months, that her energy and moods

stabilize too, and that things she can't do now, she could do later.

So, if she was heading to school next year, I'd be homeschooling her. She

just isn't strong enough to do school yet. But, maybe down the road, she

will be. And, if you were to decided to homeschool, it might not be a K-12

decision. You could decided year to year, based on how well she is doing.

What limits she has this year, might not be the limits she has next year.

On the positive side, homeschooling is rather fun after you get past the

" can I really do this stage " . Schooling can be spread out over morning,

afternoons, evenings, and weekends, which takes the pressure off of having

to do schoolwork only between 8:30 AM and 3PM.

Pam

wife to (16 years)

mother to , 9, Hannah, 7, Rebekah, 3, and Leah, 2

Rebekah has CVID and maybe some other stuff

school?

> How many of the PID kids go to school?

[Guest guest]

Hi Kathy E.

All I can say is......stay away....go with your gut! ANY three year old child,

even without issues, will not learn much right during their nap time! and in a

GROUP? I dont' think so. Have you ever been in a Head Start classroom? I sub

in one from time to time around here. Of course they are all run very

differently so you would need to be in the actual classroom he was going to be

in....but I can tell you that I told the director/supervisor of the one here

that I would never bring my child with special needs into the room...it simply

would not be physically safe at all!

this is a difficult transition to make....when I was doing it when my globally

apraxic son was transferring from a fantastic EI program into the public school

I felt very alone. I WISH I had had someone from outside my family saying " go

with your gut " . Putting him in was one of the worst parenting decisions we ever

made. yet other people on this list have been very happy with their decision

and recommend it. So you really have to look at your individual situation and

individual child and make what you know in your gut is the best for HIM. This

is what I would tell your daughter. best, Carol