PAM

November 4, 1999

Margaret, Some of s favorite foods are green beans, spagetti

o's, cookies,ice cream, biscuits and jelly well you get the point. She

has alot of them. Just keep trying hand over hand until he finally gets

it. And don't be afraid of him making a mess cause he will make a big

one. Also I don't know if anyones child is like my two but they love

looking at theirselves. Give him a little hand mirror to watch himself

do everything he does. We even use a mirror for potty training. Hannah

can really put on a big show all you have to do is give her a mirror and

her true personality comes out. It is so cute!!!!!!!

Pam

greysean wrote:

> Pam, On your last e-mail you said you fed her food she liked to get

> her to chew. What did she like to eat? So far we don't have anything

> he really likes but am very open to try anything. Thanks. Margaret

February 7, 2000

,

Yes my twins are identical and I posted their pictures to the ocelots but I

didn't put them in the album. I didn't know I was suppose to do that I guess.

Maybe someone can get them and put them on their for me. Yeah there is never

a dull moment around here. My husband and I are getting a divorce so I

haven't always had to do it alone. But he never really helped with anything

so I guess I was alone anyway huh? But I am doing ok. Thanks for your concern

and good luck to you too.

Pam mother to identical twins DS.

michelle offutt wrote:

> From: michelle offutt <hipchick9999@...>

>

> pam: are your twins in the club album? I was

> wondering..I wasnt aware your twins both had DS.

> I am always intrigued w/ families w/ 2 DS. guess cuz

> we have 2! Did you already mention they were

> identical?

> Well I hope to see their pics! Best of luck! I couldnt

> imagine raising 4 kids alone! You gotta be mom for the

> YR! Hugs and prayers...

>

> =====

>

> mom to Katy (11 this month) and Denton (5.5)

> both DS.

> __________________________________________________

>

February 8, 2000

where is the ocelots? i can go and check it out...

--- Pam Houser <phouser@...> wrote:

> ,

> Yes my twins are identical and I posted their

> pictures to the ocelots but I

> didn't put them in the album. I didn't know I was

> suppose to do that I guess.

> Maybe someone can get them and put them on their for

> me. Yeah there is never

> a dull moment around here. My husband and I are

> getting a divorce so I

> haven't always had to do it alone. But he never

> really helped with anything

> so I guess I was alone anyway huh? But I am doing

> ok. Thanks for your concern

> and good luck to you too.

> Pam mother to identical twins DS.

>

> michelle offutt wrote:

>

> > From: michelle offutt <hipchick9999@...>

> >

> > pam: are your twins in the club album? I was

> > wondering..I wasnt aware your twins both had DS.

> > I am always intrigued w/ families w/ 2 DS. guess

> cuz

> > we have 2! Did you already mention they were

> > identical?

> > Well I hope to see their pics! Best of luck! I

> couldnt

> > imagine raising 4 kids alone! You gotta be mom for

> the

> > YR! Hugs and prayers...

> >

> > =====

> >

> > mom to Katy (11 this month) and Denton (5.5)

> > both DS.

> > __________________________________________________

> >

October 3, 2000

Thanks ...glad to be here too.

Pam

January 24, 2001

Hi Pam,

My name is and I am also the mother of 4. My son Quinn is 4 years old, Sara and Maggie are 2 years old and baby Teddy is 2 months old. Maggie has that extra chromosome. She too is very healthy, despite a recent bout of pnuemonia. She is doing very well developmentally as far as her fine motor skills are concerned but she is still not walking. She CAN walk (we have seen her) but she prefers to crawl as it much faster. She has some words and is a pretty good signer.

Carolyn, I am VERY frazzled and my kids aren't even on vacation! I wonder what my husband would do if he came home one night and found a sign on the front yard that read, Kids for Sale...Cheap. Here is a question for all you stay at home Moms, do you ever see your husband skipping to the car in the morning on his way to work? I swear on Mondays, Dean is skipping and singing as he leaves this mad house and gets to sit in the car for his 40 minute commute and listen to the radio, think, not yell at anyone....etc..

'

January 24, 2001

>

> Sara, I was with you. I thought that Pam didn't live in the USA either.

> For some reason (Don't know why) I thought Pam lived in England.

>

That's what I thought! I am just baffled! )

Sara

January 24, 2001

Hmmmm.....England? Now I'm baffled. lol

If I were to go to England...they would laugh at me

when they heard this here accent I got going. :-)

Pam

--- Sara Greenberg <List@...> wrote:

>

> >

> > Sara, I was with you. I thought that Pam didn't

> live in the USA either.

> > For some reason (Don't know why) I thought Pam

> lived in England.

> >

>

> That's what I thought! I am just baffled! )

>

> Sara

>

> http://DSyndrome.com/Multiples

>

__________________________________________________

February 9, 2002

No! She hadn't had a treatment yet! But the treatment really helped her.

I'm afraid (how's this for backwards thinking) that they will discontinue

treatments (which helped her) because her IgG wasn't low when they tested it

the second time.

Pam

wife to (15 years)

mother to , 8, Hannah, 5, Rebekah 2, and Leah (5-11-2001)

Pam

Dear Pam,

It means the treatment is working, don't stop! This is great news. I

am

so happy for you.

Sandi

February 13, 2002

Dear Pam,

Hopefully it is good news and your daughter will continue to do fantastic.

Has she been tested for antibody responses?

You may have already heard our story but if not here it is in a

nutshell.'s Igg levels have always been in normal range but had no

response to the pnuemoccacal (SP?) vaccine. had 6 surgerys in two

years(ages 4-6), one being septic hip...all sinus related......we were than

sent to LPCH Stanford. They found the lack of antibody response, even tho

's Igg level were good they decided to try IVIG because clinically

was having difficulty with sinus infections, pain, fatigue ........the trail

made a huge diffrence in so the doctors decidded it was best for to

be on IVIG. Two years into it they did take off and he immediatly began

doing poorly.......hot joints, sinus ....so they put him back on for two more

years.

Now there is a new vaccine called Prevnar that the doctors wanted to try..so

in June was trailed off IVIG and given the Prevnar.......He did produce

some results to the Prevnar......He did really well until October. Now he

again is struggling with fatigue issues....his teachers are calling me

concerned that he is not the same kid, lack of energy, puffy eyes, headaches.

He just is not filled with the same " Tom Foolery " when he was on IVIG.

We have meet with the doc and he wants to give it more time before putting

back on IVIG. Its frustrating to sit back and not be able to help him

especially when IVIG mad e such a diffrence, but we are learning to work

around the low times and not let this disease beat us! We are also

respecting our Doctors and know without concrete, black and white results

they have to drag their feet to make sure its the right thing for the child.

We have had our Immune doc for 4 years so we have a good relationship.

We are keeping a log on how is doing, his ped checks on him (he feels

should be back on IVIG) montly for us, and the teachers will write a

report when we go back to see the Immune doc.

So I would say if you can get off IVIG and your child is doing great.....what

a blessing...no one whishs for a child to have to go thru that. But don't

give up a fight if you see drastic changes in her health in the next 4

months. It took 4 months before we started the downward cycle.

le

Ps The local paper just did a write up on my son, also has a picture of him

http://www.chicoer.com/display/inn_recess/recess1.txt

11, Selective Antibody Def., IVIG for 4 years, every 3 weeks.

Syringomyelia

6 surgeries in two years before being diagnosed: 4 sinus, tonsil and adenoids

removed, septic hip since IVIG 0 surgery needed!

Trailing off IVIG 6/28/01... Biopsy of throat and Nasal endoscopy 10/24/01

February 13, 2002

What a great article! I love reading about our pumpkins & their interests.

Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan (9 months)

February 14, 2002

Thanks for the uplifting message. No, they didn't test her antibodies and

now, since we've done one IVIG round, they can't test her for quite some

time (as I understand it). She had the prevnar vaccine at her 1 year

check-up at the same time as MMR and chicken pox and DPT and a couple of

other things. She became terribly ill from the live vaccines (probably).

We are just hoping that they will try several months on IVIG to see if it

helps. But, if they might discontinue the treatment, I don't want to put a

port in her chest.

Part of me just wants this whole disease to go away and for her to be a

normal little girl. The reality is that until Christmas, she hasn't gone 3

weeks without being sick (and often very sick) with something. She is

whiny, unpleasant and irritable even after the IVIG. She acts like she

hurts much of the time. She is 2 and so it is hard to distinguish

2-year-old behavior from sick behavior. If she would stop the endless

whining, I'd be happy to leave her in IVIG! Sorry, just venting a bit.

Rebekah is looking more tired again. Today is the 21st day since her

treatment and her tiredness and whining has been creeping up for several

days.

Pam

wife to (15 years)

mother to , 8, Hannah, 5, Rebekah 2, and Leah (5-11-2001)

Re: Pam

Dear Pam,

Hopefully it is good news and your daughter will continue to do fantastic.

Has she been tested for antibody responses?

You may have already heard our story but if not here it is in a

nutshell.'s Igg levels have always been in normal range but had no

February 14, 2002

{{{HUGS}} Pam... vent away-- I am sure we can all understand to some degree...

I know each of us has our different crosses... but that is what is so nice about

this gorup-- we can vent and complain and KNOW that everyone understands.

There are days I wish I had normal kids, too.... ho hum.....

is our whiner.. I will be praying for you. whining gets on my nerves,

too...

Pattie

Re: Pam

Dear Pam,

Hopefully it is good news and your daughter will continue to do fantastic.

Has she been tested for antibody responses?

You may have already heard our story but if not here it is in a

nutshell.'s Igg levels have always been in normal range but had no

April 8, 2002

In a message dated 4/8/2002 9:33:07 AM Eastern Daylight Time,

p_houser37@... writes:

> I am in a hurry right now but will post a update in a couple of days. You

> guys are so wonderful and I don't know where you find the energy or the

> mental power to deal with all we have to deal with. Some days I just want

> to give up.

Hi Pam,

I know how hard it can be. I think you are on the right track and things will

fall into place. I would ask the principal for a behavior consultant or also

ask for the school psychologist to do a functional behavioral assessment. I

would back it up in a letter. You could go to the office and ask him

personally and just hand him the letter at the same time. You need to have a

copy for yourself. I hope this helps.

Charlyne

Mom to Zeb 9 DS/OCD ?

April 10, 2002

Dear Pam,

I'm so sorry you are having a hard time getting Hannah in the program you

would like for her. It can be extremely overwhelming emotionally dealing with

all of this. In the past when we have had some very serious school problems

I really would have liked to sue the school district over infliction of

emotional distress.

I find that I am most effective in advocating for Brook by knowing the

special ed laws and how they affect my son's situation extremely well. That

way you know what your child is entitled to and can counter the school

administration's answers to your requests by telling them what the law states

that they must do and put it in writing. It has nothing to do with " We don't

do it that way here " if the law says they must. That's like saying they are

above the law. Hannah is entitled to be educated in the least restrictive

environment and for her that means a regular kindergarten. If she needs an

aide to succeed in kindergarten, then so be it. Don't let them argue that

they don't have money in the budget for that, that is not your concern.

If the school district doesn't give you what you are requesting and are

entitled to by law you may have to get serious and file compliance

complaints, due process, etc. You are already on the right track by

requesting the meeting with the special ed director. But, just remember this

person may not be on your side. I think it will really help you in the long

run to learn as much as you can about what your children are entitled to by

law and not to back down when the school gives you a hard time about it.

Once you have a reputation as someone who knows the law and wants the best

for your children the school will be less likely to give you a hard time.

Don't worry that they won't like you, they will learn to respect you which is

much more important. Also it won't be this hard all of the time. We have

had times that were terrible with the school district and then times that

were very good too. I find in my son's case that so much depends on the

teacher. It would be wonderful if you could find a teacher in your school

district who would be open to having Hannah in her/his class.

{{{{{{{HUGS}}}}}}

Marisa

Mom to Miles 15, Brook 12 and Genevieve 4

April 10, 2002

huh? sure i guess, i will add you to my msn messenger. shawna.

Re: Pam

Below is the result of your feedback form. It was submitted by

(SweetLily19@...) on Wednesday, April 10, 19102 at 12:16:21

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

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I hope to see you there. The website address is

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April 22, 2002

Your welcome! I'll be praying for you guys.

Sandi

April 22, 2002

Thank you, Sandi, for your comments. I knew that someone on this loop was

VERY experienced with tubes, but couldn't remember who. I'll ask about the

insurance part for the tubes.

I had never heard of a sinus CT, but the anesthesia part, although it makes

a lot of sense, really threw me for a loop. I wasn't expecting anything

more than an X-ray. It never occurred to me that she would need to be

anesthetized. He is going to call me tomorrow with more information. Now,

I have more facts/comments/background and I'll be better prepared for his

call. THANKS!

Pam

Hello Pam,

My son just had his third set of ear tubes put in, and they put in the

T-tubes. I think part of the answer to your questions involves insurance.

Often, the T-tubes can only be put in if regular tubes fail. This is what

happened to . The second set only stayed in for eight months, so

that's

why they used the T-tubes (for the third set). His insurance company

insists

on this protocol. Worth noting: sometimes the child doesn't need another

set, their ears have had a chance to heal.

Also, many insurance companies insist on a sinus CT. It is the standard

measure for sinus infection. I'm assuming he wants her under a GA because

of

her age, they need to hold absolutely still during this test. Also, the CT

is far superior to the X-ray because it shows more detail, the X-ray is

limited.

When was that age, he had to be knocked out to for them to perform

an

echocardiogram of his heart. This is because he had to hold absolutely

still, almost impossible for a child of that age (especially Bri). Since he

was about three, he has been able to do it without sedation.

I know it's hard to trust the Docs, especially if you've had a bad

experience. First of all, trust your gut. Be careful not to react with too

much emotion. Last, but not least, it seems in this instance the Doc has

carefully thought of a way to get Rebekah a sinus CT. Hope this helps.

Sandi--Mom to , age 9. Suspected IgG def., Tetrology of Falot,

chronic

sinusitis, chronic ear infections, asthma, severe allergies. Ten surgeries,

one pending.

May 5, 2002

Hi Pam,

Thanks for the encouragement. How are you doing? Did you have your PPT

meeting yet? Hope you do great. Thinking of you.

Charlyne

Mom to Zeb 9 DS/OCD ?

May 5, 2002

Hi Pam,

Thanks for the encouragement. How are you doing? Did you have your PPT

meeting yet? Hope you do great. Thinking of you.

Charlyne

Mom to Zeb 9 DS/OCD ?

May 6, 2002

After these affirming messages today, I'm feeling better about nicely, but

firmly, removing that boy's finger from my 11 month old's mouth.

I think that most Mom's have NO concept that a cold can know another kid

flat. I do feel like the germ police. I inquire about the health of any

kid we spend time with. Does anyone else carry around that Purell hand

santizer stuff? Do you think it helps? I was thinking about putting one in

the van so that we can use it every time we enter the van (like after church

or Mcs).

Pam

wife to (15 years)

mother to , 8, Hannah, 6, Rebekah 2, and Leah (5-11-2001)

Pam

Hi Pam,

I feel the same way, others can be so careless with our kid's health

issues. I had a similar experience about two weeks ago.

May 7, 2002

In a message dated 5/7/02 9:00:20 AM Eastern Daylight Time,

p_houser37@... writes:

> . I feel like I am not doing enough sometimes.

I always feel this way.

Diane

May 7, 2002

Pam:

Our immuno, back when 's levels were much worse, told us to carry Purell

with us everywhere. We would use it before every meal and after every

contact-intensive experience, such as being at a park or in a restaurant (not

after every activity but when you're done and on your way home). At the time

we also would clean off restaurant tables (just in front of ) the second

we sat down, though we don't do that now that she's better. Same for shopping

cart handles. But she was at her worst when she was mouthing everything, so

it was necessary and I didn't care how it looked to others, nor did I explain

unless I (almost never) got a smart comment from somebody.

The other thing that seemed really smart was, you ALWAYS wash your hands or

use Purell the second you walk in your front door. Before you touch anything.

Every family member and visitor. That way, all those germs you've accumulated

(the elevator button, public door handles, etc.) get washed off before you've

spread them onto surfaces in your house. It just gets to be a habit, no

biggie. Again, we are much more lax about this now, but feel we can be.

When was unprotected (def. system and no treatment), those were our

only defenses.

Now that she's better, we make case-by-case decisions about things like sick

family members at an important occasion, things like that. When she was more

vulnerable, we needed to know about any and every sniffle from everybody, and

I can't even count the number of functions we've had to miss at the last

minute. Now we go if it's a really special occasion and someone is not too

sick, maybe a cold but not the first worst days of it. Then we bring the

Purell and hope for the best. We just decide whether it would be worth her

catching whatever it is, assuming she will.

(mom to , age 3, polysaccharide antibody def)

May 7, 2002

Hi Pam,

We do use the Purell, but only rarely. 's Ped feels that this is a

good back up when hand washing isn't possible, but can cause resistant germs

to start growing. So, we use it only when we can't wash our hands.

Sandi

May 7, 2002

I haven't seen the Lysol wipes! I'll have to go look for them. I was

planning on getting a bigger purse to carry a thermometer and some tylenol.

Now, I can pack hand sanitizer and lysol wipes, too.

Pam

wife to (15 years)

mother to , 8, Hannah, 6, Rebekah 2, and Leah (5-11-2001)

Re: Pam

Pam, hand sanitize goes every where with us! And I just LOVE the lysol

wipes!!! Those are so awesome! The school even uses those wipes around

the classroom (they wipe the tables, chair backs, door knobs etc)

frequently when Kody is there. I take the lysol wipes and put them in a

travel diaper wipe container, and pop them out and wipe of the tables

and chair backs at restaurants etc. Can't be too careful with our kids!!

I also use them to wipe of the rest room door knobs, latches, faucets,

etc. of public rest rooms. Most of the time people don't even notice,

and if they do I just laugh and good naturedly tell them I don't have a

mental problem, my son has an health problems and I just can't take the

chance that some one that was sick touched the faucet before my son!

Most just nod and smile at Kody, who beams up at them, and they forget

all about me!! Lysol wipes are great for wiping toys off too....

Diane Mom to Kody

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.

May 7, 2002