Sis

[Guest guest]

the lung puncture will effect the peak flow but not in the same way an asthma

attack will so the xopenex probably won't

do you much good. Let us know what the pulmo says.

Ursula Holleman

Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Sensory

Integration Disorder, Diabetes Insipidus, colonic

inertia)

http://maceyh.home.att.net

/

[Guest guest]

Lynne,

I am so sorry that Sis is having such a rough time. Can you take her back to

the doc to have a recheck? Maybe they can see something now that was not as

apparent before. We will pray for you and your family to give you all the

strength you need to get back on the road to recovery. Keep us posted as to

how she is doing.

Belinda Rose,

Cassie's mom

[Guest guest]

Belinda Rose,

Thanks for replying. We go to the pulmo for infusion in a couple of days,

I'm gonna pick their brains good.

Lynne

[Guest guest]

,

Thank you for replying. The pulmo did suggest the ER, but with her immune

status, she said we would be risking a lot more, plus have whatever doc we

get, which could be good, or bad. She said she feels really confident that

the nuero will get us in sooon.

She woke up this AM throwing up with another headache as usual. Crying

that she so wished someone could figure out what is wrong with her.

Yesterday the pulmo called in midron? said that may help. I give her

half a capsule, it's powder inside, fun time trying to separate and half that

one! She just got it, so we don't know yet how it's going to work. If not,

then I give her 650mg tylenol, with phenegren, and 1/2 tab of psudo

ephedrine. Is that enough to knock a horse over or what. I asked the nurse

four times if they were sure.

Thank you for thinking about her.

Lynne

[Guest guest]

In a message dated 12/27/02 6:39:45 AM Pacific Standard Time,

Bejenski@... writes:

> I'm gonna pick their brains good.

>

Go, Lynne!!!! Please let us know what happens.

Sandi, 's Mom

[Guest guest]

Lynne,

I agree with the others about taking Sis to the ER. Generally, the

hospital can be a dangerous place for our kiddos. But we have to outweigh

the risks vs. the benefits. If Sis is in that much pain, I would definitely

take her. I suffer from horrible, brain splitting headaches that I wouldn't

wish upon my greatest enemy. I have even had Encephalitis--I don't mean to

scare you, it's just that if I had gone to the ER sooner, I wouldn't have as

much brain damage. Pain sometime serves a purpose--better to err on the side

of caution. I do hope she is feeling better soon, and the new meds are

working.

Sandi--Mom to , age 9. Suspected IgA def., Tetrology of Fallot, chronic

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

surgeries, heart surgery pending.

[Guest guest]

Lynne,

I forgot something, as usual. It seems I cannot remember everything in one

e-mail. With my most severe headaches, I use ice. I put it in a ziploc and

hold it on my head. The pain is a little worse at first, and then it always

gets better. The ice helps every time.

Sandi, 's Mom

[Guest guest]

Re: .> Today I finally got an appointment with a neurologist. It isn't

until the

> 10th of Jan, but we are number one on the cancellation list.

Can't they see her at the ER? It doesn't seem right for a little one to

have to wait for a neurologist for 2 weeks with those symptoms! I can't

believe that can't fit her in sooner (can you ask to talk to the office

manager?). I hope she gets better soon.

[Guest guest]

Sandi,

Thank you for replying.

Lynne

[Guest guest]

Rebbeca,

Yes, I would welcome web sites with help! She says it hurts in the back of

her head and on top.

Thank you for replying.

Lynne

[Guest guest]

How's Sis doing?? I've been thinking about her and hoping she's doing better.

(mom to Kate, born 9/19/02; and , age 3-3/4 -- currently has

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

other defs)

[Guest guest]

We've done the MRI, saw the pressure, did a spinal tap, drained the fluid,

been on meds to keep the body from making so much, then the test Wednesday,

MRA/MRV, it came back normal.  The only thing they haven't scanned is her

spine.  So I don't know if the problem could be there or not.  We have

everyone from all over the states praying for her, so maybe us not finding

anything is Devine Intervention, the LORD has done it before with her.  I

have not talked to the neurologist yet to see what he thinks the next step

would be.   Her neurosurgeon at least is back in town.

    At least she's not having the headaches, body aches, etc. She sure gets

tired easily though. I was finally successful in getting a wheelchair for

her, that was driving me crazy! We have to rent it, but hey, it's worth it.

Thanks for the continued prayers.

Lynne

[Guest guest]

:

Thank you so much for replying. I am so glad I'm not the only one out

there with this problem. The shirts with the not so cool " logans " on them for

our little girls is a big one too, so is the sleeves being ten feet too long.

So far I've just pushed them up, but I'm afraid I'll be doing some sewing on

those this year for school. You would think some clothing people would wake up

and make clothes for our kids that are not the " norm " one size fits all.

I was taking lots of big breaths yesterday, just about every day in fact.

But it also helps for someone to tell me to calm down, take a big breath.

Thank you again.

Lynne

[Guest guest]

Hi Lynne,

I am so sorry to hear of all that Sis is having to go through right now.

Please know that we are praying for you guys and hopefully they will find

the source of all her pain.

Please keep us updated on how things are going.

Belinda Rose,

Mom to Allyssa (11) and Cassie (8), igg immunodeficient, asthma, sinusitis,

IVIG for 6 years, heart condition

[Guest guest]

In a message dated 8/10/2003 12:04:10 AM Eastern Daylight Time,

Bejenski@... writes:

> Okay, I'm off my box now. Thank you for letting me " vent " . Scream,

> scream, scream.

> Lynne'

Aww, Lynne. Don't know what to say other than lots of prayers and love going

your and Sis' way. As for Nemo clothes, did you try Disney stores either in a

mall or online? They might have adult Nemo t-shirts or something. I would

think there is more going on than her making it up too, I hope that you can

find

someone for a second opinion that works with your insurance etc.

Diane, Mom to Kody age 7, Di Syndrome, Hypogammaglobulinemia, epilepsy,

asthma, chronic encopresis, severe learning disabilities also Mom to Arika

age 15, Kaila age 12, and Sami age 9 (dyslexic). Check out my website at:

(www.geocities.com/schmidtzoo/SNAK.html)

[Guest guest]

In a message dated 8/10/2003 8:51:54 AM Central Standard Time,

kfrajerman@... writes:

> As for the kid stuff.....Sara always thinks the kids are laughing at

> her,and that they dont want to be her friend and stuff like that.

>

I'm sorry you're having such a tough time right now. Hang in there!!! Keep

screaming in that pillow, it can't hurt!

Like Sis and Sara, always thinks anyone who is laughing is laughing at

her. We'll be somewhere and some kids will be talking to each other and

laughing (they don't even see us) and thinks they are laughing at her.

Even if

you're watching a movie or show WITH her, if you burst out laughing at the

show, she gets really mad that you're laughing at HER. I think it's a kid

self-centered natural phase.

It's a little early to introduce these concepts to kids this young, but I

wanted to mention (for the future) some of the ONLY nuggets of wisdom my mother

passed along to me (not mother of the year, that one!): " Who knows you " (she

meant, you don't know these people so you shouldn't care what they think...

though I'm sure it could be phrased a little nicer), and " you'll never see these

people again as long as you live " to help cope with embarrassing incidents or

even just feeling self-conscious in public.

Get someone to watch your kids for one hour and get out of the house and do

something for yourself. I know that recharges my batteries enough to start

fresh.

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4-1/2,

GERD, dairy intolerant -- currently has polysaccharide antibody def, previously

had transient IgG, IgA, t-cell & other defs)

[Guest guest]

In a message dated 8/10/2003 4:32:45 PM Central Standard Time,

SNAKpackmomma@... writes:

> there is more going on than her making it up too

Oh, Lynne I forgot. About making stuff up. I am a pretty sensitive and

empathetic mom, I think, yet I still once in a while think must be making

something up. Turns out, the few times I've ever thought that (really, it wasn't

many, I'm not a horrible mother!!!!), I was WRONG!!!!!!!!! So now even if I

think that I proceed with non-judgmental discussion with her. My point is, I

really doubt your daughter is making the symptom up.

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4-1/2,

GERD, dairy intolerant -- currently has polysaccharide antibody def, previously

had transient IgG, IgA, t-cell & other defs)

[Guest guest]

"

Thank you for replying. This morning we go to the neurologist, so he can

tell me all the things she's doing is made up. Her pulmo said if he does not

satisfy me, we'll get a second opinion from thhe ped neuro's a floor under

them.

Thanks,

Lynne

[Guest guest]

Diane:

Thank you for replying. There is a Disney store in this huge mall about an

hour from us. I'm a real chicken about going to big places like that though.

Maybe there would be something online.

Thanks again.

Lynne

[Guest guest]

Lynne:

This might be too late to catch you before the appt. But I was thinking, if

the neuro has the attitude that she's making it up, rather than get defensive

(the most natural reaction), try to remain very calm and professional and

clinical and say something like, " I can understand you thinking she must be

making

this up since it has been difficult to pinpoint a cause. However, she is not

the type of child to make things up, she has really never done that. So I'm

concerned there is something else going on. "

That sentence validates his opinion, addresses it and politely suggests

further efforts in the best interest of the child.

I have found that by acting very calm and practical and unemotional, the

doctors treat you with much greater respect -- you're not a hysterical mother,

but

rather, someone who's trying to find a scientific reason for something that's

happening.

Hope that's not too preachy, just wanting to help!

Good luck at the appt --

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4-1/2,

GERD, dairy intolerant -- currently has polysaccharide antibody def, previously

had transient IgG, IgA, t-cell & other defs)

[Guest guest]

"

misspelling, no sleep. Yes, I didn't get to the message until tonight.

He gave me the same song and dance routine. I asked him nicely how she can be

making up the swelling that makes her forhead swell, he shrugged. He said

there really isn't anything they can do, or look for, at, until she has these

symptoms all the time, like in Dec. when she had the psuedo tumor show up, she

had a migraine that morphine wouldn't touch. He said then they will have a

basis to look further. I told him I was hoping we didn't have to wait until it

got that bad.

Thank you for trying to reach me though, and for replying.

Lynne

[Guest guest]

Okay everyone, I'm going to vent, so ready yourselves for the wind:

Sis started out the schoolyear going for four hours a day until we see

how she handles it. When I pick her up she is exhausted. She wants to go home,

eat dinner right away, go to bed. I keep telling her we can't eat dinner at

3pm. In the ARD, I explained to everyone about all her meds, her pseudo tumor

celebri, etc. I informed them she would need to have plenty of water, I

would be sending a water bottle with her (she cannot drink our cities water).

Also that she would need very frequent bathroom breaks. The meds for her pseudo

tumor I'm guessing has lasix, she has to go every ten min. So the first week

she did okay, then the beginning of the next week, she comes in crying that

she didn't get any breaks, I had also noticed her water bottles come home not

even half empty. She said the teacher wouldn't let her go potty, that she went,

then had to go again, the teacher said no. Then a parent called me, she

said her daughter was telling her how this little girl that can only drink out

of

her water bottle, the teacher's were telling her no. They have also put her

in a " special " reading and math class. I made an appt. to conference with the

teacher. She didn't have time to talk when I got there. I asked why she's

been put in a " special " class. She stated because she's been homeschooled. I

informed her no, she's been homebound, a teacher has been coming to our house

for the past three years. Then she said, well, then she didn't take the

required tests. I checked with her teacher last year, she said, yes, she had

taken

all the required tests, in fact had even scored a 3.5 on them. Above

average, she said Sis should not be in these special classes, especially the

reading

one. She even said to tell the current teacher, or whomever made these

decisions to call her. No one was interested to call her. No one will talk to

me

either about the reasons. Her current teacher started out the first week

sending the copy of her lesson plan book home with Sis, so I could see what

she's

doing, therefore, to keep Sis on track with the Science, Social Studies,

spelling, language arts, with the class. The second week she only copied what

I'm

teaching. Knowing Sis had the infusion coming up, that she would be out the

rest of the week, so I would be teaching her all the subjects. At this school,

you as a parent can not go talk to the teacher, before, during, or after

school. Only if you make an appt to have a conference with them. So I had to

go

thru the secretary, asked her if I could get the copy of the other two

subjects, so I could teach her at home to keep her on task. They got all out of

whack. The teacher got out of whack. Finally I went ot the principal, he got

it

for me. On the plans, she had them making two books, they had to copy from

her origianal. I asked, a couple days after she had it on the plans if we

could use it. The teacher wrote me a letter saying having to keep up with 21

students, plus, having to put up with Sis being gone, or being pulled out of her

class for these other " special " classes is too much for any teacher to have to

do. Okay, now it's Friday, I went in at the end of the day to get the lesson

plans for next week. Have to go thru the sec., she said, " why do you need

the lesson plan? " I told her the teacher sends it home every friday so I can

set up my stuff to teach her what I teach. She again, " well, you don't the

lesson plan " . I politly asked her again, to just call the teacher and ask if

she

had it ready. She said she'd walk down there. She came back, said that the

teacher told her she has done everything she is going to do. So I walked out.

ON the way out the principal was coming in, I relayed what was said. He said

he would see what he could do, and have a good weekend. So I am soooooo bent

up inside that I can't get this school to do anything. Oh, on her infusion

day, my dad went to pick up my son. He got there at 2:30, I called and told

them he was there, could they call and get him ready. The sec. said, why is he

here so early, he doesn't get out until 2:50. I told her my dad works, he

didn't have time to wait. She was still arguing with me. So I asked her if I

was going to have to go around her, or was she going to call. Last year he went

to work with my husband. We have to leave here at 5am to get to the infusion

place by 7:30. They had a fit last year, I asked them if they wanted him at

5am, well no. So at least this year I'm trying to have him there. I went to

the principal again, I asked him, would you rather he be there until 2:30, or

not at all. He said till 2:30.

On Friday, Sis' nose was gushing blood for 30 minutes, I couldn't get it

under control, I was on the phone with the nuse. We finally got it stopped

without going to the hospital. They said she's doing that probably because of

her pressure coming up again on her brain, she's been seeing double also. So to

have to deal with the school acting like that too.

Some people have told me I need to call an ARD. But that if I do, it's

going to make everyone really mad at me. Well, I'm not here to make friends,

I'm here for my kids right now, and forever. So, what is everyone elses'

opinion? ARD, or what?

I'm sorry to make such a long letter, but I feel like I'm about to explode!

Thank you.

Lynne (mom to Sis: Igg def, subclasses low, severe asthma, reflux. :

severe asthma, reflux)

[Guest guest]

In a message dated 9/6/03 9:25:29 AM Pacific Daylight Time, Bejenski@...

writes:

> So, what is everyone elses'

> opinion? ARD, or what?

Lynne,

Does Sis have an IEP? That would be my first move as a parent. You could

also change teachers, it's early enough in the year, and this one doesn't seem

to be able to handle Sis's special needs. She also doesn't seem to

understand that Sis's special needs are purely physical and she does not have a

learning disability. I struggle with this issue from time to time with my

son--people assume that because he has physical challenges, he has learning

issues as

well. He does not.

I would also get letter(s) from Sis's Ped or specialist. was just on

Lasix and he had to pee all of the time. If she is on steroids of any kind,

that will also make her have to go. I think with an IEP, they wouldn't be

able to pull this on you because all of this would be spelled out on the IEP--in

detail. If you call ARD, will they help you resolve this with the school, or

be your advocate in writing an IEP???

Sandi--Mom to , age 10. Immune Deficiency, Tetrology of Fallot, Mitral

Valve stenosis, chronic sinusitis, chronic ear infections, asthma, severe

allergies, GERD, Pulmonary Valve Transplant--July 18.

[Guest guest]

Hi ,

We are also trying to develop a 504 plan for who is now out of

school because she is having allergic symptoms to something in the school at

this time. Does your mom know of any resource books that we could use (or that

she used) to develop a plan. All the information seems to be on IEP's and

that is what I am now reading, but I know that the 504 is a civil rights law and

may need to be worded differently? We have an ed consultant but she is not

used to handling 504s. She has mainly dealt with IEP's

--Martha

[Guest guest]

Dear ,

Thanks so much. I was even wondering if a bunch of us should

collaborate and try to write a sample PID 504 plan for the PID website once we

are

done. I noticed that the diabetes organization have a sample 504 plan that can

be

tailored to an individual's needs which they have posted on their website.

--Martha