PAM

[Guest guest]

In a message dated 8/21/2002 9:32:45 AM Eastern Daylight Time,

p_houser37@... writes:

> Just wanted you to know you can get the good nites through medicaid.

Hi Pam,

Thanks for the info on the goodnites. I am not certain that Ct. has numerous

suppliers but I will check. What a mess I had this morning, yuck!

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

I'm sorry you are having such a time with the new diapers.

I guess it varies from state to state. But well worth looking into when you have

the time. Here's hoping you don't wake up to another mess tomorrow.

Pam

charlyne1121@... wrote:In a message dated 8/21/2002 9:32:45 AM Eastern

Daylight Time,

p_houser37@... writes:

> Just wanted you to know you can get the good nites through medicaid.

Hi Pam,

Thanks for the info on the goodnites. I am not certain that Ct. has numerous

suppliers but I will check. What a mess I had this morning, yuck!

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

In a message dated 8/21/2002 2:37:59 PM Eastern Daylight Time,

p_houser37@... writes:

> Here's hoping you don't wake up to another mess tomorrow.

Hi Pam,

I'll second that, thanks.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

Dear Pam

Sorry for the long delay in answering, but my wrist didn't let me do much

typing and my brain seems to be conking out too!!!

As to my diagnosis, symptoms, etc.,

On mother's day in 1999 I felt a small, somewhat painful bump in the area of

the right neck/throat. Due to work, I couldn't get to the doc until Tues

night. At that point he diagnosed a sore throat, took a swab and gave me a

prescription for an antibiotic. (I still had no fever and only very mild

pain.) I went to the drugstore to get it filled and suddenly began to feel

very feverish and dizzy. I immediately went home, got into bed and sent my

husband to pick up the med. I called the doc in a few days as I could not

get out of bed without help, and my urine had turned a bright orange. I

went back to see him and he sent me to get some blood work. He could see

that I couldn't walk from the waiting room to his office without his help.

(My husband was finishing the paper work which I couldn't do), but he still

sent me home. He decided that I also had a urine infection that the med

would help. By then I was also beginning to get rheumatoid symptoms, but he

didn't pay any attention to that. A few days later I noticed that I had

turned yellow. I again saw him and this time he sent me for an MRI of the

liver, discontinued the med, but still would not hospitalize me. My fevers

were getting worse, I could not get either of my hands out of a claw like

position and could not bend my left leg. Walking without holding onto my

husband's shoulder was out of the question. Finally on a Wed (when he was

not available) my husband called a covering doc and explained my situation,

pain and myriad of symptoms. He immediately hospitalized me and all of the

specialists started seeing me. They drew enough blood over the next few

days to take care of a battalion of wounded soldiers. My doc was quite

upset with me for being in the hospital. (It wasn't like I was always

there, as a matter of fact, I had only been hospitalized 4 times in my

entire life-twice to give birth, once as an infant with infantile diarrhea

(before the days of Penicillin) and once for a urinary tract infection when

I was pregnant with my first). Anyway at first they thought I had 2

simultaneous, but unrelated, diseases. By the time I was hospitalized I

also had sensory changes to my vision, taste and hearing. While there the

attending Rheumy came to see me. He was the one who tentatively diagnosed

me as AOSD. I was very lucky, as he had gone to a lecture by Dr. Cush

(leading US authority on ASOD) at Stony Brook Hospital (our local teaching

hospital) about a month before he met me, and the symptoms were fresh in his

mind. He immediately started me on Prednisone, intravenously and drained my

knee. (I couldn't go on any of the other meds because of my jaundiced

liver). When my doc saw the improvement the next morning, he immediately

discharged me. It was a Sun. and he didn't tell any of the other docs

(including my Rheumy). His discharge instructions were very bad, as he had

me decreasing my Prednisone as if it were a pack for asthmatics. The only

correct thing he did is tell me to make appointments with the Rheumy as soon

as I could. He did not believe the tentative diagnosis saying " they are

always looking for the exotic. "

Anyway I wound up with a great Rheumy who listens to me and spends a lot of

time. You have to be willing to wait in his waiting room, as he is always

running behind. A few days ago I had a noon appointment and didn't get in

till 1:45. However, he never rushes anyone out, so that's what happens and

I for one, don't care. He is the only doc I have ever had that has called me

at home, on a Sat., to tell me he has been thinking about the plans for my

care and wants to make a suggestion!!!! He will always call back on any

message I leave for him (although sometimes it will be quite late at night

as he is running late).

As to the Pred. It took almost 18 months to go from 65mg to 0 and then it

only lasted for 1 month and 10 days. I had to go back on to 10mg, and it

took 12 months to wean off that. I have been off for 6 months. I keep

getting bursitis that is very persistent. It runs a painful course of many

months in each site and then the pain subsides. We try different meds, but

no real help with any that I can tolerate. I have also gotten a secondary

diagnosis of Fibromyalgia. At this point I take lots of vitamins, minerals

etc. go to PT 3 times a week and Chiro. twice a week. I take Naproxin as

needed to control the wrist inflammation and meds for blood pressure and

cholesterol.

I hope that this wasn't more than you wanted to know, but once I get started

it's hard to stop. By the way I do have a new primary doc, that my great

Rheumy recommended. He too listens to me, even though he has a very busy

practice and can't just chitchat.

As to the children/grandchildren. Mine live outside of Seattle in Bellevue.

They have been there for about 3 1/2 years. My son-in-law was recruited by

Microsoft from his job in Israel. (my grandson was born in Israel). My

older daughter and son-in-law (no children) live in south Florida. My

mother-in-law lives in San Diego and we live on Long Island in NY, so we do

a lot of traveling just to see everyone

Take care

Ann K

Re: Pam

>

> Hi Ann,

> Thanks for writing. Boy am I envious of your early retirement, though I'm

sorry it was due to your health. Your travel experiences sound wonderful,

and your future plans are definitely something to look forward to.

> I would love to hear how you got to your Stills diagnosis? Your symptoms

.... was it also a series of infections, fevers, etc? And what medications

did you take, or are you still on.

> And, we have family in common in Washington ... our son and

daughter-in-law live in Seattle, though we don't have grandchildren there

yet. Our granddaughter belongs to our daughter and son-in-law who live in

Southern California. Little Ema Kate!They are precious wonders, aren't

they!

> I look forward to learning all I can by everyone's experiences and hope

you maintain good health.

> Pam

> annjohn wrote:Pam,

> Welcome to the group, but sorry you need to be here.

> I too was 54 when I first came down with this dragon. I had to take early

> retirement because of it, but now at 57 I do not regret that part. This

way

> I get to enjoy my 2 grandchildren occassionaly. They live in Washington

> state, and I live in NY. I also get to travel a lot more. I have decided

> that I don't know how bad my body will get, so for now, whenever I am able

I

> try to get out and about. We just came back from a 4 week trip (2 in

Alaska

> on a cruise and a week before and after in Washington visisting the

> grandkids). We have already booked the next cruise (I do find them one of

> the least stressing ways to travel). It will be in Dec and will go to

South

> America and through the Panama Canal.

> I know I'm the oldest one to be diagnosed here. I too wonder why my body

> picked this way to tell me I'm really younger than I think!!!!

> Ann K

>

>

>

[Guest guest]

In a message dated 9/10/2002 5:50:20 PM Eastern Daylight Time,

p_houser37@... writes:

> I have a birthday on 9-11. I will be the BIG

> 4-0.......eeeewwwwwww....aaaahhhh!

Hi Pam,

A big happy birthday!!! 40 is better than 50!! LOL

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

Candy, I have her link saved and really enjoy the site..thanks for helping

me with the jars. I've seen so many and actually got the calculator out

today to check prices..every penny saved helps. Thanks a bunch!

Pam

[Guest guest]

I didn't read about it. When the home health nurse came, she had to leave

for about an hour and a different nurse came. She told me that she was

treating an IgA man near here with IgA replacement therapy. I asked her if

she meant IgG replacement therapy and she emphatically said, NO, it was IgA.

I told her I had never heard of that and that the man must be very sick to

get it. She said that he was extremely ill and that the drug cost $10,000

per treatment. She joked that she was afraid of having a wreck on the way

to the man's house and losing the drug.

I'm sorry that I can't offer more info. It just surprised me since I was

told that there was no treatment for IgA.

Pam

mom to 4

Pam

In a message dated 11/1/02 8:13:50 AM Pacific Standard Time,

pmork@... writes:

> I heard yesterday about a patient locally that was getting an IgA

infusion.

>

Hi Pam,

I think this is of interest to all of us who have kids that are IgA

deficient!! I would love to research it--where did you read about it? Any

info would be greatly appreciated.

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]

Thanks Pam!!

At least that gives me some information to go on! I'll post if I find

anything!!

Sandi, 's Mom

[Guest guest]

Patti, the only way I know how to get through it is a deep breath and one day

at a time. Learn what you can and then decide what is best for the boys. You

have choice generally of how you give the IVIg. For us it has been a GODSEND.

I would not go back to the days without it. Today is IV day and I got up

dreading it only because it is a hassle and takes time and I am feeling sorry

for myself and Lucas to have to deal with it. But....... We do make it a

very special day for Lucas and he is KING of th Day and amazingly he does not

give us any problem with it. I need to go to work but I would be happy to

detail our day if it would be helpful. Barbie ( Lucas 6 , CVID, IVIg Bipolar)

[Guest guest]

Pam:

You mentioned Rebekah sits on the couch and eats M & Ms on infusion day. Just a

thought -- chocolate can trigger migraines for some people. Could

substituting a different treat maybe help with the headaches?

Also, if you're going to have M & Ms, put them in a coffee cup and heat them in

the microwave for 10 - 45 seconds or so (less at first depending on the

strength of your microwave and keep upping it until the outer shell just

barely cracks) -- once you have them this way you'll never eat them " raw "

again!!! YUM!

(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]

Barbie, please do detail your day. OI want to know the details. I am scared to

death. The HEM made me feel better about te side effects/risks-- she said it is

chemically treated and it kills viruses, etc..... she gave us two options-- we

could do a trial of IVIG and see if it helps or we could see teh ENT and see

what he can do for the boys. I am hoping against hope that the ENT can help

them. The immuno has already done everything, so has the ped....

we will see.

Pattie

[Guest guest]

Now that's odd because I can't stand semi-melting M & M's!

She doesn't eat a lot. She gets a small bag, but we could try substituting

a non-chocolate treat and see if it helps. Thanks for the suggestion.

Pam

wife to (15 years)

mother to , 9, Hannah, 6, Rebekah, 3, and Leah, 1

Re: Pam

Pam:

You mentioned Rebekah sits on the couch and eats M & Ms on infusion day. Just

a

thought -- chocolate can trigger migraines for some people. Could

substituting a different treat maybe help with the headaches?

Also, if you're going to have M & Ms, put them in a coffee cup and heat them

in

the microwave for 10 - 45 seconds or so (less at first depending on the

strength of your microwave and keep upping it until the outer shell just

barely cracks) -- once you have them this way you'll never eat them " raw "

again!!! YUM!

(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]

Ok here is our day. Actually we start the week before. Keep in mind that

Lucas has severe anxiety, and panic attacks, he also gets very physically and

verbally abusive when he is swinging his moods. So it is often the third week

that we have the extreme mood changes. We know that the third week is when

he is fatigued and we often miss days of school because he is so tired and

behavioral. We begin by thinking about what toy he is going to get this

time. ( UP to $10.00 but usually around $5.00) He may look on the computer or

magazines or occasionally we go to the store. Then we purchase his toy. (

Legos, Cards, a game, a movie or coupons to rent etc. ) So we build up good

anticipation. We have also had long discussions about the Gamma Armies that

help him fight infection. The night before he chooses what he wants in his

lunch and we buy a candy treat and a soda with caffeine to help his

headaches. ( He does not usually drink any caffeine. We put on the emla with

saran wrap about an hour and 1/2 before his infusion and then leave to the

Doctors office. We have always told him that there are some things in life

that there are choices and this is not one of them. He can cry if he needs

but he has to sit still. He sits in my lap and I hold his arm and we start

the IV. This is what we have been doing for 2 and 1/2 years and yesterday he

went in and daddy had put the emla on the wrong site and he said owww twice

and then we were in. The rest of the day which is about 5 hours he reads,

plays gameboy watched movies, sleeps or just plays with his new toy or legos.

We eat and eat and eat. Popcorn, candy, etc. etc. Now I need to admit that

10% do not go that smoothly but when that third week roles around and he is

not feeling well it very quickly understands that he will be feeling better

when he gets his infusion. We considered a port but our immuno was insistent

that we try in and out first and only once did we consider it again when he

was having a very tough time with his IV starts because of oral prednisone.

It will take atleast 6 months to see a good turnaround. We still go through

phases when he needs to be upped to a higher dose that his illnesses

increase. Yes, I worry sometimes but I know that we are doing all we can and

so that is all we can do. Atleast his overall quality of life has improved

and we go to the dr. every 3 weeks not 3x a week as before. I think Lucas

would be happy to talk to your boys if you would like. He will be 7 in two

days . I cannot believe it. He was 4 and 1/2 when we started. Yes I do get

tired of it and wish we could be just normal but that is not reality and we

make the best of what we have and I cannot tell you that I could love a child

anymore than I do mine. Hope this helps. BARBIE ( Lucas, 6, CVID, IVIg,

Bipolar)

[Guest guest]

Barbie-- wow.

I would love to be going to the doctor only once every three weeks instead of

2-3 times a week.....

That would be amazing. I have not even told my boys about IVIG yet. Once we

talk to the HEM on the 31st, we will talk about it. ph has too much

anxiety, so I probably won;t tell him a whole lot. He is 5 ad has OCD

tendencies-- he starts therapy in Feb b/c after his last bone marrow biopsy, he

seems to have gotten worse. He does not handle medical procedures very well....

so at least we will have a psychologist to help us as we go through all of this.

Pattie

[Guest guest]

In a message dated 1/2/2003 5:56:41 PM Central Standard Time,

pmork@... writes:

> The immuno said it wasn't, but maybe it was, but

> probably not, but definitely! Seriously! The immuno flipped around several

> times on whether IVIG was the right treatment.

Heeheehee! Do we have the same immuno??!!!

Our immuno flipped on infection control measures. She had us doing so many

things to keep safe (bleaching the swings at the park before putting

her in them, washing off restaurant tables and cart handles, etc.) and then

when her numbers came up she basically laughed at us for having been doing

all we were doing (when she was the one who told us to do all of it). I just

sat and took it because she's the type to hold a grudge if you talk back, but

boy was I aggravated!

(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]

Pam:

We have a LOT of experience with Omnicef. We've been using it for sinuses

ever since Ceftin and Cefzil stopped working. It's also a cephalosporin. The

first thing to remark to you is that it causes red poops. Before they

" admitted " this on the side-effects literature, it was sort of unnerving!

The next thing would be that it used to be (in our practice at least) a

seldom-used drug, which was great because the local bugs didn't have a chance

to become used to it. But it sounds like more and more docs are prescribing

it to more and more people, so I'm sure it will lose some of its

effectiveness at some point.

For now, though, I'd say it's a great, wide-spectrum drug. likes the

flavor and it doesn't cause quite as bad diarrhea as many abx (but may still

cause some).

(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]

Ah, what is acidophilus?

Thanks for all the advice about omnicef.

Pam

wife to (16 years)

mother to , 9, Hannah, 6, Rebekah, 3, and Leah, 1

Pam

Pam,

frequently takes Clindamycin for his sinus infections. Generally,

he

does well on Cephalosporins--although he is allergic to a few of them. I

think the sinuses react well to this class of drugs because it is an

anaerobic drug. Two things I can think of. One is, be sure to give (with

the Ped's permission) Acidophilus during the time that you are giving the

Omnicef. Cephalosporins can be very hard on the gut--'s Ped makes sure

his Moms also give Acidophilus.

[Guest guest]

Yikes, RED POOP! No one mentioned that side effect to me. The local drug

store had trouble supplying the liquid form so I WAS hoping that it was

rarely prescribed. Does anyone think it odd that my ped wants to keep her

on it until summer? Summer up here is June!

Pam

wife to (16 years)

mother to , 9, Hannah, 6, Rebekah, 3, and Leah, 1

Re: Pam

Pam:

We have a LOT of experience with Omnicef. We've been using it for sinuses

ever since Ceftin and Cefzil stopped working. It's also a cephalosporin. The

first thing to remark to you is that it causes red poops. Before they

" admitted " this on the side-effects literature, it was sort of unnerving!

The next thing would be that it used to be (in our practice at least) a

seldom-used drug, which was great because the local bugs didn't have a

chance

to become used to it. But it sounds like more and more docs are prescribing

it to more and more people, so I'm sure it will lose some of its

effectiveness at some point.

For now, though, I'd say it's a great, wide-spectrum drug. likes the

flavor and it doesn't cause quite as bad diarrhea as many abx (but may still

cause some).

(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]

Kathi,

Thank you for your kind words they really mean a lot to me. Most days I

myself wonder how I can possibly do it all, but then I don't think about it

anymore and just do what I can. My sons are getting older now (12, 9, & 6)

and so it is much easier. I have always taught them to be as independent as

possbile and to help out with the family chores, we are a team, I'm their

mom not their servant. It would be much different if I had to one child,

but they have each other, and they are very close.

Sometimes I think it would be nice to have a job to get away for awhile, or

go to the gym ( I have a home gym), go to lunch with the girls..... I could

go on and on. My school is online, and eventually when I graduate I will be

working from home also. Believe me there are some days when I declare

" Fieldtrip " just to get out of the house for awhile. I don't think that

being a homeschooling parent necessarily makes for a " better " parent, just

one who has chosen a different road.

Oh, and man does workin out really help out with the stress levels, whew! My

boys like it when mom gets her workout in, I'm so much nicer to be around

; )

Enjoy the journey,

Pamela

Any stay at home moms here?

> >

> >

> > > Any one here a stay at home mom? That is why I am getting to the

> > > computer so much. I am becoming a nerd like my husband. (hey, he

> says

> > > he is a computer geek all the time!) I catch some computer time

> > > pretty often lately, hey I really do pay attention to my kids!

> > > Kathi

> > >

> > >

> > >

[Guest guest]

We tried public school and had serious problems with Ashton. She is dyslexic,

but extremely intelligent. I was lucky to find a teacher who taught me to

teach her. She was getting her grad. degree in working with dyslexic children.

You would hardly notice it now. When she is sick, she is worse. We have her in a

small, but fairly inexpensive private school. They are great in working with

us. I teach her at home when she is sick. I may have to home school her

eventually, but she loves school and doesn't want to be taken out. They are so

good

about her doctor appointments too. They let me know if any of the other

children are sick. We are very blessed.

Ashton did great with her IVIG and the new port. She was still very sore, but

there was only one stick.

Does anyone know any information on EBV and PID? Our immunologist tested

Ashton to see if she has had EBV and it was positive. I know it is hard on the

immune system and she had a bad case of it. It is hard to tell because she gets

so sick so much.

Mom to Ashton 10, CVID, Asthma & Marina 8, Asthma

[Guest guest]

from dale, Mom to Katy, CVID, age 20

Nanashmar@... wrote:

>Does anyone know any information on EBV and PID? Our immunologist tested

>Ashton to see if she has had EBV and it was positive. I know it is hard on the

>immune system and she had a bad case of it. It is hard to tell because she gets

>so sick so much.

>

>

>

EBV and PID - for clarity -- that's Epstein Barr Virus and Primary

Immune Deficiency. Many, many PID patients also have EBV. BUT and if

I could make it bigger I would BUT -

you cannot be checked for EBV AFTER you receive IVIG if they are

checking to see if she has antibodies against EBV.

So, it depends on whether her blood draw that showed EBV was before or

after receiving IVIG.

Now, let's review why. What is IVIG? It is the antibodies from

approximately 2000 people that they made in response to certain germs.

When they got a tetanus shot -- they made antibodies -- so now any blood

work she has will show that she has anti-tetanus titers. That's good

because she probably didn't have any of her own. So now, if she

encounters tetanus, she'll be protected.

Same with EBV. If she has received IVIG she got the antibodies from

approximately 2000 people. When some of them encountered EBV -- they

made antibodies against it -- so now any blood work she has will show

that she has anti-EBV titers. That's good because she probably didn't

have any of her own. So now, if she encounters tetanus, she'll be

protected.

Now, with that all said -- let's go back to the first statement that

many PID patients have EBV. One doctor told me that PID so mimics EBV

that it's impossible to distinguish by clinical symptoms. Or actually

it's the other way around -- EBV mimics a primary immune deficiency.

Unless you get titers checked BEFORE IVIG you'll never know. Once you

are able to get the IgG levels up to where they belong, most of those

symptoms will go away regardless of whether it's EBV or PID. That's

exactly what happened to Katy. She had every symptom of EBV but it

never showed up on a blood test. Once she got her IgG level up -- all

of those EBV symptoms went away (in approximately 1 year). Was it EBV

or low IgG? We think probably just low IgG because EBV never showed up

on all her 1000 of blood tests prior to diagnosis.

So, here's hoping that either way -- the IVIG will do it's job and get

her feeling better. It's hard to believe today that it's the same Katy

that was too tired to walk from the living room to her bedroom. Her

Daddy carried her everywhere.

Katy's home from college, bored silly here and is looking for a job.

She's pounding the pavement (after sleeping 'til noon) and trying to

find a summer job. She hasn't learned that the early bird gets the worm

-- oh well!

Gotta get busy,

In His service,

Dale

[Guest guest]

Grace,

I don't want to sound like homeschooling is a requirement for a child with

PID. That's not true at all. But homeschooling can be a short-term

alternative (or a long-term alternative) to public schools. Someone else

mentioned getting a homebound teacher. Honestly, though, in K, I don't

think I'd bother. You could easily cover the material in K yourself.

However, if you cannot be home because of other commitments, I think you'll

just need to rattle the cages a bit to get the services and protection that

Zachary needs.

I'd be happy to share with you some ideas for K at home if you'd like to

contact me off-list.

Pam

wife to (17 years)

mother to , 10, Hannah, 8, Rebekah, 4, and Leah, 2

Pam

I have honestly " toyed " with the thought of homeschooling Zachary. I

actually have homeschooled 2 of my oldest children when they were in

Middle school. Do you use a curriculum?? or just something you put

together yourself?? I used Christian Liberty when I homeschooled but

found them very expensive, and didn't feel that the experience was

really a good " learning " experience.

[Guest guest]

Thank you for the info. The draw was after the first IVIG, so the EBV draw

would not be accurate. I was curious as to the symptoms of PID and EBV being

similar on many levels. Ashton's energy level has improved since the IVIG

started. She is still fighting something right now.

I just wish she would stop getting sick all the time.

Thanks,

Mom to Ashton 10, CVID, asthma & Marina 8, asthma

[Guest guest]

Pam,

Your very welcome! It seems as though I learn something new from the group

everyday, as well..Which is exactly why this group was started.

6 yrs ago I had absolutely no one to communicate with in re: to Olivias

situation. There was absolutely nothing on line (hence, the name

infantilescoliosis.com)..There were many adult scoliosis listserves, but

nothing " active " for parents with infants and young children.

Starting this group has really helped me get through some hard times.

I dont know what I would do without all the parents on this group!

Thanks for being a part of it.

Please continue to keep us updated on Carly.

Sincerely,

HRH

Update

>

>

> I would like to thank all of you that have helped me over the past

> few weeks - Bridgette, Crista, Tawney, , . We are still

> waiting for Carly's MRI on Tuesday, February 15. All we know at this

> point is that she has a 33 degree curve according to the ortho that

> we have seen. But by looking at some of the other X-Rays it looks

> much worse. In addition, we believe she has a double curve and both

> curves have progressed, especially the upper curve, in the past

> month. We are just trying to keep her well so that we don't have to

> reschedule her MRI that we have been waiting on for 5 weeks. I have

> never known 5 weeks to go by so slowly.

>

> We are scheduled for an MRI on February 15, but will not have results

> until February 18 when we have our return appt with the ortho. We

> are then scheduled with a Vanderbilt Children's pediatric othro to

> get a second local opinion. But most importantly, we have an

> appointment with the Shriner's Hospital in Erie, PA to see Dr.

> on February 24th. We have requested that she be casted that

> same day if he decides that she is a candidate. Please pray that she

> will be accepted for casting.

>

> Bridgette - I was so excited to hear about s results. She is

> an inspiration to all of us.

>

> Deshea - Bridgette suggested that I talk to you sometime. Sounds

> like Lucas is having great results with the casting - RVAD of 0!!!!

>

> I have started reading all of the posts from the beginning of the

> site. It is very difficult to keep up with each story but I am

> trying to learn about each of you and your children. I still have a

> very long way to go.

>

> - I just wanted to thank you for all that you have done.

> This group is outstanding and I don't know what we would have done

> without the information that we have gained from it. It has been

> wonderful talking to moms who have real life experiences.

>

>

> Pam

> Mother of Carly (2 years 3 months) and Zach (5 years)

>

>

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>

[Guest guest]

I'm sorry to hear that is still getting mouth sores and that you still

don't have much of a diagnosis! The waiting for a diagnosis was, by FAR,

the worst part of it; treatment issues were challenging, but not as

emotionally gut-wrenching, for me. But then, again, after the diagnosis,

the doctors stopped with the " you are making your kid sick for attention "

accusations!

Pam

mom to 4

Rebekah, 6, CVID

Quoting Pam Mork <pmork@...>:

Pam,

Good to see you post. Hope all is well.....we are still very much in the

waiting game....unhappy, but don't know what to do....am thinking of coming

to

MPLS for the IDF meeting in November. Will depend on finances tho.

>

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