New Member

Report post · February 2, 2005

The therapy probably did not hurt but I can't say it ever help anymore than what we were doing at home. I know a lot of parents who guilt themselves for not putting a second mortgage on their house to pay for more therapy. My son did not talk until 3 1/2. Sentences were even later. Currently he is in regular second grade with pull out services. He is exactly one year behind in reading. After the reading delay is gone he will be on grade level. I am currently stressing myself about paying for more tutoring at Sylvan. lbd410 <lbd410@...> wrote:

Hi, This is very new for me. My son is 2 1/2. He has been in OT and ST since July. We will finally get into the developmental ped on Friday. We have been waiting for 6 months. What takes so long? Anyway he has sensory issues and doesn't talk at all. After being in therapy for six months I thought maybe he would be able to call me mom. This hasn't happened. Has anyone else been through this? Does anyone have any advice? What is next? What is best? Should he be in more therapy? Now he has therapy 3 days a week. I know these are questions that will be addressed on Friday, but hearing advice from people who have been there will be more real. Right now I'm clueless.Thanks,Lin__________________________________________________

Report post · February 2, 2005

Hi Lin and welcome to the group! All kids are going to be different

in their development. My son Eddie is almost 13 and he didn't talk

at all until he was 7. I too worried my child would never talk but

having " been there and done that " and also hearing from other parents

and teachers, I can say to you that your son will talk when he is

ready. In our case, all the ST's and OT's in the world didn't make

too much of a dent until he got hooked up with a great teacher in 2nd

grade. She " taught " him to talk when others including myself

couldn't.

Sherri

>

> Hi, This is very new for me. My son is 2 1/2. He has been in OT and

> ST since July. We will finally get into the developmental ped on

> Friday. We have been waiting for 6 months. What takes so long?

> Anyway he has sensory issues and doesn't talk at all. After being

> in therapy for six months I thought maybe he would be able to call

> me mom. This hasn't happened. Has anyone else been through this?

> Does anyone have any advice? What is next? What is best? Should he

> be in more therapy? Now he has therapy 3 days a week. I know these

> are questions that will be addressed on Friday, but hearing advice

> from people who have been there will be more real. Right now I'm

> clueless.

>

> Thanks,

> Lin

Report post · February 2, 2005

Lin, welcome! This is an awesome group--most of all I know comes

from parents like these and not professionals (sad to say).

My son just turned 2 last week. He has over a 100 word vocabulary,

can say " hi mommy " and " I want (desired object) " without prompts.

Yesterday, he looked outside and said " rain. " He is picking up new

words every day. This is from a kid who never spoke and never made

raspberries or other sounds except to cry until he was about 14

months old.

Our son was identified as autistic at 7 months old (He looked

really, really bad). Since he was 9 months old, we have been doing

intensive biomedical interventions (gut dysbiosis treatment, B12

shots, transdermal glutathione, supplements, TTFD chelation, GFCF

diet). We have been doing this now for 15 months. We have seen

tremendous improvement in his health that has allowed him to make

great gains in his behavior therapies. I would guess that the

biomedical interventions have been responsible for 85% of our son's

progress. It is expensive, time consuming, and takes weeks and

months to see improvement, but it has been worth it for us.

" Children with Starving Brains " has been our " bible " so-to-speak,

and I recommend it as being an excellent primer on treating autistic

children using biomedicine.

The information parents give you will seem overwhelming at first and

everyone seems to have opposite opinions. Some things work for some

kids and not for others. It is terribly frustrating to be in the

position to make decisions about your child that feels like

guesswork. I think we have all felt this anxiety along the way. I

have found it helps to ask a lot of questions and take the approach

that makes the most sense and is " do-able. " A lot of interventions

require a major committment of time and money. I remind myself that

what I do now is an investment in my child's (and my own!) future.

The Saturday monthly meetings are great and if you can get to one,

you'll get to meet a lot of people face-to-face and gather a lot of

information and support.

Its good to have you here!

Long

Report post · February 3, 2005

Ditto for my son. ABA has been key for him.

Owen, 4, asd & Jordyn, 14 months

In a message dated 2/3/2005 5:50:24 AM Eastern Standard Time, autism writes:

Message: 10 Date: Wed, 2 Feb 2005 08:41:38 -0500 From: Harmon <lisaharmon@...>Subject: Re: new memberMy son made very little progress with traditional speech therapy and only started to talk when we started doing ABA therapy with him. Motivation was key for him. H.

Report post · February 8, 2005

,

Welcome to C.A.S.T.!

This is a group of compassionate, well-informed parents who all have a

different scoliosis situations with their children.

On this list, I believe there are a few parents who have children undergoing

treatment with a series of POP jackets, and/or Risser casts, ages 6 thru 10.

( I'm sure they'll respond when they see your post.)

ISOP can provide a video/info that will better inform you on early treatment

with POP jackets, if your interested.

Please read www.infantilescoliosis.org in its entirety when you get a

chance.

Do you know if a CINE MRI (flow study)was taken post decompression surgery

to determine if Shane's CSF flow normalized?

Sincerely,

HRH

New Member

>

> Hello Everyone,

>

> I am new to this board and in need of some help. My son Shane has

> been Dx with scoliosis he is 8 years old. I have spent the 8 months

> running all over trying to figure out what is going on with him.

>

> Well now we know He has been dx with Chiari 1, a Tetherd spinal

> cord, Syringohydromyelia, & scoliosis.

>

> The last 6 months we have gone threw Decompression surgery, And

> tethard cord surgery. His syrinx is stable and now there working on

> the scoliosis.

>

> When it was found 6 months ago his curve was at 20 degrees,

> Now he is at 33 derees. We are now in the process of getting the

> charlston bending brace made. His first fitting is on thursday

> the 10th.

>

> I have never heard of casting and was told only that Night bracing

> needs to be done. Well I am serching for all forms of treatment.

> so you find me here now.

>

> I was also told Threw his Nero surgeon that if his curve reached 50

> degrees he would need scoliosis surgery. Well I really want to do all

> I can to prevent this and am not sure night bracing should be all

> that is done at this point.

>

> Can you please direct me in finding out any and all information on

> this? Thank you

>

Report post · February 9, 2005

Hi Kim,

After two years of high cyclic fevers and having him hospitalized and had

tests run, in which they found nothing, we finally went to Shriner's

Hospital. I thought at the time that Shane might JRA. The doctor we saw

there knew exactly what he had and told us he had . She told us how to

use prednisone to help alliviate his fevers. It was a long road (and still

is). I'm not 100% convinced that this is what Shane has.

The best place to start is to have a supportive primary care doctor who will

listen to you. You need to push and be a strong advocate for your son. If

it wasn't for me pushing for Shane to get into Shriner's I wouldn't have

gotten the diagnosis and would have found out what I could do for him.

Hang in there!! You have alot on your plate. This is an AWESOME group of

people who are extremely supportive and have seen it all.

Take care

Beverly Dettis

Roseville, CA

new member

>

> HI MY NAME IS KIM. I AM THE MOTHER OF THREE BOYS. JARED 8 1/2 ,HE HAS

> DIGEORGE SYNDROME AND IS AUTISTIC, JOSHUA 2 1/2, AND JACOB 17 MONTHS

> WITH A UNKNOWN DIAGNOSIS. JACOB WAS BORN AT 34 WEEKS. HE HAD MILD

> COMPLICATIONS. HE DID HAVE JUANDICE AND SEVERE REFLUX. JACOB STARTED

> RUNNING HIGH FEVERS AT ABOUT A MONTH OLD. HIS TEMPS. STARTED OFF AT

> 103. AND AT THE TIME HE WAS TO YOUNG EVEN FOR TYLENOL. THE TEMP JUST

> WENT AWAY ON ITS OWN WITH NO OTHER SYMTOMES. SINCE THEN HE HAS RAN

> FEVERS ABOUT EVERY 3-4 WEEKS. AT FIRST I WOULD CALL THE DOCTOR, TAKE

> HIM IN, AND THEY WOULD SAY THE SAME THING ALL THE TIME. " WELL, WE

> CAN'T FIND ANYTHING WRONG WITH HIM " HE MUST JUST HAVE A VIRUS.. WELL,

> I GOT SICK OF HEARING IT SO I WOULD NOT EVEN TAKE HIM ANYMORE. I DID

> TAKE HIM A FEW TIMES BECAUSE AFTER A FEW DAYS OF RUNNING HIGH TEMPS

> HE WOULD BREAK OUT IN A HORRIBLE RASH. FINALLY, AT HIS 15 MONTHS

> APPOINTMENT. I SAID ENOUGH IS ENOUGH. THIS CAN NOT GO ON. SOMETHING

> IS WRONG. PLUS HE IS STILL NOT WALKING OR TALKING. THEY HAVE FOUND

> THAT HE ALWAYS HAS BLOOD IN HIS URINE, BUT NO INFECTION. ODD I KNOW.

> OF COURSE I HAVE ALOT OF QUESTIONS!! BUT MY MAJOR ONE IS HOW YOU

> FOUND OUT ABOUT ? DID YOUR DOCTOR TELL YOU ABOUT IT? WHAT DO I

> NEED TO DO FOR TESTING? I ONLY LEARNED ABOUT IT FROM SEARCHING ON

> LINE ABOUT FREQUENT FEVERS. PLEASE HELP ME WITH YOUR EXPEREIANCES.

> DID YOUR DOCTORS SEEM STUPID TO YOU TOO?? PLEASE HELP! I AM STRESSING

> OUT! THANK YOU KIM

>

Report post · February 10, 2005

Hi Kim

Sorry things have been so hard. My experience with the medical system has

been similar to yours. My daughter started fevering very very very

young and was also a 34 week premie. I remember she was way under ten pounds

and only a few months old on our first mad dash to the ER. It was hard

watching her with a temp of 106 and being sent home when the CBC Urine and

chest film were normal. At 18 months our pediatrician told me I was doing a

great job treating her symptoms and did not need to bring her in anymore

when fevering. I found info about Pfapa this past summer, the first week I

owned a home computer. ( is five now) I took my family MD the info and

he didn’t want to believe this rare disorder could be affecting my daughter.

The pediatrician was happy to have some answers (given by me), but still

wants me to direct care because he says he’ll probably never see this again

and doesn’t have the time to do research on any of it.< Isn’t that special>

LOL

As far as your testing question a good start is an ESR, CRP, CBC with diff,

and Ig levels especially IgD

a urine for organic acid (mevalonic acid) taken when fevering(3rd day I

think). If possible genetic testing to rule out the main periodic fever

disorders TRAPS, FMF and HIDS. If you copy articles listing diagnostic

criteria and take with you to MD it’s harder for them to ignore you.

Knowledge is a great tool.

did not start walking until 18months or talking until two. Rashes and

developmental delay are not typical with Pfapa but some of the genetic

syndromes do list these as symptoms. Was born with a rash? CINCA/NOMID

children are born with a rash, tend to be premie’s, and can have significant

developmental delay.

The hard thing is so many questions and so few answers with these periodic

fevers. There is so much still to be discovered.

Don’t give up. I did. I took a sabbatical from disrespect and ignorance and

just treated ’s fevers myself for almost three years. When kindergarten

was around the corner I took up the fight again suspecting they’d notice she

was absent a lot. At times additional issues like the developmental delay

can muddy the waters and make it harder to focus on what is or isn’t part of

the picture.

Best wishes navigating this immense river.

Walton

(5) ?

Nanaimo BC Canada

new member

HI MY NAME IS KIM. I AM THE MOTHER OF THREE BOYS. JARED 8 1/2 ,HE HAS

DIGEORGE SYNDROME AND IS AUTISTIC, JOSHUA 2 1/2, AND JACOB 17 MONTHS

WITH A UNKNOWN DIAGNOSIS. JACOB WAS BORN AT 34 WEEKS. HE HAD MILD

COMPLICATIONS. HE DID HAVE JUANDICE AND SEVERE REFLUX. JACOB STARTED

RUNNING HIGH FEVERS AT ABOUT A MONTH OLD. HIS TEMPS. STARTED OFF AT

103. AND AT THE TIME HE WAS TO YOUNG EVEN FOR TYLENOL. THE TEMP JUST

WENT AWAY ON ITS OWN WITH NO OTHER SYMTOMES. SINCE THEN HE HAS RAN

FEVERS ABOUT EVERY 3-4 WEEKS. AT FIRST I WOULD CALL THE DOCTOR, TAKE

HIM IN, AND THEY WOULD SAY THE SAME THING ALL THE TIME. " WELL, WE

CAN'T FIND ANYTHING WRONG WITH HIM " HE MUST JUST HAVE A VIRUS.. WELL,

I GOT SICK OF HEARING IT SO I WOULD NOT EVEN TAKE HIM ANYMORE. I DID

TAKE HIM A FEW TIMES BECAUSE AFTER A FEW DAYS OF RUNNING HIGH TEMPS

HE WOULD BREAK OUT IN A HORRIBLE RASH. FINALLY, AT HIS 15 MONTHS

APPOINTMENT. I SAID ENOUGH IS ENOUGH. THIS CAN NOT GO ON. SOMETHING

IS WRONG. PLUS HE IS STILL NOT WALKING OR TALKING. THEY HAVE FOUND

THAT HE ALWAYS HAS BLOOD IN HIS URINE, BUT NO INFECTION. ODD I KNOW.

OF COURSE I HAVE ALOT OF QUESTIONS!! BUT MY MAJOR ONE IS HOW YOU

FOUND OUT ABOUT ? DID YOUR DOCTOR TELL YOU ABOUT IT? WHAT DO I

NEED TO DO FOR TESTING? I ONLY LEARNED ABOUT IT FROM SEARCHING ON

LINE ABOUT FREQUENT FEVERS. PLEASE HELP ME WITH YOUR EXPEREIANCES.

DID YOUR DOCTORS SEEM STUPID TO YOU TOO?? PLEASE HELP! I AM STRESSING

OUT! THANK YOU KIM

Report post · February 13, 2005

Hi ,

You're on the right path now. Hang in there. We've all been there are

sending thoughts and prayers your way.

Look at past posts on Cimetidine, Prednisone and Tonsillectomies before your

next doctor's visit so that you can ask more questions. Also, there is a

recipe to use for your son's mouth sores if you haven't found a medicine yet

that helps.

We're here.

Rosemarie

Mom to Danny age 10 (fever free since tonsillectomy in 2002)

Denver, CO

Report post · February 13, 2005

Dear Rosemarie,

Thank you for your support. It helps to know that someone has already been

there. I'm glad to hear that your son has recovered after his tonsillectomy.

How old was your son when he had it? What is your preference in treatment,

Prednisone or Cimetidine? Were there any side effects to the Cimetidine? I

will definitely consider the tonsillectomy but I want to wait until my 3 1/2

year old is a little older. You mentioned a recipe for mouth sores. I'd like

to hear your suggestion. Thanks,

Message -----

From: Rosemarie/Mike

Sent: Sunday, February 13, 2005 11:08 AM

Subject: Re: new member

Hi ,

You're on the right path now. Hang in there. We've all been there are

sending thoughts and prayers your way.

Look at past posts on Cimetidine, Prednisone and Tonsillectomies before your

next doctor's visit so that you can ask more questions. Also, there is a

recipe to use for your son's mouth sores if you haven't found a medicine yet

that helps.

We're here.

Rosemarie

Mom to Danny age 10 (fever free since tonsillectomy in 2002)

Denver, CO

Report post · February 22, 2005

Mine runs on a comfortable level 24/7

Locamotion429@... wrote:

>Hi, I recently joined the group & have been following the postings with great

>interest. I have a relatively new home (1 yr old & no mold that I'm aware of)

>and sleep with my ozonator running..for about 8 hours, on low. Is this

>beneficial or?

>Thank you,

>Trudie

>

Report post · February 22, 2005

Hi Trudie. We have two ozonators running 24/7 in our home at a

comfortable level. One is in our bedroom. Cheers,

>

> >Hi, I recently joined the group & have been following the postings

with great

> >interest. I have a relatively new home (1 yr old & no mold that

I'm aware of)

> >and sleep with my ozonator running..for about 8 hours, on low. Is

this

> >beneficial or?

> >Thank you,

> >Trudie

> >

>

Report post · March 6, 2005

Hi Annika,

Welcome to the group, I hope we can help you and give you and your son some

support. It sounds like things have been very rough for you. Our prayers are

with you.

mom to - CVID, asthma, GERD

New member

Hi! My name is Annika and I have a 3-year-old son Nuutti who has

hypogammaglobulinemia, hypotonia, GERD and global developmental

delays. We live in Northern Europe, Finland. English is not my native

language, so I may use sometimes funny words or express myself in an

odd way.

Nuutti´s immune defiency was found last summer when he suddenly

started to have weird seizures. We spent over 2 months in a

children´s hospital. He was done several eeg:s (also monitored), MRI,

blood tests, x-rays and so on. Nothing was found, but the convultions

went on and on. Nuutti also stopped eating and drinking, threw up and

looked very ill.

Several drugs were tested (apydan, valproic acid, sabrilex) and

Nuutti was given diatzepam (stesolid, ativan, rivatril) dozens of

times. Nothing seemed to help, he went worse and worse all the time.

Finally before a weekend a neuro made a desition to try

Phenobarbital. That was a great thing. Nuutti started to sleep and in

2 weeks time was seizure-free, still vomiting, but happier than ever.

That good time did not last forever. After two months the troubles

started again In november a doctor suddenly wanted to check if

Nuutti has GERD. After 24h manometria the result seemed to be clear:

yes and not even the easiest one. Nuutti is now having Losec 10mg

once a day and Prepulsid 3x 2,5 ml.

Nuutti´s immune defiency is quite unclear. He has never been

seriously ill and he is not ill all of the time. He has a total

defiency of IgA, but IgM is perfectly normal. His IgG levels are

sometimes too low, but sometimes normal. Last summer and autumn he

had fenogamma infusion every 3 weeks. Everything went ok, he was just

a bit tired during the infusion and the next day. My sister has 3

sons, and everyone of them has had some troubles with the

immunological system. But they haven´t been either permanent nor

severe.

Nuutti´s weird seizures are still continuing. Eeg shows no epileptic

activity, not even during the seizure. Some doctors think that they

might be pain attacts that are related to GERD. The most difficult

thing is that with all his delays, he doesn´t speak yet. So it is no

use to ask what happens Normally he cries for a few seconds, looks

horrified, his heart is bumping, blood pressure rises and his hands

are cold-swetting. Sometimes he stops breathing and turns pale or

blue. Often the " attacs " are related to meals or drinking.

Now I have to stop and go to sleep. It´s over midnight here

I´m happy to find a supportive group like this. Please do ask if I

have written something very unclear...

Annika, mother of Nuutti 3yrs (hypogammaglobulinemia, global dev

delays, hypotonia, GERD...)

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.

To unsubscribe

-unsubscribe@groups<mailto:-unsubscribe@groups>.

To search group archives go to:

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Report post · March 7, 2005

In a message dated 3/6/2005 6:02:05 P.M. Eastern Standard Time,

ninna_a@... writes: