Re: Is anyone riding in the same boat as me???

[Guest guest]

my best friends son is 4..he has been in the hospital 5-6 times already in his

life and they have run all kinds of testing to find out why he gets sick and

dehydrated so easily. He also has SID (sensory) and he is very smart, but

doesnt communicate well. He is very behind on speach and because of this it also

causes behavior issues (since he cant express his emotions verbally).

They have done the IgG, A, M, E levels and he is very high for his age in IgE

and has many food and Environ allergies..yet the other Ig's are normal. He

should be seeing a specialist soon to try and figure out what has been missed so

far.

I hope they find out more answers for your son!

APril

Misty <mistycmathis@...> wrote:

I posted a while back that Jake had been to developmental peds and

that we found out he is developmentally behind, has severe

seperation anxiety, problems with his expressive and recepitve

speech. His IQ is testing on that of a 4 year old but his

acheivement scores are all way above average. Which they say is

unusual that they normally see high IQ scores but low achievment

(leave it to Jake to be different). The developmental ped said she

is convinced that Jake's problems are related to his PID??? but she

could not make a correlation. Well been doing some research on my

own and I have been intrigued by Sensory Integration Disorder...it

matches Jake to a tee but the interesting part is I read where it

has been linked to PID. Does anyone else have children with PID and

Sensory issues?

I am not worrying about his IQ and acheivement scores to be honest

it is the least of my worries..(The day we went to developmental

peds he had a temp of 103.8 and a nasty sinus infection...so the

results may not be as accurate as they should be due to the

circumstances that day) I will work with him extesively to help with

that. We trialed off IVIG a while back but had to restart it in

April due to CHRONIC ILLNESS and we will start subq on the 28th of

May..YEAH!! So what I really want to know is there anyone else out

here who is dealing with PID and Sensory Integration??

Thanks,

Misty; Jake 6yrs old

When everything seems to be going against you, remember the airplane takes off

against the wind, not with it.

--Henry Ford

[Guest guest]

My ph does. I love the books The Out of Sync Child and The Out of Sync

Child has Fun.

Peace be with you,

Pattie

Be yourself. Everyone else is already taken. ~ Wilde

_____

From: [mailto: ] On Behalf Of

Misty

Sent: Wednesday, May 14, 2008 1:39 PM

Subject: Is anyone riding in the same boat as me???

I posted a while back that Jake had been to developmental peds and

that we found out he is developmentally behind, has severe

seperation anxiety, problems with his expressive and recepitve

speech. His IQ is testing on that of a 4 year old but his

acheivement scores are all way above average. Which they say is

unusual that they normally see high IQ scores but low achievment

(leave it to Jake to be different). The developmental ped said she

is convinced that Jake's problems are related to his PID??? but she

could not make a correlation. Well been doing some research on my

own and I have been intrigued by Sensory Integration Disorder...it

matches Jake to a tee but the interesting part is I read where it

has been linked to PID. Does anyone else have children with PID and

Sensory issues?

I am not worrying about his IQ and acheivement scores to be honest

it is the least of my worries..(The day we went to developmental

peds he had a temp of 103.8 and a nasty sinus infection...so the

results may not be as accurate as they should be due to the

circumstances that day) I will work with him extesively to help with

that. We trialed off IVIG a while back but had to restart it in

April due to CHRONIC ILLNESS and we will start subq on the 28th of

May..YEAH!! So what I really want to know is there anyone else out

here who is dealing with PID and Sensory Integration??

Thanks,

Misty; Jake 6yrs old

[Guest guest]

My son was just like your son. All the symptoms you described plus. Rainbow

Childrens Hospital told me that it was not unusual with kids with PIDs. My sons

diagnosis at 12 are Sensory Integrations Dysfunction, Severe Anxiety ( including

a hx of SEVERE seperation anxiety) Depression, ADHD, Bipolar, Etc. His IQ is 145

which is quite high and he does very well in school IF.......... he is getting

consistent reminders and assistance to get his assignments put together and

turned in. ( he has an IEP) . I remember being very confused and frustrated

trying to help him get through his first 8 years. He also was having constant

tantrums around EVERYTHING!!! School phobia was a major problem. He now has a

good number of friends, does not complain about going to school and seems to

doing OK. We do struggle around his moods and his health. There is a book called

the OUT Of Cinq (sp.)child.

BARBIE

Is anyone riding in the same boat as me???

I posted a while back that Jake had been to developmental peds and

that we found out he is developmentally behind, has severe

seperation anxiety, problems with his expressive and recepitve

speech. His IQ is testing on that of a 4 year old but his

acheivement scores are all way above average. Which they say is

unusual that they normally see high IQ scores but low achievment

(leave it to Jake to be different). The developmental ped said she

is convinced that Jake's problems are related to his PID??? but she

could not make a correlation. Well been doing some research on my

own and I have been intrigued by Sensory Integration Disorder...it

matches Jake to a tee but the interesting part is I read where it

has been linked to PID. Does anyone else have children with PID and

Sensory issues?

I am not worrying about his IQ and acheivement scores to be honest

it is the least of my worries..(The day we went to developmental

peds he had a temp of 103.8 and a nasty sinus infection... so the

results may not be as accurate as they should be due to the

circumstances that day) I will work with him extesively to help with

that. We trialed off IVIG a while back but had to restart it in

April due to CHRONIC ILLNESS and we will start subq on the 28th of

May..YEAH!! So what I really want to know is there anyone else out

here who is dealing with PID and Sensory Integration? ?

Thanks,

Misty; Jake 6yrs old

[Guest guest]

Hi Misty,

We're in the same boat! Interestingly, it has been our youngest that has

brought alot of the sensory issues to the forefront. All three of our boys have

CVID, all diagnosed pretty early on..... because the older two met all of their

milestones despite the constant illness, we never had any early intervention

services for them.

Our youngest, Matty, is a little different! He has had been getting EI

services for about a year and a half for expressive/receptive speech delay and

it wast the EI staff that noticed all of the sensory processing issues and

called in an SI/OT specialist to work with him as well. He now gets both

services and in the fall, since he will be 3 and no longer qualify for EI, he

will start an integrated program that will continue his therapy. His sensory

issues are very severe, and we also have major behavior issues triggered by both

the sensory stuff and the communication frustration. It's getting better

slowly, but it sure is hard! I know where you're coming from!

What's really interesting about all the SI stuff is that it explains alot of

behavior and other issues we've had with my middle son too. We actually

have a meeting with his school tomorrow with the results of the SI evaluation we

requested for him. It will be interesting to see if any of it is showing up in

school.... I suspect not, since it's such a short day (half-day kindergarten is

only 2 .5 hours)... but I'm very interested to see what they find. Just like

your story, our boys are very bright, so it's hard to get the school to pay

attention to it.

Good Luck! , mom to 3 PIDD kids: (8), (6) and Matty (2)

all on subq weekly http://www.teamhope.info/http://foxfamilypidd.bravehost.com/

_________________________________________________________________

Windows Live SkyDrive lets you share files with faraway friends.

http://www.windowslive.com/skydrive/overview.html?ocid=TXT_TAGLM_WL_Refresh_skyd\

rive_052008

[Guest guest]

Hi Misty- Mark has had therapy since he was 2 for problems with his

expressive/receptive speech and OT for sensory issues (particularly

concerning food textures). I am happy to say he has made tremendous

improvement in the last year.

I am curious about the idea of link between PID and these issues.

Our immuno discussed with us a link between the gag/food texture

which I know I posted about before.

Here is my uneducated, maybe " out-of-the-box " thinking. Most of our

kids with this disease spend a lot of their energies staying well and

fighting infection. Healthy children can run, jump, play and

interact without undue stress on their bodies. Our kids can tire

easily, have much less exposure to other kids because of infection,

and spend a lot of time recovering from infections. In addition,

they have to cope with frequent visits to hospitals/clinics. A

couple days spent at a hospital a month is a couple days a month with

no exposure/learning/play time with other kids their age (which is

how they learn best). Plus there is the emotional toll as well,

which is tremendous and certainly has a huge impact on their psyche.

My theory is that they see speech issues/sensory problems/etc with

PID kids because our kids just don't have the exposure to a variety

other children which greatly impacts their learning and development,

and because their bodies require a lot more energy on fighting germs

than other children. I'm guessing this isn't only kids with PID, but

kids anywhere coping with chronic illness.

Also, sometimes it feels like, when it rains it pours??

Just my two cents,

, mom to Mark, 6, CVID

>

> I posted a while back that Jake had been to developmental peds and

> that we found out he is developmentally behind, has severe

> seperation anxiety, problems with his expressive and recepitve

> speech. His IQ is testing on that of a 4 year old but his

> acheivement scores are all way above average. Which they say is

> unusual that they normally see high IQ scores but low achievment

> (leave it to Jake to be different). The developmental ped said she

> is convinced that Jake's problems are related to his PID??? but she

> could not make a correlation. Well been doing some research on my

> own and I have been intrigued by Sensory Integration Disorder...it

> matches Jake to a tee but the interesting part is I read where it

> has been linked to PID. Does anyone else have children with PID

and

> Sensory issues?

> I am not worrying about his IQ and acheivement scores to be honest

> it is the least of my worries..(The day we went to developmental

> peds he had a temp of 103.8 and a nasty sinus infection...so the

> results may not be as accurate as they should be due to the

> circumstances that day) I will work with him extesively to help

with

> that. We trialed off IVIG a while back but had to restart it in

> April due to CHRONIC ILLNESS and we will start subq on the 28th of

> May..YEAH!! So what I really want to know is there anyone else out

> here who is dealing with PID and Sensory Integration??

> Thanks,

> Misty; Jake 6yrs old

>

[Guest guest]

from Dale, Mom to Katy, CVID, married and grown

Barbie, Katy was never " diagnosed " with Sensory Disorder, but when the

discussion came up here several years ago I " knew " that that was a major

issue for her. When I read " Out of Sync " child I just went ballistic!

But, Katy was in college at the time. I contacted the research center

in Southern California and talked with them and they said that they

didn't deal with older children and didn't have any suggestions. So,

what Katy and I began what I call " talk therapy " . I simply began

talking to her about her feelings and responses to textures. The relief

she felt to understand " why " she responded the way she did was

tremendous! She began to verbalize how " oatmeal " felt in her mouth, how

angry she became when crowds touched her, how she couldn't control the

rage she felt if a blouse had elastic around the sleeves, etc, she was

able to come up with solutions herself. And by knowing what was causing

those emotions, she's learned to deal with most of them. She still

avoids a lot of food textures -- but I've also noticed that she's

tolerating more and more. She told me that she actually enjoys

applesauce now without gagging. She still gags if she finds a raisin in

her cinammon roll, though! And she thinks mixed fruit salads are pure

torture.

So, it's never too late to address the issues -- it's just that you have

to address them differently in an older child. But, don't avoid the

topic. It REALLY helped Katy to know what was going on in her body and why.

My theory on her Sensory disorder is that I think it was caused by the

stress of PID, simply because I don't remember it being evident prior to

her diagnosis. I think it was a stress reaction for her. But I may be

wrong.

Hope that helps,

In His service,

dale

[Guest guest]

Ok I've been reading these posts the last few days and I have a

question if anyone can answer... maybe I need to start a new thread,

but ... maybe it will be seen here, too..

My little man, Jayden, when he was born I was told that he had a high

palette and this caused MANY issues with feeds, on top of the

tracheomalacia and reflux we already had going on, and the sleep

apnea. However, there are a lot of things that he WON'T eat now b/c it

gags him. And we have always noticed how he acts when he gets nervous

.... he will start trying to hit me or dad to take the attention off of

himself (i.e. new Dr's appts, or anytime the focus is turned solely on

him) I have never noticed a problem with textures, but he doesn't like

large crowds for sure, he gets pretty shy, and even in a one on one

setting he is shy, but it isn't as severe as what I've read about some

of your kiddos. Do you think this has anything to do with any type of

SI? Or is he just acting out and maybe due to the high palette when he

was born the texture thing just doesn't do well for him? I don't want

to give him more things than he already has, but you know, this is

really intriguing.

any suggestions?

>

> from Dale, Mom to Katy, CVID, married and grown

>

> Barbie, Katy was never " diagnosed " with Sensory Disorder, but when the

> discussion came up here several years ago I " knew " that that was a

major

> issue for her. When I read " Out of Sync " child I just went ballistic!

>

> But, Katy was in college at the time. I contacted the research center

> in Southern California and talked with them and they said that they

> didn't deal with older children and didn't have any suggestions. So,

> what Katy and I began what I call " talk therapy " . I simply began

> talking to her about her feelings and responses to textures. The

relief

> she felt to understand " why " she responded the way she did was

> tremendous! She began to verbalize how " oatmeal " felt in her mouth,

how

> angry she became when crowds touched her, how she couldn't control the

> rage she felt if a blouse had elastic around the sleeves, etc, she was

> able to come up with solutions herself. And by knowing what was

causing

> those emotions, she's learned to deal with most of them. She still

> avoids a lot of food textures -- but I've also noticed that she's

> tolerating more and more. She told me that she actually enjoys

> applesauce now without gagging. She still gags if she finds a

raisin in

> her cinammon roll, though! And she thinks mixed fruit salads are pure

> torture.

>

> So, it's never too late to address the issues -- it's just that you

have

> to address them differently in an older child. But, don't avoid the

> topic. It REALLY helped Katy to know what was going on in her body

and why.

>

> My theory on her Sensory disorder is that I think it was caused by the

> stress of PID, simply because I don't remember it being evident

prior to

> her diagnosis. I think it was a stress reaction for her. But I may be

> wrong.

>

> Hope that helps,

>

> In His service,

> dale

>

[Guest guest]

Lucas from early on was EXTREMELY sensitive to tags, smells, noises, and I

always said if he could have crawled back into my womb he would have. ( even

though I adopted him) he would rub my skin on my legs and arms. Wanted to be

held and carried all the time and had to have NO Holes in his clothes or tags,

etc etc. etc. Much of this has improved over the years. But.... I know he feels

very different than other kids and is hard on himself about it. He really has

learned a great deal in the past couple of years. His eating has also improved

dramatically. He did not eat ANYTHING his first 5 years. I think IVIg made the

greatest difference in being able to tolerate a great deal of things in life

since he was much less tired and irritable when he is feeling better. Thanks for

the support in realizing it is NEVER too late.

BARBIE

Re: Is anyone riding in the same boat as me???

from Dale, Mom to Katy, CVID, married and grown

Barbie, Katy was never " diagnosed " with Sensory Disorder, but when the

discussion came up here several years ago I " knew " that that was a major

issue for her. When I read " Out of Sync " child I just went ballistic!

But, Katy was in college at the time. I contacted the research center

in Southern California and talked with them and they said that they

didn't deal with older children and didn't have any suggestions. So,

what Katy and I began what I call " talk therapy " . I simply began

talking to her about her feelings and responses to textures. The relief

she felt to understand " why " she responded the way she did was

tremendous! She began to verbalize how " oatmeal " felt in her mouth, how

angry she became when crowds touched her, how she couldn't control the

rage she felt if a blouse had elastic around the sleeves, etc, she was

able to come up with solutions herself. And by knowing what was causing

those emotions, she's learned to deal with most of them. She still

avoids a lot of food textures -- but I've also noticed that she's

tolerating more and more. She told me that she actually enjoys

applesauce now without gagging. She still gags if she finds a raisin in

her cinammon roll, though! And she thinks mixed fruit salads are pure

torture.

So, it's never too late to address the issues -- it's just that you have

to address them differently in an older child. But, don't avoid the

topic. It REALLY helped Katy to know what was going on in her body and why.

My theory on her Sensory disorder is that I think it was caused by the

stress of PID, simply because I don't remember it being evident prior to

her diagnosis. I think it was a stress reaction for her. But I may be

wrong.

Hope that helps,

In His service,

dale

[Guest guest]

---We are. I have four kids, three with CVID, two of them with SPD.

One very aversive, one very sensory seeking. If I had known about SPD

when my 10 yr old was little, life would have been much easier(less

screaming!). We did six months of OT, brushing therapy, compressions,

and some listening therapy, we are doing MUCH better.

valarie

In , " Misty " <mistycmathis@...> wrote:

>

> I posted a while back that Jake had been to developmental peds and

> that we found out he is developmentally behind, has severe

> seperation anxiety, problems with his expressive and recepitve

> speech. His IQ is testing on that of a 4 year old but his

> acheivement scores are all way above average. Which they say is

> unusual that they normally see high IQ scores but low achievment

> (leave it to Jake to be different). The developmental ped said she

> is convinced that Jake's problems are related to his PID??? but she

> could not make a correlation. Well been doing some research on my

> own and I have been intrigued by Sensory Integration Disorder...it

> matches Jake to a tee but the interesting part is I read where it

> has been linked to PID. Does anyone else have children with PID and

> Sensory issues?

> I am not worrying about his IQ and acheivement scores to be honest

> it is the least of my worries..(The day we went to developmental

> peds he had a temp of 103.8 and a nasty sinus infection...so the

> results may not be as accurate as they should be due to the

> circumstances that day) I will work with him extesively to help with

> that. We trialed off IVIG a while back but had to restart it in

> April due to CHRONIC ILLNESS and we will start subq on the 28th of

> May..YEAH!! So what I really want to know is there anyone else out

> here who is dealing with PID and Sensory Integration??

> Thanks,

> Misty; Jake 6yrs old

>