update

[Guest guest]

Thank you for clearing that up. Pati

Re: Update

>

> Okay, I have another question. If you give the MMR separately wouldn't you be

giving them even more preservatives at a time? That is something that my dr is

concerned about. He understands about not attacking their immune systems with

all three at once but is thinking even more foreign things introduced.

> Thoughts anyone?

>

> Elaine

>

>

>

[Guest guest]

Thanks! Maybe you have access to an alternative vaccine schedule that you could

share. Pati

Update

>

>

> DO OTHER PEOPLE RUN INTO THIS STUFF:

>

> I just got off the phone with is' doctor and I was asking him a

few questions. He had wanted is to get a flu shot and I was

scared because I've been reading all this stuff about Mercury

poisening and he acted annoyed when I expressed my concerns. He

said, well I lined up all my grandchildren on Thanksgiving and gave

it to them before they had Turkey. Then I asked him if a supplement

of Zinc would be a safe alternative because that was recommended to

me. He said NO! He said not to give her Zinc and that Zinc

deficiencies are rare and too much could be harmful. Then I asked

him if it would be appropriate for a Doctor to make specific

recommendations about the amount of speech and OT therapy a child

should receive because currently is is only receiving 1 hour per

week of each. He said, yes, I should ask the dev. ped. to do that

but I need to recognize that there are limited resources and if they

give is an additional hour of therapy then they are taking it

from another child. Needless to say, it was not a good

conversation. He either made me feel stupid or selfish! Just felt

like venting! Pati

>

> P.S. I also asked him about the MMR and if it had thermersol in

it. And he said he was 99% sure that the MMR never had thermersol in

it because it is a live vaccine. Is that true? I thought I had read

that was the main vaccine with a problem. The reason I want to know

is I have an 8 month old who will be subject to it in the future and

I need to have my facts straight. Unfortunately, my printer is

broken right now, so when I read stuff I can't print it out.

>

>

>

[Guest guest]

Oops, I read the rest of my messages and it looks like we already got the list.

Thanks anyway. Pati

Update

>

>

> DO OTHER PEOPLE RUN INTO THIS STUFF:

>

> I just got off the phone with is' doctor and I was asking him a

few questions. He had wanted is to get a flu shot and I was

scared because I've been reading all this stuff about Mercury

poisening and he acted annoyed when I expressed my concerns. He

said, well I lined up all my grandchildren on Thanksgiving and gave

it to them before they had Turkey. Then I asked him if a supplement

of Zinc would be a safe alternative because that was recommended to

me. He said NO! He said not to give her Zinc and that Zinc

deficiencies are rare and too much could be harmful. Then I asked

him if it would be appropriate for a Doctor to make specific

recommendations about the amount of speech and OT therapy a child

should receive because currently is is only receiving 1 hour per

week of each. He said, yes, I should ask the dev. ped. to do that

but I need to recognize that there are limited resources and if they

give is an additional hour of therapy then they are taking it

from another child. Needless to say, it was not a good

conversation. He either made me feel stupid or selfish! Just felt

like venting! Pati

>

> P.S. I also asked him about the MMR and if it had thermersol in

it. And he said he was 99% sure that the MMR never had thermersol in

it because it is a live vaccine. Is that true? I thought I had read

that was the main vaccine with a problem. The reason I want to know

is I have an 8 month old who will be subject to it in the future and

I need to have my facts straight. Unfortunately, my printer is

broken right now, so when I read stuff I can't print it out.

>

>

>

[Guest guest]

When Allie was 10 months old I began to find myself reading about

autism online late at night. At 19 months I finally called the doc

and said something was wrong with her, and he referred me to our

local university for a hearing test. I went back to him at 23 months

and told him we thought she is autistic. He immediately said he

didn't believe that autism could be diagnosed until 3 but he knew

the " experts " disagree with that. Over the next year as I would come

in for visits I told them we had discovered gluten/casein/salicylate

problems. They didn't know what I was talking about. I also had to

get occupational therapy, pediatric neurologist, and allergist on my

own, he never offered any help. Then, looking back I saw on 4

different office visits complaints I had made about Allie that were

all hallmarks of autism. 10 mo visit I said she was refusing a lot of

food and seemed to be in her own world. 12, 15, and 18 mo all

complained of how quiet she was, would eat very few foods and wasn't

walking. Nothing from pediatricians. Now I know none of these in and

of themselves are serious, but a descent ped should have been

concerned enough to look at her obviously low muscle tone, look

further into her verbal milestones, etc.

My point to all this is every thing I've done with Allie has largely

been on my own. I began zinc supplements after reading about the

study done through Pfeiffer about 90+ % of autistics having low zinc

to copper. I then found additional studies that supported this. My

ped would not have known squat. I did the research on the gfcf diet.

My ped knew nothing of it.

So, all this said, my suggestion is to keep searching until you find

a ped you feel is knowledgeable about autism and current treatments.

I switched to a ped who knows all about the gfcf diet, is very

concerned with the therapies Allie gets, and knows all about the

vitamins/minerals that are typically deficient in autistics. I would

bet 80% of the medical profession knows little/nothing about autism.

I have a sister-in-law in her second year of med school and she has

emailed me about how her professors dismiss treatments that parent

after parent have seen great success with their children. How sad is

that?

Debi

> >

> >

> > DO OTHER PEOPLE RUN INTO THIS STUFF:

> >

> > I just got off the phone with is' doctor and I was asking him

a

> few questions. He had wanted is to get a flu shot and I was

> scared because I've been reading all this stuff about Mercury

> poisening and he acted annoyed when I expressed my concerns. He

> said, well I lined up all my grandchildren on Thanksgiving and

gave

> it to them before they had Turkey. Then I asked him if a

supplement

> of Zinc would be a safe alternative because that was recommended

to

> me. He said NO! He said not to give her Zinc and that Zinc

> deficiencies are rare and too much could be harmful. Then I

asked

> him if it would be appropriate for a Doctor to make specific

> recommendations about the amount of speech and OT therapy a child

> should receive because currently is is only receiving 1 hour

per

> week of each. He said, yes, I should ask the dev. ped. to do

that

> but I need to recognize that there are limited resources and if

they

> give is an additional hour of therapy then they are taking it

> from another child. Needless to say, it was not a good

> conversation. He either made me feel stupid or selfish! Just

felt

> like venting! Pati

> >

> > P.S. I also asked him about the MMR and if it had thermersol

in

> it. And he said he was 99% sure that the MMR never had thermersol

in

> it because it is a live vaccine. Is that true? I thought I had

read

> that was the main vaccine with a problem. The reason I want to

know

> is I have an 8 month old who will be subject to it in the future

and

> I need to have my facts straight. Unfortunately, my printer is

> broken right now, so when I read stuff I can't print it out.

> >

> >

> >

[Guest guest]

That is very correct, The MMR DOES NOT NOR NEVER DID contain Thimerosal.

It's the multitude of other shots generally given with the MMR..... even a

U.S. Congressman's grandson got hammered with 9 shots in one day...... most

contained Thimerosal.....he is Autistic.... just as my son did. No

warnings... nothing given to parents regarding the possibility that the shot

could change their child's lives and everyone around them forever. We just

need to be informed....and need to Lobby as one... we need to unite in every

way. Parents needing help please email me direct as I don't always get a

chance to read all the lists,

thanks.... Peaceforkids2002@...

*********************************************

The Office Of Advocacy for Autistic Children

*********************************************

----- We Need Your help to stay open -------

**********************************************

E. ,

Reg. U.S. Civil Rights Lobbyist

Dir, OAAC Dir, C.O.P.S. <inquire about this>

Lil Mikey's Daddy

============================

" We Speak for those who can not, we will fight relentlessly for the Civil

Rights of all Children....disabled or not .. Globally "

============================

Contact Mike for free online advocacy here at this email address or

call if you need immediate assistance at 808-845-7841 in Honolulu at my

home office.......1659 Meyers Street Monolulu, HI 96819(send any

doc's/donations here please)....... We offer parents up to 1 hour of free

teleconference or phone advice. Due to increasing costs and lack of outside

funding/donations(if you can send us either long distance phone cards or a

small monetary donation to help cover office supplies and other costs..we

would realy appreciate it), we are now asking for a min. donation of

$300.00 to cover the costs of initiating the case and preparing the due

process documents/discovery... for cases that go beyond the need of a phone

conference or teleconferece with the district and require more than 1 hour

of teleconference time, we ask for a donation based on the current

situation. This is to cover the cost only... of the services we provide...

we are a not for profit entity and work for children, not money. For

informal help you can also call , our Chicago area rep at 217-586-7504,

for free phone advocacy anytime. In person professional advocacy available

on a case by case basis nationwide. We will be partnering up with a new

attorney soon here in Hawaii where our office will be located, until then

please call me at the 808 # if you need to....

don't hesitate.

" Peace to the Children "

- Mike

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

>From: jn516 <jn516@...>

>Reply-Autism_in_Girls

>Autism_in_Girls

>Subject: Re: Update

>Date: Wed, 04 Dec 2002 21:56:31 -0500

>

>The MMR does not have Thimerosal in it. One of the vaccinations that

>does or should I say did contain Thimerosal is the DPT. There are others

>that contained Thimerosal as well.

>PATRICIA HOYT wrote:

>

> > I hadn't thought of that possibility, but good point, worth looking into

>too. Pati

> >

> > Re: Update

> >

> > Okay, I have another question. If you give the MMR separately wouldn't

>you be giving them even more preservatives at a time? That is something

>that my dr is concerned about. He understands about not attacking their

>immune systems with all three at once but is thinking even more foreign

>things introduced.

> > Thoughts anyone?

> >

> > Elaine

> >

> >

> >

[Guest guest]

Hi Lynn,

thanks so much for this information. I knew I had seen articles, and

read other posts about the MMR NOT having Thimerosal, but I never knew

about it being used in the processing of it!

redhead60707 wrote:

> ---Hi--Thimerosal has never been in MMR shot but is used in the

> processing. The reason the MMR can be implicated in Autism is that

> our kids get loaded with prior vaccines with thimerosal which causes

> immune dysfunction. The MMR shot then causes numerous problems. 3

> live viruses in one shot is not safe for many kids, regardless of

> thimerosal. I am on the autism treatment list daily and will send you

> info. re. your concern.

>

>

>

>

> In Autism_in_Girls@y..., " PATRICIA HOYT " <phoyt916@m...> wrote:

>

>

>>Oops, thermersol should be thimerosal. Luckily, I didn't have to

>>

> spell it for the doctor, LOL. Pati

>

>>

>> Update

>>

>>

>>DO OTHER PEOPLE RUN INTO THIS STUFF:

>>

>>I just got off the phone with is' doctor and I was asking him a

>>

> few questions. He had wanted is to get a flu shot and I was

> scared because I've been reading all this stuff about Mercury

> poisening and he acted annoyed when I expressed my concerns. He

> said, well I lined up all my grandchildren on Thanksgiving and gave

> it to them before they had Turkey. Then I asked him if a supplement

> of Zinc would be a safe alternative because that was recommended to

> me. He said NO! He said not to give her Zinc and that Zinc

> deficiencies are rare and too much could be harmful. Then I asked

> him if it would be appropriate for a Doctor to make specific

> recommendations about the amount of speech and OT therapy a child

> should receive because currently is is only receiving 1 hour per

> week of each. He said, yes, I should ask the dev. ped. to do that

> but I need to recognize that there are limited resources and if they

> give is an additional hour of therapy then they are taking it

> from another child. Needless to say, it was not a good

> conversation. He either made me feel stupid or selfish! Just felt

> like venting! Pati

>

>>

>>P.S. I also asked him about the MMR and if it had thermersol in

>>

> it. And he said he was 99% sure that the MMR never had thermersol in

> it because it is a live vaccine. Is that true? I thought I had read

> that was the main vaccine with a problem. The reason I want to know

> is I have an 8 month old who will be subject to it in the future and

> I need to have my facts straight. Unfortunately, my printer is

> broken right now, so when I read stuff I can't print it out.

>

>>

>>

[Guest guest]

Thank you so much for you input. My experience has been so much the same with

my daughter. You really encouraged me to keep researching and find a doctor who

will listen and understand. Thanks alot. Sometimes you really start to wonder

if you are doing what is best. I will do more research on the zinc. Do you

know if there is a test for zinc deficiency? Thanks Pati

Re: Update

When Allie was 10 months old I began to find myself reading about

autism online late at night. At 19 months I finally called the doc

and said something was wrong with her, and he referred me to our

local university for a hearing test. I went back to him at 23 months

and told him we thought she is autistic. He immediately said he

didn't believe that autism could be diagnosed until 3 but he knew

the " experts " disagree with that. Over the next year as I would come

in for visits I told them we had discovered gluten/casein/salicylate

problems. They didn't know what I was talking about. I also had to

get occupational therapy, pediatric neurologist, and allergist on my

own, he never offered any help. Then, looking back I saw on 4

different office visits complaints I had made about Allie that were

all hallmarks of autism. 10 mo visit I said she was refusing a lot of

food and seemed to be in her own world. 12, 15, and 18 mo all

complained of how quiet she was, would eat very few foods and wasn't

walking. Nothing from pediatricians. Now I know none of these in and

of themselves are serious, but a descent ped should have been

concerned enough to look at her obviously low muscle tone, look

further into her verbal milestones, etc.

My point to all this is every thing I've done with Allie has largely

been on my own. I began zinc supplements after reading about the

study done through Pfeiffer about 90+ % of autistics having low zinc

to copper. I then found additional studies that supported this. My

ped would not have known squat. I did the research on the gfcf diet.

My ped knew nothing of it.

So, all this said, my suggestion is to keep searching until you find

a ped you feel is knowledgeable about autism and current treatments.

I switched to a ped who knows all about the gfcf diet, is very

concerned with the therapies Allie gets, and knows all about the

vitamins/minerals that are typically deficient in autistics. I would

bet 80% of the medical profession knows little/nothing about autism.

I have a sister-in-law in her second year of med school and she has

emailed me about how her professors dismiss treatments that parent

after parent have seen great success with their children. How sad is

that?

Debi

> >

> >

> > DO OTHER PEOPLE RUN INTO THIS STUFF:

> >

> > I just got off the phone with is' doctor and I was asking him

a

> few questions. He had wanted is to get a flu shot and I was

> scared because I've been reading all this stuff about Mercury

> poisening and he acted annoyed when I expressed my concerns. He

> said, well I lined up all my grandchildren on Thanksgiving and

gave

> it to them before they had Turkey. Then I asked him if a

supplement

> of Zinc would be a safe alternative because that was recommended

to

> me. He said NO! He said not to give her Zinc and that Zinc

> deficiencies are rare and too much could be harmful. Then I

asked

> him if it would be appropriate for a Doctor to make specific

> recommendations about the amount of speech and OT therapy a child

> should receive because currently is is only receiving 1 hour

per

> week of each. He said, yes, I should ask the dev. ped. to do

that

> but I need to recognize that there are limited resources and if

they

> give is an additional hour of therapy then they are taking it

> from another child. Needless to say, it was not a good

> conversation. He either made me feel stupid or selfish! Just

felt

> like venting! Pati

> >

> > P.S. I also asked him about the MMR and if it had thermersol

in

> it. And he said he was 99% sure that the MMR never had thermersol

in

> it because it is a live vaccine. Is that true? I thought I had

read

> that was the main vaccine with a problem. The reason I want to

know

> is I have an 8 month old who will be subject to it in the future

and

> I need to have my facts straight. Unfortunately, my printer is

> broken right now, so when I read stuff I can't print it out.

> >

> >

> >

[Guest guest]

Dear ,

We had an older pediatrician once tell us that a 5 year old couldn't

have sinusitis because their sinuses weren't big enough. Our ENT however has

told us that he has seen sinusitis in 3 year olds so perhaps there is some

training that the older pediatricians may not have gotten. Ourt ENT and

Immunologist have told us that for kids with repeated sinus infections, they

usually go a 21 day course to make sure they have it licked -- especially if

the child is still symptomatic at day 10. I think sometimes the docs just

prescribe for 10 days because they want to see the child back in the office

before they prescribe the next 10 days worth. Hope gets better soon.

--Martha (mom to Chrissy IgA deficiency etc.)

[Guest guest]

-- praying for you guys! Hope the kids feel better soon.

Pattie

[Guest guest]

,

Hang in there. When Abby isn't hooked up to the IV, have you tried a

lukewarm bath? The Motrin and bath combo are what work for my son when his

temp is really high. It's difficult because he gets chills, too and wants to

put blankets on. No warm blankets and no socks according to the Ped. Just a

cotton T-shirt and light cotton blanket. I've been praying for you

guys--thanks for keeping us posted.

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]

Dear ,

When was spiking temperatures greater than 105-- on Motrin,

our ped recommend we alternate Motrin and Tylenol and do lukewarm bed baths

as Sandi recommends (We couldn't get our daughter to move into the bath as

she was not very coherent with high fever). The Motrin and Tylenol can be

alternated and given every 2-3 hours again only under the care of a

pediatrician who also knows what other drugs are given. It does work.

--Martha(mom to Chrissy IgA deficiency etc.)

[Guest guest]

In a message dated 01/10/2003 7:56:35 AM Eastern Standard Time,

writes:

> What does all this mean? The dr acted really shocked/baffled that the ear

> infection could happen at this stage, and I am to take her back for review

> next Friday. If the ear is still looking bad he said he wasnt sure what he

> would try next- perhaps Rulide. In the meantime he has added in Septrim to

> the Cephalexin. I cant help wondering if this is aggressive enough

> treatment????? Should we be doing more or treating differently? Sinus

> stuff is all so new to me!

>

This sounds soooooo much like my son 's entire existence for over 3

years. The end result culminated in an admission to the hosptial due to

multi-drug resistant Staph and a serious yeast overgrowth in his ear and

sinuses. We spent 21 days on oral diflucan and 14 days of IV imepenem (top

of the line, big gun antibiotic). His ear and sinus did clear quickly in

that time ( he also had another set of tubes, tonsils removed and his ear

debrided as well as a port placed all at the same time as the IV treatment).

From there they put him on IVIG in hopes that he would show a decrease in the

number of infections. Lo and behold, he hasn't had one since. But I should

mention that I don't think the IVIG has been the magic bullet. What has made

his case so successful was the fact that the doctors were very agressive with

the debridment of the infection, used high dose and prolonged course of IV

antibiotics (based on cultures and sensitivities) and adequetly treated his

yeast infection AS WELL as adding the IVIG to the mix. Once he was actually

infection free (I know that some kids, or even most PID kids, won't ever

really get to that point unfortuantely) the IVIG was able to ward off any

more offending agents.

I guess what I am trying to say, is that by just rotating through the

antibiotics the way some of the doctors do with our kids, sets the child up

for a real uphill battle as resistance becomes a bigger and bigger problem.

Then something as small as an ear infection because a " life threatening "

illness simply by virtue that there is no course of action to take except

very powerful (last line of defense) antibiotics. These drugs should be

reserved for serious infections, ie. sepsis, pneumonias, invasive infections,

etc, not for otitis media. But that is exactly were we found ourselves with

. So I would recommend getting a GOOD culture of her ear and sinuses

and then the sensitivities to the best drugs to take. This is the only right

way to treat those nasty, stubborn infections.

I know this has been said by many here and most will respond with the same

suggestions. I hope the doctor will be a good listener and get your little

one the help she needs. Hang in there !!

Take care and God Bless,

Mommy to Annette 12 (Selective Antibody Deficiency-IGG 2 and 4, CP,

Developmental Delay, g-tube, HIV+, IVIG x 2.5 years), 7 (PID, brain

tumor survivor, severe hearing loss, chronic sinus and ear infections,

asthma, seizure disorder, IVIG x 6 months, port-a-cath) and Trayvon 4

(Ivemark Syndrome, severe congenital heart defects, asplenia, situs inversus)

All wonderful!!!!!

<A HREF= " http://www.caringbridge.com/ny/my2angels/ " >Click here: CaringBridge -

my2angels</A>

[Guest guest]

They do make thermisol free vaccinations now! Well so I heard I

havent asked.

-- Re: Update

I hadn't thought of that possibility, but good point, worth looking into too

Pati

Re: Update

Okay, I have another question. If you give the MMR separately wouldn't you

be giving them even more preservatives at a time? That is something that my

dr is concerned about. He understands about not attacking their immune

systems with all three at once but is thinking even more foreign things

introduced.

Thoughts anyone?

Elaine

[Guest guest]

Dear ,

Sounds like you have been through the wringer these past couple of

days. Hang in there--you can do it!

--Martha (Chrissy's mom)

[Guest guest]

- has had an upper endoscopy before?

Ursula Holleman

mom to (10 yrs old) and Macey (7 yr. old with CVID, asthma, sinus disease,

GERD, Diabetes Insipidus, colonic

inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation's 2003 National Conference

http://www.execinc.com/idf/

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

[Guest guest]

Hi Belinda Rose,

Whenever I have had an important question, I have called 's Cardio's

office. He is excellent about calling me back--and this has alleviated many

sleepless nights. Once in a while, an important question pops up that can't

really wait for several months. Plus, he or she may want to see Cassie

sooner if her status has changed.

Please keep us posted.

Sandi--Mom to , age 10. Suspected IgA def., Tetrology of Fallot, chronic

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

surgeries, heart surgery pending.

[Guest guest]

Dear Belinda Rose,

What is Cassie's Pulse and how old is she? Is she dropping heartbeats

or is one section of the EKG prolonged or shortened? I am assuming she does

not have a pacemaker. It may not be anything but I would err on the side of

caution. There may be many reasons for irregular heartbeat. But you don't

want to let a possible heart conduction problem go undetected. Having a pulse

that is too low is also something that the nurse should be monitoring. If it

were my child I would definitely let the pediatric cardiologist know what is

happening.

--Martha

[Guest guest]

Martha,

Cassie does not have a pacemaker. I do and it was put in June 02. I went

many years with an undetectable heart condition. Once I got the pacemaker,

you would not believe the difference it made. Cassie is 8 years old and is

having frequent PAC's of the heart and the cardiologist was thinking about

having to medicate her. But, the medications are too dangerous unless she is

having many symptoms of tachycardia. Her pulse is usually normal, but has

tended to become tachy. He wants to do another Holter next month to compare

it to the previous 2 that they have done. I keep hearing that it can be

dangerous to have this, but the medications are more dangerous. To me, that

makes no sense. But, all the cardiologists have agreed upon this. So, they

just have her on a 2/3 month recheck. Thanks for your input and concern.

How is Chrissy?

Belinda Rose,

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

for 6 years, heart condition

[Guest guest]

In a message dated 2/17/03 3:44:46 AM Pacific Standard Time, rrdgtchr@...

writes:

> I keep hearing that it can be

> dangerous to have this, but the medications are more dangerous.

Belinda,

They are saying that the Holter is dangerous? Which med would be

considered if they go in that direction?

Sandi--Mom to , age 10. Suspected IgA def., Tetrology of Fallot, chronic

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

surgeries, heart surgery pending.

[Guest guest]

In a message dated 2/17/03 3:44:46 AM Pacific Standard Time, rrdgtchr@...

writes:

> I keep hearing that it can be

> dangerous to have this, but the medications are more dangerous.

Belinda,

They are saying that the Holter is dangerous? Which med would be

considered if they go in that direction?

Sandi--Mom to , age 10. Suspected IgA def., Tetrology of Fallot, chronic

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

surgeries, heart surgery pending.

[Guest guest]

Hi Sandy,

No, the holter itself is not dangerous. It is the med's side effects that

are dangerous. I just don't get the fact that a medicine will have dangerous

side effects if it is going to treat a condition that in itself is dangerous.

I guess they weigh the more dangerous against each other. I do not even

know what the medicine is that they would be putting her on if they do decide

to medicate. I probably will have to do some extensive research. I don't

have the luck that you have with your cardiologist (count your blessings).

She has been seen by 3 here in town who I really am not too happy with. Then

one comes from Texas Children's in Houston who I absolutely adore. I called

the local doctor's today as to when they want to set up her next appt. and

told them that she is still having the irregular heartbeats and this time

there were lots more according to the nurse. I never got a phone call back.

I just think that is so unprofessional. It seems that our local

cardiologists/surgeons are the worst as far as bedside manner and

professional courtesy. I would call the Houston dr. but it is so much more

difficult than calling her local docs. I just feel like screaming sometimes.

Well, such is luck with some of these doctors. When does go back to

his cardiologist?

Belinda Rose,

Mom to Allyssa and Cassie, igg immunodeficient, asthma, sinusitis, IVIG for 6

years, heart condition

[Guest guest]

In a message dated 2/17/03 4:01:08 PM Pacific Standard Time, rrdgtchr@...

writes:

> When does go back to

> his cardiologist?

Hi Belinda,

The Cardiologist always calls me back, but not necessarily immediately. If

it is an urgent message, I let them know in the office because they will

prioritize it differently. Having a child with a Cardiac condition is scary,

and I think it would be even more difficult if the Docs wouldn't call me

back. The other option that you have is to just make an appointment earlier

than March. You could call and explain that you think it would be beneficial

for her to be seen since her status has changed. I have done that before.

goes in at the end of May for his check up. But I am seeing signs

that he might be closer to needing his valve. He is tired more frequently,

he even takes naps several times a week and that is totally unlike him.

Today, he slept for two or three hours. Gulp, it might be time this summer

to get it over with. It used to be that he stayed home from school because of

his immune status. Now, I can see that he wouldn't be able to physically

keep up if he were in school. Thanks for asking

Sandi--Mom to , age 10. Suspected IgA def., Tetrology of Fallot, chronic

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

surgeries, heart surgery pending.

[Guest guest]

In a message dated 2/17/03 4:01:08 PM Pacific Standard Time, rrdgtchr@...

writes:

> When does go back to

> his cardiologist?

Hi Belinda,

The Cardiologist always calls me back, but not necessarily immediately. If

it is an urgent message, I let them know in the office because they will

prioritize it differently. Having a child with a Cardiac condition is scary,

and I think it would be even more difficult if the Docs wouldn't call me

back. The other option that you have is to just make an appointment earlier

than March. You could call and explain that you think it would be beneficial

for her to be seen since her status has changed. I have done that before.

goes in at the end of May for his check up. But I am seeing signs

that he might be closer to needing his valve. He is tired more frequently,

he even takes naps several times a week and that is totally unlike him.

Today, he slept for two or three hours. Gulp, it might be time this summer

to get it over with. It used to be that he stayed home from school because of

his immune status. Now, I can see that he wouldn't be able to physically

keep up if he were in school. Thanks for asking

Sandi--Mom to , age 10. Suspected IgA def., Tetrology of Fallot, chronic

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

surgeries, heart surgery pending.

[Guest guest]

Sandy,

Keep us posted as to what the cardiologist says. We will keep

thinking/praying for him. Well, this is day 2 that I have not heard from the

cardio's office. I am calling the ped tomorrow and seeing if he could

possibly make the call and if he gets a better response. I will keep you

posted.

Belinda Rose,

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

for 6 years, heart condition

[Guest guest]

In a message dated 2/18/03 6:22:36 PM Pacific Standard Time, rrdgtchr@...

writes:

> I am calling the ped tomorrow and seeing if he could

> possibly make the call and if he gets a better response.

Belinda Rose,

Excellent idea!! The Peds often have almost instant access to the Cardios.

If you are worried about your lack of communication with him/her, maybe you

could address it when you are in the office? I think it's important that you

at least feel that you can contact the Cardio when necessary. Let us know

what happens!

Sandi, 's Mom