New here

[Guest guest]

Welcome Kat!

I'm so sorry to hear about your son's vaccine reaction. Vaccines are capable of

producing various of responses in different people, depending on their

individual susceptibility. Vaccines disable the immune system, and the results

are often anyone's guess. The reactions may be immediate or they may take a

week, a month, or even years to show up. So, the fact that your son developed

an auto immune disorder at such a young age, and reacted after his vaccines is

classic.

Someone else may develop asthma, allergies, diabetes, rheumatoid arthritis,

chronic ear infections, autism, etc. etc.

It is absolutely your right to refuse any additional vaccines. Your MD may not

like it, but this is YOUR child and you are in charge of making the decisions

regarding his health!

And you'll here people say your child can't attend public school without his

shots. Hogwash! Every state has exemptions available so you can do exactly

thta. Here is a link to Massachusett's exemption laws. They have medical and

religious exemptions available. Medical ones are next to impossible to get and

are often just given for one particular vaccine.

http://www.909shot.com/state-site/Massachusetts.htm

I'm sure there are others here from Mass. that can give you suggestions on

obtaining a religious exemption. I live in Kentucky and have one for my

children. Some states require you to be a member of a certain religion that is

specifically against vaccinations (ie Christian Scientists). But KY and I

believe Mass. only require that you state " immunization conflicts with his

sincere religious beliefs "

You may have to sign a specific form, as we do here in KY. But check on your

state law and follow it exactly.

If you have any further questions, please don't hesitate to ask. This is a

great group for information as well as support.

Kay

New here

Hi -

I wanted to introduce myself and ask for some information. My son

Gerard who is 21 months has Alopecia Totalis. This is an auto-immune

disease that once triggered, causes an immune response that results

in rapid hair loss. My son's is quite severe with it effecting his

eyebrows as well as lashes.

Now I suspect that his " trigger " was his 9 months vaccinations. He

developed a bald spot that grew back quite quickly. However, after

his 1 year more spots and then after his 18 months all his hair fell

out. Has anyone ever heard of vaccinations causing Alopecia? Of

course his Dr's don't seem to think its related.

My real question is, do I as a parent have any rights in refuseing

any further vaccines. We live in Massachusetts and Im not sure what

the " Laws " are concerning this.

Thanks for any advise.

KAT

[Guest guest]

To add on to what you said for kat.

NYS only requires you to provide a statement to the

schools/ daycares that you do not vax for religious

reasons.

As far as the doctors office you have to sign a waiver

that states that you no longer want vax, and that you

understand the reprecussions of not having her vax.

(As if they were going to be liable in any situation).

Basically be firm with your doctor about your

wanting to stop vax, ask for the waiver and explain to

him that if you ever change your mind you will be the

one to readdress the issue.

On my daughter's chart I have even went so far as to

exclude any other doctor or nurse or staff to discuss

the vax issue with me. I have demanded that it only

be her primary physician.

And of course she gives me the big hoopla every time I

am there and I just nod my head. And say no not at

this time.

Good Luck and be very strong and firm. This is the

type of thing that the medical professionals dont like

and frown upon.

You are a great mother with great instincts follow

those instincts. They are currently telling you that

the child has been negatively affected by vax. I

would also try contacting the Vaccination Injury

Compensation Hotline. the info is on the same website

the other poster has noted www.909shot.com

I will pray for you as I do for all in this group.

Knowledge is power, (something that the powerful don't

want us to have. Make sure to keep abreast with the

group for greatinformation and insights.

Peace

Jackie B.

--- KPhilpot <KPhilpot@...> wrote:

> Welcome Kat!

>

> I'm so sorry to hear about your son's vaccine

> reaction. Vaccines are capable of producing various

> of responses in different people, depending on their

> individual susceptibility. Vaccines disable the

> immune system, and the results are often anyone's

> guess. The reactions may be immediate or they may

> take a week, a month, or even years to show up. So,

> the fact that your son developed an auto immune

> disorder at such a young age, and reacted after his

> vaccines is classic.

>

> Someone else may develop asthma, allergies,

> diabetes, rheumatoid arthritis, chronic ear

> infections, autism, etc. etc.

>

> It is absolutely your right to refuse any additional

> vaccines. Your MD may not like it, but this is YOUR

> child and you are in charge of making the decisions

> regarding his health!

>

> And you'll here people say your child can't attend

> public school without his shots. Hogwash! Every

> state has exemptions available so you can do exactly

> thta. Here is a link to Massachusett's exemption

> laws. They have medical and religious exemptions

> available. Medical ones are next to impossible to

> get and are often just given for one particular

> vaccine.

>

> http://www.909shot.com/state-site/Massachusetts.htm

>

> I'm sure there are others here from Mass. that can

> give you suggestions on obtaining a religious

> exemption. I live in Kentucky and have one for my

> children. Some states require you to be a member of

> a certain religion that is specifically against

> vaccinations (ie Christian Scientists). But KY and

> I believe Mass. only require that you state

> " immunization conflicts with his sincere religious

> beliefs "

>

> You may have to sign a specific form, as we do here

> in KY. But check on your state law and follow it

> exactly.

>

>

> If you have any further questions, please don't

> hesitate to ask. This is a great group for

> information as well as support.

>

> Kay

>

> New here

>

>

> Hi -

>

> I wanted to introduce myself and ask for some

> information. My son

> Gerard who is 21 months has Alopecia Totalis.

> This is an auto-immune

> disease that once triggered, causes an immune

> response that results

> in rapid hair loss. My son's is quite severe with

> it effecting his

> eyebrows as well as lashes.

>

> Now I suspect that his " trigger " was his 9 months

> vaccinations. He

> developed a bald spot that grew back quite

> quickly. However, after

> his 1 year more spots and then after his 18 months

> all his hair fell

> out. Has anyone ever heard of vaccinations

> causing Alopecia? Of

> course his Dr's don't seem to think its related.

>

> My real question is, do I as a parent have any

> rights in refuseing

> any further vaccines. We live in Massachusetts

> and Im not sure what

> the " Laws " are concerning this.

>

> Thanks for any advise.

>

> KAT

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

" When we give government

the power to make medical decisions

for us, we, in essence, accept that

the state owns our bodies. "

~U.S.Representative Ron , MD

The Nuremberg Code (to which NZ is a signatory) describes Informed Choice as:

- A choice made on the basis of adequate information concerning research and all

available alternatives.

- A choice made without controlling influences such as force, fraud, deceit,

duress, over-reaching or other forms of constraint or coercion.

Does this not apply to us?

__________________________________________________

[Guest guest]

Kat,

I'm no expert but I believe you would have to get a medical doctor who would be

willing and able to connect your sons Alopecia directly to the vaccinations he

recieved at 9mos. Unfortunately that will prove to be an arduous task but you

never know until you try. If you can do that you would have a valid medical

exemption which is recognised by every United State. Other exemptions include

Religious and Philisophical depending on what Massachusetts accepts. Vaccines

cause a great many auto-immune problems, but I can't say if that is one of them

though I wouldn't be surprised if it is.

Anita

mygerard04 <mygerard04@...> wrote:

Hi -

I wanted to introduce myself and ask for some information. My son

Gerard who is 21 months has Alopecia Totalis. This is an auto-immune

disease that once triggered, causes an immune response that results

in rapid hair loss. My son's is quite severe with it effecting his

eyebrows as well as lashes.

Now I suspect that his " trigger " was his 9 months vaccinations. He

developed a bald spot that grew back quite quickly. However, after

his 1 year more spots and then after his 18 months all his hair fell

out. Has anyone ever heard of vaccinations causing Alopecia? Of

course his Dr's don't seem to think its related.

My real question is, do I as a parent have any rights in refuseing

any further vaccines. We live in Massachusetts and Im not sure what

the " Laws " are concerning this.

Thanks for any advise.

KAT

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

[Guest guest]

Hi Bonnie, welcome!!!

That's great that he'll begin therapy so soon, is the therapist one

you know that is actually experienced with OCD? I think finding

someone is sometimes the most difficult thing once we get a

diagnosis. And finding someone to treat kids.

It's actually sort of nice to hear you say you've seen many OCD

patients, as sometimes I - and I'm sure others - feel we must be the

ONLY one in the city or even county that is dealing with OCD!

" Home " is where OCD just seems to " all come out " and sometimes I guess

it's just that they are more relaxed to " let go " at home. My son (16)

always did OK holding back at school for some behaviors and even

showed no compulsions if a guest was at the house. But once home or

guest left, OCD was back full-force!

Did your son's OCD seemed to appear overnight? Or when you think

back, did he have OCD tendencies that now have developed into OCD?

My son, now 16, had tendencies (as I call them, as he had behaviors

but no disorder) at a young age too, but OCD didn't appear until a few

months before age 12. But I can look at myself and family members

(and friends) and see OCD " tendencies " but no one with the disorder.

My son had lots of compulsions he would do " or something bad would

happen " to him; and he had to get a " just right " feeling. He's doing

much better now.

Many kids in this group began medications, such as Prozac, at a young

age. The therapy is sooooo important to learn to boss back his OCD!

Well, I've rambled a bit and lunch time is up! Please keep us updated

on how things are going and how the appt goes!

single mom, 3 sons

, 16, with OCD, dysgraphia and Aspergers

> My 6 year old son was just diagnosed with OCD. He started on Prozac

> today. I am a nurse and have, in the course of my 20+ year career,

> seen many patients with OCD. I can't get over how hard it is to deal

> with this " at home " . Thank goodness this place exists. I am not a

> psychiatric nurse by any means and I am petrified about not

> recognizing something that is important (especially with regard to

the

> meds). Any help there would be appreciated. My son will start

[Guest guest]

has always been an anxious kid and I knew all was not well

from early on. Looking back, it makes sense how we arrived in our

present predicament. At age 3, when he struggled with social skills,

I took him to a neurodevelopmental pediatrician who said that he had a

mild sensory integration dysfunction, hypotonia, and a tendency toward

anxious and obsessive behavior. He recommended that I watch him, act

upon what caused him trouble, and predicted that at some point in his

life, he would likely need meds for his anxiety.

Later, when he struggled with handwritting (hypotonia), we went to an

OT who worked on his fine motor skills and his sensory issues.

Once school started, the problems began. We worked with a therapist

trained in CBT and ERP for 8 months. He got better after the first

month, but then relapsed horribly this spring. With no further input

from her, no change of plans, even after I asked about meds in

addition to therapy, I terminated our relationship and sought a child

psychiatrist. The therapist that we will see is in their practice.

She is trained in CBT and ERP with children. I believe that the

therapist we worked with was not well versed in treating very young

children despite her insistance.

Our latest " bout " has been going on for 8 weeks. Every psychiatrist I

called had a waiting list. The one that finally went to is board

certified and had no waiting list. I worried that he may not be good

because there was no waiting list, but I knew my son needed meds. He

has joined a practice near my community and I think that's why there

was no wait. I hope that what little I do know will help me keep on

top of things and the practitioners.

This most recent bout of anxiety brought out a recurrent theme (over

the past year) of " being afraid he will throw up " in certain

situations. He cannot be reasoned with, talked out of it, and has

full blown panic symptoms when he can't escape the situation. He has

become agorophobic, eats and sleeps poorly. He also developed a

repetitive speech pattern. That's when I suspected OCD, and the

psychiatrist feels the same at this point.

My husband and I are so hoping that we will see improvement soon.

This is by far the most challenging thing we've faced as parents.

Thanks for your post. SOrry to have gone on so long. I guess I feel

safe here:)

Bonnie

> > My 6 year old son was just diagnosed with OCD. He started on Prozac

> > today. I am a nurse and have, in the course of my 20+ year career,

> > seen many patients with OCD. I can't get over how hard it is to deal

> > with this " at home " . Thank goodness this place exists. I am not a

> > psychiatric nurse by any means and I am petrified about not

> > recognizing something that is important (especially with regard to

> the

> > meds). Any help there would be appreciated. My son will start

[Guest guest]

Hi Bonnie!

I don't have much time to post (I have twin toddler boys that are

fighting in the other room :-( ), but I wanted to say Hi and let you

know that I have a 10 yr. old daughter that has the " fear of throwing

up " type of OCD. At first she was diagnosed as having a phobia, but we

all realized later it was OCD after she started some mild avoidance

compulsions. She is currently not having ANY obsessive thoughts and is

eating well. She takes 30 mgs. of Prozac and it's been great for her

anxiety, although we deal with a little more anger (it was a lot more

anger at first, but it's mellowed) and some silly behavior, but not too

bad. She was on Celexa and it wasn't so great for her. She had a

terrible waxing period this spring and basically stopped eating again

and her anxiety was off the charts. We switched to Prozac and she had

terrible anxiety getting on it for about 6-8 weeks. Then we noticed a

big improvement. Hope this helps! Gotta go run interference! :-)

Dina

[Guest guest]

This most recent bout of anxiety brought out a recurrent

theme (over the past year) of " being afraid he will throw up " in

certain situations.

OH Bonnie, are you in the RIGHT place! That worry has been a topic

here many times, and I'm sure you'll get tales on this and some

helpful suggestions, experiences! Luckily for me, my son hasn't had

that particular concern. Hmm...he is VERY reluctant about trying new

foods (very limited diet), I might have to " pick at his brain " a bit

to see if that's a possibility. However, he had food texture issues

growing up, so I just always relate things to that. He also was so

very intolerant of odors/smells...other things I can't think of right

now. And used to ask me all these reassurance questions about every

little thing on his body and whatever he was feeling inside. Like

would he get cancer, what is that (pointing to some blemish), how

long until this heals...and come back and ask again; and sometimes

again & again.... That was back in elementary school.

My son also had fine & gross motor skill problems. Still has an

awkward pencil grasp, makes writing tiring. Saw an OT for...at least

a year I think, but that wasn't until 6th grade. It still did a lot

of good for him though, helped his whole body out.

It's been suggested here that when trying to get appts, ask to be put

on their " call list " (or whatever) in case someone cancels an appt.

Though that can be tough for working parents, last minute calls like

that.

This group is the best place just to read, ask questions, vent on

bad/stressed days, offer support, get suggestions.... It's been my

very best support all these years!

Well hope all those " vomit fear " experienced parents soon see your

post!

, 16, with OCD, dysgraphia and Aspergers

> has always been an anxious kid and I knew all was not well

> from early on. Looking back, it makes sense how we arrived in our

> present predicament. At age 3, when he struggled with social

skills,

[Guest guest]

Thanks so much for your post. My son sounds a lot like her. Our doc

ordered Ativan for " emergencies " . I am trying to keep things a little

low key so that he can adjust. I also have a 4 year old daughter and

they have been fighting a lot lately. Sometimes, I am not sure who I

feel the worst about - my son or my daughter. Good luck with the

toddlers... I am a twin and my brother is 2 years older than I -

don't know how my mom did it!

Bonnie

> Hi Bonnie!

>

> I don't have much time to post (I have twin toddler boys that are

> fighting in the other room :-( ), but I wanted to say Hi and let you

> know that I have a 10 yr. old daughter that has the " fear of throwing

> up " type of OCD. At first she was diagnosed as having a phobia, but we

> all realized later it was OCD after she started some mild avoidance

> compulsions. She is currently not having ANY obsessive thoughts and is

> eating well. She takes 30 mgs. of Prozac and it's been great for her

> anxiety, although we deal with a little more anger (it was a lot more

> anger at first, but it's mellowed) and some silly behavior, but not too

> bad. She was on Celexa and it wasn't so great for her. She had a

> terrible waxing period this spring and basically stopped eating again

> and her anxiety was off the charts. We switched to Prozac and she had

> terrible anxiety getting on it for about 6-8 weeks. Then we noticed a

> big improvement. Hope this helps! Gotta go run interference! :-)

>

> Dina

[Guest guest]

Welcome ,

My daughter is 9 with CVID, getting IVIG every 2 weeks, also with a port. Lots

of support and good stuff here.

mom to - CVID, asthma, GERD

new here

Hello everyone, My name is and i am new to this group..

I have three children that are all immune deficient. As well as myself.

We all have a mitochondrial disease and i have Lupus.

The kids are all deficient in IgG, IgA, IgM, IgG2 and 4 as well as C3,

and C4. They fail to produce antibodies. I am deficient in C3 , C4 CH50

and also dont produce antibodies.

The kids take IVIG every three weeks through their port a caths.

My son and one daughter also have positive sweat tests and malabsorption.

well that is us in a nut shell..

hope to learn alot here and get to know everyone..

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:

/messages<PedP\

ID/messages>

[Guest guest]

Hi ,

Just thought I'd say " hi " - saw your addy.... I'm also in both the mito and

group as I have a IgA and polysacharide antibody deficiency, my older

son has IgG2 and IgA deficiency, and my youngest son has mito....

lots of good info on both sites!

Anne R

www.caringbridge.org/fl/asher

[Guest guest]

Hello and family my name is Dawn I have a 3 year old named

with cvid getting ivig every four weeks. This site is very informative

and comfoting. We wish you luck and welcome you. Dawn mother to Nick 9

healthy and cvid, asthma, developmental delay, acid reflux

disease

--- mitomomx3 <MitomomX3@...> wrote:

> Hello everyone, My name is and i am new to this group..

> I have three children that are all immune deficient. As well as myself.

> We all have a mitochondrial disease and i have Lupus.

> The kids are all deficient in IgG, IgA, IgM, IgG2 and 4 as well as C3,

> and C4. They fail to produce antibodies. I am deficient in C3 , C4 CH50

>

> and also dont produce antibodies.

> The kids take IVIG every three weeks through their port a caths.

> My son and one daughter also have positive sweat tests and

> malabsorption.

> well that is us in a nut shell..

> hope to learn alot here and get to know everyone..

>

>

>

>

>

__________________________________

Stay connected, organized, and protected. Take the tour:

http://tour.mail./mailtour.html

[Guest guest]

Hello and family my name is Dawn I have a 3 year old named

with cvid getting ivig every four weeks. This site is very informative

and comfoting. We wish you luck and welcome you. Dawn mother to Nick 9

healthy and cvid, asthma, developmental delay, acid reflux

disease

--- mitomomx3 <MitomomX3@...> wrote:

> Hello everyone, My name is and i am new to this group..

> I have three children that are all immune deficient. As well as myself.

> We all have a mitochondrial disease and i have Lupus.

> The kids are all deficient in IgG, IgA, IgM, IgG2 and 4 as well as C3,

> and C4. They fail to produce antibodies. I am deficient in C3 , C4 CH50

>

> and also dont produce antibodies.

> The kids take IVIG every three weeks through their port a caths.

> My son and one daughter also have positive sweat tests and

> malabsorption.

> well that is us in a nut shell..

> hope to learn alot here and get to know everyone..

>

>

>

>

>

__________________________________

Stay connected, organized, and protected. Take the tour:

http://tour.mail./mailtour.html

[Guest guest]

Hi , welcome to the group, I've learned so much here myself!

My son Conner has an immune disorder, not sure what it is yet. My other

kids and my husband all have low IgG, just not low enough to treat at this

time. Conner has been doing subcutaneous IG replacement (SCIG).

We thought that Conner had mito and were scheduled to go to Dr. Shoffner in

GA, but eventually learned that the newer symptoms we were seeing were more

related to his Cushing's Syndrome, caused by steroids.

Anyway, looking forward to getting to know you!

Mom to Conner (11, Asperger's, mild CP, partial seizures, asthma, GERD,

immunodeficiency-SCIG, and now adrenal insufficiency),

Hayden (11, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (11, asthma and mild hearing loss/unaided),

and Kelsey - (9 going on 19!)

[Guest guest]

Hi Chuck

You are to be greatly admired for loving so many children. gave you some good info. The toothbrushes, but also comb's and brushes. Everyone should have their own and never use anyone else's.

Welcome to the group. I know you'll get a lot of wonderful help here.

SuSie

There is also a SuZie here.

[Guest guest]

In a message dated 7/5/2005 6:48:29 AM Pacific Standard Time,

MitomomX3@... writes:

Hello everyone, My name is and i am new to this group..

Hi ,

My son has CVID, Ig1 subclass deficiency and Polysaccharide antibody

deficiency. He also has heart conditions which I've listed below. He receives

IVIG

every four weeks for now and it's made an amazing difference in his life.

I also have Lupus and Sjogren's Syndrome. Welcome.

Sandi, Mom to , age 12--CVID, Tetrology of Fallot, Pulmonary Valve

transplant (2003), allergies (including meds), asthma, GERD, Carnitine

deficiency--also an aspiring Doctor and Director!

[Guest guest]

Hi Felipe,

I'm Tom, 35 with type 3. Welcome to the group!

-------------- Original message --------------

Helo everybody

I'm Felipe da Motta 22 (almost 23) years old man from extreme south of

Brasil and I've discovered two months ago the name of my disease (SMA type 2)

I hope to get here a lot of informatins I need to live better until the

cure.

Also I have a vary bad english and I hope everybody must be a little

patienced with my texts...

Thanks a lot

Felipe

[Guest guest]

welcome to the group. This is a great bunch of

people. My name is Chrissy and my 2 year old daughter

has sma type 2.

--- Felipe da Motta <felipe@...> wrote:

> Helo everybody

> I'm Felipe da Motta 22 (almost 23) years old man

> from extreme south of Brasil and I've discovered two

> months ago the name of my disease (SMA type 2)

> I hope to get here a lot of informatins I need

> to live better until the cure.

> Also I have a vary bad english and I hope

> everybody must be a little patienced with my

> texts...

> Thanks a lot

> Felipe

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________

Stay connected, organized, and protected. Take the tour:

http://tour.mail./mailtour.html

[Guest guest]

,

Sorry I am so late in replying but I have been having computer

issues. My son is 2 and is deficient in his CH50, C1Q, C3 and C4. I

am assuming that you probably have a lot more information on this

than I do - since I am VERY new to all of this. I am not deficient in

my complements but my rheumatologist thinks I have Lupus (I am

pregnant so we have to wait to draw the last set of labs that he

wants before he gives the official diagnosis - but I meet all the

criteria and have had positive ANA's in the past with some other test

results pointing towards Lupus also).

Anyway, I guess my question with you is this -

What, if anything - can they do for complement deficiencies - and

what does it mean in the bigger picture? My son, Will, is only

deficient in his IGG subclass 1 and 4 - but so far no one really

knows what to do with him.

We see a doctor in Boston at Children's tomorrow and I am hoping that

I get some answers - I have a ton of lab work that his previous

immuno doc had drawn - so I am bringing that with us - but really

have NO IDEA what to ask, what to expect, what this means, or what

they can do (if anything) to help. I read that there is a genetic

link - I am preg with #2 due in Sept and I am so nervous that I may

have passed this on to the baby too. So many questions.

Do you have any insight....or does anyone else?

You are one of the first people on this board that I have seen that

has posted anything about complements - so I am interested in your

thoughts.

Thank you again and I hope all is well with you.

Welcome

HUGS

Stefani - and Will

> Welcome ,

> My daughter is 9 with CVID, getting IVIG every 2 weeks, also with a

port. Lots of support and good stuff here.

> mom to - CVID, asthma, GERD

> new here

>

>

> Hello everyone, My name is and i am new to this group..

> I have three children that are all immune deficient. As well as

myself.

> We all have a mitochondrial disease and i have Lupus.

> The kids are all deficient in IgG, IgA, IgM, IgG2 and 4 as well

as C3,

> and C4. They fail to produce antibodies. I am deficient in C3 ,

C4 CH50

> and also dont produce antibodies.

> The kids take IVIG every three weeks through their port a caths.

> My son and one daughter also have positive sweat tests and

malabsorption.

> well that is us in a nut shell..

> hope to learn alot here and get to know everyone..

>

>

>

>

>

>

> 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:

/messages<

group//messages>

>

[Guest guest]

Has your son with the complement deficiencies ever been diagnosed with

Hereditary angioedema? The C1q and the C3/C4 deficiencies are seen with

this. Has he ever had any swelling internally or externally that they

couldn't explain? I've heard of another boy recently with a similar

complement problem and it just made me wonder.

Ursula Holleman

mom to (12 yrs old) and Macey (10 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

IDF Patient/Family Handbook

http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

/

[Guest guest]

Ursula,

Thank you for raising that question. He has not been diagnosed with that

condition - acutally, the doctors are stumped (surprise surprise) -

We took him into Boston to see an immunologist at Children's on Thursday of

last week - I came prepared with a history, summary, lab reports - pretty much

every part of Will's care over the past 2 years - in a binder - along with

some information that I copied for him to have (the summary). He came

recommended from the IDF - he was pretty overwhelmed and said in a joking manner

" Why do they all have to be difficult cases today "

He said that he didn't think that it was one thing causing the illnesses and

the rashes and the fevers - and that it was probably a few things - meaning

complements and immunoglobins....and who knows what else. He said he needed

a week to go over all the information that I had given him and he'd get back

to me. He did also briefly talk about IVIG, but that's a whole other post I

am going to make for this board....lots of questions on that.

So, in a nutshell - he HAS had swelling that has been unexplained - facial -

but the real marked swelling episodes have been attributed to allergic

reactions - the rest of the time it's mild puffiness.....I will definately raise

that question.

His old immunologist raised the question of paroxysmal nocturnal

hemoglobinuria - due to unexplained episodes of cyanosis around the mouth, nose,

hands

and feet (with no other symptoms) - but I don't think that's what it is to be

honest with you - we are testing his urine with hemastix as much as we can -

but it's terribly difficult to get a fresh urine sample with a child who is

not potty trained and the diapers are too good at soaking up the urine - and

for the amount of times that we would have to get the samples to rule it in/out

- the urine bag for him would be too traumatic....so, the new immuno didn't

really think it was necessary to push the testing at this point.

SIGH....who knows, I am just SO confused at this point - I just want answers

- funny enough, he was 'well' at the visit - came down with a fever the very

next day and has had fevers and a wierd rash since- gotta love 's Law.

Thank you for taking the time to post back offering your opinion - it's a

good suggestion to look into.

Sorry it took me so long to get back to you

Take Care

Stefani

[Guest guest]

Myoplex is used as a quick fix when you don't have time to have real food.

Just eat real food. Cottage cheese and an apple, that's way cheap. String

cheese and an apple, very cheap. Yogurt and cottage cheese. I have sliced

turkey and yogurt as a snack. Or lean roast beast and yogurt or an apple.

I was using the bars because I'm always driving around for work, but it's so

hot here they were melting in the trunk, so I got a good cooler and put real

food in it.

On 7/22/05 7:11 AM, " tryin425 " <marysw@...> wrote:

> I have decided today to start BFL. I have the book but feel like I

> still have no idea what to do. My diet is horrible and I am about 35

> lbs overweight if not more.

> My 1st question is this...the Myoplex powder is so $$$. I have a

> Naturade powder from Sam's Club. Can I use it in replacement of the

> myoplex powder? If not-what can I use to replace it that is more

> affordable and attainable?

>

> thanks alot

>

>

>

>

>

>

>

>

[Guest guest]

Yum, roast " beast! " Sorry, I proof read continually at work. Kinda of

funny typo tho!

>>> drval@... 07/22/05 9:15 AM >>>

Myoplex is used as a quick fix when you don't have time to have real

food.

Just eat real food. Cottage cheese and an apple, that's way cheap.

String

cheese and an apple, very cheap. Yogurt and cottage cheese. I have

sliced

turkey and yogurt as a snack. Or lean roast beast and yogurt or an

apple.

I was using the bars because I'm always driving around for work, but

it's so

hot here they were melting in the trunk, so I got a good cooler and put

real

food in it.

On 7/22/05 7:11 AM, " tryin425 " <marysw@...> wrote:

> I have decided today to start BFL. I have the book but feel like I

> still have no idea what to do. My diet is horrible and I am about 35

> lbs overweight if not more.

> My 1st question is this...the Myoplex powder is so $$$. I have a

> Naturade powder from Sam's Club. Can I use it in replacement of the

> myoplex powder? If not-what can I use to replace it that is more

> affordable and attainable?

>

> thanks alot

>

>

>

>

>

>

>

>

[Guest guest]

Eggs are cheap too, so cheap you can even afford to throw out most of

the yolks and eat only the whites. They are about the most perfect

protein there is so enjoy. There is not a more economical meal than 3-4

scrambled eggwhites(with one whole egg) and a bowl of 1/2 cup oatmeal.

Costs pennies. Hope this helps.

Stasia

[Guest guest]

That's what I call it, so not a typo!

On 7/22/05 9:30 AM, " baity " <lbaity@...> wrote:

> Yum, roast " beast! " Sorry, I proof read continually at work. Kinda of

> funny typo tho!

>

>>>> drval@... 07/22/05 9:15 AM >>>

> Myoplex is used as a quick fix when you don't have time to have real

> food.

> Just eat real food. Cottage cheese and an apple, that's way cheap.

> String

> cheese and an apple, very cheap. Yogurt and cottage cheese. I have

> sliced

> turkey and yogurt as a snack. Or lean roast beast and yogurt or an

> apple.

> I was using the bars because I'm always driving around for work, but

> it's so

> hot here they were melting in the trunk, so I got a good cooler and put

> real

> food in it.

>

> On 7/22/05 7:11 AM, " tryin425 " <marysw@...> wrote:

>

>> I have decided today to start BFL. I have the book but feel like I

>> still have no idea what to do. My diet is horrible and I am about 35

>> lbs overweight if not more.

>> My 1st question is this...the Myoplex powder is so $$$. I have a

>> Naturade powder from Sam's Club. Can I use it in replacement of the

>> myoplex powder? If not-what can I use to replace it that is more

>> affordable and attainable?

>>

>> thanks alot

>>

>>

>>

>>

>>

>>

>>

>>

[Guest guest]

Ha, yeah, I'm a roast beast eater too. :-) I guess I've seen The

Grinch too many times.

On 7/23/05, Dr. Val <drval@...> wrote:

> That's what I call it, so not a typo!

>

> On 7/22/05 9:30 AM, " baity " <lbaity@...> wrote:

>

> > Yum, roast " beast! " Sorry, I proof read continually at work. Kinda of

> > funny typo tho!

> >