Couple Questions

[Guest guest]

I have never had that happen before but glad that they

responded like they did and shut him down. I will keep

ya'll in our prayers for next trip.

Cassie

--- osdbmom <osdbmom@...> wrote:

> anybody know the adult range for IGG subclass 2? I

> have two different

> reference ranges from two different tests, and Im

> curious.

>

> Brennan had a HORRIBLE reaction to gammagard today.

> He was fine, this

> is the product he has gotten for nearly a yr,

> nothing

> changed......that we can think of.......and he was

> playing a video

> game and suddenly he yelled, IM COLD, HELP ME!! and

> he was shaking so

> hard he almost bit his tongue. His whole body, and

> he just screamed

> and screamed. It was awful. He got screaming so hard

> he coudlnt stop

> coughing. The nurses were just flying around, doing

> what they needed

> to do, and that was so comforting, bc they really DO

> know just what to

> do, and wow, our nurse had called our ID dr, who was

> 5 buildings down,

> and then he wasnt there in 2 seconds, so she called

> pulmo, and they

> werent there in 2 seconds, so she just kept slamming

> the emergency

> button. And of course, all the drs came running in

> at once.They had

> immediately stopped his infusion, and gave him

> antihistamine, which

> didnt help, then steroids, which didnt help, and

> finally demoral. ID

> dr thought he would be staying overnight, since we

> live so far, he was

> concerned, and said he would come back to check in a

> few hrs, and by

> then he might be awake again--goofy kid slept 10

> minutes and got up

> and started talking and playinig just fine. They

> observed him for a

> while longer and he got to come home. Dr said next

> time, we'll

> pretreat with....I think.....salumedrol(sp?) and

> hopefully it will

> never happen again. I hope not!! It scared the life

> out of me!!Anyone

> else experience this?

>

> valarie

>

>

www.marykay.com/cassieredinger

[Guest guest]

Valarie,

Yes, we had a similar experience with my daughter...for her very first IVIG.

She was shaking uncontrollably -- the only thing that helped was to turn down

the rate. 24 hr later she started with migraine, vomit, high fever. After

that, they did premeds with low dose steroid, super slow rate, and changed the

product to liquid (more lypholized (sp?). Eventually, they got her off the

steroid. I hope that Brennen's experience was a fluke but it does not hurt to

be extra cautious.

btw, did they ever test your T-cell function (in vitro, not skin tests) to yeast

and other antigens? I know you had mentioned the chronic thrush.

Take care,

[Guest guest]

---

,

The ID dr I was seeing locally is at the end of what he can do...so he

says......so he referred me to ID at U of M, where the kids go, for

April 23, I think. This dr is on recommendation from my kids ID guy,

who I really like. That was on Tuesday, on Thursday my pulmo told me

the test results with the CVID in there. I told him I had been

referred out to ID and he said to go ahead and go, bc they might be

able to do more testing that would help support the PID dx and help me

get to have IVIG sooner. I also mentioned this to the kids ID guy

while down at U ofM yesterday adn he also said to keep that appt.

So, even though we know I have def IgG, Im going to go ahead with the

other dr and hope he can do more testing. I hope h e can figure it out!!

valarie

In , Schulman <dietdoc@...> wrote:

>

> Valarie,

>

> Yes, we had a similar experience with my daughter...for her very

first IVIG. She was shaking uncontrollably -- the only thing that

helped was to turn down the rate. 24 hr later she started with

migraine, vomit, high fever. After that, they did premeds with low

dose steroid, super slow rate, and changed the product to liquid (more

lypholized (sp?). Eventually, they got her off the steroid. I hope

that Brennen's experience was a fluke but it does not hurt to be extra

cautious.

>

> btw, did they ever test your T-cell function (in vitro, not skin

tests) to yeast and other antigens? I know you had mentioned the

chronic thrush.

>

> Take care,

>

>

>

[Guest guest]

Valarie,

Who are you seeing at UM???

Pam

Tim cvid

************************************** AOL now offers free email to everyone.

Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

---

The kids see Weinberg, I'll be seeing Dr. Kaul--I cant think of

his first name this second:) Weinberg recommended him. I was first set

up to see Aronoff, but I had to change the appt day.

valarie

In , mole1440@... wrote:

>

> Valarie,

>

> Who are you seeing at UM???

>

> Pam

> Tim cvid

>

>

>

> ************************************** AOL now offers free email to

everyone.

> Find out more about what's free from AOL at http://www.aol.com.

>

>

>

[Guest guest]

---

The kids see Weinberg, I'll be seeing Dr. Kaul--I cant think of

his first name this second:) Weinberg recommended him. I was first set

up to see Aronoff, but I had to change the appt day.

valarie

In , mole1440@... wrote:

>

> Valarie,

>

> Who are you seeing at UM???

>

> Pam

> Tim cvid

>

>

>

> ************************************** AOL now offers free email to

everyone.

> Find out more about what's free from AOL at http://www.aol.com.

>

>

>

[Guest guest]

The only people who should be giving these diagnoses are licensed Ph.D.-

level clinical psychologists. Psychiatrists have a very short training

period compared with psychologists, who actually train them. Clinical

psychologists can back up their diagnoses with specialized tests and

clinical interviews, which will differ in quality from those in other

fields.

Often I hear that people have received psychiatric diagnoses (and

medication) from their internists/GPs/pediatricians. These diagnoses

are not valid. These practitioners are not trained in these areas, and

it is inappropriate for them to attempt to medicate outside of their

domain. Often the medication chosen (or even the dosage given) is

inappropriate for a particular case, and may even endanger someone's

health.

It is important to be careful about getting the right diagnosis,

especially if medication will eventually be involved. In that case,

the wrong diagnosis may lead to the wrong medication.

[Guest guest]

I have a three yr old with autism diagnoses and she was diagnosed by her family practioner so I do not know how you can make a statement like that even if you have a professional back groundjhsgpsy <june.shapiro@...> wrote: The only people who should be giving these diagnoses are licensed Ph.D.-level clinical psychologists. Psychiatrists have a very short training period compared with psychologists, who actually train them. Clinical psychologists can back up their diagnoses with specialized tests and clinical interviews,

which will differ in quality from those in other fields.Often I hear that people have received psychiatric diagnoses (and medication) from their internists/GPs/pediatricians. These diagnoses are not valid. These practitioners are not trained in these areas, and it is inappropriate for them to attempt to medicate outside of their domain. Often the medication chosen (or even the dosage given) is inappropriate for a particular case, and may even endanger someone's health.It is important to be careful about getting the right diagnosis, especially if medication will eventually be involved. In that case, the wrong diagnosis may lead to the wrong medication.

Never miss a thing. Make your homepage.

[Guest guest]

Due to time constraints, I may have been curt in my answer. This is

an attempt to clarify ...

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

As a parent, I would definitely consider reviewing my child's case if

it had been diagnosed by anyone other than a qualified Ph.D.-level

Clinical Psychologist. I would have the case reviewed by a qualified

practitioner (Ph.D. Clin Psych) (for behavioral work and dx), and a

psychiatrist (if seeking info on meds).

If any other type of physician or clinician diagnosed your child,

then he/she may mean well, but has limited training and experience.

This is a serious situation I have run by with many patients

(children and adults, some with medical issues (and a chance of

medication interactions, etc.)).

Fields now are highly specialized. There is simply too much to know,

and GPs, pediatricians, and internists are only too willing to

prescribe with their limited information. (There are a few who are

quite responsible and simply make a referral.) Psychiatrists are in

particular trained in the precise dosage and use of psychiatric

medication. They are not as well-trained in the area of diagnosis,

and are best off working with a clinical psychologist, in terms of

assessment.

This is not to say that all psychiatrists breeze through

diagnoses/histories/assessments, etc. I have run into some who take

a full history, and consider all medications taken by the patient,

and are, in fact, quite admirable in their coverage of details and

concern for the patient. In general, though, the length of their

initial training, etc., the way it is in the current scheme of

things - makes it so - in the best of worlds, you would hope that

patients would go to a clinical psychologist for a diagnosis and a

psychiatrist for meds (if need be).

These same psychiatrists (the few who do take an adequate history,

etc.) will not work on behaviors. They leave this work to the

psychologists. If there is no psychologist assigned to the case,

then the behavioral work will not get done.

If there are other mental health practitioners claiming to be experts

in this specific area, then perhaps this is an area of strength for

them. However, I would beg to differ that their training would be

equal to that of a qualified clinical psychologist. Most of us are

parents seeking the best in terms of treatment for our children, so I

definitely would not settle here.

This is not meant to be an affront to anyone who does differently. I

realize that this requires some excessive travel for those who live

in certain areas in which treatment by specialists is difficult or

unobtainable. (That's why I say, " in the best of worlds. " )

I have seen some questionable and worrisome decisions made by well-

meaning internists (even fancy ones from the Upper East Side of

Manhattan). Sometimes, they offer a patient meds which may interfere

with their blood pressure medication/heart condition, even though

they are the ones prescribing those medications. They are simply

unaware of the drug interactions because they are unfamiliar with the

medicines. It is outside of their specialty. The other issue is

when things are outside of their specialty, they do not prepare the

patient for side effects and environmental/behavioral/other effects

of their medications (e.g., effects on others in the family when an

individual takes a performance-enhancing drug, etc.). This is best

done with a psychiatrist hopefully working in conjunction with a

qualified practioner (read: clin psych).

(Another issue: it is commonly taught that a psychiatrist should not

see a patient without seeing a clinical psychologist. This practice

has gone down recently due to efforts towards cost reduction. This

is a problem for families, and it appears that people are choosing to

medicate before considering other options. The results of a

medication-only approach are minimal at best, and, in time, may leave

one with only side effects and no real behavioral change.)

To follow up on this, you can look up clinical psychologists with

your state psychological association. You would need a licensed

Ph.D. Clinical Psychologist with adequate training and background to

make a full assessment.

{One more issue: usually the prescribed method is to attempt

behavioral intervention first before utilizing medication. Recently

there has been a change towards medication before proper assessment

or behavioral work. This trend is not supported by science, and does

not represent the ideal treatment plan. In addition, there has been

a trend toward medication without psychological treatment. This is

inappropriate and will not help patients to change behaviors.

If the issues are behavioral, then the treatment should address the

behaviors ...}

[Guest guest]

YEAH!!! especially the Pnuemo strain lack of response. It is classic. But as you

know on average it takes 12 years to get diagnosed. Glad you have one now !!!

BARBIE

________________________________

From: Sorensen <sorensens004@...>

Sent: Wednesday, March 11, 2009 12:40:02 PM

Subject: couple questions

Hi,

I was filing some new labs and began to wonder yesterday about a couple old

results. My daughter wasn't diagnosed with PIDD until 2007. She was very sick

for a long time before that. I'm wondering if some old labs might have signaled

to the right doctor what to look for.

Low NK and NK activity (2001, 2005, 2007)

Abnormal B cell antigen D8/17

No immune response to any of the pneumonia strains (2001, 2003, 2007)

Chronic bad GI bacteria overgrowth

If a doctor had suspected PIDD, would any of these abnormalities have alerted

them?

Thank you,

[Guest guest]

Yes, it's happened to me once in 250 infusions.

>

> anybody know the adult range for IGG subclass 2? I have two different

> reference ranges from two different tests, and Im curious.

>

> Brennan had a HORRIBLE reaction to gammagard today. He was fine, this

> is the product he has gotten for nearly a yr, nothing

> changed......that we can think of.......and he was playing a video

> game and suddenly he yelled, IM COLD, HELP ME!! and he was shaking so

> hard he almost bit his tongue. His whole body, and he just screamed

> and screamed. It was awful. He got screaming so hard he coudlnt stop

> coughing. The nurses were just flying around, doing what they needed

> to do, and that was so comforting, bc they really DO know just what to

> do, and wow, our nurse had called our ID dr, who was 5 buildings down,

> and then he wasnt there in 2 seconds, so she called pulmo, and they

> werent there in 2 seconds, so she just kept slamming the emergency

> button. And of course, all the drs came running in at once.They had

> immediately stopped his infusion, and gave him antihistamine, which

> didnt help, then steroids, which didnt help, and finally demoral. ID

> dr thought he would be staying overnight, since we live so far, he was

> concerned, and said he would come back to check in a few hrs, and by

> then he might be awake again--goofy kid slept 10 minutes and got up

> and started talking and playinig just fine. They observed him for a

> while longer and he got to come home. Dr said next time, we'll

> pretreat with....I think.....salumedrol(sp?) and hopefully it will

> never happen again. I hope not!! It scared the life out of me!!Anyone

> else experience this?

>

> valarie

>

[Guest guest]

--This post is like, two yrs old. wonder why it came thru?

valarie

In , " Mark Leventhal " <clevelandfather@...> wrote:

>

> Yes, it's happened to me once in 250 infusions.

>

>

> >

> > anybody know the adult range for IGG subclass 2? I have two different

> > reference ranges from two different tests, and Im curious.

> >

> > Brennan had a HORRIBLE reaction to gammagard today. He was fine, this

> > is the product he has gotten for nearly a yr, nothing

> > changed......that we can think of.......and he was playing a video

> > game and suddenly he yelled, IM COLD, HELP ME!! and he was shaking so

> > hard he almost bit his tongue. His whole body, and he just screamed

> > and screamed. It was awful. He got screaming so hard he coudlnt stop

> > coughing. The nurses were just flying around, doing what they needed

> > to do, and that was so comforting, bc they really DO know just what to

> > do, and wow, our nurse had called our ID dr, who was 5 buildings down,

> > and then he wasnt there in 2 seconds, so she called pulmo, and they

> > werent there in 2 seconds, so she just kept slamming the emergency

> > button. And of course, all the drs came running in at once.They had

> > immediately stopped his infusion, and gave him antihistamine, which

> > didnt help, then steroids, which didnt help, and finally demoral. ID

> > dr thought he would be staying overnight, since we live so far, he was

> > concerned, and said he would come back to check in a few hrs, and by

> > then he might be awake again--goofy kid slept 10 minutes and got up

> > and started talking and playinig just fine. They observed him for a

> > while longer and he got to come home. Dr said next time, we'll

> > pretreat with....I think.....salumedrol(sp?) and hopefully it will

> > never happen again. I hope not!! It scared the life out of me!!Anyone

> > else experience this?

> >

> > valarie

> >

>

[Guest guest]

Kelp is not really going to help in this case. You should try something much stronger like Lugol's or Iodoral. Steph can advise you better than I can. Also. a Google search can help you to find the items that are good for the thyroid. Most of the items in the Whole GFoods thyroid support is correct. I have taken the tyrosine, zinc, manganese and such as seperate supplements and have taken them in higher doses. The thyroid glandular is good and taking adrenal glandular and a lot of vitamin C is also helpful.

I think you should call at Innerfocus.net and get a QXCI scan so you can find out what your deficiencies are and take a lot of the guess work out of this since you have a serious sounding problem, and the thyroid is such an important gland.

Jag

From: fordaboydz <fordaboydz@...>Subject: couple questionsiodine Date: Monday, June 29, 2009, 11:05 PM

Hi, I was at whole foods yesterday and bought 2 supplements, can I list the ingredients and get some feedback on if I should keep and use them or not? First is Whole Foods Brand of Iodine from Kelp (225 mcg)The 2nd is Whole Foods Brand of Throid Complete it has Vitamin b12 100mcg, Iodine as Potassium Iodine(200mcg) , Magnesium (200mg), Zinc(6mg), Copper(300mcg) , Manganese (2.3mg), Molybdenum (100mcg), Sodium (20 mg), L-Tyrosine (248 mg), Multi-Glandular Complex (70 mg), and Thyroid (thyroxin-free) (8mg). I also am concerned about arsenic in the Sea Kelp, is that a possibility? With my current thyroid nodule problem am I on right track or not, Please help

[Guest guest]

Hi ,

sorry to hear you've been poorly for so long with sinus/chest inferction.

Just a quick response regarding te prednisolone...i personally would take it as you suggested...40mg for 3 days, 30mg for 3, 20mg for 3 and then possibly 15 for 1, 10 for 1 and 5mg on the last day. Tapering works best for me and suddenly stopping can cause me to go loopy! The beginning doses are high doses, so they should work well.

Good luck,

Becky

From: Wadkins <susanwadkins@...>samters Sent: Thu, 13 January, 2011 15:45:17Subject: couple questions

Desens Oct 1, 2010

Sick since mid-November (school teacher with kids who share!) Think part viral and part bacterial

12/7 Z-Pack for sinus infection

12/30 still have sinus infection, now on Axolox

1/12 sinus infection traveled now to chest and have both infections. Placed on Amoxil and prednisone. Also went for chest x-ray yesterday just to check.

My GP hates prednisone! She did agree that I needed it however. She wrote the prescription for 60 mg for 7 days. I’ve never taken it this way before and am very nervous about 60 mg for that long—it makes me shaky and crazy! I googled last night and found something similar to what I remember from past bursts: 40 mg for 3 days, 30 for 3, 20 for 3, and 10 for 3. I have enough pills to do this. Recommendations?

Also have other med questions. After desens, my allergist recommended 1 aspirin twice a day. Based on the recommendations here I changed it to 2 pills twice a day for the first year. Especially since I was sick, I thought part of my symptoms were asthma related. What else do you all take daily? For 10 years I did alternate day prednisone 5 mg. I didn’t need the Qvar to help with asthma and actually only used the rescue inhaler about once a year. After desens, I should have gone back on the Qvar I think. Since I’ve been sick I’ve used the rescue inhaler several times a day! Not what I want to do. So now I’m taking: aspirin, Qvar, Singulair, Zyrtec, Nasal spray, Calcuim, Vit D, B Complex, and a multi-vitamin. Anything I’m missing to be healthy?

Last question. I see that Accolate now has a generic. It’s $30 less a month!!! Anyone take it rather than Singulair and it is a good change?

Thank you my fellow sufferers! I’ve learned so much from you all about managing life!

[Guest guest]

Thank you, Becky!

[Guest guest]

I’ve taken prednisone both as a taper and as your doc

prescribed it. For a short timeframe, the large dose like that works well

and you don’t have to taper. If the doc prescribed it that way, I wouldn’t

change it without talking to them first, esp. if you didn’t get pills in

small enough doses to taper. Steroids tend to make my heart race and my

cheeks flush, so I personally would prefer the shorter duration vs the taper

since I get off it faster!

Avelox is supposed to be good for sinus infections, so hopefully

that will help you! I’m allergic to it and have had good luck with

the cephalosporins when I have had a sinus infection. My doc hates

it when I get a sinus infection since I can’t take the “good”

drugs for it and those are also the only ones he tends to have free samples of.

K.

From: samters

[mailto:samters ] On Behalf Of Wadkins

Sent: Thursday, January 13, 2011 10:45 AM

samters

Subject: couple questions

Desens

Oct 1, 2010

Sick

since mid-November (school teacher with kids who share!) Think part viral and

part bacterial

12/7

Z-Pack for sinus infection

12/30

still have sinus infection, now on Axolox

1/12

sinus infection traveled now to chest and have both infections. Placed on

Amoxil and prednisone. Also went for chest x-ray yesterday just to check.

My

GP hates prednisone! She did agree that I needed it however. She

wrote the prescription for 60 mg for 7 days. I’ve never taken it

this way before and am very nervous about 60 mg for that long—it makes me

shaky and crazy! I googled last night and found something similar to what

I remember from past bursts: 40 mg for 3 days, 30 for 3, 20 for 3, and 10

for 3. I have enough pills to do this. Recommendations?

Also

have other med questions. After desens, my allergist recommended 1

aspirin twice a day. Based on the recommendations here I changed it to 2

pills twice a day for the first year. Especially since I was sick, I

thought part of my symptoms were asthma related. What else do you all

take daily? For 10 years I did alternate day prednisone 5 mg. I

didn’t need the Qvar to help with asthma and actually only used the rescue

inhaler about once a year. After desens, I should have gone back on the

Qvar I think. Since I’ve been sick I’ve used the rescue

inhaler several times a day! Not what I want to do. So now

I’m taking: aspirin, Qvar, Singulair, Zyrtec, Nasal spray, Calcuim,

Vit D, B Complex, and a multi-vitamin. Anything I’m missing to be

healthy?

Last

question. I see that Accolate now has a generic. It’s $30

less a month!!! Anyone take it rather than Singulair and it is a good

change?

Thank

you my fellow sufferers! I’ve learned so much from you all about

managing life!

[Guest guest]

Thanks, !

[Guest guest]

Hi Bee,

I have a few questions for you.

1. I currently take 2-3 HCL after meals but not sure if I should be taking them

anymore. The only undigested food I see in my stools is skins of tomatoes or red

peppers even though I cook both for 45min. Lately I've been removing some of the

skins so I don't consume much. I only eat them a few times a week also. Other

than that I do still have some bloating after I eat but not a lot. When I take

HCL I get burning if I take more than 3 so should I continue taking them or

should I stop since I don't have any undigested food?

2. I rarely eat out but when I do I get concerned on how a restaurant is cooking

the food. If they use teflon or aluminum foil to cook with should I be concerned

if it's not often? Is that considered a cheat if I consume those toxins if they

use that?

Thanks for your help on these. Oh and I've been doing my deep breathing

regularily and feel it's really helping!

[Guest guest]

>

> Does it hurt me if I take the HCL even though I may not need it? I want to

make

> sure I take it if I need it...but I don't get heartburn. I have diareha all

the

> time but I think that's just from detoxing. I used to be constipated but

haven't

> been in a long time. I do get gas every once in awhile but not all the time...

+++Hi . It won't hurt you, but why bother if it doesn't help?

Bee