Blood Tests

[Guest guest]

Aisha,

If you need to have regular blood draws, have your docs ever

considered giving you a central line or a port??

These two devices have been life savers for poor Matty, who had to

have blood drawn once a day at home and every 6 hours at the hospital!!

*hugs*,

Aisha Elderwyn wrote:

> Hi all, I am not having a good day. Was supposed to have blood tests

> done. My regular pathology collector came here, barely able to find a

> vein. The one that is the old faithful just didn't want to bleed.....

> guess it is sick of having needles jabbed into it as well. So she is

> coming back tomorrow to try it all again. It made me feel really ill.

> I've been asleep most of today due to that. So I am going to talk to

> my dr and tell him that it is once again a problem. Not a problem I

> need as I have to be tested every six weeks.... When I first got ill,

> she could barely find any veins and they didn't bleed, then my veins

> were better.... since being off iron and on the Imuran, its returned

> to the sorry state that it first was. I don't want to go through this

> again. Love you all. Take care, and if I don't reply to your messages,

> know that I will when I can. Blessings of peace and love to you

> always,Aisha. *=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*

> Believe that there's a light at the end of the tunnel.

> Believe that you may be that light for someone else.

> - Kobi Yamada

> *=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*

>

> Aisha Elderwyn

> ICQ 55461955

> aisha@...

> http://www.elderwyn.com/aisha

> Mailing list: AishaElderwyn-subscribeegroups

> Being Sick:

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[Guest guest]

Dear ,

"If you need to have regular blood draws, have your docs ever considered giving you a central line or a port??"

Unlike your little one, I only have to have blood taken every 6 weeks. To have a line would be more trouble then it is worth. It has only been since a medication change that I have had troubles anyhow. Today I walked around alot, wore extra clothes to get hot etc and they got the blood first go. So I do have blood!!

Thanx for checking though. I'm doing ok. Still a tad burnt out, but I'm an over achiever.... had ya guessed?

Love ya

Aisha.

*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*Believe that there's a light at the end of the tunnel.Believe that you may be that light for someone else.- Kobi Yamada*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=* Aisha ElderwynICQ 55461955aisha@...http://www.elderwyn.com/aishaMailing list: AishaElderwyn-subscribeegroupsBeing Sick:

[Guest guest]

Hi Barbara,

"It sounds like you are having a rough time lately. Sending my thoughts & prayers to you."

Thanks so much *hug*

"Thank you for the info on the blood tests! I intend asking my doc about them (like why I haven't had them)."

LMAO Good place to start!!! And you're welcome!

"My sister in law is taking me for my lumbar puncture on Monday & she said she will help with the kids if I need her. I sure appreciate the help you have given me!! If I would have known how wonderful this group was, I would have bought a computer 3 years ago. You are so wonderful."

Well we've only been going since march, pretty hard to belive since I feel like I've known many here for a lifetime and then some! I am glad your sister is taking you for the lumbar puncture, make sure you stay as flat as you can for the following 48 hours and drink tripple what you normally would. You might want to take her up on that offer to help your kids as the LP might give you a shocker of a headache.

"I hate to admit it, but I have been having second thoughts about this doctor for a while. The only trouble is, I can't stand the thought of looking for another doctor in my area as good doctors are hard to come by, especially here."

Ah hon we've all been through that. Took me over 50 dr's to get to where I am today. Remember that you hire them, (You pay!) so you fire them if they are not up to their job requirement!!!

Good luck with the LP hon, I hope all goes well. Please take it easy for the rest of the week and let us know how you go when you can.

Will be thinking of you!

Love Aisha

[Guest guest]

Hi Everyone,

Last Monday we took Brook to Children's Hosp dental clinic. The

dentist does not want to sedate him. So they put him in the papoose board and

held him down to examine and clean his teeth. At the very end of the exam the

dentist took her implement out of his mouth and had her fingers in his mouth

for a while and Brook bit her. The bite did break through her glove, but it

wasn't a very bad one. Now a week later she called Brook's pediatrician and

wants him to order an HIV and Hep C test for Brook. His Dr. told the dentist

that Brook was clean but she still wants us to take him for the tests. So we

are not thrilled about having to take him in for blood tests just to satisfy

this dentist, who doesn't want to sedate him so that he doesn't get so upset

in the first place. We are probably going to do it and I want to maximize

the blood test and get some other blood work done at the same time. Does

anyone do blood work for Risperdal?, liver function tests? We will repeat

his thyroid and do a free thyroxine I think too.

Marisa

[Guest guest]

,

I believe you can fractionate SGPT?

Steve Lumsden

Blood tests

What would your input be. Around Feb patient began taking 2-3 grams of Tylenol a day for pain. Developed fatigue, occassional severe right hypochondriac pain unrelated to eating habits or exertion, urine occassionally the color of light cranberry juice, night sweats. Serial blood tests revealed (only relevant out of range values shown): 3/29/02 SGPT (ALT) = 605 SGOT (AST) =188 GGT = 13 Creatine = 1.6 (upper limit of normal = 1.5) Creatine kinase = 476 5/30 SGPT = 148 SGOT = 93 GGT = 16 Creatinine = 1.5 6/21/02 SGPT = 89 SGOT = 56 GGT = not done Creatinine = 1.5 Creatine Kinase = 417 (heart fraction within normal limits, so it is probably muscular elevations since there are no neurologic symptoms. EKG done on 6/21 shows prolonged QT interval but no arrythmias. Abdominal ultrasound reveals no biliary stones, no pancreatic changes, normal kidney and essentially normal liver. Hepatitis panels were done but the results are not back yet. Chest films were normal. Big Q - IS IT LIVER, since the GGT is always on the low end of normal? Maybe rhabdomyolysis? R. Anglen OregonDCs rules:1. Keep correspondence professional; the purpose of the listserve is to foster communication and collegiality. No personal attacks on listserve members will be tolerated.2. Always sign your e-mails with your first and last name.3. The listserve is not secure; your e-mail could end up anywhere. However, it is against the rules of the listserve to copy, print, forward, or otherwise distribute correspondence written by another member without his or her consent, unless all personal identifiers have been removed.

[Guest guest]

My daughter's blood test was positive for gluten antibodies. The doc

suggested it might even be celiac, but since the diet is the only

treatment, that's what we've done. She's been on it since 11/01. I

believe she would have also tested positive for milk, but she had not

had dairy for about a month prior to the testing and I've read they

should be consuming the food for a good 3 months before testing. She

began to talk 5 days after eliminating dairy, so there was no way we

were gonna subject her to that just to get a test result.

The diet is hard in the beginning, but it does get easier!

Debi

> Has anyone had the blood test for gluten antibodies turn out to be

> positive? had the antigliadin antibodies and the

> antitransquaminase today.Easier than trying the diet.

>

> Diane

[Guest guest]

Hi Karin,

I don't have any advice regarding the tests, because we're just now (after

all these years) also going through the same thing at our house. My son was

diagnosed with double ear and sinus infection(s) yesterday. There have been

times when this happens and he feel so lousy, I let him drink whatever he

wants. Only for the first few days, mind you. Even Pepsi or Coke is allowed

so he doesn't get dehydrated. This, by the way, is the Ped's advice and it's

worked for us. Milk is bad for sinus infections (it makes the secretions

worse), especially at first. Sometimes flavored Gatorade does the trick.

I hope is feeling better. BTW, sometimes I feel like putting a sign

on the front door that says, " YES, HE IS SICK AGAIN!! " At least that way,

people wouldn't ask!! But I think it's their way of caring, it's just

difficult for them to know what to say.

Sandi--Mom to , age 10. Immune Deficiency of unknown origin, Tetrology

of Fallot, chronic sinusitis, chronic ear infections, asthma, severe

allergies, GERD. Heart surgery pending.

[Guest guest]

In a message dated 4/10/03 10:50:50 AM Pacific Daylight Time,

brighteyes18944@... writes:

> is on anything for this?

Karin,

is on Clindomycin for this. He is allergic to Penicillin, in total

he is allergic to five antibiotics. So, there are very few he can take that

work for him anymore. Have you tried popsicles with ? When Bri was

little, I could get those or Fudgesicles down him. It was a little liquid,

anyway. Or, sometimes he would drink the pop better with a straw and ice.

I'm not sure why, but it worked for him!! These days, since he's ten, he

feels he should be drinking out of the can!! But he only gets Coke when he's

sick. I hope gets better fast!!

Sandi

[Guest guest]

-Thanks sandi for the suggestions... He likes gaterade... and coke

but dosen't seem to want them when he gets this sick. He knows he

has to and will try to drink when ever he is awake. With ear

infections such as this he gets a good fever and sleeps alot. Will

suggest this again. Thanks for also letting me know that i am not

the only one who wants to put a sign on the front door and a msg on

the phone machine. Thanks again for your kind words. So sorry to

here about . will let john know that got the same thing

he did the same day and knows exactly how he is feeling. I got the

ped to put him on amox. is on anything for this? First time

in a long time ped. didn't argue with me about the abx. Please tell

him we hope he feels better.

Thanks again,

Karin, mom to ,11, IgA def, chronic ear infections, chronic

sinus, etc. and , 14, Asthma

-- In , SassyKay418@c... wrote:

> Hi Karin,

> I don't have any advice regarding the tests, because we're just

now (after

> all these years) also going through the same thing at our house.

My son was

> diagnosed with double ear and sinus infection(s) yesterday. There

have been

> times when this happens and he feel so lousy, I let him drink

whatever he

> wants. Only for the first few days, mind you. Even Pepsi or Coke

is allowed

> so he doesn't get dehydrated. This, by the way, is the Ped's

advice and it's

> worked for us. Milk is bad for sinus infections (it makes the

secretions

> worse), especially at first. Sometimes flavored Gatorade does the

trick.

> I hope is feeling better. BTW, sometimes I feel like

putting a sign

> on the front door that says, " YES, HE IS SICK AGAIN!! " At least

that way,

> people wouldn't ask!! But I think it's their way of caring, it's

just

> difficult for them to know what to say.

>

>

> Sandi--Mom to , age 10. Immune Deficiency of unknown origin,

Tetrology

> of Fallot, chronic sinusitis, chronic ear infections, asthma,

severe

> allergies, GERD. Heart surgery pending.

>

>

>

[Guest guest]

Karin - my mom's BTDT opinion is that his IgM level is so close to normal it

could be lab technician interpretation. If

3 other lab techs looked at the blood slide they might come up with numbers in

the range. The IgA is obviously

deficient and the IgG 3 is low (sometimes that subclass is linked to sinus

stuff). I hope he feels better soon. What

did the doctor prescribe for the URI and ears?

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]

Tammura,

My son has tested neutropenic at least three times in the past that I

know. But, we had an oncologist follow his blood test results and he said

Jarrod did not have the cyclic neutropenia. My understanding is the true

cyclic neutopenia is when the white cell count drops and allows the child

to get sick. I believe Jarrod always gets neutropenic after his fever

starts. The way they tested for this was a bi-weekly blood draw for

several weeks to monitor his counts.

Hope this helps - sorry for the delay, we just got home from vacation :-)

(SWFL)

On Mon, 5 Sep 2005 12:48:03 -0700 (PDT) Tam Whitntt <telivilu@...>

writes:

Dear Group,

I am confused about the blood tests. Does anyone know what the tests

should be during the fever and after? Our daughter was neutropenic (too

little) 1 week after the febrile episode and hypo IgD. She was

neutrophilic (too many) during the episode + low immunoglobulin. No signs

of a virus.

I have seen a few talk about the cyclic neutropenia - how do they test

for that? Are the children at risk to have more illness during these

periods? I guess what I am trying to figure out is when she is well with

no illness with a WBC count of 3.9 (5.5-17) - what tests should I expect

without over testing and stressing her body?

How do the phy. rule out childhood cancer versus ?

Any info would help, we are waiting for a referral to Children's Hospital

in Seattle. It lookslike their Rhem. clinic is familiar with .

Any thoughts?

Tammura

__________________________________________________

[Guest guest]

Tammura,

I'm still not sure if my son has despite symptoms but he is currently

undergoing the twice weekly CBC's. The Granulocyte count (GR#) needs to be

between 42 and 75 to be considered normal. The Granulocytes are a component of

the Neutrophils (I think). That's what my Ped. is looking at. The Neutrophils in

the WBC's help fight off bacterial infections. I know it's hard to see your

child in pain. Thankfully we were able to rule out Cyclic Neutropenia but

might still be a factor for us. I hope this is halpful, hang in there. Donna

merryms@... wrote:

Tammura,

My son has tested neutropenic at least three times in the past that I

know. But, we had an oncologist follow his blood test results and he said

Jarrod did not have the cyclic neutropenia. My understanding is the true

cyclic neutopenia is when the white cell count drops and allows the child

to get sick. I believe Jarrod always gets neutropenic after his fever

starts. The way they tested for this was a bi-weekly blood draw for

several weeks to monitor his counts.

Hope this helps - sorry for the delay, we just got home from vacation :-)

(SWFL)

On Mon, 5 Sep 2005 12:48:03 -0700 (PDT) Tam Whitntt <telivilu@...>

writes:

Dear Group,

I am confused about the blood tests. Does anyone know what the tests

should be during the fever and after? Our daughter was neutropenic (too

little) 1 week after the febrile episode and hypo IgD. She was

neutrophilic (too many) during the episode + low immunoglobulin. No signs

of a virus.

I have seen a few talk about the cyclic neutropenia - how do they test

for that? Are the children at risk to have more illness during these

periods? I guess what I am trying to figure out is when she is well with

no illness with a WBC count of 3.9 (5.5-17) - what tests should I expect

without over testing and stressing her body?

How do the phy. rule out childhood cancer versus ?

Any info would help, we are waiting for a referral to Children's Hospital

in Seattle. It lookslike their Rhem. clinic is familiar with .

Any thoughts?

Tammura

__________________________________________________

[Guest guest]

My son was tested for cyclic neutropenia as well. Every time he started

running a fever they had us go in and have him tested. We would have to go

back every other day until the count went back up and the fever was gone.

Our doctor told us that the biggest concern with this type of fever is that

they can be more susceptible to other illnesses during the time their count

is low.

Denton, Texas

Dillon 2

Tyler 6

_____

From: [mailto: ] On Behalf Of

merryms@...

Sent: Monday, September 12, 2005 8:24 AM

Subject: Re: Blood Tests

Tammura,

My son has tested neutropenic at least three times in the past that I

know. But, we had an oncologist follow his blood test results and he said

Jarrod did not have the cyclic neutropenia. My understanding is the true

cyclic neutopenia is when the white cell count drops and allows the child

to get sick. I believe Jarrod always gets neutropenic after his fever

starts. The way they tested for this was a bi-weekly blood draw for

several weeks to monitor his counts.

Hope this helps - sorry for the delay, we just got home from vacation :-)

(SWFL)

On Mon, 5 Sep 2005 12:48:03 -0700 (PDT) Tam Whitntt <telivilu@...>

writes:

Dear Group,

I am confused about the blood tests. Does anyone know what the tests

should be during the fever and after? Our daughter was neutropenic (too

little) 1 week after the febrile episode and hypo IgD. She was

neutrophilic (too many) during the episode + low immunoglobulin. No signs

of a virus.

I have seen a few talk about the cyclic neutropenia - how do they test

for that? Are the children at risk to have more illness during these

periods? I guess what I am trying to figure out is when she is well with

no illness with a WBC count of 3.9 (5.5-17) - what tests should I expect

without over testing and stressing her body?

How do the phy. rule out childhood cancer versus ?

Any info would help, we are waiting for a referral to Children's Hospital

in Seattle. It lookslike their Rhem. clinic is familiar with .

Any thoughts?

Tammura

__________________________________________________

[Guest guest]

Dear ,

Yes - this does help. It at least gives me an idea about what to expect. She

just had her birthday on Sept 11, and we are waiting for an appointment with

Seattle Children's with their Rhemu department.

Hope you had a great vacation! Thanks for writing.

Tammura

merryms@... wrote:

Tammura,

My son has tested neutropenic at least three times in the past that I

know. But, we had an oncologist follow his blood test results and he said

Jarrod did not have the cyclic neutropenia. My understanding is the true

cyclic neutopenia is when the white cell count drops and allows the child

to get sick. I believe Jarrod always gets neutropenic after his fever

starts. The way they tested for this was a bi-weekly blood draw for

several weeks to monitor his counts.

Hope this helps - sorry for the delay, we just got home from vacation :-)

(SWFL)

On Mon, 5 Sep 2005 12:48:03 -0700 (PDT) Tam Whitntt <telivilu@...>

writes:

Dear Group,

I am confused about the blood tests. Does anyone know what the tests

should be during the fever and after? Our daughter was neutropenic (too

little) 1 week after the febrile episode and hypo IgD. She was

neutrophilic (too many) during the episode + low immunoglobulin. No signs

of a virus.

I have seen a few talk about the cyclic neutropenia - how do they test

for that? Are the children at risk to have more illness during these

periods? I guess what I am trying to figure out is when she is well with

no illness with a WBC count of 3.9 (5.5-17) - what tests should I expect

without over testing and stressing her body?

How do the phy. rule out childhood cancer versus ?

Any info would help, we are waiting for a referral to Children's Hospital

in Seattle. It lookslike their Rhem. clinic is familiar with .

Any thoughts?

Tammura

__________________________________________________

[Guest guest]

Thanks Donna, just hearing from everyone - I know that we are not alone. I am

reading everyone's email on the smyptoms - we have had everything from clingy to

the nothing. It is almost like for every story we could all interchange our

children's names - almost like a big family.

Thank you for sharing.

Tammura

Donna Lenz <travzzmom@...> wrote:

Tammura,

I'm still not sure if my son has despite symptoms but he is currently

undergoing the twice weekly CBC's. The Granulocyte count (GR#) needs to be

between 42 and 75 to be considered normal. The Granulocytes are a component of

the Neutrophils (I think). That's what my Ped. is looking at. The Neutrophils in

the WBC's help fight off bacterial infections. I know it's hard to see your

child in pain. Thankfully we were able to rule out Cyclic Neutropenia but

might still be a factor for us. I hope this is halpful, hang in there. Donna

merryms@... wrote:

Tammura,

My son has tested neutropenic at least three times in the past that I

know. But, we had an oncologist follow his blood test results and he said

Jarrod did not have the cyclic neutropenia. My understanding is the true

cyclic neutopenia is when the white cell count drops and allows the child

to get sick. I believe Jarrod always gets neutropenic after his fever

starts. The way they tested for this was a bi-weekly blood draw for

several weeks to monitor his counts.

Hope this helps - sorry for the delay, we just got home from vacation :-)

(SWFL)

On Mon, 5 Sep 2005 12:48:03 -0700 (PDT) Tam Whitntt <telivilu@...>

writes:

Dear Group,

I am confused about the blood tests. Does anyone know what the tests

should be during the fever and after? Our daughter was neutropenic (too

little) 1 week after the febrile episode and hypo IgD. She was

neutrophilic (too many) during the episode + low immunoglobulin. No signs

of a virus.

I have seen a few talk about the cyclic neutropenia - how do they test

for that? Are the children at risk to have more illness during these

periods? I guess what I am trying to figure out is when she is well with

no illness with a WBC count of 3.9 (5.5-17) - what tests should I expect

without over testing and stressing her body?

How do the phy. rule out childhood cancer versus ?

Any info would help, we are waiting for a referral to Children's Hospital

in Seattle. It lookslike their Rhem. clinic is familiar with .

Any thoughts?

Tammura

__________________________________________________

[Guest guest]

Dear ,

What was his count during the fever and 1 week afterwards - if you don't mind me

asking. We had the opposite - she had 92 neutrophils with the fever and then 12

without the fever.

Thanks,

Tammura

The Kauffmans <cjkauffman@...> wrote:

My son was tested for cyclic neutropenia as well. Every time he started

running a fever they had us go in and have him tested. We would have to go

back every other day until the count went back up and the fever was gone.

Our doctor told us that the biggest concern with this type of fever is that

they can be more susceptible to other illnesses during the time their count

is low.

Denton, Texas

Dillon 2

Tyler 6

_____

From: [mailto: ] On Behalf Of

merryms@...

Sent: Monday, September 12, 2005 8:24 AM

Subject: Re: Blood Tests

Tammura,

My son has tested neutropenic at least three times in the past that I

know. But, we had an oncologist follow his blood test results and he said

Jarrod did not have the cyclic neutropenia. My understanding is the true

cyclic neutopenia is when the white cell count drops and allows the child

to get sick. I believe Jarrod always gets neutropenic after his fever

starts. The way they tested for this was a bi-weekly blood draw for

several weeks to monitor his counts.

Hope this helps - sorry for the delay, we just got home from vacation :-)

(SWFL)

On Mon, 5 Sep 2005 12:48:03 -0700 (PDT) Tam Whitntt <telivilu@...>

writes:

Dear Group,

I am confused about the blood tests. Does anyone know what the tests

should be during the fever and after? Our daughter was neutropenic (too

little) 1 week after the febrile episode and hypo IgD. She was

neutrophilic (too many) during the episode + low immunoglobulin. No signs

of a virus.

I have seen a few talk about the cyclic neutropenia - how do they test

for that? Are the children at risk to have more illness during these

periods? I guess what I am trying to figure out is when she is well with

no illness with a WBC count of 3.9 (5.5-17) - what tests should I expect

without over testing and stressing her body?

How do the phy. rule out childhood cancer versus ?

Any info would help, we are waiting for a referral to Children's Hospital

in Seattle. It lookslike their Rhem. clinic is familiar with .

Any thoughts?

Tammura

__________________________________________________

[Guest guest]

Sounds like my now 13 year old! It used to take us a whole room to

restrain him to do bloodwork with a male nurse at the door in case

he ran. His pshcologist recommend we use Valium. It has worked

wonderfully. For Ben there is no way of " talking him through it " .

He paniced at what it might feel like and the minute they stick him

he would say " o thats not bad " and be perfectly fine. The valium

allows me to not have to work out for the appointments! We only use

if once or twice a year but have a couple of pills on hand for

emergencies or dental work. Another panic. I am not a big one for

medicating but hopefully by using this for a couple of years he can

do it on his own. If not it makes all those involved have an easier

time and the nurses not cringe when we walk in.

Good luck,

>

>

> In a message dated 4/11/2006 12:38:09 P.M. Central Daylight Time,

> Autism and Aspergers Treatment writes:

>

> Do any of you have any suggestions for getting thru the blood

draw??

> I probably don't have to explain but just in case...any reasoning

> tactic does not work. No matter how well he understands

something,

> once the panic kicks in...forget it! Not looking forward to

this....

>

>

> ** I hate blood tests. My son, 17 and Aspergers and ADHD hates

them EVEN

> worse than I do. He was supposed to get a blood test about five

years ago and

> he refused. I asked the doctor if he would give a tranquilizer and

he said

> that it is not that important, just that would mean we would not

have the best

> therapeutic level for his medications. So, that was a worry.

However, he just

> has never had a blood test since. Now, that he is older, he has

some moles

> surgically removed two years ago and he did a good job. However,

it helped that

> he was laying down in a quiet lab room, and could not see what

was going on

> and we made him relax and look away.

> I also have to lay down when I have blood tests, and your son

could too,

> also have him look away and talk to him about something else. That

should help.

> I hate them too!

>

> in Illinois

>

[Guest guest]

--

I've been full circle here.

For years it's never been an issue at all. She won't take any

medicines so I try to get her shot where possible in place of oral

meds.

Silly huh? She wouldn't even flinch and would ask for it again. I

was thinking the turnaquett was giving her imput that she liked.

This was the case for the firs 5 years.

We too had to get a biopsy of a mole that was on her ...privates..

during the past year. This was very tramatic for her. Any probably

most anyone else..ouch.

Since then she has pull and pushed and tried anything not to get the

blood drawn. The last time I said we'd go to the store and she could

buy any toy she wanted. She settled enough to finish that time.

haven't been since. This was about a month ago.

So I'm in the same boat as you guys.

- In Autism and Aspergers Treatment , Laha1960@... wrote:

>

>

> In a message dated 4/11/2006 12:38:09 P.M. Central Daylight Time,

> Autism and Aspergers Treatment writes:

>

> Do any of you have any suggestions for getting thru the blood

draw??

> I probably don't have to explain but just in case...any reasoning

> tactic does not work. No matter how well he understands something,

> once the panic kicks in...forget it! Not looking forward to

this....

>

>

> ** I hate blood tests. My son, 17 and Aspergers and ADHD hates

them EVEN

> worse than I do. He was supposed to get a blood test about five

years ago and

> he refused. I asked the doctor if he would give a tranquilizer and

he said

> that it is not that important, just that would mean we would not

have the best

> therapeutic level for his medications. So, that was a worry.

However, he just

> has never had a blood test since. Now, that he is older, he has

some moles

> surgically removed two years ago and he did a good job. However, it

helped that

> he was laying down in a quiet lab room, and could not see what was

going on

> and we made him relax and look away.

> I also have to lay down when I have blood tests, and your son could

too,

> also have him look away and talk to him about something else. That

should help.

> I hate them too!

>

> in Illinois

>

[Guest guest]

We tried the valium, it actually took 6 people to hold him that day.

Did not work for him, maybe I should have doubled it!

-Charlotte

Re: blood tests

Sounds like my now 13 year old! It used to take us a whole room to

restrain him to do bloodwork with a male nurse at the door in case

he ran. His pshcologist recommend we use Valium. It has worked

wonderfully. For Ben there is no way of " talking him through it " .

He paniced at what it might feel like and the minute they stick him

he would say " o thats not bad " and be perfectly fine. The valium

allows me to not have to work out for the appointments! We only use

if once or twice a year but have a couple of pills on hand for

emergencies or dental work. Another panic. I am not a big one for

medicating but hopefully by using this for a couple of years he can

do it on his own. If not it makes all those involved have an easier

time and the nurses not cringe when we walk in.

Good luck,

>

>

> In a message dated 4/11/2006 12:38:09 P.M. Central Daylight Time,

> Autism and Aspergers Treatment writes:

>

> Do any of you have any suggestions for getting thru the blood

draw??

> I probably don't have to explain but just in case...any reasoning

> tactic does not work. No matter how well he understands

something,

> once the panic kicks in...forget it! Not looking forward to

this....

>

>

> ** I hate blood tests. My son, 17 and Aspergers and ADHD hates

them EVEN

> worse than I do. He was supposed to get a blood test about five

years ago and

> he refused. I asked the doctor if he would give a tranquilizer and

he said

> that it is not that important, just that would mean we would not

have the best

> therapeutic level for his medications. So, that was a worry.

However, he just

> has never had a blood test since. Now, that he is older, he has

some moles

> surgically removed two years ago and he did a good job. However,

it helped that

> he was laying down in a quiet lab room, and could not see what

was going on

> and we made him relax and look away.

> I also have to lay down when I have blood tests, and your son

could too,

> also have him look away and talk to him about something else. That

should help.

> I hate them too!

>

> in Illinois

>

[Guest guest]

Well I guess I am not alone in this either!! Thank goodness! I did have

a chat with Zo tonight about the blood tests and why he needs them. It

was a great conversation. I had him sit on my lap and we did an

imaginative walk thru of the procedure and there was a fair bit of him

crying that he was scared (if only it could go that well when we do

go!). I don't honestly think that playing it out will help that much

but I have to try. He deserves the chance to be successful at this.

Depending on how this goes I may ask the dr. for valium or something

similar next time (we have yet to have a successful dental visit!), but

it has been 3 yrs since we last had blood drawn so he may surprise me.

I think I will go on Monday. I am calling the hospital first to make

sure they have someone who works with children and another set of hands

available when we go in.

[Guest guest]

Hi, Terri.

My daughter also has low and dropping b-cells (I think she is around 20% of a

" normal " persons b-cells). Doc said that CVIDers often have normal levels of

b-cells but no function. Hmm.. So what does it mean when one has low b- and

t-cells, and some dysfunction? Don't worry, I am not asking you for answers

LOL. We are in the same boat here. This is really frustrating. As long as our

kiddos (and you) are managing okay with IgG replacement, I don't know what else

can be done at the moment. Perhaps someone has the answers...but who? I go

round and round with this.. It can be rather maddening. <<Sigh>>. I hear you,

mom. btw, the lab at UCLA is expanding and in the very near future he will be

able to order more obscure tests.

I read your last note about the needle craziness. Are you guys still committed

to the sof-set? I just used the new sharper Norfolk 9mm (instead of the 6mm) on

Dani and they were super easy, still really teeny, and no leaks...and no loss of

product due to tubing issues/priming, etc.. I know you have trouble with

metal...though. Ugh. I am so sorry...and apologize for being a broken record.

: (

Hope your girls feel better soon.

Dani's mom CVID

[Guest guest]

Terri - until there is more research on the mid-level PID's such as CVID you

won't be able to have any future insight for your children. There hasn't been

any genetic testing on you because there are no established genetic markers for

CVID or any other mid-level PID. The research just hasn't been on the front

burner for any researcher. NIH has several studies that have looked at

hereditary patterns but not genetic markers or testing.

Les and Macey both have CVID but different variants. So I still can't say if it

is hereditary or environmental or dumb luck. Also since CVID is mostly a

antibody producing problem it's hard to diagnose at birth because of maternal

antibodies still present.

It's tough. The CID diagnosis tends to come with more than the T and B cell

deficiency and/or dysfunction. Usually there are very pronounced autoimmune

issues, NK issues sometimes and poor T-cell function as well as numbers. It's

also a " doctor diagnosis " judgement call. Same as when one doctor will call

something CVID and another calls it something else (hypogamm, selective

antibody, panhypo). It's correcting the problem that matters most and if the

disease is progressed enough does BMT help or will IVIG and meds be enough of a

bandaid to not have to risk chemo.

Ursula - mom to (13) and Macey (11, CVID)

http://www.primaryimmune.org

http://www.jmfworld.org

http://members.cox.net/maceyh

[Guest guest]

HI

has combined T and b and NK function and panlypcytopenic and

bone marrow was very hypocellulor. very loe IGA and almost non

excistant IGG. He is listed as severe Cvid but we all question that.

HE only gets special blood and wears medicalert but the drinking

water really??? Some doctor had made a comment to me about but I did

not think it was nessasary. Maybe I was wrong.. DId they give you

reasons why?????

>

> Terri,

> I can definitely understand where you are coming from. We wanted

a specific

> diagnosis, so we changed immunos a couple of times since not all

immunos

> have the resources to look for genetic issues. We finally ended

up in

> Cincinnati, they do a lot of genetic testing there. We were told

there are

> some genetic markers for CVID and Conner was tested for them, all

were

> normal. I'm not sure which ones they look at, but one of them was

ICOS

> upregulation to detect ICOS-associated CVID. Dr. Bleesing in

Cincinnati was

> the doc who finally found Conner's NEMO defect and the rest of our

family's

> MBL defect. I don't like the answers we got (I wanted something

easier!),

> but I'd rather have answers and not always be wondering what we're

dealing

> with. I wonder if it would be worth a trip there for your

family. They do

> have a RHM there, but I've heard they rarely have openings. After

our

> initial trip, a lot of our blood was shipped there for further

testing so

> that we could avoid going back all the time and we're only three

hours away.

>

> If you are interested, you might try contacting Dr. Bleesing

to " pick his

> brain " a little. He might be able to offer some suggestions. Of

course we

> think he's a genious! His address is: jack.bleesing@...

>

> The other thing I wanted to mention is if you or the girls do have

a

> combined immune deficiency, there may be other precautions you

need to take.

> We were told that we need to get Conner a medical alert bracelet

for

> irradiated blood, he should avoid drinking unfiltered tap water,

he should

> always be on PCP prophylaxis, etc. We'll learn more when we're at

the NIH.

>

> Take care,

>

> Mom to Conner (12, NEMO/XHIM, asthma,

> Hashimoto's disease and resolved adrenal insufficiency),

> Hayden (12, unknown immune deficiency, IBS and moderate hearing

loss/aided),

> Evan (12, unknown immune deficiency, asthma and mild hearing

loss/unaided),

> and Kelsey - (10, unknown immune deficiency and asthma)

> Please visit us at www.caringbridge.org/in/connersmith

>

[Guest guest]

Terri,

I can definitely understand where you are coming from. We wanted a specific

diagnosis, so we changed immunos a couple of times since not all immunos

have the resources to look for genetic issues. We finally ended up in

Cincinnati, they do a lot of genetic testing there. We were told there are

some genetic markers for CVID and Conner was tested for them, all were

normal. I'm not sure which ones they look at, but one of them was ICOS

upregulation to detect ICOS-associated CVID. Dr. Bleesing in Cincinnati was

the doc who finally found Conner's NEMO defect and the rest of our family's

MBL defect. I don't like the answers we got (I wanted something easier!),

but I'd rather have answers and not always be wondering what we're dealing

with. I wonder if it would be worth a trip there for your family. They do

have a RHM there, but I've heard they rarely have openings. After our

initial trip, a lot of our blood was shipped there for further testing so

that we could avoid going back all the time and we're only three hours away.

If you are interested, you might try contacting Dr. Bleesing to " pick his

brain " a little. He might be able to offer some suggestions. Of course we

think he's a genious! His address is: jack.bleesing@...

The other thing I wanted to mention is if you or the girls do have a

combined immune deficiency, there may be other precautions you need to take.

We were told that we need to get Conner a medical alert bracelet for

irradiated blood, he should avoid drinking unfiltered tap water, he should

always be on PCP prophylaxis, etc. We'll learn more when we're at the NIH.

Take care,

Mom to Conner (12, NEMO/XHIM, asthma,

Hashimoto's disease and resolved adrenal insufficiency),

Hayden (12, unknown immune deficiency, IBS and moderate hearing loss/aided),

Evan (12, unknown immune deficiency, asthma and mild hearing loss/unaided),

and Kelsey - (10, unknown immune deficiency and asthma)

Please visit us at www.caringbridge.org/in/connersmith

[Guest guest]

> He is listed as severe Cvid but we all question that.

> HE only gets special blood and wears medicalert but the drinking

> water really??? Some doctor had made a comment to me about but I did

> not think it was nessasary. Maybe I was wrong.. DId they give you

> reasons why?????

If you were told to not let him drink regular tap water or from water

fountains, it's likely due to the increased risk of contracting an infection

with Giardia or Cryptosporidium. We were told that reverse osmosis is

needed to filter those things out, I had no idea this could be in our water!

We currently have filtered drinking water delivered to our home, but are

looking into adding a whole house filter. Going to school and eating out is

a whole other issue!

I believe this recommendation is made for anyone with a combined immune

deficiency (t-cells being the bigger issue), same goes for the PCP

prophylaxis, which is typically Bactrim/Septra or Zithromax.

Take care,

Mom to Conner (12, NEMO/XHIM, asthma,

Hashimoto's disease and resolved adrenal insufficiency),

Hayden (12, unknown immune deficiency, IBS and moderate hearing loss/aided),

Evan (12, unknown immune deficiency, asthma and mild hearing loss/unaided),

and Kelsey - (10, unknown immune deficiency and asthma)

Please visit us at www.caringbridge.org/in/connersmith