EvansSyndrome : Messages : 4552-4581 of 5561

He is Dr. Neufeld and he is at Boston Children's.

bettanmic@... wrote:

I am curious who the doctor in Boston is, we live just outside Boston and go to Childrens Hospital here.

Betty Mom to Paul 19 Evans+

LISA

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#4580

From: bettanmic@...
Date: Fri Dec 8, 2006 9:52 am
Subject: Re: advice

bettanmic

Offline

I am curious who the doctor in Boston is, we live just outside Boston and go to Childrens Hospital here.

Betty Mom to Paul 19 Evans+

#4579

From: lisa shoenfelt <lmshoenfelt@...>
Date: Fri Dec 8, 2006 2:21 pm
Subject: Re: advice

lmshoenfelt

Offline

My 6 year old daughter was diagnosed 16 months ago. We used Prednisone and had success with that, but only for a few months. Then, her body stopped responding to it. We tried IVIG, whith only short responses. Then, we tried Rituxan which did nothing for her. All summer, we could not get her platelets above 10,000. They were going to remove her spleen. I was not happy about this so I did my research and found a doctor in Boston who uses 6mp which is a leukemia drug on his Evan's patients. My daughter's doctor agreed to give it a try but did not think that it would work. Well, 2 weeks later she was flying high and doing great ever since. She started the 6mp about 4 months ago. You may want to ask your doctor about this drug. My daughter's platelets are over 200,000 and her hemoglobin and hematocrit both increased to normal ranges.

Hope this helps. Lisa(madison's mom w/ Evans 6 yrs. old)

charleyfritz <ted@...> wrote:

I am new to this group. My three year old son, Teddy, is having his first episode in two years.
They have tried two different steroids and IVIG. The prednisone seemed to be working at very
high doses of 150 and then 100. But this week his hemo counts fell from 11.8 to 9.9 not an
esp. bad number but we are wondering what this could mean and what might happen now.
Also what treatments others have had success with.

Thanks in advance for any help you can give,

Rachel

LISA

Access over 1 million songs - Yahoo! Music Unlimited.

#4578

From: "charleyfritz" <ted@...>
Date: Fri Dec 8, 2006 12:06 pm
Subject: advice

charleyfritz

Offline

I am new to this group. My three year old son, Teddy, is having his first
episode in two years.
They have tried two different steroids and IVIG. The prednisone seemed to be
working at very
high doses of 150 and then 100. But this week his hemo counts fell from 11.8 to
9.9 not an
esp. bad number but we are wondering what this could mean and what might happen
now.
Also what treatments others have had success with.

Thanks in advance for any help you can give,

Rachel

#4577

From: rnm171@...
Date: Thu Nov 30, 2006 8:26 am
Subject: Re: Re: Neupogen and this mailgroup

rnm171

Offline

Hi Angie,

Yes our daughter goes to school and we do worry about infections but we try to let her be as normal as possible. She also had a liver transplant when she was 9 months old so her whole life has been pills, shots and hospital visits. With her immune system so low now with the low levels her liver is doing great but she takes a shot of Neupogen four days a week to help fight any infection she may get and so far so good. She has had episodes where she had a fever and we spent a day or just hours in the hospital to get antibiotics. Our questions are how long can or should a person be on Neupogen and why her neutriphils don't come up. She has had bone marrow biopsy's done and she is making neutriphils but they just don't come out into her blood stream. I hope this answers some of your questions.

Nancy, mother of Rachel w/evans

#4576

From: "Angie" <epjhmom@...>
Date: Thu Nov 30, 2006 4:22 am
Subject: Re: Neupogen and this mailgroup

epjhmom

Offline

My son has been on GCSF since he was diagnosed in July.  The only side
effect is bone pain and he hasn't experienced that.  He complains
about my shot giving skills, but says he feels better with the "G"
than without.  Looks like he'll be going back on prednisone soon
though.  His platelets are dropping.  With all the research going on
looks like there would be more on Evans.  Good luck with your
daughter.  Question...with her neutrifil levels being low does she go
to school?  Hunter's are borderline so I'm just wondering what to
expect.

Angie
--- In EvansSyndrome@yahoogroups.com, rnm171@... wrote:
>
> Our daughter has been on Neupogen for about two years now, she has
been
> doing fine with it.  She too has low neutrifil levels and these
shots have  helped
> a lot.
>
> Nancy,
> Mother of Rachel 17 w/evans
>

#4575

From: rnm171@...
Date: Tue Nov 28, 2006 2:03 pm
Subject: Re: Neupogen and this mailgroup

rnm171

Offline

Our daughter has been on Neupogen for about two years now, she has been doing fine with it. She too has low neutrifil levels and these shots have helped a lot.

Nancy,

Mother of Rachel 17 w/evans

#4574

From: "jmdjbw" <wechslerbrooks@...>
Date: Mon Nov 27, 2006 3:43 am
Subject: Neupogen and this mailgroup

jmdjbw

Offline

Have any of you had experience with Neupogen (gcsf)? Thinking of
trying it for my son because of very low ABCd, nasty mouth sores, and
a week in the hospital with a sore that turned into cellulitis. I know
at least one person has mentioned success with it. Thanks.

Also, I just figured out that there are TWO Evans Syndrome Yahoo
groups with these web addresses. Hey, members and system
administrators, don't you think it would be good to combine them into
one?
http://health.groups.yahoo.com/group/EvansSyndrome/
    *this one (the one we're on) has close to 300 members.
http://health.groups.yahoo.com/group/Evans_Syndrome/
    *this one has 96 members

#4573

From: MoMan136@...
Date: Mon Nov 13, 2006 9:44 pm
Subject: Re: lymph nodes

moman136320

Offline

Cindy,

I have always been told that my lymph nodes/spleen are enlarged...been through CT and PT scans even a biopsy, they havent changed in size in 10 years, just remained enlarged. This has never caused me any trouble whatsoever, so definitely find out why your doctor would want to "shrink" them before chemo is considered. Best wishes.

-Mike, 21

#4572

From: "Kate" <kmulroney@...>
Date: Mon Nov 13, 2006 6:30 pm
Subject: Re: lymph nodes

kmulroney

Offline

Cindy,
My son, Tim (also 14), also has very large lymph nodes in his neck.
(And actually throughout his body, although the ones in his neck are
most noticable.)  He has also had PET scans that just showed that he
had enlarged nodes.  He also had a biopsy once the just showed that he
had "reactive" lymph nodes - no lymphoma.

He was diagnosed with Evans when he was 4, although the lymph nodes got
particularly large after he turned 10 (and had just had a flu shot...
not sure if that was a factor).  They say that all the hormones in this
age range, combined with the autoimmunity, can cause lymph node
enlargement.  Tim was treated with Rituximab last year and the lymph
nodes shrunk, but as the drug wore off, the lymph nodes swelled back
up.  (And he had another flu shot this year... not sure, again, if
associated with the problem.)

Has your son been evaluated for "ALPS" (autoimmune lymphoproliferative
syndrome)?  My son's diagnosis was reclassified as that about 1 1/2
years ago.  No real difference in treatment, but it explains the
enlarged lymph nodes and spleen (and other "Evans" issues - low
platelet count etc.).  He is in a clinical trial at the NIH, as well as
being followed by his hematologist.  That might be worth pursuing.
Where does your son get treated?

According to Tim's doctors, there is no clinical reason to shrink or
remove the lymph nodes if they aren't malignant.  If his blood counts
are ok, we are just leaving them as is.  There are so many side effects
of chemotherapy, that you might want to ask what the goal of the chemo
would be.  They also will not surgically remove any nodes, because they
say another one will just swell in its place.

   -- Kate

--- In EvansSyndrome@yahoogroups.com, "looker892003" <looker892003@...>
wrote:
>
> hi my son kyle has evans since he was 13 months old. he is 14 now. he
> has swollen lymph nodes in his neck and lymph nodes through out his
> body. he is going for a cat scan and pet scan. depending if the lymph
> nodes got bigger he will need chemo to shrink them. What could this
be
> from?
> cindy(mom)
>

#4571

From: "Robin L. Brown" <r_l_brown@...>
Date: Mon Nov 13, 2006 4:26 pm
Subject: Re: lymph nodes

R_L_Brown

Offline

My daughter Danielle had the same thing happen. In her case the cause was cellcept.

Robin

Mother to Danielle, 16/Evans

----- Original Message ----
From: looker892003 <looker892003@...>
To: EvansSyndrome@yahoogroups.com
Sent: Monday, November 13, 2006 10:58:16 AM
Subject: [EvansSyndrome] lymph nodes

hi my son kyle has evans since he was 13 months old. he is 14 now. he
has swollen lymph nodes in his neck and lymph nodes through out his
body. he is going for a cat scan and pet scan. depending if the lymph
nodes got bigger he will need chemo to shrink them. What could this be
from?
cindy(mom)

#4570

From: "looker892003" <looker892003@...>
Date: Mon Nov 13, 2006 3:58 pm
Subject: lymph nodes

looker892003

Offline

hi my son kyle has evans since he was 13 months old. he is 14 now. he
has swollen lymph nodes in his neck and lymph nodes through out his
body. he is going for a cat scan and pet scan. depending if the lymph
nodes got bigger he will need chemo to shrink them. What could this be
from?
cindy(mom)

#4569

From: "Sharon Britt" <sharon_britt@...>
Date: Fri Nov 3, 2006 3:52 pm
Subject: RE: geography - evans

sharonbillbritt

Offline

I do agree that spring and fall activate autoimmune diseases, this does not
mean you are safe in the other seasons. Change of seasons usually bring on a
increase in viruses and this usually starts their overactive immune systems.
My son and husband both have autoimmune diseases (including evans) and
spring/fall changes assault both immune systems in various ways.
Sharon

>From: j k <jakk5858@...>
>Reply-To: EvansSyndrome@yahoogroups.com
>To: EvansSyndrome@yahoogroups.com
>Subject: [EvansSyndrome] geography - evans
>Date: Wed, 18 Oct 2006 17:50:16 -0700 (PDT)
>
>Does anyone have any thoughts on the climate playing a role in evans?
>my husband and myself both wonder if our michigan location should be
>changed to somewhere warmer such as florida we also wonder if there are
>more cases of evans in one area or another.
>
>
>---------------------------------
>Do you Yahoo!?
>  Everyone is raving about the  all-new Yahoo! Mail.

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#4568

From: bettanmic@...
Date: Fri Oct 27, 2006 9:08 am
Subject: Re: geography - evans

bettanmic

Offline

We live just south of Boston and Paul seems worse in the spring and fall, changing seasons,

allergies to things growing and blooming, who knows, he is feeling pretty good now even though his platelets don't seem to go over 40,000. We are just enjoying him feeling good however long it lasts! He continues on cellcept 500 mg every other day and he hasn't had IVIG since August!!! so cool for us. Everyone continues to be in my thoughts and prayers

Betty Mom to Paul 19/evans +

#4567

From: lisa shoenfelt <lmshoenfelt@...>
Date: Thu Oct 26, 2006 2:10 am
Subject: Re: geography - evans

lmshoenfelt

Offline

I see everyone saying Spring and Fall are the worst, but we live in Florida and my daughter has had it the worst in the summer. She was diagnosed in July of 2005. Summer of 2005 and 2006 were the worst for her. She did drop really low in December but by spring she was fine until summer.

One thing I do always wonder about though is we lived in South Florida(Key Largo) and she started the Evan's symptoms just a few weeks after we moved to North Florida(Pensacola). However, 3 years ago we lived 2 miles from here for 6 months and she did not have Evan's. There are just so many factors that could play a role. Like Lou said, hopefully one day we will be able to peice it all together. I have even sugested to our Hemotologist that we move back to South Florida and he said that it would not change anything. He says that due to the fact that her mone marrow biopsy came back normal, that tells us that it is nothing enviromental. He said that if it were, it would have had different results on teh bone marrow biopsy. Doctors just know so little about this disease and I think sometimes they only tell us the proven fact, not what they may really think may play a role in it.

My daughter has been having horrible hives though the past 2 months. I took her to an allergist 2 1/2 years ago when she had it before and they did the test on her back and it all came back negative. She even gets where her eyes, lips and throat will swell. We know from process of elimination that she is allergic to NSAIDS(like mortin), cherry slushies, sprite and coconut. She had not been exposed to any of those and still getting the reactions. It does not only happen in our town or house though. We were at he hemotologist that is 350 miles away last week and it happend. We have an appointment with the allergist in December so hopefully they can tell us more.

I am just so thankful though that her platelts are doing so good. She is still on the 6mp and last week her platelts were up to 398,000. Over the summer, we could not get them above 10,000.

Lisa(Madsion's mom w/Evan's 6 yrs. old)

lnalou@... wrote:

Hi everyone,

I think this is a very good question. We lived in FL for all of Katie's life. Fall and spring were always her worst times - especially fall - another mother and I (she was in NC) had decided that it had to be the pumpkins, because there was nothing else different that came out at that time of year.

I don't know if there is a real answer to this, but from my nursing experience, fall and spring are usually the times when things flare - maybe it's the change of seasons?

Other's have mentioned swimming in chlorinated pools - Katie swam like a fish and loved our pool. She never seemed to be affected by it in any adverse way.

It is a mystery that we have to keep examining to hopefully make some sense of it some day...

Lou

LISA

Get your email and more, right on the new Yahoo.com

#4566

From: lnalou@...
Date: Wed Oct 25, 2006 6:41 pm
Subject: Re: geography - evans

lnalou

Offline

Hi everyone,

I think this is a very good question. We lived in FL for all of Katie's life. Fall and spring were always her worst times - especially fall - another mother and I (she was in NC) had decided that it had to be the pumpkins, because there was nothing else different that came out at that time of year.

I don't know if there is a real answer to this, but from my nursing experience, fall and spring are usually the times when things flare - maybe it's the change of seasons?

Other's have mentioned swimming in chlorinated pools - Katie swam like a fish and loved our pool. She never seemed to be affected by it in any adverse way.

It is a mystery that we have to keep examining to hopefully make some sense of it some day...

Lou

#4565

From: "madnice73" <franknam@...>
Date: Wed Oct 25, 2006 10:00 pm
Subject: Re: geography - evans

madnice73

Offline

--- In EvansSyndrome@yahoogroups.com, j k <jakk5858@...> wrote:
>
> Does anyone have any thoughts on the climate playing a role in evans?
> my husband and myself both wonder if our michigan location should be
changed to somewhere warmer such as florida we also wonder if there
are more cases of evans in one area or another.
>
>
> ---------------------------------
> Do you Yahoo!?
>  Everyone is raving about the  all-new Yahoo! Mail.
>

My mom has Evans Syndrome and her doctor has told us that it's a
cold-induced problem.  So she has to be VERY careful in the
Fall/Winter (she lives in NJ).  I even warn her about digging through
her freezer for more than a couple of seconds.  But she has to make
sure she's bundled up entirely when going outside in the cold.

Frank Nam

#4564

From: MoMan136@...
Date: Wed Oct 25, 2006 5:29 pm
Subject: Re: geography - evans

moman136320

Offline

I live in New York, and my episodes have always began in the fall. I've never been sick in the summer, so I believe that the Summer-Fall transition has a lot to do with it for some people. Best wishes.

-Mike, 21

#4563

From: Jessica Diggs-Growden <indigoleo27@...>
Date: Wed Oct 25, 2006 7:55 pm
Subject: Re: geography - evans

indigoleo27

Offline

Thats a fascinating trigger. I never would have thought about it.

My Evans seems to be triggered by Fall. All of my episodes have occured at the start of Fall. I live in Maryland, so the weather and temperature is varied.

Jessica (17 with Evans since 1990)
Matthew Berlin <mberlin1@...> wrote:

Hi. My son has Evans. We have found that repeated or frequent swimming in a pool with high chlorine dose brought on symptoms and/or complicated existing ones. Matt. (16 yr old Mark has lived w/ Evan's since 1998)

----- Original Message -----

From: lisa shoenfelt

To: EvansSyndrome@yahoogroups.com

Sent: Thursday, October 19, 2006 12:35 PM

Subject: Re: [EvansSyndrome] geography - evans

We live in Florida and my daughter has Evan's. It started last summer when it was very hot. She was bad all winter also. She is finally doing better now tht she is on 6mp. All summer long when it was hot we could not get her platelets over 10,000 so I dont think the cold weather does it. Now that she is on 6mo, her platelets are at 398,000. Lisa (madison's mom 6 yrs. old w/Evan's)

j k <jakk5858@yahoo.com> wrote:

Does anyone have any thoughts on the climate playing a role in evans?
my husband and myself both wonder if our michigan location should be changed to somewhere warmer such as florida we also wonder if there are more cases of evans in one area or another.

Do you Yahoo!?
Everyone is raving about the all-new Yahoo! Mail.

LISA

Do you Yahoo!?
Get on board. You're invited to try the new Yahoo! Mail.

Stay in the know. Pulse on the new Yahoo.com. Check it out.

#4562

From: lisa shoenfelt <lmshoenfelt@...>
Date: Mon Oct 23, 2006 4:52 pm
Subject: Re: geography - evans

lmshoenfelt

Offline

My daughter also got Evan's while she was in swimming lessons. THe doctors insist that the chlorine has nothing to do with it, but Im not so sure. Lisa(madison's mom 6 yrs. old w/Evan's)

Matthew Berlin <mberlin1@...> wrote:

Hi. My son has Evans. We have found that repeated or frequent swimming in a pool with high chlorine dose brought on symptoms and/or complicated existing ones. Matt. (16 yr old Mark has lived w/ Evan's since 1998)

----- Original Message -----

From: lisa shoenfelt

To: EvansSyndrome@yahoogroups.com

Sent: Thursday, October 19, 2006 12:35 PM

Subject: Re: [EvansSyndrome] geography - evans

We live in Florida and my daughter has Evan's. It started last summer when it was very hot. She was bad all winter also. She is finally doing better now tht she is on 6mp. All summer long when it was hot we could not get her platelets over 10,000 so I dont think the cold weather does it. Now that she is on 6mo, her platelets are at 398,000. Lisa (madison's mom 6 yrs. old w/Evan's)

j k <jakk5858@yahoo.com> wrote:

Does anyone have any thoughts on the climate playing a role in evans?
my husband and myself both wonder if our michigan location should be changed to somewhere warmer such as florida we also wonder if there are more cases of evans in one area or another.

Do you Yahoo!?
Everyone is raving about the all-new Yahoo! Mail.

LISA

Do you Yahoo!?
Get on board. You're invited to try the new Yahoo! Mail.

LISA

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2�/min or less.

#4561

From: "Matthew Berlin" <mberlin1@...>
Date: Mon Oct 23, 2006 2:32 pm
Subject: Re: geography - evans

moomoomom13126

Offline

Hi. My son has Evans. We have found that repeated or frequent swimming in a pool with high chlorine dose brought on symptoms and/or complicated existing ones. Matt. (16 yr old Mark has lived w/ Evan's since 1998)

----- Original Message -----

From: lisa shoenfelt

To: EvansSyndrome@yahoogroups.com

Sent: Thursday, October 19, 2006 12:35 PM

Subject: Re: [EvansSyndrome] geography - evans

We live in Florida and my daughter has Evan's. It started last summer when it was very hot. She was bad all winter also. She is finally doing better now tht she is on 6mp. All summer long when it was hot we could not get her platelets over 10,000 so I dont think the cold weather does it. Now that she is on 6mo, her platelets are at 398,000. Lisa (madison's mom 6 yrs. old w/Evan's)

j k <jakk5858@yahoo.com> wrote:

Does anyone have any thoughts on the climate playing a role in evans?
my husband and myself both wonder if our michigan location should be changed to somewhere warmer such as florida we also wonder if there are more cases of evans in one area or another.

Do you Yahoo!?
Everyone is raving about the all-new Yahoo! Mail.

LISA

Do you Yahoo!?
Get on board. You're invited to try the new Yahoo! Mail.

#4560

From: lisa shoenfelt <lmshoenfelt@...>
Date: Thu Oct 19, 2006 4:35 pm
Subject: Re: geography - evans

lmshoenfelt

Offline

We live in Florida and my daughter has Evan's. It started last summer when it was very hot. She was bad all winter also. She is finally doing better now tht she is on 6mp. All summer long when it was hot we could not get her platelets over 10,000 so I dont think the cold weather does it. Now that she is on 6mo, her platelets are at 398,000. Lisa (madison's mom 6 yrs. old w/Evan's)

j k <jakk5858@...> wrote:

Does anyone have any thoughts on the climate playing a role in evans?
my husband and myself both wonder if our michigan location should be changed to somewhere warmer such as florida we also wonder if there are more cases of evans in one area or another.

Do you Yahoo!?
Everyone is raving about the all-new Yahoo! Mail.

LISA

Do you Yahoo!?
Get on board. You're invited to try the new Yahoo! Mail.

#4559

From: "Stephanie Chavez" <Schave04@...>
Date: Thu Oct 19, 2006 4:40 am
Subject: RE: geography - evans

m_a_chavez

Offline

http://nutraingredients.com/news/ng.asp?id=56996&n=dt3&c=sgdtefppchciktl

I was wondering the same thing, although we live in CA and still live with the disease.

I found an article about lack of certain vitamins (D) from living in the northern climates.

This article is on MS, which is another type of autoimmune process. I found other articles

similar for other autoimmune processes.

----- Original Message -----

From: j k

To: EvansSyndrome@yahoogroups.com

Sent: 10/18/2006 6:01:29 PM

Subject: [EvansSyndrome] geography - evans

Does anyone have any thoughts on the climate playing a role in evans?
my husband and myself both wonder if our michigan location should be changed to somewhere warmer such as florida we also wonder if there are more cases of evans in one area or another.

Do you Yahoo!?
Everyone is raving about the all-new Yahoo! Mail.

#4558

From: j k <jakk5858@...>
Date: Thu Oct 19, 2006 12:50 am
Subject: geography - evans

jakk5858

Offline

Does anyone have any thoughts on the climate playing a role in evans?
my husband and myself both wonder if our michigan location should be changed to somewhere warmer such as florida we also wonder if there are more cases of evans in one area or another.

Do you Yahoo!?
Everyone is raving about the all-new Yahoo! Mail.

#4557

From: lnalou@...
Date: Tue Oct 17, 2006 7:11 pm
Subject: Re: Meningiococcal

lnalou

Offline

In a message dated 10/16/2006 2:22:13 PM Eastern Standard Time, rkdhamija@... writes:

She came back and said it needed to
be given to intra-muscle (??) and that would be the thigh. I got the
shot on the thigh. She also gave me two Tylenols for any fevers. I
stayed fine. But I'm wondering if she gave the shot correctly i.e on
the thigh. Anyone has experience with this vaccine? How long is it
good for?

Ravi,

The nurse was correct. Most vaccines are given intra-muscular or IM. They can be given in the thigh, arms or buttocks. I believe it is a one time thing like the pneumococcal vaccine. I know we usually give it to teenagers in high school or getting ready to go to college and live in dorms etc.

Lou

Lou Addington, RN
Above the Notch Medical Legal Consulting
1376 Presidential Highway
Jefferson, NH 03583

603-586-7983
cell 603-723-7983

LNALOU@...
Click here: Evans Syndrome Research and Support http://www.evanssyndrome.org/

#4556

From: lnalou@...
Date: Tue Oct 17, 2006 7:08 pm
Subject: Re: Special Needs Trust Fund

lnalou

Offline

In a message dated 10/17/2006 5:07:28 PM Eastern Standard Time, rnm171@... writes:

Does anyone know anything about a Special Needs Trust Fund. Has
anyone set one up for their child with Evans? We were told about this
Trust as a way that a child can have some assests but still be eligible
for some government help. We would like any information anyone would
have about this Trust Fund and how to go about it.

Nancy,

I don't have personal with a fund like this but would think that your local bank that you do business with could assist you in setting something up. Let us know what you find out.

Lou

Reply | Forward | Messages in this Topic (2)

#4555

From: "rnm171" <rnm171@...>
Date: Tue Oct 17, 2006 8:59 pm
Subject: Special Needs Trust Fund

rnm171

Offline

Hello,

      Does anyone know anything about a Special Needs Trust Fund.  Has
anyone set one up for their child with Evans?  We were told about this
Trust as a way that a child can have some assests but still be eligible
for some government help.  We would like any information anyone would
have about this Trust Fund and how to go about it.

Thanks,
Nancy (mother of Rachel 16 w/evans)

Reply | Forward | Messages in this Topic (2)

#4554

From: "shoenfelts" <shoenfelts@...>
Date: Mon Oct 16, 2006 11:32 pm
Subject: Re: Meningiococcal

shoenfelts

Offline

-
My 6 year old granddaughter had to get this shot because they were
preparing for a spleenectomy.  The doctor had it given SQ (Sub
qutaneous)...not intramuscular, even tho that is the recommended
site.  It is a painful injection and when given deep into the muscle
it doesn't swell as much and is asorbed better and supposedly isn't
as painful as given Sub Q. However, because of her very low
platelets...less than 5,000 he was afraid giving it deep muscle
might cause bleeding that would be unconltrolled.   She did have it
SubQ,  in her arm and it swelled and was extremelely painful anf
badly bruised for a few days.
-- In EvansSyndrome@yahoogroups.com, Shari Miller <sharim61@...>
wrote:
>
> Ravi,
>   if the vaccine you are referring to is wht i think it is, it is
recommended (or maybe required) for college students (dorm life) and
even for high school kids. my son (with evans) received the shot
last year. it was given by his pediatrician and he got it in the
arm.  he was fine although we were told a slight fever for a couple
of days would be normal and not a problem.
>
>   hope this helps,
>   shari (mom to ben 15 w/ evans)
>
> rkdhamija <rkdhamija@...> wrote:
>           Hi,
>
> I had splenectomy in Apr, 2006 and then Rituxan in Jun/Jul 2006.
As
> a precaution I got Flu shot last month at my PCP's office. I had
> Pneumococcal 2 years ago. I checked with my PCP and Hematologist
> about Meningiococcal. Both of them said it won't be a bad idea to
> get one. I got the prescription and bought the vaccine at local
> Safeway pharmacy. They said insurnace does not cover injectibles,
so
> I had to pay $110 for the vaccine. Does anyone have different
> experience?
>
> Next, I went to my Hematlogist's office for my regular CBC and I
> told him if I could get Meningiococcal that I brought with me. The
> nurse hadn't given that before. She came back and said it needed
to
> be given to intra-muscle (??) and that would be the thigh. I got
the
> shot on the thigh. She also gave me two Tylenols for any fevers. I
> stayed fine. But I'm wondering if she gave the shot correctly i.e
on
> the thigh. Anyone has experience with this vaccine? How long is it
> good for?
>
> Thanks
> Ravi
>
>
>
>
>
>
> ---------------------------------
> How low will we go? Check out Yahoo! Messenger's low  PC-to-Phone
call rates.
>

#4553

From: Shari Miller <sharim61@...>
Date: Mon Oct 16, 2006 8:17 pm
Subject: Re: Meningiococcal

sharim61

Offline

Ravi,

if the vaccine you are referring to is wht i think it is, it is recommended (or maybe required) for college students (dorm life) and even for high school kids. my son (with evans) received the shot last year. it was given by his pediatrician and he got it in the arm. he was fine although we were told a slight fever for a couple of days would be normal and not a problem.

hope this helps,

shari (mom to ben 15 w/ evans)

rkdhamija <rkdhamija@...> wrote:

Hi,

I had splenectomy in Apr, 2006 and then Rituxan in Jun/Jul 2006. As
a precaution I got Flu shot last month at my PCP's office. I had
Pneumococcal 2 years ago. I checked with my PCP and Hematologist
about Meningiococcal. Both of them said it won't be a bad idea to
get one. I got the prescription and bought the vaccine at local
Safeway pharmacy. They said insurnace does not cover injectibles, so
I had to pay $110 for the vaccine. Does anyone have different
experience?

Next, I went to my Hematlogist's office for my regular CBC and I
told him if I could get Meningiococcal that I brought with me. The
nurse hadn't given that before. She came back and said it needed to
be given to intra-muscle (??) and that would be the thigh. I got the
shot on the thigh. She also gave me two Tylenols for any fevers. I
stayed fine. But I'm wondering if she gave the shot correctly i.e on
the thigh. Anyone has experience with this vaccine? How long is it
good for?

Thanks
Ravi

How low will we go? Check out Yahoo! Messenger�s low PC-to-Phone call rates.

#4552

From: "rkdhamija" <rkdhamija@...>
Date: Mon Oct 16, 2006 6:08 pm
Subject: Meningiococcal

rkdhamija

Offline

Hi,

I had splenectomy in Apr, 2006 and then Rituxan in Jun/Jul 2006. As
a precaution I got Flu shot last month at my PCP's office. I had
Pneumococcal 2 years ago. I checked with my PCP and Hematologist
about Meningiococcal. Both of them said it won't be a bad idea to
get one. I got the prescription and bought the vaccine at local
Safeway pharmacy. They said insurnace does not cover injectibles, so
I had to pay $110 for the vaccine. Does anyone have different
experience?

Next, I went to my Hematlogist's office for my regular CBC and I
told him if I could get Meningiococcal that I brought with me. The
nurse hadn't given that before. She came back and said it needed to
be given to intra-muscle (??) and that would be the thigh. I got the
shot on the thigh. She also gave me two Tylenols for any fevers. I
stayed fine. But I'm wondering if she gave the shot correctly i.e on
the thigh. Anyone has experience with this vaccine? How long is it
good for?

Thanks
Ravi