Re: New Members - /

[Guest guest]

HI Ursula,

is doing good I guess, thank you for asking!!! He just

got over that nasty GI bug and the hives which lasted pretty much a

week.

is being tried off his infusions right now. His last one

was Jan.21 so it hasn't been too long yet. Every summer he is taken

off after Memorial Day and is rechecked in August. This past August

he was just over 800 so the Dr. wants to see if it is a functional

level. He too does not respond to the pneumovax. He has had 4 of them

with no response. Nate sees Dr. Geha at Boston Childrens and also got

his infusions every 2 weeks at home, he has the most awesome nurse.

I pray it all works out but at the same time I fear all this because

I don't want him to go thru again what he went thru before. It would

be hard to confine him at 9 years old because of illness. It was soo

much easier in that aspect when he was younger. Now he is much older

and things get him down. He has a lot of learning disabilities due to

not hearing well for the first year of life. He also has ADD, CAPD,

and possible SI issues. He is going for a big evaluation on the 26th

at Mass General so hopefully we can get him some help with his school

work. His meds for his ADD make him depressed so it has been hard on

him since normally he his very happy.

Does anyone else out there have a kid who has problems with

hives? Mine gets them on and off all the time for no apparent reason

and sometimes either with or after illness. When he was 2 he had them

for 10 weeks with an elevated SED rate. They thought it was

vasculitis but they went away just when the Drs. had decided it was

time to test him for it. So every time he gets them for any length of

time I get nervous. It is awful for him also.

I will keep all the sick little ones in my prayers, it has been a

terrible year for illness in my neck of the woods.

Maurita: you have my deepest sympathies.

[Guest guest]

- Macey gets hives and then sometimes she gets a condition called

urticaria. Which to me is like having the hives but not having to deal with

the itching. The urticaria leaves large bruises though and discolors the

skin for many many months after. Will they redo the testing after he's been

off 3 months or just when he becomes symptomatic again? So glad you were

able to find our group and jump onboard.

Ursula Holleman uahollem@... <mailto:uahollem@...>

and Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

http://www..com

[Guest guest]

In a message dated 2/14/02 5:21:42 PM Pacific Standard Time,

Hiddenwell@... writes:

> This past August

> he was just over 800 so the Dr. wants to see if it is a functional

> level. He too does not respond to the pneumovax.

Have they tried Prevnar? My son had no response to the pneumovax but a

partial response to the Prevnar.

le

11, Selective Antibody Def., IVIG for 4 years, every 3 weeks.

Syringomyelia

6 surgeries in two years before being diagnosed: 4 sinus, tonsil and adenoids

removed, septic hip since IVIG 0 surgery needed!

Trailing off IVIG 6/28/01... Biopsy of throat and Nasal endoscopy 10/24/01

[Guest guest]

Hi Ursula,

NAthan has had the urticaria with bruising also but sometimes it

itches and sometimes they don't too much. We just give Benadryl and

hope they don't come back!!! I've tried giving him Claritan also but

it doens't work as well. He was given Zantac when he had the GI bug

and we thought maybe he was allergic but he didn't get the hives

every time I gave it to him so I think it was the virus. They are

gone for the moment but I have never seen a kid get hives like this

one. He has an older brother who is pretty healthy and he has never

had them.

Nate will be re-tested in August if all goes well. They told me

that if he becomes sick to just call and they will put him back on

it. I actually have a bottle in my fridge because the homecare

company sent me 1 too many so they said to hold onto it in case he

needed it. My question would be since everyone gets sick at some

point, how much is too much illness for these guys, where do you draw

the line? So far his energy is still up there. He is not tired at all

and that is usually a sure sign for him that he is run down but it

has onlybeen 3 1/2 weeks. So it is still early to tell much of

anything. In the middle of Jan. while still on his infusions he came

down with a low grade sinus infection and I only new it due to his

being tired, cranky, and his breath. We put him on Ceftin and within

a few days he snapped out of it and was ok. He is usually quite

healthy on his meds.

Thanks for the welcome!!!

take care, mom to Nick,13 and almost 9,CVID,ADD, & CAPD

[Guest guest]

le,

No, they never tried the Prevnar on him that I am aware of. When I

had asked about it when it first came out I was told that he was too

old for it and that they only gave it to the little kids. Hi immuno

may have given it to him but had not specifically stated so. Who

knows.

[Guest guest]

Ursula- Back when Nate had them for 10 weeks that was what they gave

him for it (Atarax) , it worked well but knocked him out!!! We also

have the Elocon cream but stupid me didn't think to use it this last

time. Thanx for the reminder!!! :0) Mostly they just tell me to give

him benedryl, if that doesn't do much to get rid of them then they'll

give me a script for the Atarax.

As far as Dr.s go, he only has his ped., asthma dr., and his

immunologist. Dr.Geha is a great one for quality of life. He moved up

his infusions from 3 to 2 weeks because way back when he was always

tired and starting to come down with things by the 3rd week and not

doing too well in school. He told me most of his patients were on 2

week schedules due to it dying off by 3 weeks. His secretary told me

to just call if he starts to get sick again but I also don't want to

appear to be the neurotic mom either!! The summer of 2000 he didn't

even make it the whole summer because he caught one thing after

another but Dr. Geha had also told me that these things weren't

coverd by the ivig. He had had Fifth's disease, strep, and one other

thing that I can't remember, and of course hives as usual!!! All that

after being off for only a month or so after having a fairly normal

winter. I was told viruses weren't covered by the ivig but I do

question that because gets way more viruses off it than when

he is on it.

[Guest guest]

In a message dated 2/15/02 12:17:57 PM Pacific Standard Time,

Hiddenwell@... writes:

> When I

> had asked about it when it first came out I was told that he was too

> old for it and that they only gave it to the little kids

My son is 11. Prevnar contains diffrent strains not covered by the

pneumovax. I would ask to have him tested.

also had no response to the pneumovax when tested 5 years ago but his

Igg levels were in the normal range........due to infections he was put on

IVIG for 4 years.

Recently.......three months ago he was given Prevnar and did have a partial

response, he still struggles with infections but they are not as bad as

before Prevnar, our biggest problem is his fatigue issues.....which I believe

IVIG helped tremendously! We are currently in the wait and watch

mode...........the doc is not eager to put back on IVIG due to the

partial response to Prevnar so we are waiting to see how he does.........in

the mean time our immun is sending us to the pain clinic at LPCH stanford for

bio feedback and accupunture to address the fatigue issues and pain

experiences.

To be honest with you I am tired of people saying whats wrong with , is

he sick, flu..........Most people don't know before IVIG so they see a

kid who is not the same kid (off IVIG) it shows up the most when he excerts

a lot of energy.......recess, gymnastics after wards he is exhausted. We

just had a big meet and looked like he had the flu!!! Swollen eyes,

stuffed, quite, dark circles........People constantly ask is he ok and I feel

like Im a " cold " mom......I tell them this is the price he has to pay if he

wants to do sports..... does not have to do it ....Our local newspaper

just did an article on him and they asked him why does he do sports his

response was .......... said he likes to stay busy and physically active

because it takes his mind off the pain and fatigue he feels. Rayn says ...

When you're doing an activity, you can't feel the pain, You concentration

diverts from the pain. "

its really hard watching him push himself thru the pain...........I wish the

doc could watch then he would understand how much the IVIG helped.

Anyways sorry for getting side tracked.........I'd try Prevnar it might help

le

11, Selective Antibody Def., IVIG for 4 years, every 3 weeks.

Syringomyelia

6 surgeries in two years before being diagnosed: 4 sinus, tonsil and adenoids

removed, septic hip : since IVIG 0 surgery needed!

Trailing off IVIG 6/28/01... Biopsy of throat and Nasal endoscopy 10/24/01

[Guest guest]

le - we were told that the Prevnar (Macey's had it twice) contained 7 of

the 23 strains (aka serotypes) that are

in the pneumovax (she's had that twice also). We were told that the 7 were

conjugated which allowed the t-cells to

alter how the b-cells mounted a response to it. It's not that the Prevnar

contains any different serotypes than the

pneumovax, just that the 7 it does contain are altered in a way to trick the

system into responding. At least that's

what we were told by Duke.

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, Sensory

Integration Disorder, Diabetes Insipidus, colonic

inertia)

http://maceyh.home.att.net

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