Re: new to board w/question about overactive toddler after IVIG

February 6, 2006

Kris,

We have had somewhat similar experiences with our 4 1/2 year old son, but he

has X-SCID. He started getting IG therapy 4 years ago, but it really didn't

affect his behavior until his 2nd BMT took in November 2002, when he was 14

months old. His behavior got more crazy when he got off immunosuppressants

in January 2004. He's been in his terrible two's for 2 1/2 years now! It's

a great trade off considering where he has come from.

Antipov

mother to , 4 years old, X-SCID, 2 BMTS @ Duke, normal T cell

function, SCIG weekly

new to board w/question about " overactive " toddler after

IVIG

Hi. I am new to this group, but wanted to see if anyone has had a similar

experience with their child. My son(2yrs,4 mos old) gets his IVIG for

" undefined " Hypogammaglobulinemia every 3 wks(which he started at 18 months

old), and for the 1st day or 2 he is very tired, then he gets this energy

burst by the third day that lasts until about 3 to 4 days before his next

infusion(when he starts getting tired, diarrhea, GI problems, etc. again).

I know that climbing and running and jumping are normal 2 yr old behaviors,

but this is non-stop. He even wakes up wanting to run and play at 3 am!

Before the IVIG, he was always pretty calm. He enjoyed playing quietly with

his toys, being read to, and watching movies(he was also sick all the time

with GI, ear, eye, and sinus infections). I sense that this change is

probably because he is feeling so much better...which I am VERY happy about.

It could also be because he is now able tolerate nearly all foods, and prior

to the IVIG he reacted to everything and was on a " Neocate ONLY " diet.

Knowing all this, however, I still cannot help but wonder if this is a

side-effect to the IVIG or if my son may be hyperactive. He's only 2, so I

know he is too young to tell...but I do not know any other 2 year olds this

active. I even have strangers in the supermarket telling me that I've got

my hands full with such an active boy! This just seems like so much more

than the " terrible twos " . Has anyone else had a similar behavioral change in

their child after starting IVIG?

Kris--mom to Will(2yrs, 4mos)- " undefined " Hypogammaglobulinemia and

Ash(4yrs)-asthma, moderate/severe env. allergies

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February 6, 2006

Hi ,

Yes! I agree that I would much rather have him this way and feeling

better! It is amazing how many people tell me that " He is a different

child " now that he gets the infusions. Since June, he has only had

one sinus infection and right now he has an ear(and possibly sinus)

infection due to a cold his sister brought home from school...a far

cry from getting a new infection every other week, even when on

prophylactic antibiotics. In his first 18 months he was on antibiotics

26 times for infections. His GI issues started when he was 2 days old.

It is just really amazing to me that this change occurred so

quickly...immediately after the 1st infusion...like someone flipped a

switch and out popped my little Energizer Bunny!

February 7, 2006

In a message dated 2/6/2006 5:24:59 PM Central Standard Time, dktklt@...

writes:

> It could also be because he is now able tolerate nearly all foods,

> and prior to the IVIG he reacted to everything and was on a " Neocate

> ONLY " diet. Knowing all this, however, I still cannot help but

>

Kris:

Just a thought. Someone told me something interesting about food

allergies/intolerances. They saw a newsmagazine program (like a " 60 Minutes "

type show)

about food allergies, they showed a boy who was acting completely normal, nice,

sweet, all that. They gave him a tomato to eat. Then he was raging around,

bouncing off the walls, going bananas. He didn't have a rash or hives or

whatever, his only symptoms were behavioral.

My youngest (non-PID) has a dairy intolerance. We've been " cheating "

recently, hoping to get away with it, as her intolerance seems to have improved

some.

But her behavior is much worse now. I attribute some of it to the " independent

threes " , but I wonder. I wonder if we go back to NO dairy like we should,

would her behavior improve. Just something to consider, if your son has some

food

issues and you are " cheating " like we are!

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

February 7, 2006

In a message dated 2/6/2006 5:24:59 PM Central Standard Time, dktklt@...

writes:

> It could also be because he is now able tolerate nearly all foods,

> and prior to the IVIG he reacted to everything and was on a " Neocate

> ONLY " diet. Knowing all this, however, I still cannot help but

>

Kris:

Just a thought. Someone told me something interesting about food

allergies/intolerances. They saw a newsmagazine program (like a " 60 Minutes "

type show)

about food allergies, they showed a boy who was acting completely normal, nice,

sweet, all that. They gave him a tomato to eat. Then he was raging around,

bouncing off the walls, going bananas. He didn't have a rash or hives or

whatever, his only symptoms were behavioral.

My youngest (non-PID) has a dairy intolerance. We've been " cheating "

recently, hoping to get away with it, as her intolerance seems to have improved

some.

But her behavior is much worse now. I attribute some of it to the " independent

threes " , but I wonder. I wonder if we go back to NO dairy like we should,

would her behavior improve. Just something to consider, if your son has some

food

issues and you are " cheating " like we are!

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

February 7, 2006

In a message dated 2/7/2006 2:00:19 PM Central Standard Time, dktklt@...

writes:

> He is still having GI problems with

> citrus and dairy milk, but eats yogurt and Kraft American cheese,

> macaroni and cheese, etc. without any apparent physical reactions(no

> rash, hives, GI problems, etc.)...and he can't seem to get enough of

> these! I have not been limiting these b/c they are really his only

> source of Calcium and with these foods he is now doing so much

> better weight-wise

Kris:

I hear ya -- it's sooooooo nice to lift some of the restrictions, isn't

it?!!! I started off letting Kate have a cupcake at somebody's birthday party,

then

thought, why not let her have a slice of pizza, etc. etc. She's showing tiny

patches of eczema on her legs and bottom (her usual spots for it) but not the

big horrible patches she used to get, and no GI symptoms yet. I don't know

whether to back off again (letting the eczema be my warning) or keep enjoying.

The American Academy of Pediatrics' " Caring for Your Baby and Young Child: Birth

to Age 5 " says:

" You may be tempted to 'cheat' on the milk-free diet once your child's

symptoms lessen or disappear. Don't! If you give your child even small

quantities of

milk or its products, he may continue to have mild symptoms or an ongoing

hidden reaction and he may even develop other food allergies. In the process,

you

also may prolong the milk allergy and reduce his chance of outgrowing it. "

If it wasn't from the AAP, I'd think that was NUTS, that advice. Is that

possible? So I dunno. I'm so loving being able to expand Kate's horizons -- the

dairy-free diet is a pain. was tested and didn't show a true " allergy " ,

and she seems to have " outgrown " her problems even though she had some dairy

pretty much daily. Kate's problems have always been worse than 's were but

were never really serious, so I wonder if hers is more of an intolerance rather

than a true allergy, also. ?????????????????????

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

February 7, 2006

Kris,

I had a daughter that reacted that way to red food dyes. Tyelonol reeeallly

set her off. Also, are they sending him home on steroids after IVIG? Steroids

after IVIG made my 4year old really hyper. Other meds can do it too.

Becki

Reagon (4 yrs) CVID, asthma, allergies

Re: new to board w/question about " overactive " toddler after

IVIG

In a message dated 2/6/2006 5:24:59 PM Central Standard Time, dktklt@...

writes:

> It could also be because he is now able tolerate nearly all foods,

> and prior to the IVIG he reacted to everything and was on a " Neocate

> ONLY " diet. Knowing all this, however, I still cannot help but

>

Kris:

Just a thought. Someone told me something interesting about food

allergies/intolerances. They saw a newsmagazine program (like a " 60 Minutes "

type show)

about food allergies, they showed a boy who was acting completely normal,

nice,

sweet, all that. They gave him a tomato to eat. Then he was raging around,

bouncing off the walls, going bananas. He didn't have a rash or hives or

whatever, his only symptoms were behavioral.

My youngest (non-PID) has a dairy intolerance. We've been " cheating "

recently, hoping to get away with it, as her intolerance seems to have

improved some.

But her behavior is much worse now. I attribute some of it to the " independent

threes " , but I wonder. I wonder if we go back to NO dairy like we should,

would her behavior improve. Just something to consider, if your son has some

food

issues and you are " cheating " like we are!

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

February 7, 2006

Kris,

I had a daughter that reacted that way to red food dyes. Tyelonol reeeallly

set her off. Also, are they sending him home on steroids after IVIG? Steroids

after IVIG made my 4year old really hyper. Other meds can do it too.

Becki

Reagon (4 yrs) CVID, asthma, allergies

Re: new to board w/question about " overactive " toddler after

IVIG

In a message dated 2/6/2006 5:24:59 PM Central Standard Time, dktklt@...

writes:

> It could also be because he is now able tolerate nearly all foods,

> and prior to the IVIG he reacted to everything and was on a " Neocate

> ONLY " diet. Knowing all this, however, I still cannot help but

>

Kris:

Just a thought. Someone told me something interesting about food

allergies/intolerances. They saw a newsmagazine program (like a " 60 Minutes "

type show)

about food allergies, they showed a boy who was acting completely normal,

nice,

sweet, all that. They gave him a tomato to eat. Then he was raging around,

bouncing off the walls, going bananas. He didn't have a rash or hives or

whatever, his only symptoms were behavioral.

My youngest (non-PID) has a dairy intolerance. We've been " cheating "

recently, hoping to get away with it, as her intolerance seems to have

improved some.

But her behavior is much worse now. I attribute some of it to the " independent

threes " , but I wonder. I wonder if we go back to NO dairy like we should,

would her behavior improve. Just something to consider, if your son has some

food

issues and you are " cheating " like we are!

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

February 7, 2006

Hi ,

That is a very interesting point. I will definately have to keep an

eye out for any food triggers. He is still having GI problems with

citrus and dairy milk, but eats yogurt and Kraft American cheese,

macaroni and cheese, etc. without any apparent physical reactions(no

rash, hives, GI problems, etc.)...and he can't seem to get enough of

these! I have not been limiting these b/c they are really his only

source of Calcium and with these foods he is now doing so much

better weight-wise, although he is still only in the 5-10th

percentile for his age (and 95th for height!) He also sneaks sips of

his sisters OJ from her sippy cup occassionally....and then suffers

with diarrhea, and a bleeding red diaper rash for the next day or

so. He is starting to show signs of mild eczema again(bumpy, dry

skin on his torso), but this is very, very mild compared to the head-

to-toe scaley rashes he used to have. Maybe this is a mild reaction

to the dairy products? I think I will try to see if he will drink

the Calcium and Vitamin D enriched rice-milk(he does not tolerate

soy), and if so, I will gradually remove the dairy to see if his

behavior improves....thanks so much for the suggestion!

>

> Kris:

>

> Just a thought. Someone told me something interesting about food

> allergies/intolerances. They saw a newsmagazine program (like

a " 60 Minutes " type show)

> about food allergies, they showed a boy who was acting completely

normal, nice,

> sweet, all that. They gave him a tomato to eat. Then he was raging

around,

> bouncing off the walls, going bananas. He didn't have a rash or

hives or

> whatever, his only symptoms were behavioral.

>

> My youngest (non-PID) has a dairy intolerance. We've

been " cheating "

> recently, hoping to get away with it, as her intolerance seems to

have improved some.

> But her behavior is much worse now. I attribute some of it to

the " independent

> threes " , but I wonder. I wonder if we go back to NO dairy like we

should,

> would her behavior improve. Just something to consider, if your

son has some food

> issues and you are " cheating " like we are!

>

> (mom to , age 7, dairy intolerant-related GERD --

currently has

> polysaccharide antibody def, previously had transient IgG, IgA, t-

cell & other

> defs... and also to Kate, age 3!, more dairy intolerant but very

healthy!)

>

February 7, 2006