New Member

Posted July 15, 2004 · July 15, 2004

In a message dated 7/15/2004 4:27:42 PM Eastern Daylight Time,

amyjo4181@... writes:

He will be 19 months old next week and he is about 23 to 24 lbs and 32.5

inches. is very pale and has huge dark circles under his eyes.

Hmm, I have a question? How many kids are thin, pale, and have dark circles

under their eyes?

Britt is age 13, about 5 " 4 weighs 85 lbs, very pale and has dark circles

under her eyes.

Janet

Posted July 15, 2004 · July 15, 2004

In a message dated 7/15/2004 4:27:42 PM Eastern Daylight Time,

amyjo4181@... writes:

He will be 19 months old next week and he is about 23 to 24 lbs and 32.5

inches. is very pale and has huge dark circles under his eyes.

Hmm, I have a question? How many kids are thin, pale, and have dark circles

under their eyes?

Britt is age 13, about 5 " 4 weighs 85 lbs, very pale and has dark circles

under her eyes.

Janet

Posted July 15, 2004 · July 15, 2004

In a message dated 7/15/2004 11:14:30 PM Eastern Daylight Time,

amyjo4181@... writes:

I was told that ' dark circles were a combination of constant

allergies and eye infections.

Yeah me too. Brittany doesn't have allergies. She does get eye infections

but, she had the circles LONG before the eye infections came.

Janet

Posted July 15, 2004 · July 15, 2004

yep we are on the bottle too. I think probably until he is 12 LOL... the doctor

said kids neocate are the hardest to break from the bottle because of all the

allergies, but when they drink out of the bottle they hardly taste it,, Conan

has big hazel puppy dog eyes too. you have your hands full, I had given up my

job as a psychotherapist, until things get managable.. I am curious about all

the labs, he just got the prevnar again..... Conanhas a problem getting blood,

because of all the workups his veins collapse... anethesia had to try to find a

vein when he had roto virus,,, is nick sick now that it is summer,,, conan is

healthy except for the food thing. not sick for a while...

Re: new member

Conan, didn't gain any weight for 6 months then they gave him polycose, and

doubled his formula scoops to 10-1/2. I also gave him donuts that I made at

home, and he gained 2 lb in two months,,, but started vomiting... something in

the donuts batter..We have a 10 year old daughter who is the greatest kid.. A

big help, sweet loves horseback riding... I myself am a city girl... COnan is

the most well behaved kid I've seen.. quiet, polite, he has a great energy about

him.. good karma and aura.. I was never into stuff like that but it was

apparent to me and others right away, he was different, in a great way.. How

about nick, he must be extraordinary. We see an allergist, GI, and now

immunologist, although we need a referal to the ENT. Do you have other kids? I

hope also hope this is transient.. how do they test for the vaccine

insufficiency? and do you notice that he is shy, especially with others..

Posted July 16, 2004 · July 16, 2004

It's funny, because that describes my son exactly. He is now 9, continues to be

thin, pale, and has dark circles under his eyes. I thought he inherited that

from me-the dark circles. When he was getting diagnosed, and was very sick, his

skin was waxy, it was scary, now he is just pale.

Temme mom to Hunter-Cvid

Re: new member

> Hmm, I have a question? How many kids are thin, pale, and have

dark circles

> under their eyes?

> Britt is age 13, about 5 " 4 weighs 85 lbs, very pale and has dark

circles

> under her eyes.

>

> Janet

Zachary is pale, sometimes more gray then pale, and also has dark

circles-and very veiny skin around the eyes. His eyes definately

sink in alot when he isn't feeling well. I sometimes get the comment

that he must have horrible allergies- which all the testing(skin and

RAST) has always been negative too, and he is very thin. Each time

we take him to see a new dr, we always seem to end up screening for

leukemia due to his horrible bruising problems and how pale he is.

I've seen him look good just a few times, one being when he has a

good fluid level after getting IV fluids, and a couple of times

after IVIG-but it usually wears off quickly.~MG & Zachary-IgG total

deficiency,IgG subclass 1 & 4 deficiency, IgA Deficiency, Antibody

Dysfunction,GERD,Asthma and quite a few other chronic problems

Posted July 16, 2004 · July 16, 2004

My has those same dark circles under his eyes. Right now, he is tanned

from the sun a bit and has lost his pallor some, but he is getting thinner as a

result of all the diarrhea. His tube feeds are finally stopping that weight

loss. He is 20 mos and about 31 in tall and 24 lbs. As of yet, no treatment or

dx has made the dark circles go away. That is interesting.......

Melody

Re: new member

In a message dated 7/15/2004 4:27:42 PM Eastern Daylight Time,

amyjo4181@...<mailto:amyjo4181@...> writes:

He will be 19 months old next week and he is about 23 to 24 lbs and 32.5

inches. is very pale and has huge dark circles under his eyes.

Hmm, I have a question? How many kids are thin, pale, and have dark circles

under their eyes?

Britt is age 13, about 5 " 4 weighs 85 lbs, very pale and has dark circles

under her eyes.

Janet

Posted July 19, 2004 · July 19, 2004

Welcome B. Stutzman.

Where in NY are you?

We have other members from NY on the forum.

Yes can come in different degrees. So do the genetic fever disorders.

fevers can run high and the intensity of the disorder can change over

time.

There are children who outgrow this without event we are told.

Some positive experiences can be read in the archives.

The most important thing to do is to make sure when a child has continuous

periodic fevers... that they do not have the genetic disorders... or another

disorder which might present with fevers. Once that is done, kids are

usually labeled with .

We have some children within this group who were labeled as or

possible and later when genetic studies done... had mutations for

other disorders.

God Bless,

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

Posted July 19, 2004 · July 19, 2004

Welcome B. Stutzman.

Where in NY are you?

We have other members from NY on the forum.

Yes can come in different degrees. So do the genetic fever disorders.

fevers can run high and the intensity of the disorder can change over

time.

There are children who outgrow this without event we are told.

Some positive experiences can be read in the archives.

The most important thing to do is to make sure when a child has continuous

periodic fevers... that they do not have the genetic disorders... or another

disorder which might present with fevers. Once that is done, kids are

usually labeled with .

We have some children within this group who were labeled as or

possible and later when genetic studies done... had mutations for

other disorders.

God Bless,

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

Posted July 24, 2004 · July 24, 2004

Ashton will be starting 6th grade this year. She is still staying in a very

small private school setting. They are great about her problems. She carries

hand cleaner with her, is allowed to keep a water bottle at her desk so she can

stay hydrated. I teach her at home when she is sick. She is a real trooper.

She doesn't want to get behind on her work when she is sick.

I will ask the immunologist about the appetite stimulant. She eats very

healthy, she just doen't put on weight. He thinks that she will once the IVIG

kicks

in and her body quits focusing on fighting infection. She actually has so

much more energy now. She just got over another infection, but is doing good for

the moment.

L.

Posted July 24, 2004 · July 24, 2004

Thanks Dale. I will write my list. My nerves are shot. My exzema is acting

up, the worst is has ever been. Deep breaths.

She does eat healthy. She eats so healthy it is scary. She makes sure she has

the right amount of milk (lactose free), fruits, veggies, meats, etc. She

does have asthma and is on Advair 250 bid, Xopenex bid, Singulair 5mg, and

Maxair prn. I know that may speed up her metabolism. She does get treats. I am

or

was, thin. I didn't gain much until recently, and I am 38 now. I think it just

makes them nervous because if she gets sick.......

She does not have stomach problems. She started drinking lactose free milk

and that stopped her digestion problems. I am lactose intolerant and so is her

little sister.

Speaking of the little sister, the pediatrician wants her to be tested for

PID's too.

Ashton has CVID. Her sister was very sick as an infant. She had digestive

problems, anemia, kidney problems, respiratory and ear problems. She seems so

much stronger than her sister, but she is bigger. She can shake her infections

with a round or two of ABX unlike Ashton. Ashton would be on antibiotics for

months and still be sick.

Should she be tested?

L.

Posted July 24, 2004 · July 24, 2004

- definitely stick with the rate that you're at. If it's worked well

so far and it is a decently quick rate then stay. The staff just wants to

get done quicker and that's not advocating for you but for them. My

daughter turns 12 in November and is just slightly taller than your's.

She's my non-PID kid. So I think height wise she's doing good. They've

predicted will be around 5'9 " . Weight wise I could see where tall and

lanky would show up alot more in her. I will say that alot of literature

shows that IVIG can sometimes take from 6 months to a year to show benefit

so you're off to a good start but may not have hit the benefits yet. Have

you tried asking about an appetite stimulant? I don't usually mention these

but last year our oldest was dropping weight (not medically related, more

stress related). We were given a prescription for Periactin (also known as

a headache med). It helped alot and she only needed it for about 4-5

months. This got her through her " stress " period and she started back to a

decent routine of eating on her own. If you used this until your IVIG

benefits kicked in then maybe that would buy you some weight. Just a

thought. Will Ashton be starting 5th or 6th?

Ursula Holleman

mom to (11 yrs old) and Macey (9 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

Posted July 24, 2004 · July 24, 2004

from Dale, Mom to Katy, CVID, age 20

, Katy was at her sickest and undiagnosed at age 11. When we

started IVIG at 13 she was just skin and bones. After a year of IVIG,

she began to gain weight gradually -- now at age 20 -- she wishes she

was skinny!!! She has developed perfectly normal curves! She's still

short 5'2 " but looks very healthy and sturdy -- I never expected her to

live this long -- let alone look this healthy and be this healthy. Give

the IVIG time to get into her system and start making a difference. If

she's been properly diagnosed -- then the IVIG will truly help!!!! It

may help you to sit down and write out your concerns at this point --

then hide that list away and don't look at it for one year. In one

year, pull out the list and see if you can see progress. That really

helped me to put a finger on how much progress she was making. Katy

continued to improve with IVIG for about 3 years until she leveled off

at her current health.

Now, on the flip side -- does she eat healthily? Are there digestion

problems? Seems like a lot of people on the list have a variety of

intestinal problems. Katy did, too, -- but with IVIG, that has come

under control. One of the things that I admired about Katy's

pediatrician is that she would check out other problems, too. She said

that it was really easy to say " Oh, that's probably her PID, " and ignore

other problems. When in fact she was entitled to have multiple

problems! As it was, everything so far has been related to the PID --

the muscle aches, the fatigue, the mal-digestion and chronic diarrhea,

the headaches, etc. When we tried to treat those things we got no

where -- when we treated the PID, all of those came under control -- not

gone -- just manageable.

Hope that helps -- hang in there -- it's a tough age anyway with puberty

just around the corner and so many changes happening all at once. Hang

in there -- God will guide you. And don't forget to take time for

!

Oh, and Katy was also porcelain white -- until the last few years. Now,

she can actually keep a tan for a while, but in the winter, she'll go

back to pure white.

In His service,

Dale

Nanashmar@... wrote:

>We have all been worried about her growth and lack

>of weight gain. She still is in a booster seat. She has only been receiving the

>IVIG since March of this year.

> I pray for all the children. It has me a nervous wreck.

> Lloyd

>

Posted July 24, 2004 · July 24, 2004

,

I want to second Dale's story. Rebekah had been on IVIG for at least a year

before we could see real and consistent improvement in her health. It was a

long wait for two scared parents, though!

Pam

wife to (17 years)

mother to , 10, Hannah, 8, Rebekah, 4, and Leah, 3

Posted July 24, 2004 · July 24, 2004

Hi ,

here, My daughter is also on the thin and small side. she is

almost 9, at the end of August, and is 4 foot 3 inches and 50 lbs, she is very

thin at the moment. She has started IVIG in May for a new diagnosis of CVID,

before that she was Sel. IgA def, she also has asthma and GERD. I look at all

her friends and they have all outgrown her a lot this past year. She has always

been one of the smallest in her class, a lot of the K-2 kids are bigger than

her, she also looks very frail. Anyway we have seen some improvement already

from the IVIG, she has less fatigue, less infections and does eat better, this

is only for 3 weeks, that last week before her next infusion she is back to her

normal, tired and not feeling well self, last time she ended up with sinusitis

and bronchitis that last week. But we are hopeful with the improvement we see.

Her infusions last 4-5 hours and that is in hospital as our insurance company

won't pay any other way. I don't really mind, we do reading, school work and

just have a family day, her Dad works 1/2 days that day so he comes to the

hospital after work as well. We haven't had any problems with the nurses, they

do try to increase the rate slowly but she usually can't tolerate much more than

40-50 cc/hr. We pre treat with Tylenol and Valium( otherwise she is a bear about

the IV). I hope things work out well for you.

mom to CVID, asthma, GERD

Re: new member

Janet,

My daughter, Ashton, turned 11 on the 15th. She is 4' 10.5'' and 67

pounds. She is very thin, has the circles under the eyes, but has olive skin.

You can see it in her skin when she is sick. She turns a grey color. There is

not an ounce of fat on her body. She eats very well. She gets IVIG every 3

weeks. It takes 3.75 hours for the infusion. They keep asking about increasing

the

rate, and the doctor says no. She doesn't have any side effects. We pretreat

with tylenol and benedryl. We have all been worried about her growth and lack

of weight gain. She still is in a booster seat. She has only been receiving

the

IVIG since March of this year.

I pray for all the children. It has me a nervous wreck.

Lloyd

Posted July 24, 2004 · July 24, 2004

In a message dated 7/24/2004 12:39:30 PM Eastern Daylight Time,

Nanashmar@... writes:

I pray for all the children. It has me a nervous wreck.

O , me too!!!!!!!!!!

Janet, mom to Brittany, CVID, age 13

Posted July 24, 2004 · July 24, 2004

In a message dated 7/24/2004 12:39:12 PM Eastern Daylight Time,

uahollem1@... writes:

I don't usually mention these

but last year our oldest was dropping weight (not medically related, more

stress related). We were given a prescription for Periactin (also known as

a headache med).

Ursula,

I am going to ask for this for Brittany. She doesn't eat well at all, never

did. Stomach hurts her a lot. This sounds good because she has headaches a lot

also.

I am also tired of people asking if she is anorexic. She knows she is thin.

She is just sick! It makes me so mad. She has never had a big appetite, even as

a baby.

Janet, mom to Brittany, CVID, age 13

Posted July 24, 2004 · July 24, 2004

In a message dated 7/24/2004 1:00:00 PM Eastern Daylight Time, dale@...

writes:

Oh, and Katy was also porcelain white -- until the last few years. Now,

she can actually keep a tan for a while, but in the winter, she'll go

back to pure white.

Dale, is there any reason why some of our kids are so white. Britt also gets

teased about this all the time, some have even called her Casper! She is pure

white with dark circles under her eyes. Some days the circles are darker than

others. It looks sometimes as if she has two black eyes.

Janet, mom to Brittany, CVID, age 13

Posted July 24, 2004 · July 24, 2004

In a message dated 7/24/2004 1:16:21 PM Eastern Daylight Time,

pmork@... writes:

I want to second Dale's story. Rebekah had been on IVIG for at least a year

before we could see real and consistent improvement in her health.

Do you think that the sicker they are the longer IVIG takes to start working?

Janet, mom to Brittany, CVID, age 13

Posted July 24, 2004 · July 24, 2004

is allowed to keep a water bottle at her desk so she can

stay hydrated.

Thats another thing. Brittany gets dehydrated so easy. Boy, I'm on a roll

tonight, sorry. I just wish I could get a DR. sit and just chat with me and

answer ALL my questions. But, I know he is too busy.

Janet,mom to Brittany, CVID, age 13

Janet

Posted July 24, 2004 · July 24, 2004

My son , who is 20 mos, takes Periactin and it is basically the only

thing that encourages him to eat ANYTHING by mouth at all! It has worked

wonders for him! Before all this chronic diarrhea and weight loss forced his

overnight feeds back up to 8 hrs, he was down to 4 hrs and ready to wean off if

possible. He was eating enough by mouth to make that possible. It is

definitely something to look into if your child is struggling with weight gain.

Melody, mom to 20 mo old

Re: new member

In a message dated 7/24/2004 12:39:12 PM Eastern Daylight Time,

uahollem1@... writes:

I don't usually mention these

but last year our oldest was dropping weight (not medically related, more

stress related). We were given a prescription for Periactin (also known as

a headache med).

Ursula,

I am going to ask for this for Brittany. She doesn't eat well at all, never

did. Stomach hurts her a lot. This sounds good because she has headaches a lot

also.

I am also tired of people asking if she is anorexic. She knows she is thin.

She is just sick! It makes me so mad. She has never had a big appetite, even

as

a baby.

Janet, mom to Brittany, CVID, age 13

Posted July 24, 2004 · July 24, 2004

Melody - how long has he been on the Periactin? Does he take breaks from

using it or has he been on it continuously? We have it on hand if

needs it again but I'm scared that she would develop some type of

dependency.

Ursula Holleman

mom to (11 yrs old) and Macey (9 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

Posted July 25, 2004 · July 25, 2004

Ashton stays dehydrated. We force her to drink. She gets muscle cramps often

too.

I know what you mean about wanting to talk with a doctor about all these

things the children seem to have in common. The only reason Ashton has any color

is because her father has such olive skin (dark German with blonde hair). Her

eyes are dark circles though. When she is sick she looks terrible, gray really.

The immunologist was asking us about family history of autoimmune disorders.

I told him that her grandfather, on her fathers side, died from myasthenia

gravis. (I think I spelled that correctly) Is that common for other families to

have histories of autoimmune disorders?

L

Mom to Ashton 11 CIVD & Asthma Marina 8 Asthma both lactose intolerant

Posted July 25, 2004 · July 25, 2004

In a message dated 7/25/04 12:17:03 PM Pacific Daylight Time,

Nanashmar@... writes:

Is that common for other families to

have histories of autoimmune disorders?

,

I don't know how common it is, that's a good question. I do know of Moms,

Dads and other relatives on this list who have health issues. I have two

autoimmune diseases--so you asked a great question!!

Sandi, Mom to , age 11. Immune deficiency, Tetrology of Fallot,

Pulmonary valve transplant, Mitral valve stenosis, severe allergies, chronic

ear, nose

and throat infections, asthma and Carnitine deficiency. Suspected Di

Syndrome.

Posted July 25, 2004 · July 25, 2004

Welcome!

Your son sounds similar to mine (as much as " patients can be

similar, anyway). My son just turned 4 in June. His first fever

was 2 weeks after his 2nd birthday and for 8 months, he cycled

almost exactly 3 weeks to the hour. We started planning vacations

etc. around when his fevers would hit because they were extremely

predictable.

So far, his episodes have always been mild compared to a lot of what

I hear on this board. He rarely goes above 102; each episode

usually lasts 2-3 days; On occassion he will get 1 mouth ulcer.

And sometimes he tells me that his knees or his head hurt.

After 8 months of predictable fevers, they started getting further

and further apart. This spring we went as long as 10 weeks between

fevers. But then this summer, we have been all over the place.

There were several 3 week cycles, a 2week cycle with a very mild

episode, and now we are going into week 6 of no fever.

We went through the emotional roller coaster and we probably aren't

completely done with it. But we see an excellent ID doctor who

assures us that if he had any of the " really scary " diseases, we

wouldn't see him thrive as he is thriving. He has always been at

the top of the growth charts, is incredibly smart, and VERY (too)

active. So while we continue to try and get an accurate diagnosis

(there are things we haven't truly ruled out), on a day-to-day

basis, we work under the assumption that he will out grow it.

We have also been told by this doctor that every child he has

worked with (and as an ID specialist, that is quite a few) has

outgrown the fevers by 1st grade if not sooner. I know that there

are many on this board with kids older than that, but I choose

to hold on to this statistic for the time being. Because it helps

me to think that it will end.

For me personally, I try to take an assertive but relaxed approach.

Making sure I educate myself and push the doctors, but emotionally

trying to be relaxed knowing that statistics are on my side.

Welcome!

- Gwen

> my husband and i are new to this forum--i have just realized in

the

> past few days that my sons fevers are following a semi-regular

> course. i have gone from " gee, it seems like one week of every

> month " to " this really IS one week of every month " . he stated a

> fever on my birthday in may (not his first)but that made the date

> stick in my head and then i started marking the dates on the

> calandar. i spent about an hour and a half reding posts to this

> site last night and i have myself good and worked up (i am 35

weeks

> pregnant and that does not help my state of mind). these are the

> things that i have thought to ask the forum so far:

> HE IS 2YRS. 4MOS. FEVERS STATED IN DECEMBER 03--HE IS VERY BIG,

> STRONG, HEALTHY, SMART, OUTGOING AND LIVELY. ZERO OTHER HEALTH

> PROBLEMS

> 1. my sons case seems to be a milder version-no symptoms other

than

> fever and some sore throat (not terrible)but fevers are very high

> 101-105 and last 4-6 days. DOES IT SEEM TO BE THE CASE THAT THAT

IS

> THE WAY THINGS WILL CONTINUE OR DOES THIS CONDITION REGULARLY

> WORSEN/CHANGE AS IT GOES ALONG?

>

> 2.last night i mostly read about dreadful cases (so much pain for

> such little bodies)ARE THERE ANY FOLKS OUT THERE WHO HAD MILDER

> CASES THAT SIMPLY WENT AWAY ON THEIR OWN? dOES THAT EVER HAPPEN?

> i suppose those are not the people who would be involved and still

> posting but perhaps someone has that kind of info for me?

>

> we have an appointment to see pediatrician in the morning (this is

> the first time he will be seen for this--i have a feeling that

this

> doc does not know about but i am hoping that he will be

> willing to use his resources and send us in the right direction.

> i'd appreciate any feedback

>

> b.stutzman

> upstate new york

Posted July 25, 2004 · July 25, 2004