Hi..I'm Beth

[Guest guest]

Hello everyone! I am very excited to be joining your

group. My name is Beth Henson and I am from St.

Louis, Missouri. I have two children: who is

almost 3years old, and who is 8 months. I also

have a very loving and supportive husband named .

The reason for joining this group is because of

concerns regarding my daughter . She has been

having fevers for seven months now that occur every

3-4 weeks and last from 4-5 days. The highest her

temp got was 104.5. When she is feverish she thrashes

in her sleep and calls out, alot of times screaming

and crying. She says her whole body hurts her and I

can't even touch her. She also says that her stomach

hurts her " so bad " . I give her Children's Motrin and

it will break the fever, but an hour later it is back.

When the fevers are gone, so are the symptoms. The

only thing that I notice that are different about

's fevers compared to the other stories I have

read is that only gets her fevers at night.

They show up at about 6-7 pm and last till about 6 am.

But even though she is not feverish during the day

she is still not herself..meaning her appetite is off

and she is very tired and has a kind of glassy-eyed

look. We have been trying to figure out what is

causing these problems for about 2 months now. We

have had several blood tests that show that her sed

rate and IGD is elevated and that she has 50%

monocytes in her bloodstream. She also tested

positive for ANA (AntiNuclear Antibodies..Lupus). We

are awaiting an appointment with a Pediatric

Rhumetologist. However, I have Lupus, so I know that

if you have a parent with Lupus you can have a

positive ANA and not have Lupus. Also her Liver is

enlarged. I just started found out about

yesterday through internet research, and have been

trying to find any help and advice that I can. I have

a WONDERFUL Pediatrician named Dr. Gerald Lowther and

he has been a great help. I emailed him some info on

yesterday evening, but have not heard back yet.

I am so happy to have found this site and hope that I

can figure out if I am on the right track or not with

my research. I thank you for taking the time to read

this and I hope to get to know each and every one of

you. Please forgive me if I am slow to responding to

emails..I am very busy and often don't have time to

check, but I will try my best! Thanks again and take

care!

Beth Henson

[Guest guest]

Hi Beth!!!

Wow, you and I have a few things in common. I have hung ot here because I

dearly respect Fran (moderator) and I love the people in this group. My son

Mathieu is 23 months old and started his fevers when he was about 12 months

old. He hasn't has a high fever since August, but he does have chronic low

grades. Mathieu also gets weak and tired acting even prior to fevers coming

on. There are not cold symtpoms but he has had a history of diarrhea,

enlarged liver and spleen, and most recently a rash, and a high WBC count in

his urine. His urine has alwasy smelled funny to me (even though he drinks

alot too). I have had my own situation that has come on the past few years

but have ignored. My RH factor came back positive, and like you I know that

it can be a false positive as well. He has had a positive ANA, but they

really didn't think much of it. They actually thought it was possible he

had Crohn's, but when I called this last time for an appointment they

mentioned systemic Rheumatoid Arthritis (RA).

This is a wonderful group because even though Mathieu doesn't have ,

children with fevers are difficult to deal with (no matter what the cause)

and they all have mastered the " art of the fever " ..LOL Anyway If you want

a full history on him I can send it, as he was FTT at 5 months and still has

very slow growth issues inspite of his appetite. They still can't say for

sure what he does have, but they all know its something. For now it hasn't

been serious enough to lead to major problems, but the symptoms have changed

alot over these past few months. From what I have gathered recently the

Systemic JRA starts out with fevers and organs can become enlarged followed

by rashes and then joint swelling. Some get a rash and then the joint

involvmebt followes, but it can take a while to diagnose becasue the pattern

doesn't follow typical RA. I have an appointmnet with his regular Ped today

to discuss my recent results to see if RA is a possibility for him or

another in the family of Rheumatology.

I hope finds diagnosis and treatment in a rsoable time. These things

take alot of time to diagnose. Hang in there!!! Remember we are here for

you.

Hope to hear form you again.

5 1/2 yrs old

Mathieu Wow he will be 2 yrs old next month (January 3rd) 21# and 30 "

Hello everyone! I am very excited to be joining your

group. My name is Beth Henson and I am from St.

Louis, Missouri. I have two children: who is

almost 3years old, and who is 8 months. I also

have a very loving and supportive husband named .

The reason for joining this group is because of

concerns regarding my daughter . She has been

having fevers for seven months now that occur every

3-4 weeks and last from 4-5 days. The highest her

temp got was 104.5. When she is feverish she thrashes

in her sleep and calls out, alot of times screaming

and crying. She says her whole body hurts her and I

can't even touch her. She also says that her stomach

hurts her " so bad " . I give her Children's Motrin and

it will break the fever, but an hour later it is back.

When the fevers are gone, so are the symptoms. The

only thing that I notice that are different about

's fevers compared to the other stories I have

read is that only gets her fevers at night.

They show up at about 6-7 pm and last till about 6 am.

But even though she is not feverish during the day

she is still not herself..meaning her appetite is off

and she is very tired and has a kind of glassy-eyed

look. We have been trying to figure out what is

causing these problems for about 2 months now. We

have had several blood tests that show that her sed

rate and IGD is elevated and that she has 50%

monocytes in her bloodstream. She also tested

positive for ANA (AntiNuclear Antibodies..Lupus). We

are awaiting an appointment with a Pediatric

Rhumetologist. However, I have Lupus, so I know that

if you have a parent with Lupus you can have a

positive ANA and not have Lupus. Also her Liver is

enlarged. I just started found out about

yesterday through internet research, and have been

trying to find any help and advice that I can. I have

a WONDERFUL Pediatrician named Dr. Gerald Lowther and

he has been a great help. I emailed him some info on

yesterday evening, but have not heard back yet.

I am so happy to have found this site and hope that I

can figure out if I am on the right track or not with

my research. I thank you for taking the time to read

this and I hope to get to know each and every one of

you. Please forgive me if I am slow to responding to

emails..I am very busy and often don't have time to

check, but I will try my best! Thanks again and take

care!

Beth Henson

[Guest guest]

Hi Beth,

And welcome to our group! Your story is very familiar to me too.

Both my daughters have Hyper IgD (HIDs) a genetic fever. They

sometimes do have near normal temps doing the day, but they sky rocket

at night. Motrin and Tylenol offer little to no relief. Have you

tried the bathtub to bring down the temperature? Regular bathtub

temperature is cool enough to give them some relief.

You are now on the road to a diagnosis. I'm so glad you found a

knowledgable doctor who is willing to take tests. Like Pat, I lived

with the " it's just a virus " diagnosis for 3 years (although Pat went

through 8 years of that!) before we found our way to NIH and finally a

true diagnosis last May.

I'm very curious as to the elevated IgD result. Your doctor is

obviously onto the possibility of Hyper IgD. As far as I know, the

elevated IgD level is very specific to Hyper IgD. You may already

have your answer. Please check the very informative Files section on

this website. Another place you may want to look is the HIDS.net

website. It explains all about the condition-you may find some of it

familiar.

There are ways to control the symptoms of all the fevers - to some

extent. Every child seems to react differently to each medication.

My eldest gets relief from prednisone, although not many HIDs patients do.

Please keep us up on your story. You're on the right track-just keep

researching!

Wilke

Mom to Hana 3 and Georgia 1

Vancouver BC

> Hello everyone! I am very excited to be joining your

> group. My name is Beth Henson and I am from St.

> Louis, Missouri. I have two children: who is

> almost 3years old, and who is 8 months. I also

> have a very loving and supportive husband named .

> The reason for joining this group is because of

> concerns regarding my daughter . She has been

> having fevers for seven months now that occur every

> 3-4 weeks and last from 4-5 days. The highest her

> temp got was 104.5. When she is feverish she thrashes

> in her sleep and calls out, alot of times screaming

> and crying. She says her whole body hurts her and I

> can't even touch her. She also says that her stomach

> hurts her " so bad " . I give her Children's Motrin and

> it will break the fever, but an hour later it is back.

> When the fevers are gone, so are the symptoms. The

> only thing that I notice that are different about

> 's fevers compared to the other stories I have

> read is that only gets her fevers at night.

> They show up at about 6-7 pm and last till about 6 am.

> But even though she is not feverish during the day

> she is still not herself..meaning her appetite is off

> and she is very tired and has a kind of glassy-eyed

> look. We have been trying to figure out what is

> causing these problems for about 2 months now. We

> have had several blood tests that show that her sed

> rate and IGD is elevated and that she has 50%

> monocytes in her bloodstream. She also tested

> positive for ANA (AntiNuclear Antibodies..Lupus). We

> are awaiting an appointment with a Pediatric

> Rhumetologist. However, I have Lupus, so I know that

> if you have a parent with Lupus you can have a

> positive ANA and not have Lupus. Also her Liver is

> enlarged. I just started found out about

> yesterday through internet research, and have been

> trying to find any help and advice that I can. I have

> a WONDERFUL Pediatrician named Dr. Gerald Lowther and

> he has been a great help. I emailed him some info on

> yesterday evening, but have not heard back yet.

> I am so happy to have found this site and hope that I

> can figure out if I am on the right track or not with

> my research. I thank you for taking the time to read

> this and I hope to get to know each and every one of

> you. Please forgive me if I am slow to responding to

> emails..I am very busy and often don't have time to

> check, but I will try my best! Thanks again and take

> care!

>

> Beth Henson

[Guest guest]

Thanks to everyone for their kind words and support

for . It is SO nice to have a place to go where

people understand and can give such wonderful and

helpful advice! I feel a lot less crazy since I have

found you all. I can never find enough words to say

thank you for making me feel sane again! Sometimes I

feel all alone trying to find out what this is and

everyone tells me it is something different. I am

sure you all know that feeling. Anyway, I just got

back from the Ped's office with . We took some

more blood from poor who is " so brave " as she

puts it! We are testing again the IGG and IGD and

some others. She is not feverish right now but we are

expecting it end of this week or early next. I sat

with her doc in his office for almost 30 minutes and

discussed everything. He really has done his homework

on this and that makes me feel so much more

comfortable. We should find out results tomorrow or

the next day. We shall see. I again thank you all

for all you have done for me! You have no idea the

renewed strength I feel and the excitement that we may

be right around the corner to finding out what this

is. You all are in my daily thoughts and prayers.

Beth

Mom to 2 and 8 months