Long vent about DD's condition

[meeskamouska]

Hi---well I am here to vent about my DD condition...first off let me say that I know this condition isn't as major as soem of the ones on this board...but it has really throw our lives around.

My daughter is 3 and ws recently diagnosed with Unspecified Fever Syndrome....never heard if it....niether have most DRs.

Well, my daughter gets what we used to call "mystery fevers"....high fever lastign days with no other sympotoms. They would often reach 105.7 (at the highest) while rotating tylenol and motrin. Nobody could give us an answer, it's viral. blah, blah, blah.

Finally, we were referred to an Infectious Disease specialist at CookChildren's Hospital in Ft Worth. He was able to give us a priliminary diagnosis of this fever symdrome....there are five types and we are now trying to discover which one she is suffering with.

He sent us home with a steriod to try and the onset of fever and instructions to keep a fever diary. The steriod has been working great....knocking out her fevers from lasting a week to only four hours. The only down side is that they are now coming more frequently....every couple of weeks...and more sparatic.

They always seem to come at the most inopppurtune times...I have missed a ton of school this semester!!

Today she is having an episode and I am feeling sorry for myself....I know I should be thankful that it isn't more serious....I just get so angry that my otherwise healthy child has to suffer with these ridculously confusing fevers!!!

Thanks for letting me vent!!!!!!!!

Tera

 

[Mackey Mouse]

Oh Tera, hugs to you......I cannot imagine the frustration you are feeling over your daughter's condition. No, I have never heard of this fever syndrome, they do not know what causes it or why?

When children are little and have high fevers, it is very scary. I speak from experience on that, but nothing like what you are talking about here.

At least it sounds to me that Cook Children's Hospital knows what it is and now are trying to isolate it for treatment.. I hope, I hope. Please know that any situation where we need some compassion is as important as any other situation. We are here for you, come and vent anytime you want, but also please do post about the progress.

Hugs again, you are doing all the right things, hopefully they will give you some answers soon.

 

[meeskamouska]

Mackey Mouse,

They classify this condition as an auto-inflamitory disease. Not quite auto-immune disease no quite an inflammitory disease. They are unsure of the exact cause of this condition and some of the conditions have genetic markers. There is research going on about these condition at the National lInsitute of Health...so everyday we are learning something new.

We are just in the priliminary stages of diagnosis and the one's that fit her symptoms best are PFAPA(Periodic fever, Aphthous-stomatitis, Pharyngitis, Adenitis) , TRAPS (Tumor Necrosis Factor Receptor Associated Periodic Syndrome), and HIDS (Hyperimmunoglobulin D syndrome) .

Her fevers were coming every 28 days liek clockwork before beginning the meds and now the frustration isn't the length of fever but the never knowing when one will pop up!!!

Thanks for the kind words and encouragement!!!
-Tera

 

[Mackey Mouse]

Anytime, make sure you take some time for you too...

Caretakers really get down as well.. right now, I am exhausted and my back hurts, but then I think hey at least I am going through what my husband is so I pull myself together.. I do take time for me.. even if it is just going to the gym for an hour, I do it..

 

[safetymom]

I had that problem when I first got married. I went to the doctor and they couldn't come up with anything. Their suggestion was for me to get pregnant, that might cure it. I didn't take their advice for a few years. It eventually went away.

Meeska, be sure to take time for yourself. When everyone is looking to you for help you have to be sure to take care of yourself at the same time.

 

[luvsmickeymouse]

I want to welcome you here as well. *HUGS* to you (my smilies don't work). Its ok to vent, write, listen, anything, I feel that we are all here to listen to each other. Sometimes its the best thing, to have a place to vent.

 

[Goofyluver]

You know that you have people around you that love and support you. I always say that if my DS had been born missing a pinky I would have mourned just like I mourned (and still do) for his neurologic condition.

This is new for you. Later, and no one knows how much later, you will look back and see the gifts that have come from your situation.

My gifts? I learned to slow down and love. Love cures all...I know it sounds stupid, but it really does. When you don't know what else to do with your situation, concentrate on being a wonderful mother...which you already are. Enjoy the good and wonderful times and deal with the bad times as they come. The bad times will be there sometimes. If you get down on yourself all the time, then you won't be able to enjoy the good times...like a trip to DW!!!

My DS has inspired all of the major journeys that I have been on in life. He is my angel. Without the struggle, I wouldn't be the person I am today. It is the same for you. The way you choose to deal with your situation is up to you...nobody else. Life's little interuptions (or big interruptions) are often meant to be. They make us slow down and pay attention.

Like I said...someday you'll look back and understand your message.

 

[Christine]

Oh, I'm so sorry to hear about your daughter. That must be so frustrating (and scary too!). With regards to medicine and health, those are probably the *only* areas where you really don't want to be unique, you know?

I hope they get to the bottom of this soon.