Uncertainty

[Guest guest]

I posted before about my daughter Jazzy, 22 months fevering for about

6 months that I have been documenting a little before than but I am

not sure if it counts because i don't really think it was ever on a

cycle, just a fever with no cause. I am at that point where I am

thinking back and trying to figure out whether or not she has the

. We saw the ID Doc at Seattle Childrens last fri. He was amazed

how much I knew about the disorder, THANK YOU EVERYONE:D, and how much

my pediatrician knew being a Navy Doctor and all. He took blood for

the genetic disorders, and gave me a prescription for the steroid. He

said he thinks it is based on the cycles lymph nodes etc. But I

still dont know if I am sure, she had a fever outside of cycle 12 days

after her cycle fever, Sept 9, than Sept 21 that one was surrounded by

runny nose cough, cold symptoms first time in a long time, but still.

I thought most children don't get sick in between episodes. Than

she is due for an episode now, but she isn't getting it yet, I am

happy about that do not get me wrong but wondering if maybe i am

confused. WHen they gave her the steroid with the fever on the 21 she

vomited it up within 15 min of receiving it. So now we are going to

try it again if the next fever is a typical of , no other

symptoms and I am to let both the ID and my pediatrician know what

happens. Her last fever came 3 days after immunizations. The other

thing is she doesn't seem to get mouth sores but definitely throat

pain. But I dont really get to look into her throat much she isn't

very cooperative for that. Deep down i am sure something isn't right

but at the same time I wonder. Neither doctor suggested blood work

during an episode it seems more like treat it and see what happens. on

the 23 I can call and get results of the DNA testing. I think I will

feel better when i get those back neg. They are checking for FMF

because my hubby is morrocon and HIDS because we both have some

French. and TRAPS because well why not, lol. I feel somewhat rested

and relieved with her not fevering for a long break I feel empowered.

I guess thats why im doubting now she has the disorder, than again I

cannot be certain she wont get her fever tomorrow or the day after.

She is still undergoing bi-weekly blood draws waiting on a fever to

check the white count levels, and I wonder if I started all this and

poor little girl never needed to go through it, but I know she has

fevered on a cycle with no cause, the last two I documented the temp

and hours and all. I guess im just venting my uncertainty, I dont get

much time to post because I have the kids 16 months apart and with

Hubby gone im not all there upstairs lol. I just do not know what to

think. part of me is hopeful she will get the fever so I can have an

answer because the white count things and the steroid thing all

dependent on the fever. another part of me is like if she never gets a

fever again I can ignore this ever happened, oh yea forgot to mention

she has been seeing a chiropractor, can that make a difference? I

started taking her because they see my son since he had a shoulder

dystocia at birth they helped him stop being colicky and when they

heard about Jazzys fevers well they said they would like to see her

and I thought well hey cant hurt anything they made such a huge

difference in my son, and I know that this site doesnt post about

those options I just wonder. Based on what I am telling everyone, I

know not everyone is a doctor, what do you think? I should just

believe what the ID thinks but I dont want to. Maybe thats the problem

I know its not a death sentence I just dont want my daughter to suffer

and I dont want to have to watch it or deal with it. Am I selfish? If

anyone can understand my feeling I am sure its someone int his group.

Thank you for reading.

Good Luck to all

Navy Wife-mom OF Jazzy 22 months fevering 6 months, And 6 Months

no fevers yet

[Guest guest]

,

No, you are not selfish, you are a loving mom who doesn't want her daughter to

suffer.  No, this is not a death sentence and we all know there are many, many

worse things then . We see a hematologist/oncologist and going there you

see a lot.  They always love seeing Landon because he is their  " healthy guy " as

they put it.  With that said we all also know the toll takes on our

children.  Getting answers is hard especially since even the diagnosis of

is one of default.  I wish you luck and hope you can find answers.  Keep your

chin up!

Jackie mom to Landon 5 years old, fevering since a baby, T & A on 9/8 skipped two

fevers so far : )

8 years old, healthy no fevers