my 19 month lil girl was diegnosed with nf 1 and epilepse. we have delt with a lot of complications rainging anywhere from blood in her stools to brain tumors.she is also in therapy to get her caught up with the rest of her ago group. she is 33% delayed as of 2 months ago and they believe and she may be even more behind now then what she was. at her last at home apointment with the therapist they had discovered that her spin has a "C" shape to it. what should i be looking for and what can the dangers of her haveing this shape be? she also has bomps on her legs that have been there for almost 2 months now. is there a chance that they can be tumors caused from the nf its self? she also has been acting really differant for the last few days. when she first wakes up she is fine for about a half hour and within a half hour she is extreaming fussy. not wanting to move and wanting to sleep all the time. its not like her. dos anyone have any segustions or believe that i have something else to be worried about?
this all started when she was born she had compication with her lungs blood sugar and blood pressure along with many small this. this nerofibromatosis is genatic. so she got it from her real dad. allthough his is not as bad i do not that lil mya can probly expect it to get a hole lot worst then his becouse of the age on witch she was diognosed im just worried that there is more to come.
I'm sorry to hear your little one has such difficult conditions to deal with, A.. This is so hard on all of you.
Do keep in close contact with your doctors and specialists – they will have much better answers for you that us moms out here. NF expresses differently in every child that gets it, so even if another mom has a child with that diagnosis, there may not be much useful comparison.
I didn't know what nf 1 is and so I googled it and found this site. http://www.understandingnf1.org/id/int_id_win.html
Perhaps you've found web sites that are also helpful.
Wanting to sleep all of the time and not wanting to move could be something else. I suggest that you call her doctor and ask about it.
I know you've already responded, but do want to add a little something: regardless of what your doctors say (as in what to expect), regardless of whether or not you feel like you're being paranoid, regardless of whether or not your support group thinks you're making too much (or too little) of this.......#1 thought is that this is your child & you know when things are not right.
Please never, ever delay on contacting the doctor. Your child's needs are special & deserve the best! If you have ?s or concerns, then by all means - seek those answers - taking as much time as you need to fully understand what is going on, what could happen, & how you should respond. You're MOM....& that says it all! I truly wish you Peace. Your daughter is very lucky to have a mom like you!
There is a local support chapter for parents and children who are dealing with NF. The following is their information. Patricia Hurst is one of the main contacts. I believe they would be very helpful. My prayers are with you and your family.
MISSOURI CHAPTER
CHILDREN’S TUMOR FOUNDATION
1553 Amber Court
Arnold, MO 63010
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____@____.com
To join our mailing list, please email ____@____.com us on Facebook at: http://wwwfacebook.com/group.php?gid=131423953551788.
