Questions please answer

Dixiana - posted on 03/03/2014 ( 13 moms have responded )

44

0

1

I want to hear your story of how you found out your child had nf1 i have questions?!

13 Comments

View replies by

Dixiana - posted on 03/04/2014

44

0

1

Btw my son was born premature 4 pounds barely living but he survived he fought for his life i was always in the hospital till he was 2 and he was left nicu for a month after he was born also he was born feet problems had get surgery but luckily me taking care of him putting braces following doctors appt and instructions he didnt need it now he walks find hes feet ate fine then at 6 month he recieved therapies to play speak n behavior all due too premature now im finding out many things also may have to do with NF1 i just didnt know then... But now you see y it hurts me hes been through aloot n now this!

Dixiana - posted on 03/04/2014

44

0

1

Yes thats why im this way just barely learning about it... But i feel all kids have this r special n so strong for going through this n still having a smile in their face one day at a time yes what i should do yes done dats r good other not so great... Thanks for everything and very true poem... You are very strong mom n a good one i can tell...

Celeste - posted on 03/04/2014

3,072

30

873

Such a great poem and so true.


It is overwhelming at first. It does get better. I feel that the more educated I am, I don't feel so overwhelmed. All I can do is just take it one day at a time, some days are crappy other days are good. Hang in there

Dixiana - posted on 03/04/2014

44

0

1

My poem for this : My son has this illness
that He will suffered from only god knows how long
and I don't know how
but I've got to find a way to stay strong,
I wish It could be over really quick
because it's making me go insane
and it hurts when people know how it feels or what i think
It just causes me n him so much pain
I just wish I could stay strong
It really bothers me
because this isnt the flu where i know what's wrong
I'm telling myself not to cry
but it's so hard to try

As the days go by
I feel worse and worse
so many things have gone wrong
and it's just so hard to stay strong
I've got to cry
so as the tears run down my eyes
I realized I don't have the strength
to stay strong

Dixiana - posted on 03/04/2014

44

0

1

Yes difficult NF1 but thank you for answering my questions im more calmer now yet im very over whelmed over this n sensitive but i will give teachers info on it...

Celeste - posted on 03/04/2014

3,072

30

873

ADHD is very common in NF1. They also have ADHD.

I printed info about and gave it to my kids' teachers. Google NF1 and learning and you should find some stuff on it.

Dixiana - posted on 03/04/2014

44

0

1

Yes my son now has adhd with NF1 is their any advice you can tell me so i can tell my sons teacher with learning difficulty? Wow very good for your husband you must be proud of him.. Im very happy your daughter doing great... Im happy you wrote me since this is new to me i just like to know my child is not alone u just wish he understood that :)

Celeste - posted on 03/04/2014

3,072

30

873

Yeah, once in awhile. He struggled in school because of his learning difficulties (common with NF1), so that was hard for him. He went into the Army, went to college, and excelled. He is now a special ed teacher.

With my my daughter, when they found her first tumor, she had MRI's twice a month. They were stable and so she got them once a year and now she doesn't get any.

Yes, people with NF1 can lead fairly normal lives.

Dixiana - posted on 03/04/2014

44

0

1

Yes doctors says maybe hes the first case in my family and im glad your kids are doing well and he'll be getting MRI 2 x a year check tumor on his brain. But since your husband had this did he feel sad when he was younger my son feel like hes not normal n that breaks my heart! But their is a chance kids with nf1 can live healthy life and not so much test n doc visit? For his growing to stop his medication is 3 shots daily and other option is 1 month shot but that shot never been tested on a child they dont know side affects this all seems like a nightmare...

Celeste - posted on 03/04/2014

3,072

30

873

CAL is short for cafe au lait

So sorry your son is going through all of this. About 50% of cases are spontaneous mutations.

NF1 is a difficult disorder because of all the what ifs. My daughter has a tumor on her optic nerve and on her tongue. My son has a few fibromas on his body. They are doing well despite the tumors.

Most tumors are benign, so if he gets them, just make sure to keep an eye on it

Dixiana - posted on 03/03/2014

44

0

1

My son has cafe au laits since he was 3 month n toddler he started getting more but never knew of his condition till last summer he went threw puberty at age 5 this October he had many tests done on him and the doctors told me he had nf1 he had surgery put implant on so he can stop makeing hormones to hit puberty i then thought it was all over till this feb he had another test because he wont stop growing and it may affect his health the question i have is none of my family not my husband has this why my son? When you knew of this how you cope because i get very sad and depressed i wanted to hear other parents stories! Also my son has no tumor usually nf1 causes tumor and then kids have high hormones cause early puberty and growth but my son doesn't have any im scared he will :(

Celeste - posted on 03/03/2014

3,072

30

873

Two of my kids have NF1. My husband has NF1 so we knew there was a chance they could inherit it. We noticed the cafe au laits when they were babies. Because of the family history and the CAL's, they were diagnosed with NF1. What sort of questions do you have?

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms