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****suzymarie****
I hope you don't mind if I ask but I saw your post below replying to skin disorders. Does your son have NF? My oldest daughter has NF1 and it's always nice to meet other moms that are dealing with the same thing.
You can email me at pinkpiano222@yahoo.com if you'd like.
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Re: ****suzymarie****
Hiiii! I only check this board sporadically!. Yes, my son has NF1. My husband does too. Do you know if your daughter got it from one of you, or was it a random mutation?
I'm so glad you saw my message! We're pretty sure it was a random mutation. My husband had some tests done but nothing showed NF. We have another dd who is NF free.
Have your son or husband experienced any complications?
So far we haven't had too many issues. DD has required some physical therapy (which of course we aren't sure if that's related) and just recently (in the last year, she's 4 1/2 yrs) she's had 6 neurofibromas pop up. I've been kind of panicked about it but her drs. are pretty unconcerned. I'd like her to have another MRI just to make sure everything is ok but they don't want her to have one until there is more evidence of an issue. She hasn't had one since she was about a year old.
I'd love to hear more about your experience. NF can be so heartbreaking and I hate how there are so many unanswered questions. We do fundraising through the Children's Tumor Foundation and have made a few connections that way, but I'm always looking for other moms that can relate to dealing with NF.
My H was diagnosed at 25. He has quite a few nuerofirbromas- some tiny ones on his face, a few on his head under his hair that you don't notice, and random small ones on his body. He did have a really big one on his neck (tennis ball sized) that was sort of imbedded in his neck- that one they removed and it was not minor surgery. He has quite a cfew Cafe au lait spots too,
He also has ADD- it is super common to have learning disabilities with NF which is honestly my biggest concern with William.
According to our genetic counselor, my H would be considered to have moderate/severe NF due to the relatively large number of tumors that he has.
So far William has 2 tiny cafe au lait spots. He will be having his MRI in May. He is slightly delayed right now- he did PT and OT because he wasn't rolling (he never rolled actually). Now he is doing speech and play therapy with a early ed teacher, mostly just to keep an eye on him, not for anything specific.
Dd's neurofibromas are all on her face & under her hair. They aren't visible but if you search for them they can be felt. I suspect she may have even more that we have not discovered. She has a LOT of cafe au laits too. Those are what led me to believe she may have NF. I searched online about the cafe au laits and found the link with NF and she was diagnosed when she was 6 months old.
The learning disabilities have been a big concern for me too. So far she seems to be doing fine academically, but she's a summer birthday so we could send her to Kindergarten next year but instead we are going to wait and keep her in pre-school another year.
Does your dh have any other tumors that are causing issues? I'm so scared dd has a tumor we don't know about.
Well, he has quite a few small tumors, many of which are sort of "under his skin" .... I don't know how to say it, but they don't stick out, but if you feel the skin, you can feel there is something under there. We don't worry about them- he probably has 100 of them, we could never have them all biopsied.
He had the one on his neck removed because it was in a difficult place to biopsy, and since it was so big they were worried it could be cancerous. He also had one on his arm removed because it was really raised- like this grape-sized bump sticking up on his forearm. We learned a valuable lesson with that one- get an experienced surgeon to remove the lumps! His fam practice doc siad "oh I can remove that in the office, no problem" and it was a disaster- nuerofibromas can be a lot harder to remvoe than just plain ol' fatty lumps.
It is tough that there is no way to predict how severe things might be later in life. You just have to wait and see if they have trouble in school, wait and see if they get lumps, and how many, and how big. Sucks! For now things feel relatively normal with William, and I have no way to know whether he will basically be a totally normal kid, ro he will get cancer and die. yay! (debbie downer moment there).
What types of doctors do your dh and son see? Dd sees a pediatric neurologist once a year and an opthamologist 2X a year. Maybe your son is still too young to see an opthamologist?
How does your dh feel about the NF? I always wonder if dd will hate that she has NF or just accept it as part of herself. I know there is a book to get for children with NF that kind of explains it to them, that I've been thinking of getting her.
Is your dh's NF a random mutation?
I think we all have our debbie downer moments. Lots of "why me (dd)?" I just wish more people knew about NF. I can't believe how common it is, yet how few people have heard of it. I never had until dd.
DH and DS see a geneticist who specializes in NF once a year. DS sees a pediatric opthamologist once a year. DH just goes to a regular opthamologist every year or so... at this point he doesn't really need to go for the NF, it is mostly bc he wears glasses, but he does see and Opthamologist vs. and optomitrist bc of the NF.
DH really doesn't care about the NF, I don't think he even notices the lumps.. But if is was me I would care- which makes me worry about DS during the teen years especially bc kids can be so mean. DH's was a random mutation.
The teen years will be very hard I think. I'm just doing my very best to give my dd lots of self confidence and love.
Not too long ago my dd was over at her friends house and they were playing upstairs and decided to play dress-up. I was downstairs and dd's friend came running down the stairs saying that dd "has all these little brown spots on her tummy." Her friend was very concerned and sweet but it was sooo sad for me. I had to explain to her that they were just birthmarks and didn't hurt dd. Dd didn't seem upset by the whole episode and I think it was worse for me. We just tell dd they are birthmarks or angel kisses but I know we will have to talk about it more soon. Whenever we see the Neurologist or Opthamologist she asks why she has to go.