We just switched our 4 1/2 yr old and 2 1/2 yr old to a new peditrician, who noted some physical signs of a disorder, and sent us to a neurologist. They (and subsequently, me) were both diagnosed with neurofibromatosis. Sans some "spots" on my skin, it has never been an issue for me, and hopefully, the same will be said for my kids. We will have to keep them monitored, especially during puberty. I guess i am feeling a guilty (at myself), and angry (at the old peditrician). Just needed to vent and "say" it outloud - before I have to tell anyone else....Thanks.

I'm so sorry, pookiesgirl. Hopefully your children will not suffer any ill affects.

I didn't know that epilepsy was largely a mother to son disease either...until my son had a seizure. So I totally relate to the guilt. But you just have to let it go.

We all get propencities towards things from our parents. It's just genetics. Lots of kids have tons of allergies and all kinds of other things to deal with on a daily basis.

Be thankful that this is something that doesn't need a lot of intervention, prevention or medication. Give your babies a ((hug)) and let yourself off the hook.

Good luck with your babies.

pookiesgirl
like TR says, be kind to yourself. You can't change it and beating up on yourself won't help you or your little ones. It's a good thing that you know what's wrong and know what to watch for. Good luck!! And give your kids a hug from me!!

Thanks to all. I think the biggest issue is that this illness (NF1), has so many variables, with no way to know what to expect, or when it will show itself. Hard for a planner like me to think about.

One day at a time - one day at a time

(((hugs)))