FAQ • neurofibromatoses

FAQ - neurofibromatoses
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How come I am the only one in my family with Neurofibromatoses type 1?

How come I am the only one in my family with Neurofibromatoses type 1?

its a GENETIC dissorder.

but my mum or dad or their parents don/t have it.

none of my brothers or my sister doen't have it.

there is absolouctly no family History or Neurofibromatoses 1 or 2.

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I'm sorry to hear that you have this condition and, although it IS a genetic condition, the Neurofibromatosis Association website says this about it:

"About half of the people who have NF have no family history. In other words, it has occurred "out of the blue" with no-one else in the family being affected. This is called a spontaneous gene mutation. The other half of people will have inherited NF from their mother or father."

I think that's as clear an explanation as you're going to get about the condition.

If you've not done much reading on the topic, might I suggest that that website is a great point to start.

I wish you the very best of a long, happy, healthy future. (+ info)

What do you use for pain...I have neurofibromatoses (nf1) ???

I have pain in the left side of my abdomen.... all the time. I haven't found anything that makes it go away.... any suggestions?

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Since doctors don’t know how to prevent or stop neurofibromas from growing, surgery is often recommended to remove them. Several surgical options exist, but there is no general agreement among doctors about when surgery should be performed or which surgical option is best. Individuals considering surgery should carefully weigh the risks and benefits of all their options to determine which surgical treatment is right for them. There are also surgical and chemical techniques that can reduce the size of eye tumors (optic gliomas) when vision is threatened. In addition, some bone malformations, such as scoliosis, can be surgically corrected. In the rare instances when tumors become malignant (3 to 5 percent of all cases), treatment may include surgery, radiation, or chemotherapy.

Treatments for other conditions associated with NF1 are aimed at controlling or relieving symptoms. Headache and epileptic seizures are treated with medications.

Use a heating pad On the affected area for twenty minutes. Wait twenty minutes then apply an ice pack for fifteen minutes. You can try each one of these modalities separately as well.

I also recommend you see an acupuncturist. (+ info)

What do you use for pain???

I have pain in the left side of my abdomen.... all the time. I haven't found anything that makes it go away.... any suggestions? I have neurofibromatoses (nf1).

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Plz do not take any medicine without your doctor's prescription.
neurofibroma is a benign growth that occurs in your nerve sheath.
where exactly on your abdomen do you have pain? on the upper or lower abdomen?
there can be different causes including renal calculi[kidney stone] for pain abdomen. uterine conditions can cause pain lower abdomen[i assume you are a female]. there can be other reasons as well.
so consult your GP and get proper investigations, if the pain is severe and chronic. (+ info)

HELP.HELP! These lumps on the side of my stomach are getting bigger!?

Ok then,

I have had these two lumps on the left side of my stomache for ages. I can't remember not having them.
This isn't an extra nipple!!!!!

anyway they are side by side one had always bean bigger they were about 2-3mm but over two months the small one has growen to the size of the big one and they have joined up. You can still see that it is two lumps though.
I do have Neurofibromatoses type 1.
Should i talk to my Dorctor What would you recomend
Its not sore. Should I tell my mum. I have not told her at all about the lumps growing i was worried i would scare her.

Thanks

i am worried

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You REALLY need to see the doctor!! I don't want to scare you but it could be serious.
Make an emergency appointment asap (+ info)

These lumps on the side of my stomach are getting bigger?

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You sound scared enough for both you and your mum. For heavens sake, why don't you confide in your mum, she's there to help you, and be with you.

Only a G.P can answer this medically, better be safe, and less worried, than lying there at night wondering what is going on with your body.

Do something now, today, don't wait any longer

Good luck

Caramac x (+ info)

Potty training my 2 1/2 year old!?

My daughter is 2 1/2 years old, and has a condition called Neurofibromatoses type 1, she doesn't talk yet, but shows other signs of being ready to use the potty. She hates having a dirty diaper, when her diaper is off, and she has to go to the bathroom she says ohh o or starts to cry! Am i starting this to early? Any ideas on potty training? This is my first time trying it!
Her Dr. did ask me to try it with her when she was around 2! I felt she wasn't ready yet! But now that she is 2 1/2 i feel that i should give it a try! I just don't want to set her back, if its to early.
well i just put her on the potty after breakfast, and she went pee, it was only 6 drops but she went pee!!!

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There is a great method of toilet learning that adapts especially well for nonverbal children. There are three parts 1) cueing 2) awareness 3) timing. It is a gentle process that reduces stress for parents and frustration for children.

You start by cueing her everytime she pees on a potty or you notice her peeing in underwear, say "you are peeing!" and do the ASL sign for toilet, this increases the ability she already apparently has to know when she needs to pee and gives her a visual signal she can start using in the future. 2) Occasionally let her wear training underwear or cloth diapers so she can keep in touch with how it feels when she pees, go longer if accidents don't stress you out 3) take a day or two and observe your daughter and learn when she is most likely going to need to pee (first thing in the morning, every 20-30 minutes in the morning, after her nap, before bath/bed, etc). Start taking her for a quick potty opportunity at these times each day. Just make this a normal routine and don't stress about potty training. Eventually her diapers will be pretty dry and she will start waiting until pottytunities to pee/poo. Then, graduate to underwear full time. Keep having regular pottytunities. She might start signally to you reliably that she needs to go or just going on her own. Let this happen, but don't quit offering the regular potty opportunities right away. Finally she will start either signally for help or else taking herself 100% of the time. Then you are done. Some kids take only days or weeks, some take months. There is a huge spectrum in what is normal. Don't worry, with this method she'll get trained in the amount of time which is right for her. (+ info)

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