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Neurofibromatosis Support Group Neurofibromatosis
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A community of patients, family members and friends dedicated to dealing with Neurofibromatosis, together.
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New with questions!


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05/19/2008 13:11
ctkity21
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Posts: 13
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 Hi my name is Jessica...I have 2 kids Jaiden is 3 and Dantae is 7 months old. Both were born early, Jaiden was 31 weeks and Dantae was 36 weeks. I am posting here with a couple questions!! Dantae has a lot of cafe au lait spots. Started out as one on his face along with some blueish mongolian spots on his hiney...so we thought the mark on his face was just a birth mark. But then he started to get more and more of these cafe au lait marks. He has 15. His blue mongolian spots on his behind have gone away and now he has big cafe au lait marks there. Our ped says he has this neurofibromatosis...he is going to see the neuro next thursday. So what should I expect? he has no other outward symptoms. His head is a little funny shaped in a couple spots but our ped said its normal..my other son Jaiden had a LOT of health problems and has had 11 surgeries...so I can take the doctors visits etc..what I cant take is the unknown!!! Ive looked at some websites online and saw some pretty bad stuff so I stopped looking pretty quickly! our ped says theres varying degrees of the disease and we wont know how bad he has it just yet but hopefully all he has are the spots. So i guess im asking what should i expect????

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06/02/2008 02:53
auckland
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 Hi there I am sorry to hear your story. I have a daughter with nf1. she was diagnosed at 8. I understand your feelings. The unknown of this condition is the worst thing. Up until puperty things were find, learning difficutly , mild scoliosis. Puperty hit, scoliosis rapidly changed and tumors have grown. With all the internet information, we diecided early on that her life would be as normal as possible, try every sport , promote new experiences (Still parenting normal, ie not spoiling her which is very hard at times) but not focus on academic results but on experiences of how good life is, because it may change. She has had many hosp app in the last two years and looks like alot more to follow, we are going to another country for a PET scan as MRI scans cant pick up change in her tumors due to the amount she has. I am seeing this as a holiday for her and I to spend some Mum and daughter time. Mean while my stomach is terrified that they will tell me she has cancer. . Sorry I have gone on so much. I cant tell you how it will go with you, I dont think any one can. BUT what I can say is see the light in your child , help them to have confidence and great self esteem because that is what they will need later on in life. If they can see a little of the good side of life when the bad times hit. You may be very lucky and not have many bad times. I Pray for this. Take care of yourself and try not to worry to much . ha ha I know ...
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11/16/2008 18:44
beauty4ashes
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Posts: 388
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 Hi, auckland~

Welcome, and I hope that we can help you with support & understanding and also information & rescources.

I believe I responded to 'what to expect' on another one of your posts, but I am not entirely sure. I have been spending all day today going around and trying to connect with each NF member. If I am incorrect on responding, please do not hesitate to let me know, and I will make sure that I get back to you with more info, okay?

Glad you are here, and God bless!!

(((BIG HUGS)))

I'm F.I.N.E.
Frustrated, Irritated, Nonfunctional & Everything hurts!!

Sarcasm: Embrace it!
______________________

"The unanswered questions aren't nearly as dangerous as the
unquestioned answers."
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I know God will not give me anything I can't handle.
I just wish he didn't trust me so much.
- Mother Teresa
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"There's always light at the end of every tunnel, just pray it's not a train! "
______________________

Faith makes things possible, not easy!


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