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NF1 and children
Information and support for parents of children with neurofibromatosis type 1 (NF1).
plexi growth rate
- By sami_mom · New reply 10:55 am
- 5 replies
- My 6 year old has what is most likely a plexi on his side. It grew very fast. Has anyone else seen such fast growth ...
What would you do?
- By gerry04363 · New reply 6:43 am
- 26 replies
- I am here like so many other people, living with a terribel disorder or perhaps it is a loved one and we are in serach of the holy grail or cure that will save our loved one from an endless amount of ...
Was anyone scared to have children?
- By alicia2408 · New reply yesterday at 3:38 pm
- 19 replies
- My Husband and i are talking about having a child down the road but we are scared that the child will get nf 1 in a more severe way then what i have. i have a mild to moderate form it. does anyone feel ...
son likely to have NF1
- By format · New reply yesterday at 9:30 am
- 5 replies
- My 16 month old son has several cafe au lait spots. We saw the pediatric neurologist today and he said it was likely he has NF1 and suggested we monitor him as if he has it. I am nervous and scared about ...
How to handle L.D. child
- By MIRACLESOCCUR · New reply November 19, 2009
- 20 replies
- How do I handle Sarah's L.D.'s? HEr MRi comes back as stable, she acts fine (very, very spoiled ), but yet she cannot remember a thing. I can go over spelling words with her again and again but to no ...
Dr told me to ignore 3 year old when he complains of pain
- By evans_mom · New reply November 18, 2009
- 32 replies
- My son has been complaining of back and leg pain for about 8 months. We have had x-rays of his legs and back. An MRI of his spine and they were all normal. Next month he is going to see a neurologist ...
mastocytosis and NF
- By evans_mom · New reply November 17, 2009
- 5 replies
- Does anyone have NF and Mastocytosis? My son 40+ cafe o laits and a few mastocytomas. They both look the same but the mastocytomas turn red when they are rubbed because the release histamine. He has had ...
My 4 yrs old Daughter has diagnosed for NF...
- By zhanie · New reply November 16, 2009
- 15 replies
- my 4 yrs old daughter diagnosed on May 23, 2009 she has a cafe au lait spot.. But after 1 week the doctor said that she has NF. we find a another doctor for the 2nd opinion but she told me that she has ...
nose bleeds
- By nerissatyeryar · New reply November 16, 2009
- 6 replies
- My son is 6 1/2 and has nf1 and he keeps nose bleeds is this common in nf . i also have nf and have nose bleeds ...
M.D. Anderson - Houston?
- By KatiesDad1 · New reply November 16, 2009
- 8 replies
- Our Katie just turned 2 and has a growing bilateral optic glioma impacting the chiasm. We are currently in Ausitn, but there isn't a great deal of childhood NF experience here....We are contemplating ...
ok mom's of NF children...I need honesty!
- By sringo · New reply November 15, 2009
- 21 replies
- Is there any link to behavior and NF? My daughter is otherwise a happy, thoughtful, loving little girl...but sometimes she just goes off the deep end with her behavior. Some is linked to her frustrations ...
I am sooo angry!!!
- By Shauna4222 · New reply November 14, 2009
- 9 replies
- I dont want to be one of those people that are always saying why me why my child. But I cant help but wonder why. I am having such a hard time coping with this. My boyfriend is in denial and thinks hes ...
Financial Costs of Chemo for Glioma?
- By KatiesDad1 · New reply November 12, 2009
- 5 replies
- Our 2yr old has bilateral optic glioma extending to the chiasm with significant growth and it's likely we will be starting chemo soon. We have insurance and the deductible is high (but has been met for ...
Irregular skin darkening... not typical CAL
- By karan · New reply November 12, 2009
- 8 replies
- My daughter has some irregular skin coloration... mostly a darker area containing some lighter spots on a leg near her knee. I would describe it as looking like it's just dirty skin... like she didn't ...
How do you know?
- By jennlrobles · New reply November 12, 2009
- 8 replies
- My son is 13 months old and he has the cafe au lait spots but that is it. They have not officially diagnosed him with NF1 but they said that they want to monitor him for it. I find this a bit frustrating ...
Going on chemo for optic glioma!
- By PhotoMomToFive · New reply November 11, 2009
- 17 replies
- My five year old daughter was diagnosed with NF almost a year ago via blood testing after we found a glioma on her left optic nerve. She has no other signs or symptoms. She just had her second MRI to ...
Head bumps and MRI
- By LDK · New reply November 11, 2009
- 12 replies
- I took my daughter to her pediatrician yesterday b/c she has a series of bumps on the back of her head, up on the skull. She said it was "standard" for NF but she is not an NF expert. There are about ...
CHU Sainte Justine NF Clinic
- By Hope2BMD · New reply November 10, 2009
- 5 replies
- Has anyone been to the CHU Sainte-Justine NF Clinic in Montreal? http://www.chu-sainte-justine.org/Family /page.aspx?ID_Menu=3131&ID_Page=3374&Ite mID=1a14 I'm thinking of trying to get our son in there ...
NF & heterochromia (different colored eyes)
- By MegR · New reply November 9, 2009
- 4 replies
- My 2 year old has a possible NF-1 diagnosis-- we're still waiting for a few appointments. But I'm wondering if anybody has any experience or information about whether or not NF & heterochromia (different ...
Not sure if My child has it
- By Jaylasmom · New reply November 9, 2009
- 8 replies
- My 20 month old daughter was born with a huge Cal spot on her left side. I never thought twice about it being anything other than a birthmark. Her doctor has always kept a close look at it but has never ...
