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NF1 and children
Information and support for parents of children with neurofibromatosis type 1 (NF1).
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 ...
Mother And Daughter Both Diagnosed
- By Jaylasmom · New reply November 7, 2009
- 7 replies
- O.K. so I take my 21 month old to her first neurologist appt. She has had a huge spot on her right rib cage that goes from her back to her stomach. We have always just thought this was her birthmark ...
tumor/fibroma itch and pain
- By sringo · New reply November 7, 2009
- 9 replies
- My daughter has NF1. She has a number of tumors on her body, but not many bother her. She recently developed one on her inner upper thigh and it is driving her crazy! It is itching and is now an open ...
Does anyone have Scoliosis and has had sugery and how old was you ?
- By xxpearlkellyxx · New reply November 6, 2009
- 10 replies
- Does anyone have Scoliosis and has had sugery and how old was you ? xx ...
Ok once again confused
- By Sheleena · New reply November 5, 2009
- 2 replies
- ok today i took Tristan to his neurologist and i'm more confused now then i was. He has been having terrible migraines--3 to 4 a week since August. Even his Torodol hasn't been helping him much. his last ...
does any one else use baby lotaion
- By acann111277 · New reply October 31, 2009
- 5 replies
- i use baby lotaion to suthe pains of what i belive are neurofibors. the location is my neck ...
Please tell my son's doctor about your leg and back pain
- By evans_mom · New reply October 30, 2009
- 30 replies
- My son will be 4 tomorrow and he has had pain in his right leg and lower back for about a year now. we have had a MRI of his spine, a bone scan, and x-rays of both of his legs. All came back normal. He ...
What is the best birth control to use?
- By alicia2408 · New reply October 30, 2009
- 8 replies
- What is the best birth control to use? i had the paragarud iud. but i took it out do to a personal thinking on it. im now using the nuvaring is that a good one to use? what is everyone else using ...
Can intake of vitamin D help in suppressing NF1 tumors
- By godisgreat · New reply October 25, 2009
- 5 replies
- Hi All, My brother is 12 yrs old and I am seeing few cafe-li -spots on his body though we dont see any bumps yet. It will be a great help if someone can let me know if intake Vitamin D can help him not ...
4mth baby boy
- By TG1 · New reply October 24, 2009
- 34 replies
- Hi, recently took my baby to have needles and the doc noticed a few "birthmarks". Told me not to worry, they are Cafe au lait spots and just to keep a close eye on them.. Naturally I came home and googled ...
VERY late talkers???
- By MomToNoah · New reply October 24, 2009
- 11 replies
- I have a son who is 4 1/2 years old. He was diagnosed a couple years ago with NF1. We assume it was spontaneous as it never showed it either family before him and none of his three older brothers have ...
sight loss,double vision
- By benw · New reply October 21, 2009
- 4 replies
- Hello all! My 7 yr. old daughter has 4 large blind spots on her visual field test. She only had 1 last month. She had an MRI, been to Duke Hospital. The only thing on the MRi were several UBO's. She has ...
p21 RAS and NF
- By sami_mom · New reply October 20, 2009
- 4 replies
- Okay can anyone explain this pathway to me and in particular how it impacts tumor growth ...
optic gliomas
- By sunshinechild · New reply October 18, 2009
- 20 replies
- Hello, My daugter is 4 1/2 with nf1 and I was told by the eye dr. her eyes are fine. We have gone twice so far. We have to go in another year. I was wondering if an optic glioma can be missed by the eye ...
gleevec
- By denfen · New reply October 17, 2009
- 25 replies
- The doctors are discussing putting my 10 months old son on gleevec, to try to reduce his plexiform nf. I have heard about the 3 years old girl having a reduction in her tumours. Has anybody any other ...
ITCHY!!!
- By muffinturner · New reply October 17, 2009
- 11 replies
- My two year old is complaining of being itchy all the time at the site of a neurofibroma on her spine. It makes her miserable. Anyone else itchy? What helps ...
lack of growth and NF1
- By Cara_B · New reply October 17, 2009
- 19 replies
- My 13 month old was just diagnosed with NF1 although her pediatrician suspected it when she was 3 months old. Up until this point she was just labeled failure to thrive. I know that NF1 children are generally ...
my son had his MRI
- By suzieq323 · Posted October 16, 2009
- 0 replies
- My son had his MRI done Tues Oct.13. There wasn't much change for the most part. The neurologist said the only thing that had changed a little was the one place on his optic nerve. It had grown half a ...
