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NF1 and children
Information and support for parents of children with neurofibromatosis type 1 (NF1).
New to all this, child with NF1, pseudoarthrosis
- By Bellaysa · New reply October 15, 2009
- 26 replies
- Hi all, I am new to all this and I just wanted someone to talk to about NF. Here is my story so far. I had a beautiful baby boy in March around 4 weeks I noticed the first café au lait spot of which they ...
Can playin outdoor sports like swimming help reduce growth of NF1 tumours
- By godisgreat · New reply October 15, 2009
- 7 replies
- Can someone pls tell me if childern play outdoor sports like swimming or Lawn tennis, skating etc , it will lessen the growth of NF1 on their body ...
What do they look like?
- By Cara_B · New reply October 14, 2009
- 9 replies
- What do newly formed tumors/bumps look like? My one year old has some bumps that the pediatrician said look like heat rash, but she admitted she has never seen an NF patient before (the "rash" has been ...
Chemotherapy for optic chiasm glioma any one?
- By FWmom1 · New reply October 13, 2009
- 15 replies
- hey everyone. my 3 yr old daughter has an appt w/ a neuro oncologist next week at Riley childrens hospital in Indianapolis to disciss chemo for her optic chias. glioma. The glioma may also be extending ...
KIDNEY TUMOR found. . .can anyone relate?
- By Karpher · New reply October 13, 2009
- 7 replies
- My daughter is 11 years old, has NF1, and recently an ultrasound of her kidney showed a fibroma on her kidney. Has anyone had a fibroma on their kidney, or have a family member that has? Any information ...
My five year old little boy has a plexiform on his hip/leg
- By vandyson · New reply October 12, 2009
- 13 replies
- It has been there for awhile and all the doctors that has seen him has been telling us all along that is a lipoma which from my understanding isn't a major issue. With that in mind I have went on with ...
Back to Surgeon in Montreal
- By kathyjulesmom · Posted October 12, 2009
- 0 replies
- Well as title says we are going back. Jullian sprained his ankle that has the plexi in it.He is having a TON of pain in the knee too and the leg.He now also has heacahes once at week at least too.He is ...
Gleevec vs Interferon
- By Jeremiahs_Mom · New reply October 11, 2009
- 7 replies
- Has anyone every tried either drug? We went to see the hematology/oncology doctor. These are our choices. Im leaning more towards the Interferon since it is a chemical already found in the body with less ...
light colored cafe au lait spots
- By Jill_Nic · New reply October 10, 2009
- 12 replies
- does anyone have children that have cafe au lait spots that are vey light in color? I have 2 daughters and my oldest has some cafe au lait spots but they are dark. My 6 month old has a couple now but ...
Vitamin D
- By MIRACLESOCCUR · New reply October 10, 2009
- 2 replies
- I have started Sarah on 1000 I.U. of Vitamin D. From what I have read and ask pharmacists, this is not to much for a 73 pound child. Trying to boost the immune system. Sarah is also on Boswellia, COQ-10 ...
What kind of therapies/ services have you received for NF?
- By beautifulkana · New reply October 9, 2009
- 15 replies
- What kind of therapies/ services have you received from the school district, state or privately to help cope with NF? My son is going to be assessed by our school district tomorrow for their special ed ...
Blessing
- By Unclesteven · New reply October 9, 2009
- 1 reply
- I guess it was a blessing when my niece took My grand nephew to the Er with his leg problems they were ready to CFS the cops becasue he had a broken leg a child of 2 shouldnt have that but the Doctor ...
info on NF1
- By GRANDMAJULIE · Posted October 6, 2009
- 0 replies
- Hello, my granddaughter is 19 months old and has NF. She has lost her foot to this disease and will need further surgeries to make her leg stronger. My daughter and I are new to this disease and would ...
I don't know what to do!
- By ThaiTea · New reply October 6, 2009
- 3 replies
- Hello, I'm new here. I'm from Thailand, but now living in Atlanta, GA. I apologize for my bad english in advance. :D My 7 month old daughter got some brown spots on her body. We went to see the Dermatologist ...
HOW DO YOU HANDLE BEING...............
- By MIRACLESOCCUR · New reply October 1, 2009
- 11 replies
- THE ONLY CAREGIVER?????? I FEEL VERY WORN OUT AND FRUSTRATED THAT NO ONE ELSE IN MY FAMILY EVEN HAS A CLUE AS TO WHAT TO DO OR HOW TO HANDLE ANY EMERGENCIES IN CASE SOMETHING HAPPENS TO ME. OF COURSE ...
Pickey eaters
- By TwylaWarner · New reply September 30, 2009
- 19 replies
- My daughter is almost 5 and she has NF1 and 1yr 1/2 development delay which im sure is due to nf. Ok does anyone else have this problem. She eats only cookie crisp, cheetos, funyuns, poptarts, m&ms, skittles ...
NF CONFERENCE IN OHIO
- By proud_momma · New reply September 28, 2009
- 3 replies
- CINCINNATI CHILDRENS HOSPITAL IS HAVING A NF CONFERENCE ON 11-14-09 FROM 8:30-12:30 I JUST WANTED TO LET YOU KNOW I JUST GOT THIS IN THE MAIL.IT SAYS LECTURES AND BREAKOUTS SESSIONS WILL ALL BE GEARED ...
Does NF1 interfere with nail growth
- By momo3a · New reply September 28, 2009
- 8 replies
- My 17 month old has only needed her nails trimmed once in her whole 17 mos of life. I assume this is related to nf. I always forget to ask her docs, because when we are there I am distracted by other ...
interferon
- By Macie · New reply September 28, 2009
- 11 replies
- My 23 month old may start to get interferon shots if her plexiform neurofibroma starts to grow again. She has one in the orbit of her eye which increased in size from her 2nd-3rd MRI but then barely grew ...
14 yr old son
- By louisianalannie · New reply September 27, 2009
- 4 replies
- hello im a mom of a 14 year old son hes really depressed and i need advice or someone to talk to him im worried i know he wont do anything but im hurting because hes hurting girls are always breaking ...
