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 a cafe au lait.. my daughter has a lightheadeness last Oct 2008 until now. Her Pediatric Neuro request for MRI head here in the Philippines last June 26.. The result of my daughter MRI head is normal is negative..
But now my daughter felt again a lightheadeness but its a split seconds and its back to normal.
What other test that confirmed that my daughter has a positive for NF?
If the genetic testing.. we cannot afford for that someone told me that its too much expensive?
Is there have an Institution for the Free genetic testing?
Thank you... please help my daughter...
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
My 4 yrs old Daughter has diagnosed for NF...
- By zhanie
- Posted July 24, 2009 at 9:48 pm · 15 replies
- In NF1 and children
- Shared with the public
Explore topics in this discussion:
15 replies
- Oldest first
- Newest first
- By sweetiecat
- Posted July 25, 2009 at 12:01 am
- Report post
Try The Children's Tumor Foundation www.ctf.org .They work with children and try to get them the health care they need. I would certainly give it a try. Let me know. Also try www.nfinc.org they have a lot contact information there also . Good luck
- By Karpher
- Posted July 30, 2009 at 7:02 am
- Report post
The way I understand it is 6 or more cafe au lait spots must be present (multiple) to even possibley be Nf1. Check this out before you worry anymore.
- By RyanC
- Posted July 30, 2009 at 7:41 am
- Report post
First off your daughter is adorable. My little boy also is 4 and has been diagnosed with NF1. I'm not sure about being light headed. I know you mentioned that your daughter has a cafe au lait spot. Is there one or more? The mri came back negative. Were they looking for optic gliomas ( tumors on optic nerves)? I believe that an MRI is the best diagnostic test for discovering if there are tumors... I have always been told that you need to have 2 or more of the symptoms below to be diagnoised with NF. Are you seeing more symptoms? Genetic testing can be expensive, we have not had it done for our son.. but I have heard that it is good to get done if there are some questions about the diagnois etc..
Symptoms -
1.Six or more café-au-lait spots 1.5 cm or larger in post-pubertal individuals, 0.5 cm or larger in pre-pubertal individuals
2.Two or more neurofibromas of any type or one or more plexiform neurofibroma
3.Freckling in the axilla or groin
4.Optic glioma (tumor of the optic pathway)
5.Two or more Lisch nodules (benign iris hamartomas)
6.A distinctive bony lesion: dysplasia of the sphenoid bone or dysplasia or thinning of long bone cortex
7.A first-degree relative with NF1
- By Kerri-B
- Posted July 30, 2009 at 5:07 pm
- Report post
Hi,
There is a blood test that can be done. They can see the gentic marker for the NF in the person w/the NF & compare it to the other siblings to see if he or she has it. I had this done in R.I & my brother can now see if he has it. My insurance at the time covered the blood work test. I hope this helps.
Kerri
- By worried_mama
- Posted July 30, 2009 at 11:28 pm
- Report post
hi zhanie. m from the phils, too and have an 11yo daughter who has nf., the only 1 in the family. there are times when i feel that we don't have much support as the rest cuz we don't have a specialist on nf unless you have found one. if you know of one, do let me know. i know how you feel as a mom cuz i feel that way, too.
- By mikemartinez
- Posted July 31, 2009 at 12:17 am
- Report post
hello i also have that neurofirbromatosis and i have a natural remedy and it says that bee propolis might work..i'm going to start trying it heres the websitehttp://www.naturalnews.com/026158_propolis_tumors_cancer.html
- By PhotoMomToFive
- Posted July 31, 2009 at 7:58 pm
- Report post
I'm sorry you're going through this. My now five year old daughter was diagnosed with NF 1 through a blood test last year. She has only one small cafe spot but I noticed proptosis of her left eye. She was scanned and has a glioma. This led to the testing because she has no other 'typical' signs that meet the 2 or more criteria. Our insurance did cover the testing. If the MRI showed not tumors that is GREAT news! I hope you are able to get everything figured out.
- By sebo
- Posted August 3, 2009 at 12:36 pm
- Report post
Hang in there. My daughter, who is also 4 years old, was diagniosed with NF1. But you have to have 2 or more symptoms to be diagnosed with NF1.
Usually, if the MRI comes out normal, that is great news. My daughter has a missing bone in her arm. We just did the suregery for her and now she is doing wonderful. Try contacting CRS, childrens rehabilitation services in your state and they help pay for medical bills.
Good luck.
- By zhanie
- Posted August 4, 2009 at 2:21 am
- Report post
When she was born she had 1 small spot on her chest.... And right now that she is already 4yrs old she has 35 cafe au lait spot.. And 1 week before she turn's 4 she had a speech articulation...
- By blkdolfin
- Posted August 4, 2009 at 6:36 pm
- Report post
My daughter was diagnosed when she was 13 months old, a spontaneous mutation. She is now 20...bright, funny, beautiful, courageous. If you are near a children's hospital, ours was invaluable.
- By zhanie
- Posted August 17, 2009 at 9:58 pm
- Report post
We are here in the Philippines.
Where Childrens Hospital?
Thank you for the Info.
- By pamzac
- Posted August 18, 2009 at 2:56 am
- Report post
My 7yr old granddaughter has 4 spots dr said to watch them ...but now she has developed a head jerk that she doesnt seem to be aware shes doing sorta in a circlclur motion any advice? or clues thanks
- By sueburke
- Posted November 12, 2009 at 10:08 pm
- Report post
I have a 23 year old daughter who has NF (DNA tested) and has family history. She is the only one in the family that has just the CAL spots, and freckling, nothing else. She went through a pregnancy without it getting worse as well. There are many cases like hers.
- By Yazmin79
- Posted November 13, 2009 at 12:12 am
- Report post
When I was little i went to texas childrens hosp. in houston texas and now i go to md anderson cancer hosp. in houston both are great hosp. you can take your baby and they have help for funds and travel you can look up their information online
- By zhanie
- Posted November 16, 2009 at 10:42 pm
- Report post
thank you for the information.. it's too much expensive for us to travel abroad.. we are here in the Philippines. my i know the online?
thank you again and god bless
Add to the discussion