Neurofibromatosis

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SoCaliLover's picture
Joined: 12/07/06
Posts: 1591
Neurofibromatosis

Has anyone heard of this or have any experience about this? Tiff just sent me frantic text messages that ped may think my grandbaby Bayleigh may have this (or something else)

Apparently Bayleigh has multiple "cafe au lait" spots throughout her tummy and back --photos below. Doc said no treatment at this point, Wiki says there is no cure and can be bad or okay and they will not know for some time. She measured all of the spots and wants to watch it. Apparently it has a strong genetic component so she asked Tiff and Jeff to find out if its in their families. Of course BOTH of them are adopted. I think they both have some contact with some birth family members (well I know Tiff does, and I think Jeff is in some contact with bio mom) but they will never know 100%.

Bayleigh also has this crazy BRIGHT red/pink spot on her neck and has since birth. I mean crazy, looks like someone spilled hot pink paint on her and is slightly raised. . Doc said its not an issue either but it has a small lump under it that I could feel when they were here. If lump grows, then they may have to do something about it.

Tiff is not comfortable with this and may seek a second opinion from a dermatologist. Bayleigh in on Medicaid though so I am not sure what their options are with that.

Thoughts, suggestions, experiance?

Not sure if these will show really well sorry about the size, if I make smaller its harder to see

Bay front

Bay back

Heres the red spot


hotdiggit's picture
Joined: 10/17/07
Posts: 400

I have no idea what that is. I hope she gets some answers.

CamelNoodle's picture
Joined: 07/28/04
Posts: 908

The red spot is a hemangioma. Not usually a problem if it is small and not on the face. They typically develop after birth and then fade as the child ages. My 7 year old has two on his chest/armpit area.

My niece and BIL have neurofibromatosis. There are different types and it usually is inherited. My niece gets yearly brain MRIs because it can show up in the brain and is linked to one type of brain tumor. You can also get bumps or nodules on nerve endings. Sometimes these need to be removed. My BIL had some removed because they were on his ankles and he could no longer wear boots, which he needed for work.

Inthink there are two different types, NF1 and NF2. I don't advise a dermatologist on either of these because they are not skin conditions.

Please feel free to contact me with any questions. I am sure my sister would be happy to give you more information.

1aBABY's picture
Joined: 12/05/06
Posts: 474

How scary. I'm with Tiff and would seek a second opinion just to be sure. I hope she/you get some more answers. I'll keep everyone in my thoughts and prayers.

AshnBill's picture
Joined: 11/06/06
Posts: 5333

Janel gave some great advice! That's crazy they're both adopted and don't have a good way to see if other family has it, or talk to those family that have it. I would also get a second opinion, just to be sure they're not missing anything.

SoCaliLover's picture
Joined: 12/07/06
Posts: 1591

"CamelNoodle" wrote:

The red spot is a hemangioma. Not usually a problem if it is small and not on the face. They typically develop after birth and then fade as the child ages. My 7 year old has two on his chest/armpit area.

My niece and BIL have neurofibromatosis. There are different types and it usually is inherited. My niece gets yearly brain MRIs because it can show up in the brain and is linked to one type of brain tumor. You can also get bumps or nodules on nerve endings. Sometimes these need to be removed. My BIL had some removed because they were on his ankles and he could no longer wear boots, which he needed for work.

Inthink there are two different types, NF1 and NF2. I don't advise a dermatologist on either of these because they are not skin conditions.

Please feel free to contact me with any questions. I am sure my sister would be happy to give you more information.

Wow THANK YOU Janel! That is some great info. What type of doctor would follow up on this if its not a dermatologist? Or does a ped normally follow this info.

She did discuss the hemangioma -- is it common to have a lump under it?

For your niece, are the brain MRI's just routine? i.e. its just because of the diagnosis? Also were there other family members that had this? Tiff's biologicals may have had the spotting and some other issues which "could" be related but also could not. My comment to her is if none of the bios had major issues, even if Bayleigh had this its probably mild. I could be completely wrong but was trying to calm her down.

Joined: 06/23/12
Posts: 1

Hi. My fiance and my 7 month old son have NF. I know when I found out my son had NF I was scared, even though I knew his dad had it I didn't know very much about it. Some of the stuff you read is pretty scary. You really can't know how severe a case a person will have until they are a little older and issues start to pop up. The brown spots are called cafe au lait spots and are really harmless other than appearance wise. My son has around 15 of these ranging in sizes from a dot up to golf ball size. His father has roughly 12. I noticed the first one on his abdomen when he was a day or so old, I was hoping it was a shadow. His dad wasn't diagnosed until he was 3 and I guess that is when they first noticed the spots on him. His father also had NF. My fiance had only occassional testing after the original diagnosis and thus far we are waiting and seeing with my son. We go to a Neurofibromatosis Clinic at Johns Hopkins. I would see if there is one near you. The children's tumor foundation website is a good place to learn more or get help. www.ctf.org is their website. Feel free to contact me anytime you would like to talk or need more resources or anything. Hope this helped you.

SoCaliLover's picture
Joined: 12/07/06
Posts: 1591

"CitrusFruits" wrote:

Hi. My fiance and my 7 month old son have NF. I know when I found out my son had NF I was scared, even though I knew his dad had it I didn't know very much about it. Some of the stuff you read is pretty scary. You really can't know how severe a case a person will have until they are a little older and issues start to pop up. The brown spots are called cafe au lait spots and are really harmless other than appearance wise. My son has around 15 of these ranging in sizes from a dot up to golf ball size. His father has roughly 12. I noticed the first one on his abdomen when he was a day or so old, I was hoping it was a shadow. His dad wasn't diagnosed until he was 3 and I guess that is when they first noticed the spots on him. His father also had NF. My fiance had only occassional testing after the original diagnosis and thus far we are waiting and seeing with my son. We go to a Neurofibromatosis Clinic at Johns Hopkins. I would see if there is one near you. The children's tumor foundation website is a good place to learn more or get help. www.ctf.org is their website. Feel free to contact me anytime you would like to talk or need more resources or anything. Hope this helped you.

Thats a great site! Thank you!

Kellygirlj's picture
Joined: 09/21/07
Posts: 160

Usually a plastic surgeon for the hemangioma. It is usually a cluster of blood vessels so there is normally a bump.

SID081108's picture
Joined: 06/03/09
Posts: 1348

Oh yeah, I just remembered that one of my neices had a hemangioma on her head as a baby. It actually got very big, but they waited it out and it eventually went away, I think when she was about 3 years old.