intro and ?- Moms who have NF

tinkerfly81

Just wondered if there are any mom's here who have Neurofibromatosis?  I was diagnosed with NF-1 as a newborn.  Both my mom and her mom also had it, and so does my brother.  

I have 2 sons, nether one has any evidence of it (no CAL spots at all- but both are very short-  I am only 4'9)

I am also pregnant right now (11 weeks).  

I previously only had tumors on the sides of my feet and one on my chin pre-pregnancy with my first son.  Once I got pregnant with him I started to grow more tumors and they are all over my stomach, breasts, and some on my back.  

I have quite a few small raises of skin- not quite under my skin (on my arms and hands) if that makes sense.  They are not under the skin- but more like slight raised but only noticeable in certain light if I hold my arms just right..  

This pregnancy I am super paranoid about the tumors growing bigger on my arms and hands.

I am praying all the time that this baby does not have NF.  I know one can live a fine happy life with it but it (my dx) still bothers me..  

tinkerfly81

Moms with NF did you notice tumors growing more during pregnancy.

Also, how many children do you have?  How many have NF?  (My mom had 4 children, 2 of us have it, the other 2 do not)

grbnik

I don't believe I have it, but my DD is getting genetic tested for NF-1 and TSC.  I have an ash leaf spot and my husband has a few small CAL's.  We don't show any other symptoms.  My DD has shown signs of possible seizures for the past 4 months now, and has 2 ash leaf spots and 4 CAL's (very small- like freckles, so not sure if they even are CAL's yet- she is 21 months old).  I know that my mother's side of the family has growths on their skin (some very bad) but I don't know if any have tested for NF-1.  Sorry not to be more help- just wanted to throw in that we may be dealing with this as well.  Good luck with your pregnancy!

CaptainSerious

I do not have NF, but my son, who we adopted, does.  I can't answer most your questions, but I did read that it's common for the tumors to grow/appear at times when your hormone levels fluctuate or are elevated (puberty, pregnancy, menopause, etc.).  I don't believe there's a link to you having more tumors grow and passing NF to your child, but I could be wrong. 

grbnik:

My DD has shown signs of possible seizures for the past 4 months now, and has 2 ash leaf spots and 4 CAL's (very small- like freckles, so not sure if they even are CAL's yet- she is 21 months old).

Freckling, especially in areas where the skin folds (under arms, groin area, and a few other spots), is another sign of NF, separate from the CALs.  When a child has both the CALs and the specific freckling associated with NF, it's usually enough to suspect the presence of the disease, and that's likely why your daughter's being tested.

tinkerfly81

@NorthernLghts - This is my 4th pregnancy (2 boys and a m/c).  So far none of my children have NF.  and I pray all the time that this one also does not have it.  
I only had 2 tumors on my foot and one on my chin before my first pregnancy.  

when do you get your results

?

CaptainSerious

Can I ask a question about the rumors? My son has bumps all over his body (just turned 7). Most doctors told me they are molluscum contagiosum, but he's suddenly got so many of them. How will I know if they are all MC, or if he's developed a tumor related to NF? What should I be looking for? Could you describe with neurofibromas look like?

tinkerfly81

@CaptainSerious-

Does your son have any coffee looking spots?  (cafe au lait if you wanna look it up)   If he does not he doe snot have NF.  

If he does have NF- the tumors can vary in size, shape, and color.  I have some that are skin colored, some that are pink in color.

CaptainSerious

My son has been diagnosed with NF. He has the CAL spots and freckling, and the doctors have no doubt he has NF. My concern is that he stared getting these bumps last year, and they grew and did not go away. Now he's suddenly covered with more, but still none have gone away, but the doctors say it's not NF related and should go away on it's own. Since I don't have NF, I don't know what to look for or how it differs from the bumps the doctors said not to worry about. He seems to keep getting more, and I don't know if it's more of the same or because of the NF.

CaptainSerious

@NorthernLghts thanks for sharing.  I'm thinking of you today and hope you get clear and positive results (negative for NF)!

CaptainSerious

Hoping you have good news.  Let us know.

mmariamm

Both my husband and daughter have NF. My husband has those little bump all over his back, they are almost like prickly heat, right? They are always there, althouhg sometimes more prounounced, depending on temperature I guess.

Sorry to hear about your baby's diagnosis, NorthernLghts. I remember getting that phone call so well... But as you know, many MANy people live perfectly normal, uninterrupted lives with NF. Hoping your sweet baby girl is one of them! Check out the NF group on inspire.com, they have a NF and pregnancy and forum, as well as a NF and children forum.

CaptainSerious

I'm just seeing this now.  I'm sorry about your daughter's diagnosis.