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NF possibility in newly adopted girl

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NF possibility in newly adopted girl

Postby Chele63 » Fri Feb 12, 2010 2:42 am


I just found this site while looking for info on NF. We just adopted a little girl from Russia - just brought her home the week before Christmas. She was born premature (abandoned at birth), she is a little peanut. She is adjusting amazingly well, better than we had hoped even in the beginning, putting on weight, sleeping well etc. We were ecstatic!! We took her for her first doctor's visit, and he noted some areas on her stomach/abdomen area and asked, "Were these cafe au lait spots noted on her medical records?" (that was the first I ever heard of them). They are so light and tiny, that we didn't notice or think anything of it (and no, they were not noted on her medical from Russia).

Anyway to make a long story short, we have no parental history at all. She has no other signs right now, no hypertension, no glioma or lisch nodules, no freckling, etc, but she is only 19 months old. She has a LOT of the cafe au lait spots though at only 19 months. Would this lead you to believe she will have a "bad" case? We are SO very upset right now. We had said that we could take a child with "minor correctable" health issues since we are older parents to start with. I don't want to sound cold, I know it is not like shopping, but that is what we felt we could handle (not something that will present itself with more problems as we get...well..."old").

I am just trying to learn what I can, and some sites I have seen horrible photos, and it is all SO scary for my beautiful little daughter!!!!!!! It is not what we expected, and while the doctors over there "missed" this problem we are told by our agency, our regular pediatrician saw it immediately and said not to worry but to get it checked out.
The genetecist we saw said the likelihood was there that she has this disease (something to that effect). She said we will return in 6 months to have her seen again. She said there was genetic testing but if we were to do the testing and it showed our daughter had NF we wouldn't do anything else right now but monitor her anyway...I was kind of numb at that point, so I forgot to ask why we wouldn't just do it so we are sure. Is there a test for NF? Is is very accurate, is it very "difficult"? I wasn't sure since the doc didn't say, "let's test her"...after I left and came to my senses, I had questions. (and it is 2:00 am righ now)

I know I am rambling here, but I am just so upset right now. If anyone can tell me anything about testing, or whether a lot of the spots can tell of things to come, please help!

Thanks so much,
Chele :cry:
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Re: NF possibility in newly adopted girl

Postby Vandaar » Fri Feb 12, 2010 4:04 am

The number of CALs don't predict the severity. After six they mean very little to NF.

Since you say they are tiny I guess you mean the spots How tiny? Like freckles? Too tiny and they don't mean anything.

Don't worry about the photos you see online. Unless they were extreem the photos would not be online. Only a small number of people with NF are severly affected. Chances are good that there will not be any problems.

Sounds like your doctor knows what she is talking about. Waiting is hard but it is about they only option right now. The testing is very accurate, but can't tell you much more at this time than she has a mutation of the NF gene. You would still have to wait and see.

You didn't mention your daughters name. What college will she be attending. When is she going to start dating? Are you going to let her play any sports? Plan for a bright future. Nothing is in her way?
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Re: NF possibility in newly adopted girl

Postby Nathan » Fri Feb 12, 2010 6:05 am

Oh Chele - I feel for you right now. What you are feeling is normal parental concern - whether you are your daughters birth parent or not!! You are this little one's Mom and the vision you had of the future with her has changed forever. It is a big adjustment, but not as bad as you are thinking right now - please believe that. If you have not read the Welcome to Holland thread then I can strongly recommend it. It is about how when you have a child (by whatever means) before you even have them in your arms you have a future mapped out for them. When you learn there is a deviation from normal ( diabetes, NF, cerebral palsy, learning disability - gosh even just not being good at playing the piano) and thereby your plan of the future deviating - your child hasn't changed but your vision of your life as a family has. It won't be a bad life but it will be different than what you expected. Keep in mind that although she most likely has NF she could just as easily not have had NF but have gone off the rails in her teens, or turned to drugs, or decided not to go to university as you had hoped.

Life with NF is joyful and full and fulfilling.

The number of CAL's is no indicator for how a person is affected by their NF. Some people have loads of CALs and that is all, others have few CAL's and other issues. There is a blood test available that detects NF1, but it is relatively new and not 100% reliable. The doctor is right - even if it was positive it wouldn't change her treatment plan - watch and wait. If it was negative, it is not 100% reliable, so you would probably still watch and wait. The test is a simple blood test, so not overly problematic for your baby. If it would make you feel better and your insurance covers it, or you can afford it, why not ask for it so you know what you are dealing with? (Search UAB on the threads).

It sounds like your doctor is very switched on and that is a very good thing - many are not. He or she will know what to look for and to assess that she is reaching her milestones.

If your signature name is anything to go by you are not exactly ancient .... (younger than me! ;) ). Children keep you young. (They age you too :lol: ). By the time she is 20 you will be in your mid 60's. By then you will have provided her with a good education. Because you know about her NF you will have taught her skills to manage her health and her budget and her life. Even if you do drop off the perch you will have provided well for her - far better than her beginning predicted. She is a lucky little girl and you are lucky to have her.

How do I know? Well, my son is affected by his NF both from a learning and a health perspective. We were so lucky we found out early. Because we knew he could have a learning disability we recognised it early and have done everything we are capable of to assist him with that. His learning problem is quite significant, but he saves better than his older, more capable, brother; he is the most organised person in our house; he cooks and manages his room; catches public transport so can manage the timetable etc.; and he knows when to let us know if he is unwell. At the age of 6 months when we first learned of his NF I could not have predicted this. I thought it was the worst thing that could happen to my baby. I lived in a haze for ages. While I still wish it wasn't our reality, we have all earned to live with it. I do so badly wish he didn't have NF and all of the things that have come with it for him. I can't change that, but I can be helpful to him by teaching him and thinking about the future and having a plan for how he can live with his NF and all its permeatations. (Is that a word?). Very recently we were faced with the possibility of losing our son. That gave me a lot of persective. He has had a wonderful life so far. Even in the most mundane moments, he has truly lived. His having NF has made me appreciate every living, breathing, boring even, moment with him. I don't think he is spoiled - its just that sometimes when he is driving me nuts and making me mad, I can actually appreciate the normalness of the moment and feel so fortunate that I know that. It is difficult to put into words. And our story is more the exception than the rule. Most people with NF are not much affected by it. They may have CALs and later in life a few bumps. That's it.

I really do know how hard this is for you right now. Whatever you are feeling is okay to feel. You have the possibility of a wonderful life together ahead of you, please try and look past her NF (but not ignore it) and really embrace this wonderful opportunity to parent your child.

Best wishes,
Una in Oz
Mum to Dylan (18) and Nathan (15) NF1
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Re: NF possibility in newly adopted girl

Postby diera » Fri Feb 12, 2010 12:42 pm

Hi Chele63,

So sorry this is happening, I know it's scary, but hang in there.

About the testing - we see Dr. Greenwood at UNC, who is one of the more well-known NF doctors, and he doesn't push for the test. He says that what you really want to know is not 'does this child have NF?', which the test can tell you with some degree of accuracy, although not perfect accuracy, but 'what is the prognosis for this child?' which right now there's no good way to predict because it's not all a function of the NF mutation. If the test came back negative on a child with many cafe au lait spots, the doctors would probably still want to follow her carefully because the test does miss some mutations (especially since you don't have her family history); if the test came back positive the doctors would want to follow her carefully ... so if you're going to follow carefully anyway, what good does the test do? That's his reasoning, and while I initially wanted my daughter tested, I realized after talking to him that it's not going to tell me what a parent really wants to know so it may not be worth it.

I recently took my daughter in for her checkup with him and he was telling me about one of his long-time patients who just headed off to start dental school. My daughter is only a little older than yours and covered with cafe au lait spots (which, if it makes you feel any better, her USA-based pediatrician missed completely) but Dr. Greenwood is very pleased with how she's doing and has said that her number of spots doesn't indicate anything about her ultimate prognosis. I hope this helps a little.
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Re: NF possibility in newly adopted girl

Postby Orangecera » Sat Feb 13, 2010 2:13 am

I know you must be very shocked by this news you have just received. You are going through the same stages of shock and grief that all parents of children with unexpected problems experience. There is nothing wrong with your feelings, they are very normal. You have already received some wonderful advice that I agree with completely.

Now just a couple more things. To repeat - you do not know for certain if your beautiful daughter has NF (or any other serious genetic condition) so do keep that in mind. Another thought - sometimes Cafe au lait spots appear quite suddenly, so it is actually possible that her doctors in Russia "missed them" because they were not there when she was examined by them.

I am not sure how much research you have done on NF, but as another poster implied, randomly searching the internet is perhaps not the best place to start. It really does have a lot of the "worst case" examples right there in shocking detail. NF is actually a quite common genetic disorder. NF type 1 (very likely what you are dealing with here if you ARE dealing with NF) affects about 1 in 3,500 people. About half of these have no family history and are considered a "new mutation", and about half are born to a parent with NF. (People with NF have a 50/50 chance of passing it on to a child.) Among people with NF most what is referred to as a "mild case". This means that they have no serious medical complications and perhaps mild to moderate amounts of the "cosmetic" problems of NF. I am fairly certain that the pictures you saw that shocked you so much are not people with "mild" cases.
If it makes you feel a bit better to hear a personal story, there are 5 people in 3 generations of my family with NF. We all have mild cases, and are very healthy, happy, active people. We are all married and college educated (except my 15 yo niece - who is always on the honor role at school- in spite of speech and language delays as a toddler). My brother and I each have 4 children, and of them, only my 1 niece has NF. Through the Children's Tumor Foundation (who hosts this bulletin board - and was formerly known as the National Neurofibromatosis Foundation) I have met many other families affected by NF. Many of them have similar stories to my own family. A few do have more seriously affected family members, but they find strength in being able to share with all of us. And as with people affected by dozens of other chronic health conditions, they almost always have a great attitude toward life and are amazing in their resolve and strength to endure.

You have done a beautiful thing by adopting a child. I am sure you are going to be wonderful parents for her. It sounds like she is developing and thriving just as she should (and even better than expected!) Keep on doing all the same things you have been prior to learning this new information about her. Who she is, and who she may become have not significantly changed just because she may have NF. Do not treat her any differently (other than keeping recommended Dr. appointments) than you have been treating her, and don't change your prior hopes and dreams for her. It is very likely they can all still come true (or as many as the "average" parent sees come true with their "average" children :).

God Bless your family!
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Re: NF possibility in newly adopted girl

Postby Chele63 » Sat Feb 13, 2010 11:06 am

Thanks very much to all of you. I will learn all I can, try to be patient and wait and see, and try to not think of this in harsh terms. I appreciate you taking the time to answer and help me feel a little better. Jackie is a little cutie! She is always laughing and smiling, blond hair (but not much of it!) and beautiful blue eyes; charms everyone she meets.

Thank you!
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Re: NF possibility in newly adopted girl

Postby Vandaar » Sat Feb 13, 2010 7:35 pm

Jackie is a good name.

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Re: NF possibility in newly adopted girl

Postby Tygermouse » Mon Feb 15, 2010 8:17 pm

I just wanted to say hi, and to tell you my husband and I adopted a four and a half year old from Taiwan just over a year ago. He will be 6 this month. I myself have NF which is why we opted for adoption. We named him Jakob, but call him Jack. And man did he pick up english fast.

I hope all goes well for you and your little one.
Ich bin klein mein Hertz ist rein sol nehmand drin wohnen als Jesus alein
I am small my heart is pure no one should live there but Jesus alone
Crazy is one more cat than you already have.
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Re: NF possibility in newly adopted girl

Postby joeysmommy » Wed Mar 17, 2010 4:22 pm

I have NF and I went to college, graduated in the top 10% of my class! I have a degree to teach elementary education but am a stay at home mom. I'm married to a very handsome man....sometimes, people say he looks like Brad Paisley.

My 2 year old son has NF and has had many problems but he's going to be just fine. Sure he won't play football for the 49'ers, but I really didn't want him to play such a rough sport anyway. With the mouth that kid has on him, he'll probably be better at litigation.

My mom has NF and can prepare a dinner party that would make Martha Stewart green with envy. She has a huge party every year and invites all her friends and family. Mostly friends though.........She has about 100 people show up each year. She has been married since she was about 20 years old....and together, mom and dad are phenomenal!

My grandpa who lived to be 73 fought in World War II, worked ???, (forgive me because I forget where he worked and what he did) and after he retired he started a farm. He had about an acre of property all ready to go. He would till the ground, seed his soil, and tend to his crops more frequently than most people tend to their farmville crops today! He was a wonderful husband to my grandma for a very long time........

My point is~~~ People with NF are just people. We all live relativity normal lives, go to college, the military, work hard, get married and are happy individuals. Sure there are bumps and bruises along the way, but don't we all have something that haunts us?
At some point you need to stop living the life you've been given and start living the life you want!
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Re: NF possibility in newly adopted girl

Postby suzannedelynn » Tue Mar 30, 2010 10:19 pm

Dear Chele, I haven't been on this web site for years, not since this web site saved my life and my sanity in dealing with the fear of discovering my precious foster baby had NF. I got Mickey at 10 days old, I was 46 yrs old and yes, he had a funny brown spot on his abdomen. And yes, again, the Dr. said we should look into it, when he was a little older. Of course, I couldn't wait, I searched the net, clinics, etc. I cried to my friends, and nobody seemed to understand. Then I discovered this web site and it really put perspective on things. I realized I was lucky that Mick was a precious, happy and adorable baby who just so happened to have NF. I also believed that God knew my husband and I could help Mickey over whatever hurdles NF1 was going to present. We have always been grateful for having Mickey in our life, over much struggles with Human Services we were able to adopt him and his brother, at age 5. He is now 13 and all NF does is make him special!!!!!! Mickey Acosta was an NF Hero in 2010 and check out his site! We are so proud of him and NF is just one aspect of him. Chele, be brave and strong for your beautiful daughter. Give thanks everyday that God provided your daughter with a caring mother. Where would she be without you. Peace and Best Wishes, Suzanne
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