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Behavorial Problems and NF1

aimee121477
0 Recommendations

Does anyone know if NF1 is linked to behavorial problems in children?

Explore topics in this discussion:

Anxiety Dyslexia Ritalin Depression Mental health Concerta

24 replies

mom2001

As far as I know, it can happen (as all things seem to in NF1), but I think the percentage is less than 1/2.

DrNiblik

I had behavioural problems as a child. As a matter of fact, I STILL have to watch myself. I don't know for certain it is directly related to NF though.

TONYGILL

Some people with NF need to be told in different ways to learn. I would also say, you sometimes have to give rules and instructions in different ways. Therefore behaviors then could be controlled by those methods.

I would ask myself: are they being bad? Or didn’t they understand me? So whose problem is it? “Theirs or mine”

It just a different way of looking at what is happening.

Good luck Tony

granny58

HELLO AIMEE121477,

I KNOW HOW YOU CAN GET SOME INFO ON KIDS WITH NF ONE. YOU CAN GO TO THIS WEB SITE AND FIND SOME THINGS OUT IF YOU WISH TO. GO TO THE CHILDRENDS TUMOR FOUNDATION. THERE YOU CAN FIND OUT A LOT ABOUT NF AND CHILDREN'S WHO HAVE NF. IF YOU HAVE ANY PROBLEMS DOING SO. JUST LET ME KNOW AND I MAY BE ABLE TO FIND SOMEONE TO SEND YOU SOMETHING ABOUT IT. YOU MAY EMAIL ME IF YOU WISH TO AT GRANDMA19691@SBCGLOBAL.Net I DO HAVE A GRANDSON WHO HAS NF ONE TO AND HE HAS A LITTLE PROBLEM LEARNING TO. JUST LET ME KNOW. YOU THAKE CARE NOW AND GOD BLESS YOU ALWAYS.
GRANNY58.....Rose,

13amyers

I am 13 and I have a learning disability. I am going into 8th grade and have had trouble in school since 3rd grade.Mom kept telling them I was having trouble but they never saw it. I would get Fs on my tests and mom would ground me for it because it was happening all the time. Finally mom got them to agree to test me and found out I am 2-3 years behind in reading. Its very hard for me to focus and remember what I read.Math has become a little easier for me.I got a b this year.
As for behavioral problems....mom and i both think I have ADD. We have gone to a place to see if I can get tested and all they want to do is put me in play gropups for therapy. I told my mom a few years ago that I have anger issues and I fly off the bat very easy. It doesnt take much to set me off and I openly admit that. my brother is bipolar, ADD, and Aspergers. Im wondering if Im not any of those either.

aimee121477

Thank you for all of the replies. The reason that I ask is because I am having a very hard time deciding if Kyle is just being a typical 2 year old or if there is really something wrong. Sometimes he gets so incredibly hyper, to the point where it is literally impossible to control. He starts spinning and screaming and running around. It does not happen very often but when it does I worry that he will hurt himself and I get so sick of yelling at him, time out does not work. Im not sure what to do...

KayCe234

Hi Aimee

People with NF are more likely to have ADHD than the rest of the population. My Max has ADHD, OCD and anxiety. Dealing with a child with all these things is very different than a child without. We do disipline and teaching totally different with Max than we do with the twins.

I was one of those who was very against Meds, but we finally gave in and put him on Concerta and it has been a Godsend. I do feel meds need to be used with behavior management and not seen as a cure all. Some people put their kids on the meds and thats that. I feel you need to use the meds as a tool to help retrain the kids to deal with the ADD, etc.

NF inc also has alot of information for you if you check out their site - www.nfinc.org - you may also want to check out sites on ADD. Treating a child with NF and ADD is the same as treating a child with just ADD.

I'd be happy to talk to you about it through the board, email or on the phone.

DrNiblik

I just want to say to amyers, well done on your B in math! Good girl! My niece (11) also struggles with her reading comprehension, writing, and speech, but does pretty well in math. Keep it up, little one, it sounds like you're doing great!!! :-) As for the anger... well... you have a lot to be angry about. The fact that you're aware of it is an excellent start. I have anger issues too, which my doctor said is actually depression, and have been taking Celopram (sp?) that has been helping with that a lot. Hang in there, Baby Girl, and know that we are all very proud of your B in math.

KayCe234

13amyers - my son Max is 12 and heading into 7th grade let me know if you'd like an email pal and I can set you up with his email. Sounds like you guys are going through some of the same things.

sallyann

hi this is Enoch my son he have nf1 he is a loving boy he love playing games and making new friend but he has a very bad temper he get mad very easy I love him very much.

awfranks

My daughter is 6 and has a very mild case of NF1. She has been having problems with her sight words from K and 1st grade. She does really well on tests where she can take her time. I have been working with her and she does seem to have trouble focusing and remembering. Some days are better than others. I have started wondering if it is due to the NF. I think she is borderline ADHD but has not been diagnosed with it.

ashernietiffany

all three of my kids have adhd /odd my youngest has pica .my older two do well inschool my youngest is having problems still.their dad doesnt seem to care he blames me and i say he left me bc he couldnt deal with it anymore he said he wanted a normal wife who can have normal kids .bu i told him no one normal and no ones perfect

wildflower

My adult daughter with NF1 has had learning disabilities all her life. She is applying for disability now, and her therapist believes the strongest point may actually be her learning disabilities. I contacted the Children's Tumor Foundation recently to ask about NF1 and learning disabilities, and their science person said,

"There has been a tremendous amount of research on the issue of Learning Disabilities and NF1, and it is now estimated that 60% of those living with NF1 also have learning disabilities. As research continues to progress we are learning more and more about a spectrum of disorders that may also impact one's behavior."

Hope this helps.

PVA

about five years ago when my son was diagnosed with adhd and aspergers i was told that nf does affect the behavior.
this was at hasbro's childrens hospital.
i have nf and knew since i was 13. did not know til hasbro's that nf affected the behavior.

laney2015

My son also has problems with his sight words. He actually had to repeat first grade. I don't think it is ADHD, he just can't focus there is a little trigger in his brain that just doesn't want to memorize. He has real trouble with memorization.

Missa

All material on NF1 that I have read shows that there are behavioral issues with most cases and learning disabilities. We have to remember that NF1 is not only tumors and cafe' spots but the first part of the word is Neuro which suggests that there will be issues neurologically (in the brain). I just had a appointment with a phsycologist because of some ongoing bahavioral issues and other learning issues I have seen continue now that she is in the first grade and that doctor suggested I have her tested at school and placed on an IEP. I have a son that doesnt have NF1 or 2 but he has been on meds since he was 4, for ADHD, ODD and a couple of years ago for OCD. So it was bound to happen at some point, but her NF1 makes her more succeptible. She has problems with patterns in math and also dyslexia which was explained to me can be apparent in NF patients. Let's face it any child these days can have behavioral issues because it has been a growing problem that no one seems to know why, but then you throw NF in the mix. So if you suspect anything like that, it is better to have your child tested and work with it now. Rather than leave it alone and then it be too late.

mgar

Hi Aimee, The best advice is "DO NOT USE ANY MEDS" to control him. This will lead to disaterious long term effects. My boy was "crazy" when he was little, the best part of it they will grow out of it! Dont give up keep being a mom and let him be a boy with NF this is just the way it goes! Also dont be fooled by people telling you he is ADD or ADHD this is a lie that people are told by their doctors! Doctors do not know much about NF trust me! The best thing to do is just go with the flow, I know it maybe a bit frustrating at times but you just got to let it go and bite your lip! If you need anyone to chat with during a hard time please feel free to email me!

mgar

Parents with children with NF need to knew a few facts about MEDS. Most medications given to children as well as adults with Behavorial Problems can produce new or even accelerate tumor growth! People with NF ages 0-24 should not take BH meds for this reason. The U.S. Military are the only ones with the studies in regard to NF. Doctors around the world are really shooting in the dark when it comes to NF. "Concerta" may be one of the most dangerious drugs to give to a child with NF it rasies blood pressure and may be FATAL! "Ritilan" will speed up tumor growth! If you or your kids are on these meds please reseach all side effects before using them. Seeing a Mental Health Therapist and using education and other sensory stimulation is strongly advised! Keep in mind children with NF will more then likley out grow OCD, HDD, ADHD. The meds will only help Parents, Teachers, and make doctors more rich at the expence of the childs short and long term physical and mental health. "DO YOU HOMEWORK" AND JUST DONT THINK THE DOCTOR IS ALWAYS RIGHT, HE COULD BE "DEAD" WRONG!

SNAPWINN3

yes my daughter has nf1 and she is hard to handle

jilliangail

Why isn't this information about the drugs out for parents to know? I think that the biggest reason is drug companies stand to loose money! This bothers me a lot. They wine and dine doctors and keep them believing that medications are the miracle cure for almost everything.

My son also was on medications when he was younger and the drugs were ordered by a NF specialist who obviously did not have this information 15 years ago. His personality was flat and he had ADD without the H but was withdrawn from the world around him. HIs NF specialist put him on Ritalin at age 3 to make him more responsive. Another doctor put him on Colonidine (I think) to help Ben with his sleep problems. All in the name of helping Ben with his NF problems. If I had known then what I know NOW it wouldn't have happened.

Now I hope all the specialists with NF KNOW this and do not encourage patients to medicate behavioral problems with a pill. There are so many other therapies available, I hope they come up with some solutions for children with NF (and adults!). I still tend to be impulsive at times and stick my foot in my mouth.

I have two children with NF and both have struggled with school and learning. I also did. Thankfully my daughter never took medication and we got my son off all medication (by his choice) by the time he was 12 or 13. Still, you have to wonder, what are the long term effects of being on drugs going to be years later?

It would be a good idea to research alternative methods of helping our children without the use of drugs. There HAS to be an answer.

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