Ask Kate! How typical is autism in neurofibromatosis patients?

Рет қаралды 2,700

5 жыл бұрын

In this video, Kate answers a question about NF1 and autism spectrum disorder.
Do you have a question about neurofibromatosis? Ask Kate!
This video answers questions left for Kate on this video:
www.youtube.com/watch?v=URgoi...
Kate Kelts, RN, BSN, is the Patient Support Coordinator for the Children's Tumor Foundation. Submit your question in the comments below, or email Kate at kkelts@ctf.org. Click here to subscribe, and click the bell so that you receive alerts when new videos are posted: kzfaq.info?s...
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Note that CTF is not a medical center, and we cannot give direct medical advice. This video series is for informational purposes only, and is not a replacement for diagnostic or medical care.
What is the Children's Tumor Foundation?
Children’s Tumor Foundation (CTF) began as the first grassroots organization solely dedicated to finding treatments for NF. Today, CTF is a highly recognized global nonprofit foundation, the leading force in the fight to end NF, and a model for other innovative research endeavors.
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Пікірлер: 19

@ventrust7507 Жыл бұрын

Being autistic has many good things about it. Applied Behavioral Analysis ABA is bad! Occupational therapy may be helpful and customized education is best. Protect your children’s agency and provide the appropriate resources. Functional labels are no longer used. Identity first language is best for autistic people. It’s just a difference in thinking. I see allistic people needing resources too.

@MustyBastard 5 ай бұрын

I was a pretty outgoing kid, but after years of bullying, social exclusion and torment, I became socially awkward as a result . After so many bad social experiences, I just started to assume that every social experience would be a negative one and for the most part they were. As a kid, I was always bullied more for my optic glioma than I was my NF. It wasn't till I was 30 that the bumps started all over my face and now my quality of life is worse than ever. I don't like to think that I have mental health issues, I just have challenges with the way people treat me. No matter how many pills I pop, this will never change that, that is why I have always stayed away from pills. I think when it comes to diagnosing kids with autism who have NF, this should be considered.

@Coldnfallen Жыл бұрын

Please please please... Be vigilant with your kids. ASD in women is not easy to diagnose so many times because it presents so differently. ASD without intellectual delay or disability can be just as detrimental to a kiddo. It can cause feelings of inability to fit in. It can cause poor school performance. It can cause serious issues socially later in life.

@xChristinarawr 5 жыл бұрын

Thanks for responding!

@drrush3421 4 жыл бұрын

Have one of these kids as a paediatrician myself thanks

@laurenwelch4196 2 жыл бұрын

As a general question first, is it common for kids of parents with NF1 to be more/less severely affected? I have NF1 (as far as we know, random mutation), but a fairly mild case. My almost 3yo son was dx with NF1 at 8 weeks (5 weeks after I saw his first spots), and has optic gliomas which I never did. He also has recently had ASD testing and did receive a dx of ASD.

@simona_sigmund1001 Жыл бұрын

Hey, so I will start off by saying that I'm not a doctor, but I do have NF1. I got my NF1 via mutation so I'm the only member of my family with it and I am considered a mild case - my doctor said a 2/10 in severity. However, I was advised to be cautious if I decide to have kids as they have a 50% chance in having NF and it will almost definitely be more severe than my own. I'm so sorry hearing about your son, but he will probably have it affect his life more than you will. But I dont want to instill fear or hopelessness in you - we can all thrive and live very happy lives with NF. Thinking of you 💜

@MustyBastard 5 ай бұрын

Optic Glioma was the root cause of my bullying as a child. I never really ever got bullied for my NF even though I was always worried about showing off my spots to other kids. Had really bad head aches because of it. Had 4 or 5 surgeries before I was 5 to release the pressure on the optic nerves . Pretty much blind in one eye at age 38. As a person who also got NF through a random mutation, why on earth would you ever have a child ? It crazy that people do this. I dated a girl when I was 19 that had it as well (just nf) and she did not even know what it was - probably had the IQ of a 12 year old at most because she was like 3rd generation NF. Her grandmother had it and mom had, all her nieces and nephews had it. They were all not well, kids in the hospital all the time. I truly feel sorry for your son. Having messed up eyes is one of the worst things you can have. I don't know how bad it is, but nothing is more hamulating than not being able to make eye contact cause your eyes are messed up and people are always trying to look around at what you are looking at, but you cannot control the direction of your eyes. Really wish you had a daughter, its hard enough for boys being normal. at least if he was female, he could probably have a mildly normal daiting life.

@MustyBastard 5 ай бұрын

@@simona_sigmund1001 Yes, I wish these idiot doctors would teach these NF people who want to have kids the basic about recessive and dominate traits. Every time a person who has NF decides to have a child, their offspring will bring more and more recessive (negative) traits forward. Its the same process that occurs with inbreeding. I've witnessed firsthand families where there was multiple generations of NF and with each subsequent generation, IQ dropped substantially. As well, more things like Optic pathway glioma and Malignant peripheral nerve sheath tumors occurred as well. Do the world a favor, if you have NF and are able to secure a proper profession/ livelihood, adopt. NF1 is the most common inherited neurological disease, but it does not have to be. Every man I've known who had this condition, certainly struggled with finding a mate. So for the most part, it is females with NF allowing this to happen.

@federicomanuelolveira7658 4 жыл бұрын

I understand that ADHD is also typical.

@Laylascha88 5 жыл бұрын

What is the typical cafe au lait look like in nf1. Where will they be located. My daughters are all on her torso front and back minus one large one on her neck. She is being seen in April to check for nf1.

@sarahsmith2964 5 жыл бұрын

They can be anywhere ... my son had them at birth everywhere ... he got referred because he had "more than 6 bigger then a dime" we were told that was a red flag. Good Luck

@Laylascha88 5 жыл бұрын

@@sarahsmith2964 hey, did your son end up having nf1? Did they test him? Or did he have two symptoms? My daughter so far has 15 spots bigger then an inch across. All very jagged boarders. I'm trying to stay sane until April. Worried now about my boys and myself as I have a few spots and a spot similar to a nuerofibroma. We will see though I guess. I will have to update when I have one.

@sarahsmith2964 5 жыл бұрын

@@Laylascha88 hi...yes my son does have NF1 as well as non verbal autism, he was diagnosed with both at 15 months - he is now almost 9 ... feel free to PM me on FB ... I can tell you what I know.

@childrenstumor 5 жыл бұрын

Hi Kayla - please have a look at this resource on cafe au lait spots, from the CTF website. Good luck at your April appointment - we're here to help! www.ctf.org/images/uploads/PossibleNF1_CafeAuLaitSpots.pdf

@THGCatIV 5 жыл бұрын

I have NF1 and i have cafe au lait spots all over my body. Some have risen up in random spots.