Behaviors/Emotional Needs with BWS

Hi, I am having a struggle with my son. My son is 5 years old and has BWS. He was diagnosed at birth. He has had leg flare ups and take him to all necessary appointments (blood work, u/s and physical) every 3 months. He is such an smart and sensitive boy. He is full of love and has good manners. He is in Kindergarten and he has been in school for 3 weeks now, his behavior is not following directions, talking out of turn, scribbling through work. I have talked to my son and taking his belongings away so he understands this is not how to act in school. He was not like this at PRE-K or at home. I don't know where this is coming from. From readings I have found that behaviors and emotional needs affect some kids with BWS, but have not really found anything that has got my attention. Should I be concerned, what should I do? Has anyone gone through this. I need help or advice. I have no one to really talk to. The doctors here that follow his care really don't know a whole lot all I hear is there has only been 50 kids diagnosed that they know of in the state of Arizona.

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  • It helped us to get an evaluation from a developmental pediatrician. It was so helpful because they found out how Joshua learns best and were able to get him behavior support--just like they would if he had autism. Do you have a Children's Hospital near you. If not, I highly recommend the developmental pediatrician at Hershey Medical Children's Hospital in Hershey, PA. If you are willing to make the trip up here maybe they could have you stay at the Ronald McDonald house.

  • How old is your son Joshua? If school-aged, how is he doing? We have a children's hospital, and his oncology dr seems not to worry so much but always says they are learning more about BWS since it is a rare disease. Just some stuff does not sit well with me. I have to do what I need to do for my son. I will look into the Ronald McDonald House. Is that where you took your son? When did you find out about your son having BWS?

  • Joshua is eight years old and just started 3rd grade. His behavior, learning, and sensory issues all stem directly from BWS. Until we got help from Dr. Ramer, we thought we were going to pull our hair out. Dr. Ramer (the Hershey Medical Doctor) might have some published studies that are more up to date. No it is NOT autism---but there are similarities in behavior and sensory concerns. For learning he is a concrete thinker. That means he needed extra support to learn how think abstractly. For behaviors, he qualified for a Behavior Support Consultant (BSC) and a Therapeutic Staff Support (TSS) which is like an aide at school. He had goals related to building social skills and anger management. Some of his behavior (or misbehavior) was related to his concrete thinking. He also has sensory concerns like not wanting to be touched or avoiding loud noises. He has been in Occupational Therapy for those. He also gets speech and physical therapy. I've seen Joshua grow and develop more each year. I wouldn't hesitate to get the developmental evaluation.

    He likes school more now and he has improved significantly. I'll try and put a picture of him up.

  • His behavior, learning and sensory issues stem directly from BWS? That is related to BWS? My son Sebastian has a hard time to focus, he gets really excited and forgets everything else that he needs to do. My son every now and then get angry and he is sooo sensitive to everything. We have to watch how we talk to him and about others. He cares soo much about everyone else.

    I have my son's 3 month appointments next Tuesday. I am going to definitely let the dr know what I am learning from others and see what can of help we can get for my son.

  • Great first step. I never gave up on Joshua--even when people said what he was going through had nothing to do with BWS. I kept looking for physicians with more information. BWS is rare so some of them just do not know everything about it. Stay away from doctors who pretend to understand the syndrome...you can always tell. I was so glad to get help from Dr. Ramer at Hershey. I wish I had found her sooner.

    Sorry about the picture. I can't figure out what I'm doing wrong.

  • There are no valid studies that link behavioural problems with BWS.

    However children with BWS may also have problems that are not linked to BWS, as any other child would.

    The important thing is to get some advice from a paediatrician who can refer you for tests if necessary and get whatever support your child needs. Its easy when your child has a "syndrome" to think that everything is due to that syndrome. Whether it is or is not doesn't really matter...what matters is getting your child help if they need it.

  • That is what I read but they mentioned autism. I know my son's pediatrician told me kind of hard to diagnosis because they are still growing and don't know if linked to BWS or just like you said like any child would.

    Thank you for your reply. Nice to hear what other people have to say or go through. I have no one to talk to about it and there are no support groups here. All doctors my son sees state to go online for support. But I am the kind of person that likes to meet people and talk in person. I am glad to know I found this site and able to see that I am not the only one,,, sometimes feeling like that because no support here.

  • There was one very poor study done many years ago that linked autism with BWS but it wasn't statistically valid and the results have never been repeated. Because autism is so common there are bound to be some children who have BWS who also have autism, or any other childhood problem for that matter.

    I'm sorry you feel so alone. Please ask any questions you like here and we will try to answer them. My son is now 14 and great. He has some difficulties with school but they are related to another syndrome that he also has as well as BWS. But he's doing just fine. But getting tested for any problems is a good idea as early support is better if its needed. Take care x

  • Thank you so much for the replies. It helps me to know there are other parents out there with the same issue just some differently. My son has his 3 month appointments next Tuesday so I am definitely going to be asking lots of questions. I am thankful I have found this site. It has really educated me and what I need to do for my son. I thank you again :)

  • Hi.. Have you talked to your son's teacher? Is he having issues with other students or even his teacher? This could cause your son to develop psychological problems. My son went to a catholic elementary school & believe it or not some of the nuns picked on certain kids & they would do this "picking" in front of the whole class. I'm not saying that it would only be towards my son with BWS but a kid with buck teeth or crossed eyes.....lowering their self esteem. Definitely have a discussion with your son's teacher. My son never told us if other children were pointing out his tongue. We found out from other sources. You need to find out if anything is going on & put a stop to it. My son just turned 40 & some of his doctors will still say that they never heard of BWS or they've heard of it but really aren't familiar with it. Make them research BWS if they are going to remain your son's doctor. BWS was rare when my son was born in 1974 but now it's 1 in 15,000 births. Just an FYI...my son attended a college prep high school, & also attended college & graduated with a 4 year degree in sports science. Our BWS kids ARE smart, loving & very caring people. He's been through a lot in his 40 years & still has to deal with poly cystic kidneys, hypertension, a pituitary tumor. But he is being watched carefully. So far, so good! He has a 10 year daughter that is not only very healthy (no BWS), but she is beautiful inside & out. He always says that she is the best thing that has ever happened to him!! So, life will get better for your beautiful son & for you. Bring out the best in him with your love & guidance. God Bless

  • Hi! Yes I have talked to my son's teacher. She expressed to me that Sebastian is so smart and his problem is he is too concerned about all his friends in the classroom. He also feeds off other kids in the classroom. She tells him that he needs to worry about himself and take care of Sebastian. He is having a hard time following directions. So I have tried working on different things, but it is getting frustrating because I think maybe there are other things going on, like he don't like to color, he loves math though. He rushes through his work, so during homework time at home I will sit with him and he does wonderful work.

    My son was picked on last year in Pre-K, it was sooo unreal to know how cruel children can be at a young age. My son would never tell me either, he would bring home drawings and then would tell me what he drew and they were pictures of him with a long line out of his mouth and told me that that is what the kids said he had a long tongue... and would see the kids in line sticking there tongue out at him... I did meet with the teacher and it went away... I don't know if the threat of going to the school district or how I approached her, but it worked.

    Your son is 40 now, that is awesome to here he is doing good so far and has a daughter with no BWS.

    One of my son's doctors said that when he hits puberty he can develop testicule cancer? Have you heard of that?

    My son had his 3 months in June of this year and for the first time they laid him on his belly to do the ultrasound and we got a call stating it was high alert and need to see a urologist. The dr stated they found cysts but did not know how serious it was... When we saw the urologist he stated the cysts were immeasurable and just keep doing what we are doing by taking him every

    3 months. That was really our first scare..... I think that is why I have been trying to research and reaching out to people about BWS because it seems like doctors may not know either... I just need to educate myself more.

  • He probably just needs to adjust to expectations of new classroom. You could always ask to meet with school social worker , if available about your concerns. Or speak yo his pediatrician. . It's my understanding that BWS doesn't effect behavior and mood - may just be developmental or adjustment issues.

  • If your little boy has never displayed any of the behaviours before, it may be that he is just struggling to cope with the demands of big school. Be positive about school and give him lots of reassurance. Keep in close contact with his teacher. Focus on his good behaviour and give him lots of praise.

    It may be nothing to do with BWS.

    Good luck. I hope your little boy starts to enjoy school very soon.

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