Seeking Help - Huntington,NY

I'm so glad you're reaching out here! I understand where you're coming from. Our son was born at 27 weeks. He is 3 now. He has had his share of medical problems, and I know how hard it can be. I am not familiar with Noonans Syndrome, but I recognize this behavior - just like my son. He has Sensory Processing Disorder. I have talked at length with our medical professionals, and we really think there is a connection between spending so much time in the NICU, and having SPD. It only makes sense due to the fact that in the beginning of their life, they were deprived of the necessary sensory input. A lot of SPD symptoms mimic OCD. I would suggest meeting with the pediatrician, and getting a referral to an occupational therapist. They can evaluate your son and help your whole family. Also, I would check out the book "The Out-of-Sync Child." This is the most helpful book I have ever read! It even has checklists in it that you can bring with you to the Dr. and/or therapist. Since your son is 5, he is also eligible for assistance through the school system. If you get a good therapist, this can work out perfectly! However, we have stuck with our private therapist. She has saved our lives! Also, I try to get video of our son, and then I have proof to back me up, and people don't think I'm crazy or exaggerating. Best of luck to your family, and feel free to message me.

Hi. I think because your son was a preemie and has had so many health problems, that he needs to have a developmental/functional assessment. Preemies, even at age 5, are often behind in development from their peers, but at this age, that should be leveling out. It sounds like the poor kid has been through so much. I don't know what Noonans is, but with all of your kids' health issues, I think a professional child developmental specialist is in order here, to help give you parents an idea on how to cope iwth the tantrums and stuff, and see if he has something medical that is causing the behaviorial outbursts.

I was a professional Child Developmental Specialist. In my opinion, parents of kids with special needs and special medical needs, need extra help and support or they burn out. No one has unlimited patience, even if you did have the years of infertility. I thought I would be a perfect mom because I went through years of IF treatments and could only get pg with IVF. But ha! I still have tons of faults and limited patience. Hang in there. Write an ABC chart - Antecedent (precursor to tantrum) Behavior - (kicking?yelling?etc), Consequence (time out, rolled eyes and said stop its) etc. Chart your own kids' behaviors for a few days. Be honest about his and your reactions. Then analyze your ABC chart to see if there are patterns to his tantrums. For example, does he freak out when his blood sugar is low, like right before dinner, or does he tantrum only because he is not getting his own way. It is always easier to help a family as a professional if the parent takes notes like this, and easier for the parent to figure out what is working and not working when it is written down.

Hi B.,
I'm sorry to hear about everything that you and your family are going through. Was Harrison diagnosed with Noonan syndrome by a geneticist? If so, have you subsequently had an opportunity to sit down with that person and address your recent questions and concerns? Have you had an opportunity to connect with other families who have a member with Noonan syndrome? Please let me know if you didn't connect with your geneticist and would like a referral to someone who is knowledgeable about this condition. All the best, J. (genetic counselor)

You and your wife have a lot going on, so do your children! With all the medical issues I won't comment on my thoughts b/c I have no idea, but I will say, stay strong! If you are losing your patience, that does not make you a bad father...we all lose our patience every day over little things! With all that you have going on, I'd imagine many fathers would lose their patience a lot - as well as moms. Take a break! Regroup and energize and then confront ALL the situations again with a clear head. With all the medical issues, he is still a 5 yr old little boy...

The behavior you described is not OCD..more ODD (Opposition Defiant Disorder)

However, these are also symptom of Noonans:

BEHAVIORAL/SOCIAL
• Chronic crying in infancy
• Overly Sensitive
• Stubborn
• Irritable
• Obsessive behavior; liking of routine
• Overactive
• Underactive
• Squirmy/Fidgety
• Withdrawn/Depressed
• Extreme mood swings
• Aggressive behavior
• Short attention span

http://www.killerbanshee.com/family/medical/noonanslist.html

There are behavioral specialists that can help lessen these behaviors in order for him to function in all settings and be productive. Cognitive Behavioral Therapy is wonderful for this.

Nanc

I'm so glad you came here with your concerns. I would definitely seek counseling on how to help little man cope with the disappointments of life.

Growing up we had a kid in the neighborhood who had many physical problems and was on medication and his mom would often send him to play with us outside. He was just aweful to the rest of us especially if he didn't get his way. Often we would try very hard to include him in our games and play. Eventually once his mom decided that he would get no further special treatement from his siblings in the house (some older and some younger) he began the process of learning how to be more agreeable with everyone.

I'm not saying this is what is happening with your little boy but it does take a village and you both as parents have to hang in there and help him work out growing up. Every parent goes through this but it is harder with children with special needs because they know your buttons all too well.