Special Needs Behavior and Development

Therapist Questions & Answers - Special Needs & Medical Diagnoses

I have a toddler who just turned two. He was born with a neuropathy disorder. He doesn't feel pain at all in his entire body. He has done unlimited amounts of damage to himself, including burns, lacerations, bruising, concussions, etc, all due to the fact that he just goes and goes till bed time. He climbs up on things and jumps, he hits walls and tables when he is mad, he bites off pieces of his tongue when he is mad or the insides of his cheeks. I have used lots of different methods on calming him down, but he doesn't listen. I've used distraction and been persistent with it. I don't spank any of my children because I think it is the cruelest form of punishment and it sets a really bad example on behavior. I've tried time outs and using a stern, but not aggressive voice.

He doesn't listen like my other children do. He really wears me out. Not only do I have to protect him from the damages that he causes or could cause to himself but he is really unruly mostly due to the fact that he doesn't have limits. When I watch him compared to my other two children, he is very different (e.g., the jumping off the table and falling on his face. He doesn't feel it like a normal child would; he just gets up and runs off, laughing, before I can even get to him to make sure he's ok). What can I do to make him somewhat of a normal toddler?

Your son has such a rare disorder that very little is known about it or how to manage it. I can't even imagine how difficult it must be for you to care for and help protect your son. It sounds like you have tried all the right things with your son. Developmentally many 2 year old boys are "daredevils" anyway, they do not yet know limits or boundaries and are not yet capable cognitively of understanding safety risks for things such as jumping off a couch or touching a hot stove (even for kids who do feel pain). Even more difficult in your situation is that because your son cannot feel pain he cannot make the cognitive connection between the pain of doing one of these acts, thus preventing him from doing it again. Because your son does have a diagnosis, he may be eligible for Early Intervention services in your area, even if he is not showing a specific developmental delay at this time.

His diagnosis alone makes him at risk and he may qualify on a behavior assessment tool such as the TABS (Temperament and Atypical Behavior Scale) which you could request that they administer. I would definitely call the resource in your area (940) 322-0771 Ext. 175 and seek an evaluation for your son. It would be helpful if you could have a developmental specialist come and work with your son and family to set up a behavior plan for him and help him begin to learn some boundaries to make him safer, prevent injury and give you some relief.

Just to clarify, the TABS is a testing protocol (testing instrument), not a program. It is sometimes used to determine eligibility for Early Intervention Services. It is a parent report questionnaire dealing with behavior and temperament in young children. Your local program looks like it's called Early Childhood Intervention. Sometimes with rare diagnoses parents' have to be persistent in seeking and finding the kind of help they need, but early intervention is a good place to start. I also found a few articles dealing with the condition which you may have already seen before. I am wondering if there is a support group out there for parents' of children with this disorder, but haven't found any info yet. I think it might be nice if you could speak with another parent such as the ones mentioned in the articles in order to gain some insight and support from each other.

I've often wondered the same thing about support groups. Most of my info that I do have has been straight from theses on the internet. Dr. Marts at Cooks Children's in Dallas, Tx has done his own set of research because he said that he has seen patients come in with no feeling of pain in their hands, feet etc. but never their entire bodies. It's difficult as a parent to recognize common household objects that can injure a child. I have a five year old and a soon to be four year old as well. I have to constantly get my two year old off of my oldest son for playing too rough. He has incredible strength for a two year old. When he was two weeks old, he was sent to Cooks Children's in Dallas for "Failure to thrive." They had diagnosed him with being born without a "sucking reflex" which later we had discovered that he has CIPA and he has no hunger pains. Thankful that both my other children have very good eating habits that they have taught him to sit and eat with them at the table. He mimics all the things my two other children do. Now all the things that they have been doing through their toddler years, I have to correct because it has the "monkey see monkey do" effect on my 2 yr old. one of my biggest concerns about the body temperature thing is that we do live in the state of Texas where temps do reach over the hundred degree marks. We do keep him cool in the summer, but we have made lots of efforts on finding "indoor" activities for the whole family. Its really discouraging trying to find ways around all the things that could injure him...EVERYTHING is potentially dangerous to him even his own foods.

From what I saw the only support group was in Japan, where they said there were around 200 people with this condition and I could not find a direct link for it. It seems as if fewer than 50 cases were in the USA, which accounts for the lack of information. In my searches, I did find a few more links that may be of interest if you haven't already seen them. I did find this link from the UK that may be of help in perhaps contacting other families dealing with CIPA. And this Blog written by a Mom whose daughter has a similar condition...not sure if you can find contact info for her on there or not. Another article from 2007 here might be helpful. 

 

Therapist Questions & Answers - Special Needs & Medical Diagnoses

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