Autism toe walking? Help

[summy32]

I have a 12 year old son with Autism, who has toe walked since he became autistic. He is now having major feet problems. His toes and ball of his foot are badly cracked. I have tried different creams, salves, etc. However, I can not put anything on during the day as he will pick it off and try to eat it. I try at night when he is asleep. I have heard that other kids that toe walk also have the cracked skin. Any ideas?

The other problem which really concerns me is because of walking on his toes he has put so much strain on his joints and above the ankles are extremely swollen. The one side is about the size of a golf ball. We took him to an orthopedist who said we have to get him to stop toe walking. His only solution was to do serial casting. Not possible with my son, and I tried explaining that his brain is causing this so after months of serial casting he will probably go back to toe walking. I am so worried about him, it seems to be harder and harder for him to walk and I worry that he will one day be unable to walk because of the swelling. He goes to a special school for autism and they have never seen anything like this swelling. They did say he seems to walk much higher than any of the others. Has anyone else experienced anything like this? Any suggestions??

 

[bookwormde]

find a new orthopeist who has at least some understaning of autism.

Also finding a sensory alternate maigh be possible, but that takes some real study

bookwormde

 

[vwlizard]

Talk to a physical therapist. THe toe walking may not be correctable, but it sounds like there should be some stretches they you may be able to do with him, so at least the calves muscle and ligaments won't become shortened.

 

[summy32]

Thank you for your help. I probably should look into another orthopedist. I was shocked at his lack of knowledge on autism. Especially since it was Johns Hopkins. I will check with the school about physical therapy and see if they can provide or suggest someone privately. His heel cords are actually not tight at all which is kind of surprising considering he has been walking like this for 10 years.

Anyone have any info on botox for toe walking. I'm not even sure who we would go to for that. We are in Maryland and would normally travel to areas like Baltimore, DC, Pittsburgh to see specialists.

Again Thank you for your help. This is the best community!

 

[krisnme]

I would quickly find a new Ortho. We are in Md. too and have gone to Hopkins in baltimore and Childrens in DC and the annex in Rockville. DS is currenty seen in Rockville and they seem to be knowlegeable about Autism. DS was originally DX with "toe Walking" but after investigation found that he actually had mild/mod CP. I don't know that botox is a treatment if his ligaments are not tight as this treatment is to paralyze and losen those ligaments. DS wears positioning AFO's that keep his feet at a 90 degree angle, he hated it at first, but now can go a period of time without them and does not revert to the toe walking. DS also had the cracked skin but that was from psoriassis, and was treated with steroid cream and cleared up nicely. I hope you find the help you need.

 

[persimmondeb]

Has your orthopedist looked at his hamstrings, etc? I have heard that this is a behavior that looks sensory, but isn't necessarily so. DS only did it briefly, and was prescribed stretching exercises, which seemed to work, but his neurologist was quite sure that the tightness was causing the toe-walking, and not the other way around. I am also going to second the vote for a new orthopedist.

For the cracking, I'm going to recommend butter, which is obviously non-toxic, and should absorb pretty well into the skin. Salt and olive oil make a good defoliant too. He'll smell like a restaurant, but there are no issues with ingestion. My DS will eat ANYTHING, despite being high-functioning and a teenager, and while he now has enough sense not to ingest anything he knows to be toxic, I have a long list of food-based alternatives for household products.

 

[bookwormde]

Call the Kennedy Krieger branch of Johns Hopkins and ask for their guidance. I suspect that they will be appalled that one of there own lacks evene the most basic level of competency. They should be able to set you up with an OT that specializes in ASD and find someone to evaluate the sensory needs that are the trigger to this manifestation and suggest alternate sensory input that will help lessen the impetus to toe walk

 

[DVC96]

My DD, 19, has mild CP along with intellectual disabilities. She was a big toewalker. At first we didn't worry too much about it because my husband toewalked as a kid (he said he thought it made him taller and faster!). After her CP diagnosis at age 6, she started Botox. We did it through neurology at Walter Reed and it has had amazing results for her. She no longer toe walks, but she also doesn't have a heel strike - she kind of slaps her foot down, which makes her a loud walker. Anyhow, she got injections every 3 -4 months for probably 10 or 11 years. We stopped them about a year ago as her muscles were just not tight enough anymore. It was not a stressful experience for her at all - she looked forward to getting them. (I think it probably gave her relief from the tight muscles, but she doesn't articulate that). At WR, they do not cast afterwards but I know some kids that went to Children's in DC and they did get casted for 10 days or so. They also only went once a year and we were going every few months. I would ask to see a pediatric neurologist - they will be knowledgeable about autism as well as neuromotor dysfunctions and botox. In our opinion, as well as that of her neurologist, the botox saved her from painful heel chord surgery. Good Luck!

 

[summy32]

Thank you again for all your help. It is good to hear others experiences and what options are out there. I am going to be looking into some of your suggestions.

 

[IUTBAM]

As for the cracks on his feet...this is going to sound extremely simple (believe me, I thought so too when my son's (16, moderate autism, and a toe walker all hsi life) dr. recommended it. My son's feet had gotten horribly cracked as you described your son's...I tried steroidal cream (OTC), all sorts of fancy creams, etc. She recommended petroleum jelly and socks. I slather the his feet with it, and put socks on (usually twice a day, but sometimes only a once a day). His feet cleared up in a matter of 10-14 days. I thought for sure he had fungal issues. I trust the doctor, but really didn't believe her when she said it was just a moisture issue. It was.