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New to ASD - Question about Toe-Walking

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#1 PhotogMama

Posted 19 December 2012 - 03:22 PM

Hello everyone! I am so glad to have found my way here after a friend recommended your warm, loving forum to me today!  My 10.5 year old son has very recently been diagnosed with Asperger's following a very sudden onset (or exacerbation) in tendencies after Scarlet Fever and Mycoplasma infections - I am also told the age/hormone changes may be contributing to the rather sudden changes.

My son has been toe-walking for the past few weeks on a fairly permanent basis, it is definitely more prominent when bare-foot or in socks, but still happens when wearing shoes.  When I read about toe-walking I see a lot of information about interventions being necessary.  

My concern at this stage is that a Psychiatrist through Mental Health made the diagnosis of ASD, while working with him for OCD - but we will not have access to an Occupational Therapist or other ASD support services until the beginning of the next school term for assessments.  

Is it safe for my son to be toe-walking throughout the school holidays, which is quite some time really, without intervention?  Are there any home-physio I can be doing with him to stretch out his tendons each night or something in the meantime until he will see the Support Services or do I need to take him to a GP? I am sorry if this seems very obvious to everyone, but we were given a diagnosis and sent on our way, and Mental Health are only able to work with my son for the OCD, so I am navigating this new path on my own at the moment!  I would truly appreciate input from other parents original.gif  Thank you in advance!

#2 anon360

Posted 19 December 2012 - 06:52 PM

Hi OP and welcome to toewalking!  LOL!

DD1 has been doing it since she could walk and DD2 has been doing a lot more of it in the recent years as well, but whether that be because we also try to correct DD1 and she gets attention with it.

Due to the school holidays I would go to GP and get physio referral.  That's a good place to start off over this period and they can give you some exercises esp for home to work on his tendons etc.  Try and get him to wear structured footwear, joggers with a not so flexible sole will help stop the arching of his foot.  

A few weeks of toe walking is not going to overly harm him esp as he has only really just started it.  It is also a sensory thing.  I would also ask GP for occupational therapist referral.  No need to wait for school term get started asap that way there could be plan you can hand onto school that will also help get him assistance.

Better to start the ball rolling on all fronts. It can be a little daunting all the testing and forms you will have to fill in but it will be worth it for your son.


#3 PhotogMama

Posted 19 December 2012 - 08:33 PM

Thank you both so very much for your replies!  I just knew in my gut we needed to get moving sooner rather than later but didn't want to overreact either!

Unfortunately the only OT available within 200km will not be available until school goes back (event though they are an independent Support Service, they operate during school terms!) which is possible to travel but I was hoping to stay local so my son will have minimal disruption to school etc in the new year when he needs to go for appointments (as you would imagine, a 400km round trip takes up a school day!) but I am positive there are Physios available here so I will start looking into that in the morning, and also find out about shoe recommendations.  

I have been trying to keep him in shoes for as much of the day as possible, however he overheats easily and HAS to wear a Fedora every waking hour, so he takes his shoes off to cool down original.gif Oh, it's all such a new learning experience!

Thank you again, I feel better knowing where I need to go for now at least!

#4 Carmen02

Posted 20 December 2012 - 07:37 AM

is toe walking in a 2yr old asd a concern? DS was only doing it occasionally but his doing it more often now he cant stand shoes (sorry to drop in on the thread was going to post a new one lol)

#5 tel2

Posted 20 December 2012 - 11:21 AM

My DS 2.5 years has been toewalking on and off since he started walking at 15 months. No one has made a big deal about it, so therefore I haven't really worried about it (more worried about his speech delay and pica). Should I be worried about his toe wallking too  and it causes problems in the future ?  unsure.gif

#6 tel2

Posted 20 December 2012 - 06:47 PM

EBH - thanks for the link and advice. Will read the link in the comming days original.gif

#7 sueb31

Posted 20 December 2012 - 07:35 PM

To the OP
Did they feel the OCD and scarlet fever was linked? (Syndrome called PANDAS). I think there is some evidence that early treatment can help the course, if that's what it is. Just thought I'd mention it.



#8 PhotogMama

Posted 20 December 2012 - 08:22 PM

QUOTE (sueb31 @ 20/12/2012, 07:35 PM) <{POST_SNAPBACK}>
To the OP
Did they feel the OCD and scarlet fever was linked? (Syndrome called PANDAS). I think there is some evidence that early treatment can help the course, if that's what it is. Just thought I'd mention it.



PANDAS was actually our very first thought, given the timing etc. however even after 6 weeks on the recommended antibiotics, both the OCD and "ASD tendencies" continued to worsen quickly, we had consults with some of Australia's best PANDAS specialists who also involved their mentors (including a top Paed Neurologist in the US) and even with all of their suggestions, it continued to become more exacerbated and in the end everyone agreed with the ASD diagnosis even though they were so positive to begin with that PANDAS was the only possible reason for it all.

Following a very thorough history, it was obvious my son has exhibited signs on and off his whole life, I had even been concerned enough when he was only 10 months old that I discussed some of his repetitive behaviours, need for routine, over stimulation etc with his Pediatrician at that point but was advised he would likely to end up with an ADHD diagnosis as he got older.

However, this sudden exacerbation was to the extreme - suddenly one morning my son woke up and decided and he was going to spend his life living in a cardboard box (literally - he just sat in it, put pillow and blankets in and attempted to sleep there, ate there, wouldn't talk, just sat in the box - if he needed to go to another room, he would tip it on its side and push it to the other room!), his gait changed, his speech diminished, he could barely put a sentence together and suddenly all of his normal "quirks" were just tenfold, if that makes sense?  He went from being a child of 10 who was identified as Gifted, to what I would describe as a 5 year old most of the time, it was just such a drastic change that it worried me a lot, I knew SOMETHING was wrong.  It was as if he woke up with an ASD that first day!

I was reluctant in the first weeks to consider an ASD as a possibility, surely I hadn't raised him 10 years without knowing, but within just weeks, it became the only thing that really made sense. I am told the OCD will occur in about 30% of those with an ASD.  He has a good Psychologist who is working with him each week, however it has been decided that after 5 months in total if there is no improvement with therapy, he will need medication, and that's not far off now.  

As for the toe-walking, thank you all so very much for your input, I can not tell you how much I truly, truly appreciate it!!! I have found a private Physio here in town, but they advised me their waiting list is actually as long as the Public one, so we have an appointment with the GP next week to get a referral.  I will also be going shopping tomorrow to buy him some Reefies, I think they might be the best solution, they are quite stiff in the sole and cool enough to help him not overheat, and no hat is not an option apparently (this is pretty new too!!)
Thanks again!

Edited by PhotogMama, 20 December 2012 - 08:27 PM.

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