I have posted before on the subject, and my position has not changed.  Getting K on a GFCF diet was one of the 2 best things we did for him (the other was starting his anti-seizure medication).  The change was quite profound and that is why we tell others our experience.  We do not try to indicate that they too can/will see such improvements, but that this is what has worked for K.  In many cases we have had other people tell us that the diet change has had significant, positive impacts on their children too.

In reading the research it is important to consider that the researchers are trying to answer a very precise, limited question and inferences and extensions beyond that question should be made carefully.  I did not read the full articles, just the above reviews, but in many cases the researchers do not comment on any changes, if any, that the participants had regarding their behaviours or autistic traits.  These points are outside the scope of the question being asked and therefore are not deemed relevant to the discussion.  For parents, these are the most relevant points and the underlying mechanism is secondary and this is likely one of the main reasons why average parents rely on anecdotal evidence over scientific research.  I’m afraid that on this particular topic I’m with the average parent.  If we were to follow the research K may not have been able to make such significant improvements over the last 3 years.  This is of course an unanswerable question as we don’t have a time machine to turn back the clock and try it all over again, but we are pretty secure in our supposition.

It is interesting to me that despite the bulk of the research in this area indicating that the GFCF diet has no impact on autistic symptoms and the leaky-gut hypothesis is flawed (in the studies I have seen to date) yet it is a very widely talked about and tried “treatment”. Our old documents repository tracked the number of times articles were downloaded and this was the most downloaded by a margin of 3.5:1 over the next most active article.  Obviously parents aren’t reading the research or they don’t believe it and, like us, decided to try it anyway because it is so frequently discussed with many good results- anecdotally of course.

Some final thoughts. “The diet” can be difficult at first and is definitely more expensive, but once a routine is established and you become familiar with what products are “safe” it is not hard to manage and has become second nature for us.  My last point is just to ensure that you are meeting your child’s nutritional requirements.  We worked with a dietician to ensure we were giving K everything he needed to thrive and that the GFCF diet was not going to have a detrimental impact on his health and development.

We have been having some difficulty of late getting K to wear his AFO’s. We did put them on him a couple of times during the night when he was asleep, but this resulted in him waking after having them on for a couple of hours and being quite upset until we removed them. This may be partly why he doesn’t want to wear them now, we have, unfortunately, linked them to negative circumstances and he therefore refuses to put them on. To compound the issue he has had a minor bug lately, but we gave him a brief reprieve from the AFO’s and perhaps now that he is out of the routine, coupled with the negative night time experiences, means that we are at a difficult point; he flat out refused to put the AFO’s on. It is a very humbling experience to witness the power of a 4 year olds will.

We also don’t want to make things worse by forcing him to wear them, not that I am convinced that we could anyway, but an attempt to do so may eliminate all together his potential future compliance. So, now it is time for us to get creative, to try and find a strategy to get him interested again. And, if all else fails, we may have to resort to bribery!

So our saga continues. I hope we can get him interested again or else we may have to start on the casting after all. Though this opens other concerns, and if the AFO’s do not go well and we can’t get him re-engaged in wearing them I think we may see how he does just as he is and consider casting in the future when he is a little older and better able to understand what it is we are doing and why. The only reason I can see to force the issue sooner is if there is some concern about him causing physical damage to his ankles. I do have some concerns about applying the serial casting and K’s ability to tolerate the casts for sensory reasons. Hopefully we don’t have to find out and we can get back on track.

More to come I’m sure….

It has been a few weeks now since we took K to see the physiatrist and there have been some developments in addressing his toe-walking. I am going to speak about the developments and will follow with some of my impressions and thoughts on the entire experience to date.

The visit to the physiatrist was good and there were other individuals involved in the appointment; an orthotist that K had seen previously, a physiotherapist, and someone else I can’t recall. Though there was the appearance of a “team” of people there was little interaction with the other medical staff and the physiatrist lead the appointment and took K’s history and asked some other questions. She indicated that this condition is very common in kids with ASD (though K is the only ASD kid we know that does this) and any patient she sees with this condition that does not have another diagnosis she pursues a diagnosis of ASD, or atleast asks the questions as the 2 conditions are so closely linked. She did a brief physical, but not neurological, exam and then presented us with a few options:

1. Ankle-foot orthosis (AFO)
2. Serial casting
3. Surgery

(In her opinion botulinum toxin injections would not be a viable alternative because his toe walking is not caused by spasticity as can be seen in other conditions).

In an attempt to start with the least invasive and intrusive alternative we opted for the AFO’s and have since seen the orthotist and have had them at home since June 19. K is tolerating them quite well and we are trying to ensure they do not become onerous and a struggle for us to get him to wear them. He currently wears them for about 30 minutes at a time and can walk in them but it is obviously not as easy to get around as with them off. Our hope is to increase the duration and the number of times he wears them in a day as well as to increase the amount of stretch they are providing him, however first things first. It should be noted that this alternative is not cheap, and we have yet to find out how much our extended health coverage will reimburse the cost, however we are satisfied with our decision to start here.

We are going to use the AFOs for 3 months and re-assess his progress and then decide if we need to re-visit this as a viable treatment or if we need to then consider the serial casting. My understanding is that this would be a series of 3, or potentially more, casts each for a week in which they increase his level of dorsiflexion and stretch the achilles tendons. My major concern with this form of intervention is K’s ability to tolerate the casts and how intrusive they would be, though the time period is quite short.

Further Considerations:

In doing some research on the topic (and from information we received from the orthopedic surgeon) I was under the impression that serial casting was not very effective at helping remediate toe-walking. I did not ask this specific question but it has occurred to me that perhaps I was reading the wrong research. Or to put it another way, I was reading research aimed at answering a different question. What is more relevant is to find research that comes to conclusions about serial castings efficacy on lengthening the achilles tendons. The physiatrist indicated that in some cases though the tendons can be successfully lengthened, or may not be short to begin with, many kids will persist in toe-walking. For some neurological and or habitual reason they preferentially choose to move this way despite not having a physical limitation preventing a normal gait.

We may still consider a second opinion from the Children’s Hospital, and our pediatrician has already indicated that she is willing to provide the referral. It has not escaped me that perhaps we are seeking an answer to an, as yet, unanswerable question; why do some ASD kids toe-walk? More specifically is why does K toe-walk? One thing that has been somewhat discouraging is that everyone we have seen has been content to regurgitate the same basic information: “That is what kids with ASD do”. That may very well be the case, but some further investigation to ensure that K fits that profile would be very reassuring, not to mention good practice. It may be very likely that he may just fit the profile and may toe-walk for no discernible reason other than that is just how he is, and that is completely fine with us. Our ultimate goal is to ensure that nothing has been missed or overlooked because someone didn’t want to take the time or to consider other possible causes.

That leads to the final point that I will make in brief. We are pursuing this because we are concerned about the longterm impact of walking on his toes and not using flat feet and any physical problems this might cause as he grows and ages. This is NOT about us trying to make him conform or be more “normal” or to avoid any other form of public/social embarrassment. Nothing could be further from the truth and we just want to be sure we are doing all we can to ensure he is healthy and happy for now and a long time to come.

As we continue to use the AFOs and adjust the stretch I will continue to update our blog about our progress and any issues or information we come across along the way. I would love to hear from anyone else that is having, or has undergone, a similar experience and the ultimate outcome.

It was by most accounts a small party. K had 3 friends, their older siblings (who just happen to be K’s big sister’s friends too), 2 sets of grandparents, and a couple of other parents as well. When we were discussing what to do for the party and who to invite we thought this would be the right number as we have noticed in the past that he has a hard time when numbers get large and the interaction and intensity level of young kids gets elevated. Not to mention that he would know everyone that was in attendance and it was in his own house which would make things much easier to cope with. The party went very well and I think that a good time was had by all. All the kids played well together, there were only a couple minor incidents, as there always are with young kids, and K had a good day.

It was really good to see his anticipation and excitement for the party. He told me on many different occasions throughout the morning as we were getting ready for the party that we were celebrating his birthday and that we were having a party and his friends were coming. In fact, he was mentally ready to go at breakfast! This is quite a departure from the past when he would have been ambivalent about the whole ordeal, would have ignored the other kids, fixated on his presents (completely normal behavior I think), and may not have been able to cope very well with all the people and activity. What a difference a year makes! One of the biggest surprises and “cutest” moments came at our family dinner later in the evening when he started talking about what a great day he had and that it was a lot of fun. K was contributing to the conversation instead of regurgitating some echolalic speech as he is prone to do and I must say it was very exciting to see him be part of the larger social dynamic of the extended family dinner.

I’m sure this will be a topic of discussion for some time to come as he plays with his new toys and takes every opportunity let us know where he got them and why. It was K’s birthday, but he was not the only one who received a gift. It was really great to watch him playing with the other kids and to hear him recount the experience later with his obvious satisfaction with the entire event. Happy, sort-of birthday, K!!

K’s big sister decided that what would be a great treat for me would be for the whole family to go to the beach. A quick check of the local tides showed that we would arrive at the beach just after minimum tide, and therefore the kids would get maximum beach exposure for exploring. So quickly we got everything together and jumped into the car for the short 15 minute drive to the beach. They were both very excited, as was I despite still being somewhat sleepy and very satisfied with my banana-chocolate pancakes, eggs, juice, and decaf coffee!

The beach too was beautifully sunny, the wind was blowing slightly and this made the temperature a bit chilly but that didn’t stop the kids from enjoying themselves and it most certainly would not keep K out of the water. As we neared the water’s edge he spotted a gull and the chase was on. Not to be satisfied with making the bird take flight, when it landed a short distance away he was off again, sure this time he would be successful. The bird flew off this time and K and I continued our search along the shoreline for other interesting creatures. On a few occasions he threw himself into the water and lay down on his stomach in the chilly ocean water to bask in the glory that is “the beach”. This was followed fairly shortly by the need for me to carry him up the beach back to the towels to dry off and warm up which presented itself as a grand opportunity to have a snack. Tracy and K’s sister continued to search the shoreline for various creatures and natural treasures and soon came to join us on the blanket to soak in the warmth of the sun away from the shoreline and the slight breeze.

Never one to pass up the chance to catch a little rest, and it was father’s day after all, I stretched out and listened to the wind, the sea birds, and took in the warmth. After their snack the kids headed back to the beach just below our picnic spot and started building sandcastles and amusing themselves as only kids can do.

I began to think that this idyllic scene seemed to be somewhat unlikely even last year at this time. K has come so far and his ability to attend to what he is doing and not just to sit for 2 seconds and then run off in any direction with one of us in pursuit made all this even more enjoyable. Imagine, being able to relax at the beach and talk to your spouse secure in the knowledge that everything is alright and that your child does not need your eyes on them constantly. It was incredibly liberating and relaxing and made an enjoyable morning all that much more so. To those with kids that are not affected by ASD my ramblings must sound very mundane and boring, and that they are and for that I am very thankful!

After a relaxing and very enjoyable morning at the beach we headed home for lunch and to see what else the day would hold and I was very optimistic that my good fortune was only going to continue. As the kids enjoyed their lunch I puttered in the kitchen and straightened up the house in preparation for our dinner guests later on in the day. I enjoyed some lunch and worked out in the garage for awhile to boot!

The kids helped Tracy work in the garden and played in the yard, I think they too were enjoying the nice weather as this spring has left more than a little to be desired, and though cool in the shade with a slight breeze it was beautifully clear and when in the sun it was warm and inviting.

When gramma and grampa came over we had a nice family BBQ and chatted for awhile keeping our collective eyes on the kids playing on the trampoline. As they eventually made their way to the door we started to get the kids ready for bed and now Tracy and I have some time together for me to tell her how great the day was!