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.

Many of the initial side-effects have completely disappeared and he tolerates the medication very well, sometimes even wanting to administer it to himself (we call it his “orange” as he takes the orange flavoured liquid), with none of the potential stomach upset or very serious rash that can occur. The “blinkiness” is gone though he does still get tired about 30-45 minutes after receiving his dosage, this is especially noticeable if he is not able to be active after getting his dosage like if we are traveling in the car for example.

K has, up until very recently, been taking 50mg 3 times daily and we have only seen some seizure activity on a couple of occasions, and one morning’s seizure activity was “dad-induced“. We have begun to see that he has had some episodes that we have begun to question as seizure activity and therefore have increased his dose to 60mg 3 times daily. We are now monitoring if this is going to be sufficient to keep his seizures under control. We had some concerns about increasing his dosage, but considering his neurologist first prescribed a significantly higher dosage we are keeping that in mind.

In retrospect I consider the decision to put him on the medication one of the best things we have done for K. Though it was not readily apparent that his seizure activity may have been holding him back or having any detrimental impact on his development, the results since starting the treatment have spoken for themselves. He is continuing to make good progress in his intervention sessions as well as at preschool and it has seemed to have had a positive impact on his personality as well (though lately his personality is very much mischievous). Any concerns that we may have had early on have been put to rest and we are glad that we took this step.

It can make some things more difficult to manage as you need to be mindful of drug interactions and ensuring we always have his medication with us, but the end result has definitely been worth it for us, and more importantly for K. I am the last person to recommend starting drug treatment without weighing all the pros and cons and doing as much research as possible and asking a lot of questions of your physicians, but this is definitely something I would recommend to someone in a similar situation.

We are always willing to share our thoughts if anyone has any questions about our experiences. Please feel free to contact us or leave a comment.

So it was this past Thursday the kids and I were in the car heading off to school when I had the overwhelming sensation of having forgotten something. A quick inventory; 2 kids, lunches, backpacks, communication book it was all here and we were early too, something was just not right. It was not until lunch time when I received a call from Tracy that it came to me in a rush, I had forgotten to give K his anti-seizure medication! We had started documenting our experience with using Tegretol to control K’s absence seizures and how it was affecting him, his school, and his home life. Suffice it to say, after what transpired I don’t think we need to have any discussion about whether we continue to use the medication or not.

Miss M. and Miss C. from his pre-school are so incredibly tuned into K that when Tracy came to pick him up they asked if we had changed anything or if anything new was happening with his treatment. He not only did not appear to be himself but they witnessed 3 minor episodes in the short 3 hours that he attends. Since we got his dosage stabilized and have been giving it to him routinely, except for this minor transgression, he has not been having any seizure activity that we or his pre-school have noticed and in my opinion has really been having a developmental spurt.

I feel that since his dosage has stabilized that he has really been improving. He is much more interactive with us and his sister as well as more communicative. We are really beginning to see his personality come shining through and though I was never really sure that we were seeing a lot of seizures the medication has definitely been helping. The recent flourish in K has very likely been attributable to the medication, and I think I confirmed this with my unintentional, yet very informative, experiment.

Many involve investigating the usefulness of drug therapies, but interspersed are investigations that, if performed correctly, will address much of the anecdotal evidence that is related time and again in parental testimonials. Some have been through scientific investigation before, but it is good to see them being revisited, like the impact of GFCF diets. We have always had the opinion that this has had the single biggest impact on K and his success.

That, I know, is a fairly significant statement and to have my intent fully understood needs to be considered in a broader context. I think after my above statement it is also important to mention that this is in no way meant to detract from all the hard work that K has done with his exceptional team of therapy providers. I in no way mean to take away from, or minimize all that they have done for him. They have been instrumental in his progress and we would be lost without them and K would undoubtedly not be thriving without their unwavering commitment to him.

The salient point I feel, and I will not comment for Tracy, is that had we not removed gluten and dairy from K’s diet he would not have been able to get as much out of all his therapy sessions. The GFCF diet has primed him for the success that he has been experiencing and allowed him to maximize all his interventions and, in the process, better tap into his potential. In reality, I realize there is no way to know this for sure and this is just our impression, but it is not founded on whim but on our experience with K before and after modifying his diet.

This last point, I think, is key and is all too often dismissed by those who think the only useful, or factual, information is that which is found in scientific studies. Scientific research is very important and I am not trying to say otherwise (I have an undergraduate degree in the biological sciences so skepticism, research, and the scientific method are all things I subscribe to) but personal anecdotal evidence should not be discredited based on its lack of “hard” data. Research deals in statistical analysis and just because something is not found to be significant in the statistical sense does not directly translate into a lack of significance in the real world sense. There will always be those that are outliers and for these people, the results can be dramatic. My emphasis is meant as a reminder that the numbers represent people and that very pertinent fact should not be forgotten. If a given treatment can have beneficial results for some, even if that number is not statistically significant, that point should be mentioned and not minimized. What may be statistically insignificant for many can be profoundly significant for a few, and then there are the gradations between the extremes that can also go overlooked. As I have mentioned before in other posts, it is important to keep your options, and your minds, open when it comes to looking for successful ways to help your autistic child.

Shortly after moving him to the GFCF diet we noticed a significant change in his behaviour and the appearance of previously absent behaviours as well as a more interactive, “present” child who appeared to be “with us” more than in the past. I will not delve into the theories behind why the GFCF diet works as there is copious material to be found with very simple research but it truly was as if a “fog” had been lifted from K’s mental processes and awareness. I think that it was this new found clear-headedness that allowed him to absorb and process what was going on in his intervention sessions. His therapists did not have to work as hard to engage him, though this can still be problematic at times just like with any typical child, and they could focus on learning and not on trying to get his attention and therefore the sessions were, overall, more productive.

One other point that I would like to make is that in pursuing any dietary interventions it is fundamentally important to ensure your child is receiving adequate nutrition. Shortly after starting K’s GFCF diet we kept a very detailed log of everything he consumed in a day for 2 weeks. We then met with a dietician and discussed his food journal and his diet and made sure that he was receiving adequate nutrition. I cannot stress this enough as it is critical to ensure you are not replacing one problem with another, potentially more harmful, one.

We have some research information in our documents repository that has looked at the “outcomes” of dietary modification as an intervention in autism and many are contrary to my point but they are a good source of information and provide a counterpoint to my personal perspective. As always, comments are welcome.

Some links to our repository that contain information on GFCF diet:
Review of GFCF diet in Autism
Another review of GFCF diet in Autism
Diet and child behaviour problems
Registered dietician’s insights on dietary treatments in autism
Intestinal pathophysiology in autism

Here is some information I have shared from our google reader page:
GFCF diet on google reader
Another media article

I also found some very useful discussion in the comments section of a post on another blog I read. It makes some other very good points regarding diet and children’s behaviour that are very relevant, but I have been verbose enough already. Therefore this should not be considered merely in the context of autism but really in the broader scope of general health.

Thursday Jan. 17th, 2008 We started his medication at the initial starting dose of 50mg once daily. It has only been a few days thus far and the only side effects to note are some tiredness shortly after administering him his dose, though I think we may have ameliorated this by giving K his B12 nasal spray shortly after and this seems to keep him alert and able to focus during his intervention sessions, and some extra “clingyness”. Tracy and I think this may be the result of just needing some extra re-assurance if the drugs are making him feel somewhat strange mentally. We are hoping that this will pass. He does seem to have to work somewhat harder with his speech as he seems to elongate some of his words while talking. The only other peculiarity we have seen is some squinting or like K is trying consciously to blink and therefore it stands out more than normal blinking.It is unfortunate that being 4, and on the spectrum, it can be hard to tell people how things make you feel as many of those ideas are somewhat abstract and require higher levels of communication.

We are going to start gradually increasing his dose so I will update this post as we progress and hopefully I can capture what is going on, any side-effects, and how K is reacting.

Jan 22nd, 2008 and we have increased K to the next dosage level. He is now receiving 5omg twice daily. Again we noticed some additional tiredness and the “blinkiness” continues but not as pronounced. Except for an episode on the day we started treatment we have not witnessed or heard from his preschool that he has been having anymore seizures.

Jan 25th, 2008 and we had a meeting with K’s neurologist today. We talked about alot of things and how to proceed, much of the conversation revolved around her retiring and how we proceed from this point on. K seems to be having a much more difficult time controlling himself and many very simple things seem to be more than he can stand and result in tears, hopefully this will diminish. One of our topics of conversation was if his behaviour is being negatively affected and his performance in other areas is not showing significant improvement then perhaps the medication is not worth the additional stress on everyone, time will tell. Of note is the fact that he seems to be more echolalic lately, this has always been one of his “stims”, but it seems to be worse now as he continues to recite parts of his most recently favourite shows. This too may be a product of being more tired than normal and an attempt to keep himself busy and occupied instead of succumbing to being tired; we have seen this before as well, but hopefully it too will be short lived.

Jan 28th, 2008 K is now taking 50mg 3 times a day (morning, noon, and before bed) to manage his seizure activity during the waking hours and at this point it is not looking good. We have committed to ourselves, the neurologist, and K that we will try for 1 month to give us a good indication of how it will manage his seizures and impact his behaviour. If the last couple of days is any indication we may be in for a long 30 days! K seems to be even more out of sorts, everything that does not go his way is a MAJOR ordeal resulting in tears and he seems to very much just want to watch tv. We are not sure if this is just a result of the medication making him tired, which we know it does from what we saw yesterday (K almost fell asleep in his sensory swing early in the afternoon, which never happens normally, and he asked to go to bed early and fell asleep almost instantly) or if it is impacting his behaviour such that it is very hard for him to cope. The other change of note is the fact that unless he is watching tv he has a difficult time being still (we are limiting his B12 nasal spray because that can exacerbate his “hyper” activity level). He has always been busy, but not to the point of being hyper or manic, but lately he even seems to have a difficult time sitting in his “happy spot” at the dinner table. Again, we are not sure if this is another effect of the medication or if it is from it causing him to feel tired and the perpetual motion is how he stays awake. The latter would be very in keeping with what we know of our kids. K’s big sister does the same thing still, she busies herself with anything and everything to keep from succumbing to sleep. The outcome of which is usually very similar to what we are seeing with K; the excessive activity and the over-emotional behaviour. Hopefully as the dosage normalizes and he becomes accustomed to the medication these new personality traits will diminish to the point of being absent.

The only other thing of note in this area would be the change in his homeopathic medicine at the same time as the introduction of the anti-seizure meds. We are going to contact his naturopath to see if this is likely and adjust his remedies accordingly to help manage the behaviours. We did see similar behaviour in the past with a change in his homeopathic remedies so that may be a contributing factor.

Jan 31, 2008 K seems to be tolerating the medication much better. He is on 50mg three times a day and seems to be adjusting to its influences on him. The bad behaviour has decreased dramatically and he is almost back to his normal self. He does still seem to be tired and this has an impact on his mood and behaviour but usually just in ways that I have described above in that he becomes busier than usual and if we are especially lucky he does it all with a mischievious look in his eyes. That remark should not be viewed as fascetious but one of happiness as it shows he is doing things in a calculating way that he has deduced will elicit some response, in other words it would appear that he using some social context for his behaviour as this is a type of interaction with his mom and I. Atleast that is what I try to remind myself when I tell him not to keep doing certain things that he knows full well he is not supposed to do.

His preschool is so great at monitoring his behaviour and watching for any signs of his seizures and to date we have been episode free since shortly after starting the medication and we have not noticed anything here at home. The “blinkiness” was noted on the 29th but not today so that may be a transient effect or perhaps it is a result of some other aspect of the medication. He seems to be sleeping better as well (me touching wood) and has not been waking in the night as he sometimes does, especially this time of year, and has been very easy to get to sleep at night. Perhaps we should consider an adjustment to his bed time to ensure that he is getting enough sleep and is not becoming over-tired as that usually leads to episodes of night terrors. Sleep is going to be the subject of another post as I try to remember and document our 4 very difficult months last year when K did not sleep well at all and some of our strategies for helping improve the situation as well as what we experienced. I found an article recently that has some resources in this area and we have some information in the documents section on the main page, as well that have information on sleep issues in autistic kids, if you can’t find what you are looking for, try the contact us link and we would be happy to direct you to the information we have.