I was prepared for the usual bias due to receiving the information from the company and it’s paid researchers, but was pleasantly surprised by a comment from one of the physicians that was speaking. He strongly urged everyone in attendance to do their due diligence and not just take the company’s word for how good the product is. He even made reference to PubMed and its usefulness as a resource. I have used PubMed many times and many of the papers in our repository have come from there so it was reassuring to hear it referenced given the context of the presentation.

We are doing some further research on the supplement, but I think it is safe to say that we will be giving it a try with K. The research indicates that it will address some of K’s physiological challenges; oxidative stress (as indicated by various blood tests he’s had), improved immune function (there is no downside to this), and system detoxification (K takes 300mg of Tegretol daily- a drug that can be hard on the liver). We just need to confirm that it does not contain any casein, or at least an insignificant amount due to K being on the GFCF diet. Also, that their are no contra-indications with his anti-seizure medication.

I received some research on Immunocal and have put it in the documents section as well as linked to it below. I will also include some links to PubMed information I read previously on the product.

• Immunocal in the Compendium of Pharmaceutical Specialties
• A study on the use of Immunocal in autism
• Pubmed entries specifically for Immunocal
• Effect of Immunocal on glutathione levels in athletes
• There are over 84,000 entries in PubMed relating to glutathione!

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.

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.