The Drugs Don't Work..

When I was pregnant with my second child, I was told I have 'white coat syndrome'.. everytime I went to the hospital for a checkup, my blood pressure skyrocketed. Any other time, it was fine. Well its not that I'm afraid of doctors, its more the case of I don't particularly trust them. I've never been a big fan of prescription drugs either.

When I was about 12 I started experiencing severe migraine headaches, which I have now discovered are hereditary in my birth family, but since I was adopted, my mother had no idea. I was given medication to take every morning and told I'd need to take it for the rest of my life. I stopped taking it when I was 18 and moved out, changed my diet, worked on my health and the migraines stopped. I've never taken it since and haven't had any migraines either. At 24 I stopped taking the Pill (after about 3 years), because of all the nasty side effects. My period stopped for an entire year, and again, I was told the only way to regain a regular cycle was to go back on the Pill. I went to an acupuncturist instead and within 3 months was back to normal, and have been ever since.

Around that time I was also told I had poly cystic ovarian syndrome and most likely would never have kids. Thankfully I didn't believe this, even though I didn't want children at the time. Many years later when I went to see a fabulous specialist (yes I do know they exist) for my under-active thyroid he told me that I wasn't even examined properly for PCOS and should not have been told that. I have poly cystic ovaries, but that is different from PCOS. He also told me that my thyroid can be helped with medication, but it may not be necessary for the rest of my life. He was my hero! And thus, two years after that I had my first child.

Now I've had medication and can appreciate the miracles of modern medicine, hence my first emergency C-section... I would have been one of the died in childbirth back in the middle ages. But again, if I had solely gone on the advice of 'professionals' my second child would have been an elective section instead of the gorgeous home birth that she was. What's my rambling point??? Well my dear son has been prescribed Equasym XL, methylphenidate hydrocholride and I'm having a real problem with this. I'm having a problem with medicating my child with a controlled drug, that he doesn't even want to take.
The first med he was given, atomoxetine was a milder formulation and did seem to have some effect of calming him down, but he wouldn't take the three capsules required. By the second capsule, it was like fighting world war three. So this medicine can be sprinkled into his food, much easier, but much stronger as well. The first night he had a wild look in his eye, and literally seemed speeding off his face. Not good. We were told it could effect his sleep and his eating, and it has. He's having late nights, late mornings, craving sweets--as in more than normal and much more compulsively, and is he calmer? No-- he just seems, well, Speedy.

We are getting closer to a diagnosis, as he is seeing the last in the team of specialists this week. Asperger's is seeming like the most likely and if that is the case, medication for the sometime hyperactivity isn't probably going to work. It would seem his pacing about and getting out of his seat is more a case of processing information rather than not being able to concentrate and sit still. Its a fine distinction, but one that the psychiatrist has seen, and one that I can now see as well, but not one that the teachers can readily see.

So do we continue muddling through with drugs, hoping that perhaps it will help him to act 'more normal' or do we let it go? Has anyone else experienced similar issues with drugs? As in do other people on the ASD spectrum take meds for hyperactivity.. as I've read ADHD often goes hand in hand with ASD but I think the case for us is whether it really is ADHD and not more of a way of being-- if that makes any sense??? I understand my own need or lack of, for medication but I don't know how it really feels for my son, and his understanding and expression is limited so I don't feel he can really explain. I've also read the long term studies of ritalin drugs and the negative effects on children and that doesn't help the matter!

Back to School, but happy.

It was a fairly quiet week last week while my son was at his grandma's. Since he's been back I have to say he's been doing very well. He seems happy and more calm and even offered to do some chores this weekend for me! Of course his motivation is money, to buy more crazy bones, but still, he was incredibly helpful. He had another visit with the psychiatrist yesterday, a follow-up really, checking on the medicine (atomoxetine- Strattera) that he's taking for the adhd. Not too much is happening with that just yet, as he hasn't been on it quite a month, but at least no side effects.

His calmness and cheerfulness I attribute to being off school and playing playstation 3 for a week. However I also know he is maturing and when we adjust our own behaviour and outlook (i.e. try and focus on positives rather than negatives), he responds in kind. He is truly a happy and gentle child and I really want to nurture that in him. I am planning to meet with his teacher this week about a special group forming for his class, for the slightly more advanced kids, and I am hoping that he will fall into this group as his maths and reading levels are so high.

One topic that has come up with his psychiatrist, and also his grandad suggested as well (grandad works with kids with behavioural difficulites), is that he is not being challenged intellectually and that leads him to being bored. Sometimes he is set a task that is difficult for him (like lots of handwriting), and left alone to it, whereas if given something more to his strengths and left alone to to it, he might not be as disruptive in class. This will all hopefully be addressed once the diagnoses is complete and hopefully the statement in place.

Enjoying the Silence

Yesterday my husband and I enjoyed our first Thai meal out in a very long time - at Rim Nam Thai in Hebden Bridge. We had our two year old daughter along, but even that seemed easy. My son has gone to stay at his grandma's for a record three nights, since he's off school this week. Its the first time he'll be away from us for that long, so we'll see how it goes, but I know last month when he went for a night and a day, it was strangely, but wonderfully silent in the house.

We were able to take our son out to dinner in restaurants when he was my daughter's age, and he did fine (in fact he ate alot more than he does now!), and to his credit he still does pretty well, he's not the same as when he's in school, i.e. he doesn't get up and run about and fidget and make loud noises. He does wind his sister up though, and complain about the food, loudly!

I'm currently reading Multicoloured Mayhem, Parenting the Many Shades of Adolescents and Children with Autism, Asperger Syndrome and AD/HD, by Jacqui Jackson and can't help but feel I've got it easy with only two children, and so far only one exhibiting autistic spectrum tendencies. Nevertheless, its never really easy and I notice now (even though I miss him terribly) how much more relaxed I am, the house is, its like when the electricity goes off, and all the hum ceases for a serene quietness. I've cleaned the bathroom and its still clean a day later!!!

I'm not saying that my daughter is completely quiet, she's taking full advantage of her terrible twos, but she is more relaxed as well, and naturally enjoys the sole attention. I worry that she's learning some of my son's (atypical) behaviour, which is definitely not what I want!!! I also never seem to shout when my son is away. I don't pride myself on shouting, and its one thing I thought I'd never do as a parent, but as many parents with challenging children will know, its not always that simple. There are many times when my son just pushes and pushes and shouts at me and at everyone else, and its really hard for me to take a few deep breathes! And I know that my daughter also sometimes unfairly ends up on the end of the firing line.

So why should it not be peaceful etc. while my son is at school for the day? It just doesn't feel the same for whatever reason, it seems the house is still buzzing when he leaves and if we've had a difficult morning especially. We woke up later than usual this morning, without having to have closed the bedroom door for the night (because usually DS is up at 6 am and banging about on his merry way). I understand the need for respite as many people have written about and I am now very grateful that grandma and grandad have taken the step of having thier grandson over for extended periods of time. He's different when he's there too of course, enjoying the attention that he doesn't have to share with his sister, and playing as many video games and watching as much Sky as he can stuff into each day!

**My camera is broken at the moment, so that photo is courtesy of yorkshirelife.co.uk, the canal outside the marina in Hebden Bridge, where we ate and watched the ducks and canal boats, to my daughter's delight.

Hard Facts and Harder Decisions...

Pervasive Developmental Disorder: according to Wikipedia (which provides a more lay person's language to understand it), PDD refers to a group of five disorders characterized by delays in the development of multiple basic functions including socialization and communication. The most commonly known PDD is (1) Autism, with the remaining identified as (2) Rett syndrome, (3) Childhood disintegrative disorder, (4) Asperger syndrome, and (5) Pervasive Developmental Disorder Not Otherwise Specified (or PDD-NOS).

This was the initial conclusion of my son's psychiatrist yesterday. He feels that my son has definite autistic tendencies (and actually sounded worse than I felt about it), and will need to be assessed/examined by a paedeatrician, a specialist in ASD's and possibly ed.psych again, within the next 6 months with the aim of a statement of special needs at the end of it all. In the meantime, the doctor felt that my son's hyperactivity was the most disruptive feature that could be addressed immediately, with medication of course.

I have never been inclined toward medication, unless I'm in absolute agony with no further options. However, my husband has the feeling that if it were something like cancer, we wouldn't turn down conventional medicine, if that meant helping my son. So I now have to weigh the pros and cons of medication for ADHD very carefully. I am more inclined to allow a trial period, but I do not want it to carry on into his teen years, nor do I want it to serve as a replacement for other possible treatments. That said though, the psychiatrist said his initial feeling is that my son's problems stem more from the autistic side, which could mean the medication wouldn't work anyway. I have to agree that this too was my intuition, before he even suggested medication.

So we are looking at another six months of testing, waiting, etc. but thankfully some of that time will include summer holidays. I can't say I feel much better after having heard the conclusions of the psychiatrist's observations, but something has ticked over in my brain. It is a bizarre thing, our brain, and how we can dupe it, or rather perhaps, persuade it to accept things like a placebo to do the work we want it to for instance. In my case, somehow hearing that my son had something more going on, something more complicated perhaps than Asperger's or ADHD, that I hadn't thought about, hadn't considered being as complex, brought me to yet another level of awareness.

I have found myself short tempered lately, easily frustrated by my son's behaviour and was beginning to think I may never feel anything other than this way. But I have been able to step back, and really think about the implications of having a neurological disorder. I can see how frustrated he is feeling, and when I let go of my own frustration, he relaxes, really relaxes, and that is so important. I can't excuse every bad behaviour and I have to be firm, but I can now also just relax, as he is just my son, as he has always been and always will be.

It also affects my daughter, as she is like a little Richter scale measuring everything that happens in the house. She is far more intuitive and aware than my son was at this age (2), but her language development is a bit slow, and I am conflicted as to whether to bring her in to see someone. It is developing for sure, and faster than my son's did, but will she have similar issues? Its a lot to deal with and my gut says to wait until she's 2 1/2 and then decide, as at that point she'll be able to attend the Steiner Kindergarten for two hours in the afternoon, and if it is obvious that she is having problems, then that will be the time to deal with it.

What Next?

It was the 29th of November that we met with the Ed Psych team and today we finally received a letter and summary back. This letter doesn't say a whole lot in my opinion, except that one of the team wil refer my son for further investigation for ADHD. It also mentions that we the parents, should make an appointment with our GP to discuss the tics. Obviously, since we have already done that, they have not been in touch with one another.

Whenever bureaucracy is involved, I expect delays and incompetancies. Since my son stayed home today I will bring this letter in on Monday to his teacher. As I mentioned before though, they seem unwilling to consider Asperger's as a possibility. In fact they mention in the letter that ADHD and tourettes run in the family, when what we said was that Asperger's and tics were in the family.

This little bit from the letter will amuse/dismay those of you who have already commented to me about this issue.. "certain aspects of his behaviour might (their emphasis) be indicative of an autistic spectrum disorder, but his good sense of humour and creativity are not part of an autistic spectrum disorder, so we feel it is appropriate to leave this avenue of investigation for the time being." So it looks as if the ADHD is the major issue, and while I know this can have varying levels of intensity, I really feel that its only a part of the bigger picture, even if I may not know exactly what that is. In any case, we still have to wait now for someone to actually see my son.

*and a thank you to those of you that took part in my informal online shopping poll!

Too much of everything

I'm currently reading this book by Sue Palmer, but not finished, so this is not a review. I shouldn't be surprised that my son is one of the millions with ADHD and other issues as it seems to be growing not just in the US and Britain, but even places like Japan.

We have tried to give my son (and now daughter too) a fairly non-toxic childhood so far. I am vegetarian and had been for about seven years when he was born, and he and my daughter are also being brought up vegetarian. I never smoked, didn't drink when I was pregnant, etc. Perhaps though as I'm learning, he didn't get enough Omega 3 from my diet, and now his. I'm working on that.

He didn't watch any tv until after age 3, and then it was only select videos like the wiggles and thomas the tank engine and educational ones that he chose. He never ate candy (not until starting school.. again, school ugh!!!) and never and still doesn't drink fizzy soda or copius amounts of juice. No artificial sweeteners, and no processed crap. I breast fed him until he was 2 1/2 and he slept in our bed until he was nearly three, when he naturally moved into his own and sleeps heavily through the night. He stopped napping though at age 1 1/2. He didn't start to use the computer until 4 1/2, which might still be young in some people's books, but it was under close supervision. (Here I am justifying my parenting)

He still doesn't watch alot of tv, definitely no tv in his bedroom, we only have the one, and its small, and if I had my nerve I'd get rid of it (my husband and I existed for two years without one and yet now that we have kids we can't seem to get rid of it!!). He doesn't have a nintendo ds, or a playstation but recently received a second hand dreamcast which he does love, but we do have limits. All this and guess what, he still has ADHD, and ticks & twitches and Aspergers. There's no fighting genetics, if that's what it is.

Reading this book has had its enlightening moments, and I like her reference to the elephant tale (where a blind man each feels one part of an elephant and interprets what the elephant is and looks like) in relation to 'experts' findings on childhood issues. Already (and we are only at the beginning) I have encountered 'experts' who disagree as to what my son may or may not have.

I have found myself saying though, as I read the book, I did all that and it didn't help! Except maybe it has helped. Living a healthy lifestyle has probably kept my son from plunging into the worst depths of his problems. I suppose if I wasn't aware of food additives and sugar and let him veg out in front of the telly or computer for days on end, then maybe he'd be 100 times worse. I think the Omega 3 supplements may actually be helping with the attention and hyperactivity part. Palmer does make a point about how kids today don't play outside enough, to work off that natural energy as well as building their imaginations and muscles, due to our fears about their safety. I agree play is very important, but if its Asperger's one's dealing with, it seems to me the personal safety issue comes up in many differnet ways, not just stranger-danger or automobiles.

We don't even have a garden right now, which is terrible and I hope-hope-hope to move this spring. We are near to a small park though, and we do alot of walking. When we lived in America we had over an acre of land, and it was fabulous to point out a tree at the bottom of the garden and say to my son, 'run to that tree, hug it and run back' -- a good way to burn off excess energy. But he was only 3 then, he could really use that now -we could really use that now... we spent so much time outside our house then. We find ourselves saying that alot--what we had then we didn't need, but really need now and don't have!

I spent hours playing out on my own as a kid, riding my bike all over from age 7. My son doesn't want to ride a bike. He is naive for his age (could be the AS, maybe just him) and I worry about letting him out on his own for too long, as sometimes the kids he plays with turn on him, often they just run off and leave him, but sometimes they end up hurting him. We only just started letting him play outside without one of us there and now this. So I know he probably doesn't get the chance to work off the energy he needs to. I'm considering a running club or something for him, since he does like to run...

I'm sure that starting school at such early ages doesn't help and this early years education plan the government has cooked up looks like disaster. Why aren't we looking more toward the successful Scandinavian educational models, and alternatives like Steiner, where kids start education at age 7! Until then, they play, they enjoy family life. All this required 'fitting in', testing, etc. its no wonder kids are having trouble, being made to do so much at such young ages. Well that's me winded, I'm off to carry on reading..

Denial or Acceptance?

Why didn't we take our son in for an assessment sooner? He's seven now. Why didn't we? I don't know. The doctor asked yesterday.. well he asked if we had noticed anything when he was younger and had we mentioned it to a doctor. Yes and No.

Perhaps it was some deep denial. I had an acquaintance who suggested to me that my son was somewhat autistic at age two, and I quietly but quickly cut her out of my life. She was not an expert in anyway, nor did she have any personal experience, so I felt she was judging my son unfairly. At the time he wasn't talking alot, not as much as the kids in his small play group, and definitely not as much as her daughter. He liked the other mothers in the group, but not her. I think he sensed her judgement, or the fact that she was looking at him to see 'what was wrong' instead of as a little boy. And now of course I cringe at the thought that perhaps she was right, perhaps she saw what I as a new mother could not or did not want to see.

My son never did well in groups, always running off and doing his own thing, never really wanting to sit still, except when I read to him, but we took that as high-spirited, strong willed, etc. But he is loving, not destructive, affectionate and was reading at age 6. If he hadn't started school, I'm not sure we would've changed anything at all. Denial, maybe a bit. I think we accepted him for who he is. The fact that we will not be medicating him no matter what the diagnosis, means that not much will probably change in him. I do think though, that any help in terms of therapy for him, a support group for us might be a good thing. Since we are fairly isolated and don't really get any practical support from family (mine in America, and his about an hour away) it would be good to meet other people in a similar situation. Of course my son as of right now doesn't think he has a problem, its everyone else! Though he did say yesterday that he's tired of being left out and feeling like no one understands him at school.

The doctor didn't have much to say really. He said he will refer us somewhere, I think its family psychiatry instead of psychology which is what we met with last week. I can see now how it is that its taken some people years to obtain a proper diagnosis. What a convoluted time wasting system this is. So now we wait, again.

Ed Psych

Yesterday's meeting the educational psychologists went much better than expected. My son's teacher could not make it as she has been ill much of the week, but his teacher from last year (who is also asst. head) came in her place. I thought we were meeting with a group of people, but actually it was just two psychologists and the teacher so it was very informal. After a lenghty discussion and completion of an 80 question diagnostic it is the general consensus that my son has ADHD and should now obtain a referral to a specialist.

It was also suggested though that we go back to our GP and ask for a separate referral to a specialist for Tourette's syndrome. They did not think, for various reasons, that he has Asperger's, mainly because he is highly creative and also has a sense of humour (doesn't take everything literally as most asperger people do). Several other issues though stand out as Tourette's which is equally troubling to me, as it is not really well understood in general society.


So it all seems very roundabout, as we now have to wait for two separate referrals before actually seeing a specialist to find out what our options are. Also, any assistance in school will not come until a formal diagnosis is made, as I understand, which could take months. But as the teacher said, at least they have some understanding of what is going on and can better adjust thier teaching around him in that way. Although I don't know if that's going to make much difference in my son's eyes as I just learned that he is now sitting at a table by himself due to his constant motion and flailing arms etc. His teacher from last year said she noticed he seems to be a lot lonlier on the playground than last year, and we have noticed that he hasn't received any birthday party invites this year, as he did last year. This is very sad for me, and I can only imagine how misunderstood he must be feeling. In fact that was one of the questions on the diagnostic, 'has your child stopped being invited to friends houses/parties/play etc?'

the drugs don't work..

Yesterday, the BBC's Panorama followed up on an earlier programme looking at kids in Britain with ADHD (attention deficit hyperactivity disorder). The main focus was one child called Craig who was first interviewed in 2000 when he was seven. He's now a teenager suffering really badly with ADHD and getting into trouble with the law after assaulting his teacher at high school.

The main thing I came away with is based on a follow up study of the use of Ritalin and Concerta prescribed for kids with ADHD. These are powerful drugs for anyone, but especially children. And they don't work. The MTA study which was done in America in 2000 had originally cited improvements in behaviour with medication and since then medication has become the first best option. Now however, seven years on, the research has borne out different results. The drugs don't work long term, in fact they have no beneficial properties at all, according to Professor William Pelham, a world authority on ADHD. But sadly, one thing they do have is very negative side effects including stunted growth.

the National Institute for Clinical Excellence is currently revising the treatment guidelines for ADHD in this country where Panorama estimated 55,000 kids have been treated with medication. Food for the Brain estimates up to 5% of children in Britain have ADHD. I was very interested in this report as I prepare for my son's assessment which may very well include ADHD. When I watched some of the kids with ADHD, I realised though, that my son doesn't seem to be that severe if he does have it. He does show many elements, but thankfully he's not aggressive and destructive. We are planning to follow an experimental plan of increasing his fatty acid intake (omega 3 & 6) which has been documented as helping behavioural problems.

ADHD and fishy technology..

The more I read about attention deficit hyperactive disorder (ADHD), the more I wonder about whether it can actually be 'cured' as a disorder in itself. Appartently the medical profession doesn't really know an exact cause or link, but have identified certain brain functioning issues, possible genetic links, too much sugar etc. It is true that there are kids and adults too definitely suffering from the group of symptoms that have been defined to characterise ADHD, but there doesn't seem to be one cure-all approach. I'm thinking this way as I've just read about a new book by an Australian researcher, Dr. Brenton Prosser, titled ADHD: Who's failing who?
Although I haven't read the book yet (i have to order it from the publisher to get it here), I've read the media release.

Dr. Proesser says that at different times throughout human history, the behaviour we now call ADHD would not have presented the problems it does today. He says "In an era when work meant burning up physical energy on a farm or in a workshop, rather than sitting at a workstation using your head, you wonder if hyperactivity would have made any headlines at all". This makes me consider the contribution of pharmaceutical big business in labelling 'behaviours' and 'conditions' in order to provide us with a 'remedy', except its rarely a remedy at all when you consider the host of side effects of most prescription medicine.

The premise of the book challenges the emphasis on medication as the primary treatment for ADHD, which has seen the prescription of Ritalin skyrocket in Australia, which isn't surprising as its also increasing here in the UK, and of course America. Recent reports have also indicated that Ritalin contributes to suicide, suicidal thoughts and heart attacks in children. Dr. Prosser argues for a sociological approach to solving the problems experienced by ADHD sufferers. I feel very much in agreement with this idea, as I have now witnessed a classroom full of 30 kids (the norm nowadays)and it is so unsettling, its a wonder anyone can concentrate. I'm really heading back to homeschooling..anyone who says children need school for proper 'socialization' have not observed said children in the playground. There's nothing 'social' about it. More like mad monkeys in a cage..

Dr. Prosser goes on to say "If we ask only medical questions about ADHD, we will get only medical answers and more drug treatment. It seems to me that what we now call a disorder could be blamed at least partly on a mismatch between the natural diversity of human behaviours and a world in which these behaviours no longer fit". I can see the relevance of this in terms of technology. If we think about it, our children are growing up in a very fast-paced technological world, and the schools themselves are actively trying to embrace the technology at very young ages, with the idea that they are preparing the children for the world we live in. Waldorf/Steiner education bucks this idea completely. No computers, video games or even TV are allowed in the schools, and not encouraged for children under 10 years of age.

The idea that you have to prepare them by letting them use all this technology at a young age is fallible really, since we have no idea what the technology will be like once they are 'working age'. Nor do we know the possible negative long term implications of the technology on their bodies & minds. I may sound older than my 36 years when I complain about children as young as 8 with mobile phones, x-box's, personal computers in their bedrooms along with tv, stereo etc.. but I see it as an infringement, a stealing away of childhood. I believe in moderation, but there seems to be no moderation when it comes to these things, and the marketing of them to children.

My son was not allowed on the computer until age 5, and even then I had reservations, but it just wheedled its way in there--with 'educational' programs, and I have to say he does have an uncanny ability. But then how long would it take for a young mind to grasp the concepts anyway? Probably not that long, even if we waited until 10 or 12 years of age. But with mainstream school you can't get away with that, peer pressure takes over.

I'm sceptical of the pharmaceutical industry in a big way, and if you just consider the profits they make off of their drug inventions, how can you not be sceptical? I am all for science and awarding prizes to those scientists that have worked hard to come up with some new treatment or way of eliminating a particular disease, but that doesn't mean accepting every new development without question, especially when there are no long term studies to show any adverse effects.

Another recent study done in Australia looked into the use of fish oil and evening primrose oil supplements for children with ADHD. The study found that after 15 weeks the children who had been taking the combined oil supplement reported reduced inattention, hyperactivity, restlessness, and impulsive behaviour, while these improvements were not reported in the placebo group. Once the placebo group were given the supplements, they showed similar improvements, and the first group show even greater improvement after an additional 15 weeks. The researchers also conducted cognitive assessments which confirmed the improvements in the children. The emphasis on including Omega 3 & 6 in your diet has become very popular here in the UK, as I'm sure it must be in America, as it benefits your brain, so I'm not that surprised by this study, but I'm happy about it. And vegetarians can also benefit from this, by substituting fish oil with Flax Seed Oil which has roughly double the amount of Omega 3 fatty acids as fish oil. And there's a new supplement for veggies, from marine algae which is also supposed to be a pioneering achievement.

I will be writing more on this later, as I'm working on an article about it. It shows that there are researchers out there looking for natural treatments, and also suggests that our diet and environment play a key role, both of which have been changing drastically, mostly declining over the past century and no doubt playing havoc on our brain and bodies.