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Thursday 16 August 2018

Summer in the City



Typical children usually enjoy their long summer break and once they are teenagers they do not need much supervision; that is not the case with people with more severe autism. Most kids with this kind of autism are counting the days till they can go back to school. 
 In the US, many such people have an extended school year, which keeps them occupied, but this does not exist in most of the world.  The US actually has a very short standard school year, just 180 days; in Japan they are in school for 220 days a year.


This year Monty, now age 15 with ASD, has been much more energetic since he started taking a little scoop of Agmatine before breakfast, 11 months ago. He now completes a lot of physical activities, by anyone’s standards.
He enjoyed running at school last year and was good at it, so I started taking him to a running track in the holidays. It is 1.2km (0.75 miles) long and runs through a forest, so it is mostly out of the sun.
The first step was to decide not to run with him; one risk of having so much 1:1 attention is that you grow up not being able to cope without it.
People with autism do wander off, they get side-tracked, they can get into awkward situations with strangers, but at the same time you do want your child to develop independence. Monty had a yellow shirt on and by standing in the centre of the running circuit; I could see him much of the time through the trees. Since the circuit has a red surface and most people are running the same way around it, it would be hard to get lost.
Monty never got lost and just counted out loud the number of each lap, as I waited at the start point. We soon agreed that running four times round the track is what he would do.  After a pause and a shower it was off for swimming and he now does this quite seriously.
Monty’s school assistants come in the summer, and they also got into the exercise program.  Monty never mastered riding a bicycle till this summer, but after two months of practise in the mornings, today he made a 7km (4 mile) circuit round a lake.
Another day he made two laps (14km /8 miles) on rollerblades.
This level of activity might be nothing special for a typical teenager, but it is a big change for Monty.  It is also very hot - 33 Celsius/92 Fahrenheit, when he is out.
It is much easier to be accepted by typical teenagers when you have some skills they can relate to, even if big differences remain.
One morning Monty was out with his assistant where a basketball team were having their training run on another circuit. These were large 2m (6 foot 6 inches) tall giants, compared to Monty. What would they make of his intrusion into their training? Monty’s assistant explained to the basketball coach and then every time Monty completed a lap and shouted out the lap number the older boys cheered.  That is what I call inclusion and everybody was happy.
Exercise has numerous benefits and where we live most children are very active; overweight kids are a tiny minority. Some do take it to extremes; Monty’s friend from the Netherlands came to visit and told us that her 16 year old sister is cycling to Rome (1,600 km or 1,000 miles). As you might expect, they are both tall and slim.





17 comments:

  1. I live in the USA and the extended summer breaks can be a great opportunity to teach your kids things which they are not going to learn in school whether that be religious, vocational, or educational instruction your child's school does not prioritize. This is pretty much what I did with my kids. Also, many of the kids in the local school district of course went to summer camps, but it is rarely a good option of your child has moderate to severe autism. Even with mild autism, there is no guarantee your child won't get bullied. Nevertheless, while camp is a great opportunity to spend a lot of time outdoors, our family went to over 20 different parks in our area for multi-mile walks over the last two and a half months, not to mention many other outdoor activities they got to do. My oldest (with the most severe autism) pretty much leads the way a lot of times and it is more of a chore keeping his siblings at his pace, than managing him nowadays.

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  2. Here is another easy intervention (idea) I had based on a new study showing that white capped mushrooms can significantly increase the amount of Prevotella bacteria in the intestines:

    Press Release:

    https://www.sciencedaily.com/releases/2018/08/180816105524.htm

    Paper:

    https://www.sciencedirect.com/science/article/pii/S1756464618301476?via%3Dihub

    If you just Google "Prevotella Autism" you will find many studies showing that in microbiota studies, a lack of Prevotella bacteria are one of the most common findings with respect to autism. Here is one recent study on the matter:

    https://www.nature.com/articles/s41598-018-19982-y

    Raw mushrooms have a texture my son may not like so perhaps pureeing the mushrooms into a sauce would likely work, but 3 ounces of mushrooms is not a small amount to give to a child daily. Also, I am not sure if cooking the mushrooms would ruin their prebiotic benefits either. He does like them on pizza, so maybe pizza everyday would be one way to do it, even though off the top of my head this does not seem like the most practical option.

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  3. Hi Peter,

    I am in the US and my son is going to start the school year soon. I did not send him to ESY this past summer as we started the Bumetanide and I wanted to keep him home in case he had major toileting accidents. He is physically very active but after a month on Bumetanide I noticed a significant weight loss. He was always a thin fellow but now I can actually see his ribs and back bone. His appetite is the same so I am really worried

    Did you notice a similar weight loss in Monty when you first started the Bumetanide ? Is he still on Bumetanide ? Any advise for me ? Thanks !

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    Replies
    1. My son has been taking bumetanide since December 2012, with a few pauses, just to check it still “works”.

      In the paper below from 2017 they talk about side effects:-

      Effects of bumetanide on neurobehavioral function in children and adolescents with autism spectrum disorders
      https://www.nature.com/articles/tp201710

      “The most frequent adverse events were hypokalemia, increased urine elimination, loss of appetite, dehydration and asthenia.”

      Asthenia is abnormal physical weakness or lack of energy.

      My son is of slim build, but has always loved to eat. He did not show any loss in appetite when starting bumetanide, nor lose weight.

      Having started using Agmatine 11 months ago he did become much more energetic, so perhaps he did develop asthenia, but we did not notice it at the time.

      People taking bumetanide will lose fluids if they do not drink more. If your son is losing weight, he might actually be eating less calories than before, even though you did not notice.

      If you do get a behavioural/cognitive benefit from bumetanide (not everyone does) I would just increase how much he is eating. Larger portions, an extra snack, or just drink milk. Many kids drink little milk and if you switch a glass of water to glass of milk, he should soon put on weight.

      Clearly if weight loss continues you will have to stop bumetanide.

      When taking bumetanide you do need to monitor electrolytes (potassium is most important) and add back potassium as food or a supplement to make sure he stays in the reference range.

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    2. Thank you. I will add in milk and maybe even dried fruits into his diet to help him regain weight. His potassium blood test is next week. He's nonverbal pretty severely autistic and I hsve not seen a great change yet. He's only on 1 mg once a day but I think the trial dose in Ben Ari's research was 1 mg twice a day ?

      How soon do responders show positive changes ? I was thinking of trialling for 6 months (as we're on a low dose) but should we see results much earlier (if this were to work for us) ?

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    3. SL, a low dose may never work. Bumetanide has only a weak effect inside the brain, due to the blood brain barrier.

      I found a long time ago that 0.5mg twice a day had no effect on my son.

      I currently use 2mg once a day.

      The limiting factor is the side effects, mainly loss of potassium and the inconvenience of diuresis.

      I would suggest once you know the potassium status you increase the dose to 1mg twice a day or 2mg once a day and give it 6 weeks to show effect. If after 6 weeks at the higher dose there is no effect, I would assume he is not a responder.

      My guess is that there are more non-responders than genuine responders.


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    4. I really hope that my son is a responder and that this is just a dose issue. I don't see anything extraordinary yet. If his stimming reduces and impulse control improves that would be huge and that would classify him a responder in my books although language and cognitive gains may be what others see. What are the general first signs that a person is responding to Bumetanide?

      My neurologist is pretty hard to work with and you need an Rx for Bumetanide here. Is there anything else that we could try if he refuses to up the dose? Just don't want to give up without giving it our best go.

      Thanks !

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    5. SL, the effect of bumetanide seems to vary. Some people see it as "the fog has lifted" like the child is finally mentally present, other people see an emotional improvement.

      Some people in the US buy online from Mexico without an Rx.

      To reduce stimming NAC worked great for us.

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  4. i think your approach of developing skillsets thaf are relatable to from his peers point of view is a great asset to him. the same reason why i will be getting my kid i to a gymnastics program for special needs kids this year, so that when she arrived to primary school she will have more ‘identifiers’ than just the kid who is different. btw, recently I have looked a lot at attention problems not just for my kid but for myself - i have always had ADD, but recently it has gotten worse and really put brakes on my personal development. have you looked at the OXTR gene/oxytocin connection? a lot of my anecdotal knowledge about me and my personal ADD points me in this direction, and I would like to resolve this to a point where I can open a book and learn.

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    Replies
    1. Tatjana, if you think the ADD is linked to a reduced level of oxytocin, as suggested also in the following study,

      https://www.ncbi.nlm.nih.gov/pubmed/26168929

      try taking the Biogaia Protectis probiotic. One of its effects is to increase your level of oxytocin. Unlike an oxytocin nasal spray, this way of producing oxytocin can last all day.

      It has a very noticeable effect on my son. It is widely available and often given to babies.

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    2. well that is quite a simple solution we could try. i will try it on both of us. so far everything you recommended worked like a charm.

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    3. I have been thinking whether to add this here, but I believe such ‘odd’ bits of info sometimes help point somebody in the right direction. I have like I said always had ADD, I just realized what it was when I was in my 20s. Until then my IQ was masking it and my oddities were just how I was. What I have also always had is ASMR capability. Its a specific sensory reaction to certain stimuli - which stimuli, that is to me clear as day and to everyone who has ASMR, but its hard to explain to other people - live situations or videos of people doing something carefully with detail to attention, with crinkling, tapping, whispering sounds. It elicits a sensory response of tingling in scalp and spine which are extremely pleasant and relaxing. When I had my child I realized it was oxytocine related (which scientists think too) as my uterus would contract when I listened to it in the early days after birth just as it would when my daughter would nurse. The biggest ASMR factor is the attention people give the thibgs they do in the Yt videos made to elicit it, and it also makes you pay attention. If I watch an ASMR video of someone talking about collectible sneakers I can basically repeat everything this person said though I do not care about sneakers at all. If I watch 5-10 videos on the same topic, I even develop some interest in the topic. So in essence, the released oxytocine make me relaxed, semi-asleep and very susceptible to learning and paying attention, and even emphatic to other peoples hobbies.

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    4. Very interesting. It is known stimming (not sure ir this is the word) or stereotipies are pleasure for The kid. Perhaps is as ASMR.

      And this seems quite psychological related for me, though some substances could help. Self esteem could be part of the issue.

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  5. Hi Peter

    I am hoping to trial Bumetanide soon. Unfortunately it's not available in UK Or India. Is furosemide an alternative to Bumetanide and works in the same way ? Also if 1 mg Bumetanide is 40 mg furosemide then how should I dose my 2.8 month old (about 13 kgs) ? I was thinking 20 mg twice a day furosemide. Does that sound right? Maybe if I don't see results in 3 or 4 weeks I could try 40 mg once a day ? Thanks in advance

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    Replies
    1. Furosemide is not a good alternative. It does reduce the flow of chloride into neurons, but it also reduces the flow out of neurons. Bumetanide just has the first effect. You are trying to reduce the level of chloride inside neurons, Bumetanide does achieve this. It is not clear that furosemide will achieve the same thing.

      It looks like Azosemide may be another option. It is used in some Asian countries, and is potentially better than Bumetanide.

      Bumetanide is available in the UK, if you have a prescription. Some people in the UK are buying bumetanide online from abroad, others go to Spain and buy in any pharmacy without a prescription.

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    2. Thank you..I will look for Azosemide. I have tried buying online but the companies ask for wire transfers and all..dont think my gp would ever prescribe Bumetanide.. :( my son is quite little and they won't even diagnose till he is 3 !! Some companies have got rights this year in India to manufacture Bumetanide so hopefully I should be able to get my hands on them soon.

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    3. Just another quick question..is it worth trying Clonazepam or Diamox or is it better to wait and get hold of Bumetanide cause it looks much safer and tested on kids?? I would rather wait and do a trial for a long term drug and hope my kid is a responder as

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