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Monday, 2 December 2013

Hypokalemic Autistic Sensory Overload


Hypokalemic Autistic Sensory Overload (HypoASO) is a condition causing distress to autistic people.  Moderately loud sounds, like those around an indoor swimming pool, or shopping mall, can cause an autistic person great irritation, leading to covering their ears, a tantrum, or even self-injurious behaviour (SIB).  The same sensory overload can be caused by light, smell or touch.  

HypoASO is a condition that can be measured and treated.
HypoASO is related to two other conditions Hypokalemic Periodic Paralysis and Hypokalemic Sensory Overstimulation.

HypoASO is an ion-channel disorder triggered by intra/extra cellular concentrations of sodium and potassium.  Calcium may also play a role.  In simple terms, sodium is bad and potassium is good.
Therapy for HypoASO

The therapy for HypoASO is a diet rich in potassium but low in sodium; magnesium will also be beneficial, since it helps maintain the level of potassium.  People with HypoASO need to maintain a high level of potassium in their blood (> 5.0 mmol/L) in order to avoid triggering this ion channel disorder;  this is at the high upper level of the reference range for potassium.   Oral supplements of potassium with magnesium will also prove useful, but need to be spread out throughout the day, for best effect.  Time release tablets should be the most effective.  Very high levels of potassium are dangerous, so care is required.

Testing for HypoASO

Diet should not be changed on a whim.  A simple test can be carried out to check whether the individual is indeed affected by the disorder. 

1.       Find a sound which the person finds disturbing, like a baby crying.

2.       Download a recording of this sound.

3.       Set up a chair in a fixed location in a room with a strong sound system / Hi Fi

4.       Sit the subject in the chair and play the annoying sound at ever greater volume and see at what point the subject reacts strongly (e.g. covers ears)

5.       Repeat the experiment over  a few days to establish a steady base-line volume, at which the subject reacts, (for example volume setting 3, when the amplifier to goes 0-10)

6.       Give the subject an oral potassium supplement (say 250 mg) and wait 20 minutes

7.       Play the annoying sound and measure the volume at which ears are covered.

8.       If the volume is markedly higher than the base-line, you established earlier, then you have established HypoASO

9.       If the subject has an NT sibling, try it on them.  They will most likely show no difference with the potassium and do not have HypoASO



 

18 comments:

  1. My daughter, like many children on the spectrum, has noise sensitivities (although the intensity seems to vary daily based on factors we have not yet been able to identify). Similar to the family in the article you referenced, my dentist sometimes has a difficult time getting me numb for dental procedures. Thus, I suspect hypokalemic sensory overstimulation may be a factor for my daughter. The problem is, she will not sit for me to perform the test you describe above (when she figures out that I am going to play a sound she does not like, she covers her ears and runs away before I can even begin). I recently tried an indirect experiment in which I fed her a potassium heavy snack (banana, baked potato chips, and orange juice) immediately before attending a short marching band exhibition. She sat through the performance, but she covered her ears the entire time and commented afterwards that it had been a bit loud. I have no way of knowing how she would have reacted without the snack, but I was a bit discouraged that the potassium had not been enough to completely alleviate her sensitivity to the noise. My question are these: 1) What degree of relief can I realistically expect from oral potassium if my daughter does in fact have this condition. 2) Is the effect of potassium dose dependent? It seemed that the family in the article was using much larger doses of potassium than I could offer in a single snack. 3) Is it possible that serum potassium levels are the more important factor? In other words, if my daughter's serum potassium level was low, is it possible that we would not see much benefit of until her blood levels increased? (I don't actually know her current potassium level, but I will be requesting a test at her next ped's visit.) I have been able to find very little about this condition, so I am hoping that you might be able to offer some insights based on your knowledge and discussions with others who have this condition. Thanks!

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    1. You seem to need to give a sharp increase in potassium, so bananas have little impact. I am surprised how many people have found the same effect on their child, or on themselves in the case of Asperger's. They all agree that potassium in food does not help, it gets absorbed very gradually.

      I was surprised how many people are using this as a therapy, rather than just a diagnostic tool. You should not give excessive amounts of potassium.

      If you take your child to see a film/movie, it is much easier with 250mg of potassium just before. Then the loud sounds are not a problem. Monty just went to Jurassic World for a classmate's birthday; the film was extremely loud and lots of kids were screaming, but he sat through it with no problem and never covered his ears.

      I do not think a larger dose would have more effect. I have not tried a smaller dose. My tablets are 500mg effervescent tablets, I break in half. Always give with a glass of water.

      I think it is best to maintain potassium at the high end of normal.

      People with autism vary very much and some parents under/over react. If your child has sensory issues that cause her problems on a regular basis, then it certainly is worth testing. The daily intake is supposed to be about 3,000mg, so giving 250mg twice a day is not going to do harm, unless you are starting with very high blood levels.

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  2. Thanks for your reply, Peter. I just want to make sure I understand:

    1. For immediate short term relief, it is important to use a supplement tablet rather than food sources, as the effects of food are too gradual to induce the sharp increase in potassium necessary to alleviate sensitivities. Correct?
    2. The best ongoing, long term therapy is to maintain serum potassium levels that are at the high end of normal. Is this also best accomplished with a supplement tablet or are food sources equally effective in raising blood levels? As you already know, potassium supplements with a useful amount of mineral are not easy to acquire here in the US. My daughter's potassium level was at the low end of normal last Fall, so I see minimal risks with supplementation.

    Thanks!

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    1. Yes you understand correctly. Eat a diet rich in potassium, so as to have a good stable base level. Then add a couple of spikes/shorts a day with a supplement. Also avoid lots of sodium, since this will affect potassium. In the US potassium is limited to 100mg, but this just means two tablets rather than my half a tablet.

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    2. As an individual with sensory overload, probable autism, and a diagnosed rare ion channelopathy I may be able to help clarify why taking a supplement may work better than just trying to get it from food. I am very sensitive to even minor fluctuations in my potassium levels. When taking potassium in a banana or in a glass of orange juice for example I experience an insulin spike due to glucose intake. The same for a baked potato especially if I salt it. I can tolerate some carbs like a baked potatoe if I remove most of the pulp use some low sodium cheese or sourcream or even unsalted butter.http://medicguide.blogspot.com/2008/04/how-does-insulin-lower-blood-potassium.html

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  3. Peter,

    I have started my daughter on a potassium/magnesium regime (in consultation with a family friend who is a registered dietician). I definitely think it takes the edge off her sensory sensitivities and makes her more tolerant of loud noises. I'm wondering if you think the effect is cumulative, growing stronger as blood levels of potassium rise. For example, I can't imagine her doing well at Jurassic World as you describe above, at least not yet. Has it taken Monty some time to build up to that point?

    Thanks for your insight.

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    1. The effect of the extra potassium on the level in blood is short term, so it does not keep rising. You just get a short term spike in the level. The sensory issue is a combination of biological and behavioral. You can "train" your daughter to tolerate loud noises, by exposing her to them in a controlled way. Monty used to hate the sound of babies crying, but he was taught to accept it. The help from the potassium just makes it all much easier, so then you can gradually tolerate more and more loud noises. Then you get to the point of forgetting you do not like particular sounds. This all takes place gradually, so over months and years things improve.

      The same applies to problems like going to hairdressers and dentists.

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  4. Hi Peter,

    I am giving my daughter 400mg of Potassium citrate, once a day. She is now able to sit through her music lessons and the movies without noise cancelling headphones. Even very loud sounds don't bother her very much. In the past, she couldn't bear to be near toddlers and crying babies. Now, it doesn't bother her at all.

    We had initially tried one 200mg capsule, it didn't seem to do anything, maybe even caused a little irritability. I combined it with her magnesium and it took away the irritability but otherwise did nothing and I gave up on it. A couple of months ago I came upon Agnieszka's comment about her son having an excellent response when she dosed him with, I think, 4 tablets. I tried 400mg with 400mg of Magnesium taurate and its been great. Interestingly, it has also reduced my daughter's requirement of magnesium. She used to need anywhere from 800mg to 1000mg per day. Now, we just do the 400mg.

    I also noticed that if we miss one day, then the oversensitivity comes back the following day. It also takes a few hours to resolve after dosing.

    We are using the Pure Encapsulations brand which is 200mg potassium citrate per capsule.

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    1. Thanks RG. It is surprising how the solution is so simple and yet almost nobody is using it. The answer was there in the literature all the time. Also interesting how so many therapies that work for my son also work for your daughter.

      My son has gone from hating the sound of crying babies to actually liking it. He even searches on Youtube for "crying baby".

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    2. Andersen Tawil Lady here. I am on the autism spectrum have issues with sensory overload and treat with rather large doses of potassium several times a day. Many of us with this condition have an increase in our sensitivity even with small dips in our potassium levels. Things that lower our potassium include, insulin spikes, steroids, such as athsma inhalers, stress, heat and exercise. For many of us heat and exercise together is very problematic. I dose four times a day. I begin my day with 40 meqs. of potassium daily. I dose with an ace inhibitor rather high dosage that most physicians would never even consider ordering along with the large amounts of potassium I take. quinapril is the ace inhibitor I take. The closer I adhere to a high protein, high fat, high potassium low sodium low carb diet the better I do at getting my potassium levels up to the level that I feel well at. Five point six has been recorded as my level on days when I feel well, focused, physically strong and pain free about six times in the last six years. It is still a struggle for me. I will be seeing a nephrologist to see if might behoove me to try Keveysis the recently approved carbonic anhydrase inhibitor for Periodic paralysis and possibly andersen tawil syndrome. My daily intake of potassium is 100 meq. on a day with no muscle weakness or paralysis. My physician has approved 60 meq in case of an emergency. Sudden onset partial paralysis, racing heart, spiked blood pressure overheating. I am not suggesting you do this for your child but some general recommendations would be to dose your child with a lower dose like 200 miligrams upon waking, 200 miligrams after lunch and dinner and perhaps 200 miligrams before bed with a low carb piece of cheese low sugar yogurt etc. One of my strangest symptoms is sudden onset sleepiness if I consume something too salty. Some of my friends who are already on keveysis who expected they would have to increase the potassium due to potential loss of potassium have discovered they don't need to. This report was from a woman who herself and her son both stick to the diet rigorously. My son has a genetically identified mthfr mutation and I suspect I may have one as well. I will be receiving my raw genetic data from a research project that I am participating in. I will be especially interested in metabolic pathways, ion channel genes, malignant hyperthermia, cases in my family, van willbebrands, etc. Oh yes, I wanted to mention many with Andersen Tawil Syndrome Plus type also have many symptoms of connective tissue disorders in their genomes. I am also interested in looking at jewish disorders as many of my French Canadian ancestors may have middle eastern roots. So much intermarriage in French Canadian population in my family tree. I supplement magnesium, b12 and d, I am not certain of my MTHFR status so I haven't begun anything to address that as of yet. I must avoid anything that can work against ion channels.. I avoid herbicides and pesticides as well as wild mushrooms. My physician said it is possible I have a deficiency in trehalase that breaks down the sugars produced by mushrooms.. If you could take a gander at my family tree and notice how often I descend from Founders in the French Canadian early population you would have no doubt that it was very unlikely I would have made it through without some type of genetic disorder. Usually people brag about being descended from Royalty in their family trees. In my case the intermarriage may have been the cause of my health issues today. No wonder Queen Elizabeth swears by her homeopathy and won't leave home without it. PS almost every one in my family has numerous royal dopplegangers.. through all of the royal houses of Europe. Including the Hapsburgs with their very odd looking family tree.

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    3. Peter, that's so funny about your son seeking out crying baby sounds.

      I have also been puzzled by the number of therapies that seem to work for our kids, given that my daughter was regressive autism. Also interesting that many of the classic regressive autism therapies don't seem to do much for her. Like the mito cocktail.

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  5. Peter, I wanted to mention something odd. Since the 400mg of Potassium has been very good, I wanted to try an additional dose. I gave my daughter an extra dose of 400mg with Bumetanide and it immediately resulted in sound sensitivities! She grabbed her noise cancelling headphones, which we haven't used for a few months now since starting potassium, and put them on. I tried this thrice, and every time was the same, increased sound sensitivity, as if it cancelled out the previous dose.

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    1. RG, that is interesting. This kind of effect seems quite common, you need to experiment to get the right dose. This is true with low dose clonazepam and Alli found the same with sodium butyrate, 500mg was good but 1000mg was bad.

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    2. It is the same with mirtazapine as well.

      I guess the takeaway here is to try various doses up and down, before giving up on something.

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  6. My autistic daughter experienced an abrupt onset of auditory sensitivities following an illness. After months of trying to reverse this new problem, I stumbled upon your blog and began potassium/magnesium supplementation. It took about three weeks before we saw results, but then came a dramatic decrease in her sensitivities. She went from constantly covering her ears in response to even innocuous noises to rarely doing so and only when confronted with relatively noxious sounds. That was a year and a half ago. For a variety of reasons, we stopped her daily potassium/magnesium supplements a couple of months back. I have been surprised that her auditory sensitivities have not returned. My question is: do you think supplementation can bring about a permanent reversal of the problem (channelopathy?) that led to the sensitivities? Or, do you think something else changed during the time we were supplementing that reversed the problem on its own and made the potassium/magnesium no longer necessary?

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    1. Firstly, I am glad that the problem has gone away.

      I think that in autism there is always a combination of behavior and biology. So you have a big problem with loud noises, so you get used to automatically over-reacting to sound. This then becomes an acquired behavior. The potassium does have a biological effect, but after a time the lack of sensory overload has made her lose the acquired behavior to automatically cover her ears. It is like you have hit the reset button.

      It is quite possible that if she hears some really horrible sound in future the behavior might return.

      If the problem reappears, you now know how to make it go away.

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  7. This might be totally unrelated, but looking for potassium dosages for children I noticed that the daily intake should rise unproportionally between the age 1-3 years. Is it just a coincidence that this also is the time frame when autistic traits appear?
    /Ling

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