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6 comments:

  1. Kevin17 November 2019 at 04:15

    Hello Peter - my son is almost 6 with ASD and ID (had hypoxic ishemic event in utero/birth and significant interventions in the NICU). we've tried almost every biomedical treatment available from hard tank HBOT, MB12 injections, yasko protcol, walsh protocol, NAC, glutathione IV, thyroid therapies, laser therapy, etc, etc - to no avail. Nothing seems to make a material impact. We did try 1/4 pill clemastine and noticed an increase in language last year however it didn't stick. Have also tried verapamil. We relocated within northeast USA for my job and have noticed a severe regression since relocating - even from the low baseline. My son had been at 7-8 word fragmented sentences, now will not engage at all other than one word utterances. It went from "where is the black car toy" to just having a meltdown. Has also had significant visual stimms and is not really present but now has extreme attachments to a picture of a fan from a relative's house (perhaps reminds him of the past before we moved?). its been difficult to isolate if this is stress from the relo since he cognitively cannot process what happened, or biochemically something is off (we were giving clemastine throughout the move - not sure if its negative reaction there). he went from being moderate ASD with an ID to severe ASD with an ID. we are trying to get an Rx for bumentanide. not sure if you have any thoughts on 1) the regression since the relocation or 2) the overall lack of success with any treatment we've tried over the past 5+ yrs). any feedback is greatly appreciated. thank you, kevin.

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    1. Peter Lloyd-Thomas17 November 2019 at 13:23

      Kevin, relocation can be extremely stressful for a child with autism and ID.

      At the age of 8, my son’s long time 1:1 assistant left. This triggered a severe regression with self-injury and aggression towards others. It lasted almost a year.

      Once things have got back to “normal”, I would definitely try Clemastine again. Rethink the dose perhaps. In another reader whose child suffered hypoxia it was effective.

      I think you need to find a clever, open-minded, imaginative doctor. There might be some diagnostics tests that might be helpful. There are very few such doctors anywhere, one who does seem to fit the bill is in your part of the US, Dr Harumi Jyonouchi. She is an immunologist who treats people with autism and believes in personalized medicine. You have to be able to think out of the box, not just prescribe the same handful of medicines to everyone (typical autism doctor approach).

      I would think an MRI would be helpful, but you need this organized by someone who knows what they are looking for, to make the most of the opportunity (there is also fMRI).

      Bumetanide may be helpful and it is worth a trial.

      If you knew myelin was a problem you could consider Ibubilast and indeed DMF.

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  2. Kevin20 November 2019 at 05:30

    Thanks for your reply, Peter. That's helpful context with respect to your son's regression when his aide left - we've noticed SIB for the first time (hitting his face hard enough to leave scratches). We are thinking of trying verapamil again for the SIB.

    One additional question - we are fairly certain our son has extremely high oxidative stress - we've gotten his glutathione tested and it was near zero. We've tried NAC many times (even dosing as high as 2g/day broken up) but have never had success. Have you any thoughts on NAC being ineffective where there is high oxidative stress?


    Thanks,
    Kevin

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    1. Peter Lloyd-Thomas20 November 2019 at 10:02

      Kevin, normally you are measuring the GSH/GSSG ratio. GSH = glutathione. The lowest oxidative damage corresponds to higher the ratio. It is a measure of "cellular stress".

      In certain forms of cancer the ratio can be as low as 1. In healthy people GSH/GSSG is about 100.

      You can increase the ratio with exercise. You can add GSH precursors like NAC. You can reduce the source of the oxidative stress – not so simple. You can turn on the antioxidant genes by activating Nrf-2. You can improve GSH recycling, GSH is used up and the result is GSSG, but GSSG then gets recycled back to GSH. You need enough selenium.

      Oral antioxidants like NAC are not potent, which is why doctors prescribe intravenous antioxidants (but not it seems in the US). This might be what is happening in your case. My son's Grandfather has I/V ALA and oral ALA and finds I/V ALA 100x better for his diabetic neuropathy. ALA is very similar to NAC.

      If you son's GSH/GSSG ratio is very low, that is highly relevant. Your doctor should investigate. There might be an underlying undiagnosed problem, there might be a problem with the enzymes GPx1, GPx2, GPx3 and GPx4 (glutathione peroxodases). There might be an issue that would show up on genetic testing.

      I think you need a clever doctor.

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  3. Kevin18 December 2019 at 05:23

    Hi Peter -

    We found a biomedical doctor who prescribed Bumetanide. The starting dosage is 0.5mg 2x/day. Our son has been on it for two days with no noticeable effect. In your experience how long does it take for an effect to show? Have there been any reports of any negative effects?

    Thanks as always,
    Kevin

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    1. Peter Lloyd-Thomas18 December 2019 at 09:45

      Kevin, I think everything you likely need to know is here:-

      https://epiphanyasd.blogspot.com/2019/06/the-safe-use-of-bumetanide-in-children.html

      In my son taking 1mg once a day it took 2 weeks to really see the effect. In some people it takes longer.

      I found 1mg once a day much more effective than 0.5mg twice a day.

      In the trials the bigger the dose the bigger the effect.

      The negative effects are usually caused by not adding back potassium to compensate for all the diuresis. A small number of people have an allergy to sulfonamide drugs, this is explained in the guide above.

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