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Tuesday 29 September 2020

Is the Door about to Close on Alternative Medical Treatments for Autism in France? Plus, more on Dravet Syndrome and RIP Charlotte Figi

 

I was talking to the organizers of an autism conference in the US and one question that came up was, do I know a clinician who prescribes potassium bromide (KBr).

It is a question that illustrates the problem in treating autism. In Germany, Austria and some neighbouring countries KBr is an established treatment for pediatric epilepsy and particularly some specific conditions like Dravet sydrome. Dravet syndrome is a rare, catastrophic, lifelong form of epilepsy which begins in the first year of life.  It is one of those conditions where parents in the UK are begging to use cannabis. Dravet syndrome may be accompanied by an autism diagnosis.  In the US KBr is currently only used for canine epilepsy.

Regular readers of this blog may recall that Dravet syndrome responds to potassium bromide (KBr) and should respond to low dose clonazepam (it works in the mouse model).

I proposed KBr as an autism therapy and even found an “autism” case history from 150 years ago. KBr was the only effective therapy for epilepsy back then, so a child with epilepsy and severe autism might be lucky and get KBr prescribed, as in the case history I highlighted.  It worked well for that little girl and she developed the ability to play appropriately with a doll - that is what caught my attention.

Is KBr a widely used autism therapy in Europe?  Definitely not.  Only a handful of people use it for autism, but it is an approved safe therapy for pediatric epilepsy.

KBr will have a similar effect on GABA as bumetanide, but via a different mechanism, (some Cl- gets replaced by Br- inside neurons, this lowers the Cl- concentration and so changes the effect of GABA).

The drawback with KBr is bromo-acne, or spots.  I suppose if your child has Dravet Syndrome, or very severe autism, you will not be bothered by some spots. 

150 years ago they used a potion containing arsenic to treat the spots, this was a very bad idea. Arsenic is poisonous.

Charlotte Figi, who was the inspiration for the popular medical cannabis strain called Charlotte's Web, had Dravet syndrome. She died this year, aged 13. 

I am told that you actually need some THC, rather than just CBD (cannabidiol), to be effective, but over time Charlotte’s commercial product contained less THC and I am told lost its effect.

Stiripentol, a positive allosteric modulator of GABAA receptors, is an approved therapy to treat Dravet Syndrome. 

Dravet syndrome is usually caused by the ion channel Nav1.1

You might wonder why does a sodium ion channel cause a defect in GABA signalling.

 

Delayed maturation of GABAergic signaling in the Scn1a and Scn1b mouse models of Dravet Syndrome

We found that GABAergic signaling remains immature in both DS models, with a depolarized reversal potential for GABAA-evoked currents compared to wildtype in the third postnatal week. Treatment of Scn1b−/− mice with bumetanide resulted in a delay in SUDEP onset compared to controls in a subset of mice, without prevention of seizure activity or amelioration of failure to thrive. We propose that delayed maturation of GABAergic signaling may contribute to epileptogenesis in SCN1B- and SCN1A-linked DS. Thus, targeting the polarity of GABAergic signaling in brain may be an effective therapeutic strategy to reduce SUDEP risk in DS.

 

SUDEP is Sudden Unexpected Death in Epilepsy and this is what is likely to occur in about 1 in 5 children with Dravet Syndrome. These deaths would appear to be, to some extent, preventable if you read the science and apply it.

This takes me to France where well-intentioned Autism Moms/Mamans are seeking to rein in 50 French doctors thought to be prescribing autism therapies off-label to 5,000 children.

Are these crazy therapies? or beneficial therapies? or perhaps a mixture of both?  For sure they are unorthodox therapies.

Olivia Cattan thinks French Moms/Mamans should be using behavioral methods (ABA, TEACCH etc) because they worked well for her young son.  Her charity, SOS Autisme, is trying to stop French doctors treating other people’s children with autism. 

The same thing happened a few years ago in the UK. A lone UK doctor was prescribing drugs to children with autism, word spread and other doctors reported him the medical regulator, who banned him from seeing patients with autism.

The US is the Wild West by comparison – anything goes.  A doctor can tweet "vaccines DO cause autism" and there are no consequences. Today, governments around the world are buying up future Covid-19 vaccines for their citizens and one factor in agreeing the price is whether the government indemnifies the producer for legal claims due to vaccine side effects. Rare side effects are possible even with a "good" vaccine.

I did ask Dr Frye about MAPS doctors getting into trouble with the authorities.  He told me the big issue is the occasional divorced spouse who objects to a child’s therapy.


France probes doctors prescribing antibiotics for autism

French prosecutors said Thursday that they had opened an inquiry into dozens of doctors prescribing antibiotics and other drugs as a purported treatment for autism in children, potentially endangering their health.

French prosecutors said Thursday that they had opened an inquiry into dozens of doctors prescribing antibiotics and other drugs as a purported treatment for autism in children, potentially endangering their health. The investigation comes after an alert by France's ANSM medicines watchdog that doctors were prescribing long-term courses of antibiotics and drugs against metal poisoning to autistic children. According to Olivia Cattan, who heads the help group SOS Autisme and has written a book on the practice, some 50 doctors in France are thought to be treating up to 5,000 children this way. Such prescriptions have been linked to controversial ideas from Nobel Medicine Prize laureate Luc Montagnier, honored in 2008 for his co-discovery of the virus that causes AIDS, but frequently dismissed by the medical community for his unconventional ideas in recent years.

The Paris prosecutor's office said its public health department has been entrusted with the probe into charges of "endangering the lives of others" and "offences related to research involving human beings." On Tuesday, the ANSM said it had referred the matter, flagged by Cattan, to prosecutors after collecting evidence including parents' testimony and prescription sheets. The watchdog said the children were prescribed antibiotics, anti-fungal, anti-parasitic or anti-viral drugs, as well as treatments for heavy metal ingestion that are normally reserved for use in case of poisoning. The ANSM "formally advises against these uses, for which these drugs have not shown to be effective and which put these children at risk, particularly with prolonged use." Effects can include digestive, cardiovascular and skin disorders, while misuse of antibiotics can lead to drug resistance that undermines the effectiveness of future treatments. The ANSM has also alerted French doctors' and pharmacists' associations. 

According to SOS Autisme:-

L’autisme n’est pas une déficience mentale, ce n’est pas une maladie, ce n’est pas une fatalité, et cela peut toucher tout le monde.

Aujourd’hui, grâce aux méthodes cognitives (ABA, Teach, Feuerstein, Pecs…). tous nos enfants peuvent progresser et devenir des êtres autonomes, des citoyens qui fondent une famille et qui travaillent.

 

Autism is not a mental disability, it is not a disease, it is not a destiny, and it can affect anyone.

Today, thanks to cognitive methods (ABA, TEACCH, Feuerstein, PECS ...). all our children can progress and become independent, people who start a family and who work.

 

The highlighted part in yellow would be great if this was true, but it is not.  Tell that to the Paris Prosecutor.

All these behavioral therapies can help, but go and look at autistic people born in the 1990s in the US, who had rich parents and who used ABA, TEACCH, PECS etc, for two decades.

Are they all now independent people who started a family and who hold down a meaningful job?  No.

Sadly, they are either still living at home with Mom and Dad, or they got packed off to live in a group home, or some other sheltered living accommodation. Life expectancy is short and parents are likely to outlive their child.

If you want to know autism reality to adulthood, go and talk to old hands with no vested interest like Catherine Lord, Bryna Siegel or even Manuel Casanova. 

 

Conclusion

There are many obstacles to treating and educating a child with severe autism and this is clearly reflected in the outcome in adulthood.  

Where you live can matter much more than how much money you have.

Yes, there are some crazy sounding autism therapies.

Yes, there are some people seeking to make a lot of money out of gullible parents.

Yes, there are labs overcharging for "special" diagnostic tests.

But, that is not the complete picture.

There are also some therapies that might look bizarre to a lay person, but if you read the science, they are very well founded.  They are experimental therapies.

The risks of not treating severe autism are huge; death due to seizures, drowning and accidents are very common and according to the Karolinska Institute such people have a life expectancy of under 40 years.   Too many continue to die in childhood. 

I am no fan of DAN doctors, but it looks like only one death has ever been associated with their treatment.  In 2005 a British boy was given intravenous chelation in a clinic near Pittsburgh; he went into cardiac arrest and died.

The French lady behind SOS Autisme is a big fan of ABA and I hope her son is fully functional when he reaches adulthood. Most children with severe autism become adults with severe autism, regardless of how much ABA therapy they receive, they are just more functional. Their life has no fairy tale ending.

For a transformative effect on outcome, you have to address the biological problems.  By all means, combine this with whatever educational therapy works for the child.   I am also a fan of ABA, but a realistic one; I continue to see its benefits. But, no amount of ABA could teach my son even basic mathematics, I know, I tried it to the age of 9.  Now he can do algebra and solve equations, sometimes better than his NT classmates. I am delighted to contradict SOS Autisme - autism is a mental disability and it is a disease, but it is treatable. 

Personalized therapy / precision medicine does not lend itself to clinical trials with thousands of participants, by definition you are treating a rare combination of dysfunctions. 

The important thing is that personalized therapy must be both safe and effective.

No progress without some ruffled feathers.

 




 

 

35 comments:

  1. Dear Peter, this frustration we all feel had lately been cropping up more and more in your posts. Its hard watching what is going on and not feeling it. Humans as animals are signficantly hindered in developing solutions by something I call the ‘aliens effect’ - I ask a person who they trust absolutely, a 100 percent. People either name a public figure or a close one. Then I ask them what would they think if this person told them that just 2 hours ago they saw a UFO land and conversed with 3 strange looking aliens. Usually people have a lot of face expressions and then get uncertain, most often they say they would not believe this person. We have Neil Armstrong, a man tested to god knows what standards, sent to the moon, his mind and body supremely capable. When he joined a south american expedition in search of a liibrary left behind by aliens, he was automatically dismissed as crazy. As you yourself say, a Nobel prize is nothing compared to what a mom in France thinks about ABA, because the moms
    opinion is just what people want to hear. It has been 3-4 years since I have started discussing with my husband the idiocy that all humans belong to the same species. I would like to become part of a separate species, a smarter one which doesn’t ask reality to conform to whatever one wishes was true. The number of asd parents I have met who want the treatment for their child to be in line with their beliefs (be they ‘science says its untreatable’ or ‘cucumber juice all the way’ or ‘the monks will heal him’) is unbelievable. Recently a mother I met became offended because I asked ‘what type of autism’ her son has - as in what his autism looks like, is he stimmy, aggressive, ocd, rigid routines, speechwise...apparently her son has some golden version of autism which just makes him a lovely being (albeit one unable to speak). Maybe the asd kids who have more rational, slightly aspie parents, fare better. If a monk can cure my child, I’m all for it, cucumber as well, I don’t care. To me, the outcome matters more, but to the vast majority of people, their world needs beliefs to stay upright. Less and less freedom is definitely the future. Our plan is 2-3 more years here and then off to a mediterranean island. Away from everything.

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    1. tpes, I am very happy with my son's progress and years ago I realized you cannot change most other people's minds on treating autism. My frustration is really more sadness for others, who do not help themselves and their child.

      The future is FDA/EMA approved therapies given by your local pediatrician. That will take many decades, but then parents will just follow their instructions and hopefully the child will benefit.

      There is another group of people who want to hear about scientific innovations and mouse models, but cannot take the plunge and do something about it.

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    2. I agree 100% tpes, 100%!!! I imagine most if not all of Peter's readers probably agree too.

      I will try anything, do anything, spare no expense (within reason of course), to help my son emerge from his issues. He has many, and they are steadily improving as we work on them daily with all the tools we can find and have tested that work for us. My "belief system" is comprised of one sentence: I just want my son to overcome autism and I'll do whatever it takes. That's it.
      I hope you are finding all you need in your fight as well.

      All my best to everyone reading!

      MKate

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  2. Hello Peter, I hope you and your family are doing well, here in México it's more difficult to find a doctor that will treat Autism with personalized off label medicine than to get the medications by yourself. Sometimes I do wish that my son had an Autism doctor, because I feel confident when I'm giving him a treatment that is part of Monty's Polypill, but when it comes to trying another intervention I get very nervous about the dosage and interactions.

    My son's allergies seem to be becoming more obvious, besides his GI issues and respiratory allergy he has mild hypopigmentation patches on his forehead which are growing, and though Verapamil does help his problems are not resolved, I guess I feel stuck at this point, to test his allergies would be costly, and I don't know if would be useful or not, so I have to choose wisely, investing in something means sacrificing other priorities for his treatment. He had responded well to Pentoxifylline and I've been thinking about trying it again, I also bought Pioglitazone weeks ago but haven't tried it. Yesterday I read your post about PEA and it's very interesting, one of my packages with supplements was retained, and iHerb had to make me a refund, so I'm trying another method to import them, I ordered Carnosine and Magnesium, but now I regret not ordering PEA since it may help him more with his allergies. If you can give me any suggestion I would appreciate it.

    I think my son has done very well with his interventions, the last one was NAC, and I had to use Lysomucil instead of NAC Sustain, I only give him 600mg divided in two per day and only his vocal stimming has diminished. He struggles with two way conversations and sometimes he switches words, instead of out he says in for example, and his OCD and stimming haven't improved much but he has done very well in his google meetings with his teachers, I even cried when they put him on a test because he did so well. Thank you Peter for all the effort that you put in your blog so information is more available and understandable for parents. I think everything would be different if he didn't have his treatment.

    I know someone that works for the laboratory that makes Miccil and lives in my city, she informed me when Miccil was going to be available if someone needs information regarding Miccil or if someone needs help getting it, this is my email: tallerquihui@gmail.com. I have no financial interest.

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    1. You could try fish oil. I've had tremendous success this past summer after having NO success a few years ago. At this point in our son's treatment, after sticking with NAC and butenamide, we have seen big things from a blend of EPA/EFA fish oils... really tremendous benefits. It's helped his apraxia in so many ways and has helped with allergies and just general calmness. It is easy to order from amazon and probably iherb. It does need to be refrigerated. My son likes the lemon flavor and drinks it in apple juice. The formula we use: 2 Nordic Naturals brand Pro EFA caps with 1 Nordic Natural Pro EPA caps/2 times daily. There are two kinds of oil from NN we use actually mixed together to get a certain ratio of the components of fish oil. It's easy enough to try and no interactions at such a low does. Best of luck!

      MKate

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  3. Lisa, treating allergy is not an exact science. There are some expensive tests that look great, but are questionable.

    Where we live Ketotifen syrup is a very cheap mast cell stabilizer that is well worth trying for a few weeks.

    Cromolyn Sodium is widely used, but is expensive.

    Rupatadine is another mast cell stabilizer that research shows is effective in some skin conditions. If it is made in Mexico, it should be cheap like an antihistamine.

    All the mast cell stabilizers need a few weeks to show their full effect. Find what works best in your specific case.

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    1. Thank you Peter for your response, I started with a small dose of Ketotifen and he has tolerated it well. I've been looking into transfer factor, though I'm still unsure. I found a doctor that prescribes it, apparently there are many fake transfer factors that they say that have been made in the IPN University. So you can get the original Transferon from only two clinics and the doctor that I found. They also have other products like Pterostilbene and Bacterial Immunotherapy. Here are the links:

      https://leucotec.mx/

      https://saludintegraldoctorluja.mx/

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    2. Lisa, there are very many immuno-therapies. I would look for an affordable solution that does the job.

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    3. Thank you Peter, these two weeks his OCD has been worse, his irrational fears have grown, he is now even afraid of showering, and last night he grinded his teeth horribly while asleep so I called a Dr. friend of my family and she suggested me to take him to a Paidopsychiatrist, I did expect another answer. OCD is something alarming, at least to me. I had thought of PANS or Pandas before, but my son doesn't have involuntary tics, and his OCD improved when he started with Bumetanide. I do think that something is triggering his OCD and I suspect it's immunologic, but I'm not a doctor, I don't think it's just a mental disease. I can't believe how children are being misdiagnosed and left untreated, it seems as if we are living in the Inquisition.

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    4. Tics are not necessary for a pans pandas diagnosis. I would do a Cunningham panel if I were you, viral titers, tests for strep (I forget their names but you can find that online). With these results you can ask for an online consult with dr Kovacevic and go from there. It is worthy of exploring. If he has pans pandas, OCD is the literal tip of the iceberg - the only thing you see, but possibly causing many issues.

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    5. Thank you for the information Tpes.

      Delete
  4. Hi Peter maybe it’s a dumb question, but what would you class as “severe autism”?

    Personally, I believe all autism visible before 5 is severe, whether limited poor speech is present or not because of the implications to education social development, risk of accidents and future independent living prospects.

    I’m not including the aspie teenager that goes to mainstream school & has social / behaviour problems & its only at that point someone thinks there`s a problem.

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    1. Ross there is a big difference between "severe" autism and "serious" autism.

      For severity of autism I would leave it to proven medical rating systems, like CARS (Childhood Autism Rating Scale). In CARS 30 and above is autism and 37 and above is severe autism. If you score 28 you have some features of autism, but not severe enough for any medical diagnosis.

      Serious autism is when even mild autism has serious consequences, from an eating disorder to suicide.

      I think everyone should be given their "score" when they get a diagnosis.

      The reality is many people in the CDC's definition of autism (which even includes "school-diagnosed" autism) likely have CARS less than 30. The current narrative is to over-diagnose autism, because kids then get extra help and schools get extra funding.

      Delete
    2. Roger, some autism Moms (it is more often Moms than Dads) are very motivated to advocate for their view of autism. They are convinced they are right and others are wrong – this is a common trait.

      It is hard to be objective, accept new information and change your opinions. These are the people to listen to.

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    3. Roger Kulp - "Severe" autism is generally classified as autism with profound intellectual disabilty,very low IQ,and serious behavioural challenges.

      Thats what i thought but looking up a CARS scoring card my part verbal 5 year old, that can ask for things, express his basic needs, count to 20 & knows all his phonics scored 46. Ok im no qualified expert and i mostly scored him 3 out of 4 in severity which i thought was realistic.

      But as i suspected there is a BIG difference from your child suspected of autism at 2-4 and an older kid where it gets picked up slightly later

      Delete
  5. Hi Peter, I hope you are fine.
    Esketamine is available in Greece and these days I am going to find out what this means in practice.
    Do you think it might worth a try for my adult Asperger's son?
    Peter, I am happy to say that my son has graduated university, school of electrical and computer engineering with masters degree, but he still feels fearful, anxious, overstimulated and quite depressed.
    Your opinion would be greatly appreciated.
    Petra

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    1. Petra, congratulations on your son's graduation!

      There is logic to try Esketamine nasal spray. But, as you will see in the paper below, it can also make things worse for some people

      Brain NMDA Receptors in Schizophrenia and Depression
      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7355879/

      I think the vasopressin nasal spray looks interesting for improving mood. Google "Vasopressin Autism Stanford". You could ask your research doctor about that. He could ask the hospital pharmacy to make you this. This one has been trialed on children and is safe.

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    2. At least one effect of ketamine on depression is mediated by serotonin 5HT1B receptors:
      https://www.nature.com/articles/s41398-020-0844-4

      I think antimigraine triptans work on that receptor, but I'm not sure if it is in the right direction.

      Ketamine has been tried in kids with hyperfunctioning NMDArs, but not long-term.

      /Ling

      /Ling

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  6. Hi Peter can I ask how long you thing bumetanide takes work?we have been on it for a month now but we haven’t seen any calming or speech .

    We have seen some cognitive gains and seems to be more present and alert and stopping some things he does like weeing on the floor in the toilet and taking off clothes after getting dressed .He seems to be more aware.How long does it take before one knows he’s a responder ?

    Thanks

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    1. From what you have written, he clearly is a responder. He is more present, aware and alert - this is what you are looking for. Now he will be able to pick up new skills much faster.

      Bumetanide is not a drug for calming.

      Speech is very complex. It depends why he is not speaking. There are many reasons.

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  7. Thanks for your email Peter .This is very reassuring ask was thinking he’s not responding .

    Do you think adding leucovorin will help with his speech.He can attempt to say things when prompted but will usually not except when pushed .He tries to repeat what’s on flash cards but the words don’t come out right .He usually tries to say the first Syllable if it’s long but is able to repeat short words on demand .What part of the polypill do you think I can add?

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    1. Leucovorin might be well worth trying now to accelerate the development of speech.

      Now he is on bumetanide, he should respond much better to any kind of speech therapy.

      You can practice "manding", which is getting him to request items. There are youtube videos explaining it. Just google "manding autism". Manding = making a verbal request for something. You gradually raise your target until he is requesting/manding hundreds of time a day. This is how you develop speech in people who can talk, but do not really want to.

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    2. Thanks so much Peter .I will do this .Many thanks for your prompt response

      Delete
  8. We have started the ‘worsening’ part after IVIG we were warned about. Immunology being the part of science where guesswork is a daily thing, nobody know whether there will be improvements to follow, but thats not what I am writing about. Tonight we experienced one PANS Pandas symptom we have seen previously and one which I always considered to be quite odd - if stressed (mostly if I admonish her) she will flop to the ground and her legs below the knees will stop working. if propped up, she will fall down even if it means significant hurt - they just don’t work. I have to give a lot of reassurance, hugs, kisses, massage etc for 10-15 minutes and they will start working again. So I asked around in my biggest Pandas group and as always, smart parents are the best researchers. A mother whose child had this odd symptom as well discovered it to be an adrenaline overreaction connected to tryptophane steal, which you wrote about ages ago. I have already started her on round the clock Ibuprofen, and will look into additional ways to lower cytokines. Apparently L Theanine helped in the case of that mom’s child, so will try that as well. Just amazing that we can get all these answers now.

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    1. Tpes, I hope your daughter got better and benefited from IVIG. Do you mind sharing practicalities? How did you organize it - via public healthcare or a private clinic? Are IVIG products easily available at pharmacies in Serbia?

      On the final straight to make IVIG available for neuroimmune disorders where I live, it turned out that all immune globulin products are out of stock here and I wonder if it is a local issue or rather global and covid related.

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    2. Hello, as far as practicalities go: in our eastern european country, doctors with a speciality still work largely unchecked by the state - if they say they need thing A to treat thing B, they are highly likely to get it. We heard of an immunologist who heeds whatever dr Kovacevic from the US prescribes and we met with him and got dr Kovacevics opinion. We asked which ivig product we would get, and the specialist said ‘whatever is in stock when I order’ (from the central stock of state hospitals). What was in stock is IG Vena, an italian product from their self sufficiency medical prpduction which they have in place so they do not rely on other countries for basic medical necessities. Its really a low cost option but still. I believe I have heard that ivig is available in pharmacies to buy, but it is rather pricey. My daughters one dose costs around 2500 eur. She spent 2 days, each 8h, in the hospital, with mild midazolam sedation for the beginning, to out the iv in. She behaved very nicely. I sent my husband with her because medical personnel always acts more respectful with a male parent, if there are issues to be ironed out. In the end there was one issue, the IV fluid startd foaming, which neccessitates that the foamy part be thrown away, and my predictions were true. The nurse tried to dismiss my husband, but he stood his ground. Had i done that to a nurse, i would have been called hysterical, and female to female territorialness would have come into play. We did our ivig after a big covid wave, so I don’t know why there is no ivig products where you live. My daughter had a strange 3-4 weeks after. Then a lovely 10 days, all oppositional behaviour we had been dealing with for years gone. And the past 5 days have been strange again - it seems she is regaining some tics, especially vocal ones, and verbalisation is way down these past 5 days. Honestly, this is all just one big merry go round.

      Delete
    3. Thank you for sharing the details. Clearly it would be great to have a good response predictor for such an expensive treatment that requires long and uncomfortable infusions. I am impressed that your daughter could do with this.

      I would say Poland is similar with regard to male/female parents vs. professionals, otherwise the situation looks different: IVIG use is strictly regulated in public healthcare with very tight criteria. Actually we are in the middle of huge covid wave with Poland being in the top 3 European cuntries regarding daily covid deaths. The pharmacies stock issue might be related.

      Delete
    4. I believe you should contact expand, the european association for neuroimmune diseases. You can find us on facebook right now because the site is going up. Its a patient advocacy org for pans/pandas children and their parents, and some exciting lobbying and research will happen in the very near future. i am in the board, namely as secretary.

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    5. Thanks, could you share the link to the association fb profile? I was not able to find it.

      This is not directly related to the IVIG clinic, but I digged up an old case report about periodic autoinflammatory disease presenting as PANDAS and wonder if there was any serious research into potential link between these conditions:
      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6445174/

      Delete
  9. I forgot to add: apparently, TNF will cause te tryptophane steal, and IVIG requires an increase in TNF to work. I pray this is what is happening.

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    1. That's very interesting tpes!
      I'd be curious if you had any paper on the adrenaline-tryptophan part. I can see that Ibuprofen will lower TNFa, but you wrote that "IVIG requires an increase in TNF to work" and I feel like I'm not totally following...

      In the meantime, pamper & cuddle with your loved one and I'll cross my fingers for a hasty recovery!

      /Ling

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  10. I forgot to add the paper showing TNF as (from what I understand) an integral part of IVIG doing its job - https://www.sciencedirect.com/science/article/abs/pii/S1043466614005602
    We are already on the upswing, leaving the worst behind. Fingers crossed! There will definitely be lots of love, cuddling and carrot cake for a girl who spent 2x8h hooked up to an IV without much bother.

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  11. Here is some exciting news about a cheap supplement which I already give to my son for other reasons has shown in MS patients to be effective in driving myelination:

    Press Release:

    https://www.sciencedaily.com/releases/2020/10/201007145416.htm

    Paper:

    https://www.jbc.org/content/early/2020/09/25/jbc.RA120.015595

    You can get it at BulkSupplements for a good deal and since it is a sugar, you can mix it into just about anything. Since we already use NAG as is, I can't say if there is any change in improvement in my son because I was not looking for it, but it would be interesting if some people trialed NAG or even NAG + Clemestine (we also give this) to see if there were any significant improvements in behavior and cognition over the course of a month or so. And NAG is perfectly safe and if it wasn't babies would be dying like crazy because it is very high in breast milk.

    N-Acetyl-Glucosamine is essentially Glucosamine with an acetyl group added on which in theory allows it to get into the brain (just like N-Acetyl-Cysteine). Glucosamine itself though known mostly for its joint repairing properties, is a cheap and fascinating supplement in and of itself for many other reasons, especially longevity.

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    1. That is interesting Tyler.

      Back in 2011 another study suggested the same thing.

      N-Acetylglucosamine Inhibits T-helper 1 (Th1)/T-helper 17 (Th17) Cell Responses and Treats Experimental Autoimmune Encephalomyelitis
      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3220534/

      "These data suggest that oral GlcNAc may provide an inexpensive and nontoxic oral therapeutic agent for MS that directly targets an underlying molecular mechanism causal of disease."

      Clearly if it is something available cheaply at BulkSupplements there is no rush to follow up the research.

      If someone has MS, triggering more oligodendrogenesis from precursor cells can only be a good thing.

      Delete
    2. Wow, really nice find of you Tyler!
      How do you add it to food/how much do you use per day and weight/are there any taste issues?

      If you have other links to its effects (joints?) up your sleeve please share!

      /Ling

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