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Wednesday, 28 February 2018

Winter Olympics




Today’s post is about the non-academic benefits of treating classic autism, which mainly seem to come from raising cognition (IQ).

Our reader Liz from Australia, whose five year old daughter has been using Bumetanide for two years, was telling us recently in her comments how her daughter can now go surfing with her four brothers.
While we do all want success at school and mastering practical skills like doing up shoe laces, the importance of being able to actively participate with siblings should not be underestimated.
Some siblings may be angels, but quite often there is resentment about having a sibling with special needs. One way to compensate is to have cool talents like surfing, skiing, fencing - something you can do well.

When I started this blog I was contacted by an Australian doctor who has a son with autism, she went to the same university as me. Her son was diagnosed early with severe autism with MR/ID, but progressed remarkably well and attended a mainstream school. His chosen sport at school was fencing (sword fighting). At that time Monty’s big brother was also having fencing classes and had all the equipment. I recall at the time thinking there is no way Monty could ever do that. Five years later though, Monty and his big brother are fighting together with homemade swords.
Fencing can look very impressive and certainly seems to count as a cool activity by modern day teenagers.

The main sport of Monty, now aged 14 with autism, is swimming - particularly underwater. While people with classic autism are at a greatly elevated risk of drowning, that is no longer something we have to worry about. Monty is more likely to be the rescuer than the one in trouble. If we lived in Australia, he too would be going to the beach to surf.
We did have swimming lessons, but only post-Polypill did Monty get competent. Now he swims really well and can swim a very long way underwater.

I do think that things that improve exercise endurance may be helpful to those with a neurological condition like autism. Just look what Nordic skiers, cyclists and tennis stars get into trouble for taking - much relates to getting more output from your mitochondria.  High altitude training is not an option for us, but swimming underwater may have a similar effect. There actually is research about what changes biologically in endurance divers (holding their breath) and people who train at high altitude. I suspect that moderate diving may improve brain perfusion, extreme diving is different because they are functioning when a typical person would have lost consciousness due to lack of oxygen. Moderate diving, like high altitude training, should increase how much oxygen your blood can carry.
Native Andean and Himalayan populations have better oxygenation at birth, enlarged lung volumes throughout life, and a higher capacity for exercise. Tibetans demonstrate a sustained increase in cerebral blood flow, but a typical hemoglobin concentration, whereas in the Andes they have significantly elevated levels of hemoglobin. Hemoglobin/haemoglobin is the protein in your blood that transports the oxygen around your body.  How do the Tibetans manage without extra hemoglobin?

“The Tibetan hemoglobin distribution closely resembled that from a comparable, sea-level sample from the United States whereas the Aymara (Andes) distribution was shifted toward 3-4 gm/dl higher values.”


The performance-enhancing effect of altitude training appears not to be due to increased red blood cell count or increased hemoglobin, as thought until recently, but rather something called Red Blood Cell (RBC) Hypoxic Metabolic Reprograming.
In essence, the hemoglobin becomes better at holding on to oxygen. Perhaps this is what Tibetans do.
Lay people suggest that:
More hemoglobin = More oxygen delivery.
It appears that you do not need more hemoglobin, you just need to make your existing hemoglobin work better.  And for that you need to give it a challenge; perhaps regularly swimming a long way on a single breath counts?


When scientists examined the oxygen-carrying proteins, known as hemoglobin, in volunteers’ red blood cells, they found multiple changes affecting how tightly it hung onto its oxygen load. Roach says a simplistic analogy is comparing this to what happens when baseball players loosen their grip on a mitt. “If I relax my hand, it will let go of the ball,” he says. Such changes had been observed before in the lab, but never in humans, and never at high altitude, the team reports this month in the Journal of Proteome Research. The scientists also found that the metabolic processes producing these changes were considerably more complex than suspected. And because red blood cells live for about 120 days, the changes last as long as the cells do.



Skiing
Skiing is popular where we live and most children from our school go once a year, either with school or with their family. 

Unless you live in the mountains, skiing is not a sport people do very often and so you could question whether it is worth all the expense. 
Monty started skiing when he was five with a couple of instructors who had recently started a ski school in Zell am See in Austria, just for children with disabilities like autism.

In the beginning just putting on all the equipment and riding up the mountain in the cable car was a big challenge.  It certainly was a case of stepping out of his comfort zone.  Having started we did persevere, in part so that big brother also had his chance to learn to ski.
2018 was the first week of skiing without any lessons.

This year big brother was concerned that he would have no one to ski with and was planning to make new friends on the slopes.
He did agree that he would ski with little brother, but much to his surprise spent the whole week skiing with him. It was not at all what he had expected. They could ski all over the resort using multiple types of ski lift. Who lost his ski while on a chair lift and had it fall into the trees? Not Monty, who had to ski by himself to the bottom of the slope while big brother retrieved his ski.
Being left alone at the top of the mountain, might have been a cue for one of those old-time “meltdowns”, but much to big brother’s surprise, Monty just skied alone down the mountain and waited for him, once he had found his missing ski. No awkward explaining to parents what had happened to Monty was required.
So then big brother decided to teach Monty how to do ski jumps, just like any regular teenager.
Both have been skiing for 8 years. Monty skis on red slopes (medium difficulty), whereas his brother would also go on the black slopes (the hardest).

Regarding myelination from a recent post, many people (like me) who learn skiing in adulthood often never myelinate their “skiing neuronal pathways” and so each year you come back as a near beginner. This is clearly not the case with Monty, he now retains his skiing skills, even though he has not used them for a year. 

Other Sports
Trampolining is something remarkably popular among people with severe autism. I suppose this is all about seeking sensory stimulation. Monty loves water slides and we used to know twins with autism/Asperger’s who were obsessed with roller coasters.

There is a common view that if you have a mental disability you must have a physical disability. Monty’s new teachers at high school were surprised when they learnt he skis just like a regular boy. Of course he showed the ski jump video to his classmates.

Conclusion
While you can ski with an IQ less than 70, as in Down Syndrome and most Classic Autism, it goes even better when you boost IQ.
I imagine the same applies to surfing and other water sports like sailing.
Clearly raising IQ means parents have far less safety issues to worry about.
Music of course is another great potential area for people with autism and Asperger’s. I wrote a post a long time ago about talents and savants, suggesting that people with autism really should be encouraged to use their abundant free time to develop such skills. Many people already do. Most of the Asperger’s people I have come across are now very talented musicians, practising hours every day. One is also an excellent skier on black slopes.





18 comments:

  1. I love this post! And, I agree that to the extent that he/she is able -- you want him/her to have mainstream interests. My asd son practiced on a skateboard for hours when he was 5 and became really good at it (improving balance, etc was great too)-- and gave him respect from kids/adults even while he had all sorts of other issues. Sometimes he would change interests which would not be so mainstream or as positive for society affirmation but he could get quite proficient in things given his focus and repetition.

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  2. OK Peter,so what about living at a high altitude,over the long term?

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    1. Roger, if you are a low altitude person, the trick would be to go to a higher altitude and do exercise (within safe limits), then you return to low altitude for the next few months and benefit from your newly potent hemoglobin breathing air that is not low in oxygen. Going to live permanently at high altitude, if you grew up at a low altitude, probably is unwise.

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    2. I was curious because years ago,I moved from a part of the country,at sea level,to another part of the country,at very high altitude.

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  3. I used to do static apnea a while ago and got up to 4 minutes at one point. Don't ask me why I did it, but I still do it occasionally these days as engaging the mammalian dive reflex will no doubt get extra blood going to your brain. Nevertheless, a recent study looked at freedivers and those who do breath holding with their face submerged in water or underwater (static apnea) and found that relative to controls, their executive function had been impaired after a battery of tests, probably due to the extreme stress that a lack of oxygen and buildup of CO2 in the body can have on brain cells.

    Simply holding your breath underwater for a few minutes at a time is likely not going to do much if any damage as the subjects in this particular study would push themselves to the point of blacking out from oxygen deprivation which normal people can't do without a lot of practice because your brain needs to learn how to overcome a lot of very uncomfortable reflexes to hold your breath that long.

    On another note, I took my whole family to the beach for the first time ever last year, and several years ago the thought of doing that seemed like an impossibility due to the fear of drowning. My oldest son with the most severe autism probably had the time of his life trying to body surf the waves and followed my directions well enough that I felt it was safe for him to be out there. Of course, I was a few feet or less from him at all times, but other than a few mouthfuls of seawater from a splashing wave every now and then, he exceeded my expectations of him in every way.

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  4. Wow Peter, how wonderful that Monty was so independent when he needed to be. What a fantastic skier, he must be so proud.

    I find that my daughter on your poly pill is a great independent learner. After years of failed swimming lessons I showed her a learn to swim video and she taught herself to swim and snorkel in a week. She can really self regulate her anxiety whilst swimming, the ocean calms her. It is though she practises mindfulness and she loves the sounds and rocking of the sea.

    It is lovely to hear that your son and other people’s children are enjoying their lives.

    Peter, after research and self trial, I have been giving my daughter glutamine in addition to your poly pill and it has dramatically increased her receptive and functional language.

    Have you or others had similar success.

    Thanks for your great posts,
    Liz




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    1. Liz, that is interesting. Amino acids are very important and the research does show odd levels in people with autism. Some of that may be down to people being picky eaters.

      A while back I came across that fact that at Johns Hopkins they found that adding L-methionine boosted speech and that they had no idea why this was.

      How much glutamine do you supplement? Do you think that your daughter's diet is low on glutamine, or she just does well on a high level of glutamine.

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    2. Hi Liz,

      That's great news!

      Liz, above and beyond dosing, would you kindly confirm how long it took for you to notice the improvements in language? Were there any other improvements?

      Thanks so much for sharing your experience with Glutamine supplementation Liz!

      AJ

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  5. Hi, Peter and AJ,

    My Daughter is a very healthy eater, meat, veg, milk, whole grains and fruit with some occasional junk. She is lucky not have a sensory issue with food like I know many other children with ASD struggle with. I have, however, added more red meat to her diet after your posts. She loves it, almost craves it, more than the fish and chicken we mainly eat.

    Yes, Peter, I did think that her amino acids levels were low after reading that this could effect speech. I started using 750mg of Glutamine, 500mg Glycine, 125mg Cysteine and 125mg of Methionine about six months ago and the results were dramatic for her. These are all included with her new potassium supplement in a 4gram powder she takes now, so I am not giving her too much.

    Her receptive understanding just exploded and it was in a short time. It helped us to get her to respond to the Wh questions, What Where, Who, that we had been struggling with for quite some time. She requests a lot more, verbally and has been more spontaneous with her speech. She has always been hilarious but now she has developed a sense of humour and will often act for us, just like other six year olds.

    Overall, I have noticed an improvement in her functional and receptive language, her anxiety levels have dropped, she moves on a lot quicker when things don't go her way and her REM sleep has lengthened so she stays asleep more peacefully.

    She has started at a mainstream school, with a full time support teacher and is learning, understanding verbal cues and transitioning better than we expected in the classroom. She is even talking in phrases to her support teacher. Her Teacher comments, that she is coping better than a lot of the other kindy kids and that her reading and maths skills are above average.

    The Poly Pill is the reason, she can sit and stay focused until Recess and then Lunch. She is included in every part of school and is progressing well at playing the drums, luckily we live on a farm. Very little has had to be adapted for her and believe me I had the laminator and velcro ready. I thinking practicing the routines of kindergarten for two years helped but we needed the poly pill for the interventions to work.

    Peter, I know this is off track but My Husband and I are so excited for our Daughter, she has even been to two birthday parties and the children in her class have been inclusive and happy to accept her for her. Without a doubt in my mind, I know that the poly pill has helped control and remove any of the stimming 'ticks' that my daughter had. This is important, as the other children are not frightened by her individualism. She still sings a lot but it is often the songs they are learning at school and the other children join in. Because of the Poly Pill she does not need to become neurotypical to have friends. I do not believe in miracle cures but I do enjoy seeing my Daughter's cognitive ability and quality of life continue to improve because of the poly pill.

    I will ask my Daughter's Pediatrician to test her Amino levels. Is there a specific test I should ask for or just the individual amino acids.

    Thanks
    Liz

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    1. Hi Liz,

      It sounds like your daughter is doing really well! In fact, some of the things you've noted sound a lot like my daughter. My daughter loves her read meat (just like her dad :) )

      Liz, it's funny you bring up the Amino Acids because my plan is to go back to my integrative medicine doc and request (1) an updated OAT test to see how things look now and (2) an Amino Acids Profile test, both via the same urine sample through Great Plains lab.

      Check it out at :

      https://www.greatplainslaboratory.com/amino-acids-plasma-1

      The sample report looks exactly like what I want, and that is at:

      https://static1.squarespace.com/static/560ac814e4b067a33438ecea/t/5a9d937b08522930f2426eb2/1520276348451/SR%2B-%2BAmino%2BAcids%2BUrine.pdf

      I will likely do both within the next month or two, and I was just told that the genetic test results will be another 4 weeks. By doing the test, if I can identify which Amino Acids she seems really low on, I can supplement and hopefully see some benefits from it.

      By the way, I'm like you too in that without having found this site, I don't think my daughter would be doing as well as she is, so big thanks to Peter.

      I hope this helps Liz!

      AJ

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    2. Liz, thanks for your extensive reply.

      I am glad you mentioned birthday parties, for many kids with autism and their parents, not getting invited to birthday parties is a big concern. I was just telling Monty’s big brother that currently little brother is the one getting all the invites. Last weekend it was three girls from the year above in school who had a joint disco birthday party, only a few from Monty’s class got invited. He loves to dance, whereas most boys just stand and watch. It is true that other kids and importantly their parents are indeed frightened by autism and that is why such kids often get excluded. This is even more true with older kids, because they do not want adults hanging around at their party, just in case of trouble. At last weekend’s party one boy fell and cut his head, but it was not the boy with autism.

      You can test amino acids by a blood test and some serious doctors do indeed do this. The idea is that you can supplement things like methionine, but you want to stay with the reference range; some amino acids you can have too much of. In general many people with autism have strange levels of amino acids and so if your Pediatrician is willing to order the test, you have nothing to lose. It may tell you something useful, but may not.

      In one recent study as regards essential amino acid levels, autistic children had significant lower plasma levels of leucine, isoleucine, phenylalanine, methionine and cysteine than controls. They also had lower levels of lower level of hydroxyproline, serine and tyrosine.

      If you use NAC, you will likely already be getting extra cysteine.

      I think if you stay within the reference ranges, you can just experiment to see what, if anything helps. Even the real “experts” cannot explain why methionine helps develop speech in some people; they just accept that it does.

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  6. Thank you Peter and AJ,

    Her Pediatrician will do the test as apart of her potassium levels, as the methionine and glutamine are helping my Daughter.

    At my Daughters recent birthday party, I invited her classroom friends and her Early Intervention friends and they played beautifully together, kids are kids. I live in quite a 'Hippy" town and I think this helps, as the parents are more relaxed and not as competitive.

    I have encountered parents who view Autism as a contagion and therefore do not wish to mix with my Daughter, I think they are frightened of ASD. The media has created this awful definition of Autism.

    My Daughter is the only child with additional needs in her class and other parents have asked me respectful questions because their children have asked them. I tell them that she can do anything their child can do, often the process just needs to be broken down into more steps, initially. The other kids in the class just want her to talk more and are the best models and motivation for her to do so.

    My Twin 18 year old sons have a very close friend with ASD. He has been their friend since they were six and they watch out for him, in a rough love, boy way, as they know what can trigger his anxieties. He also knows that one of my sons is asthmatic and has helped him get his preventer out of his bag at school. His parents have always been his 'promoter' and they have helped to me navigate my daughters journey even though it is different.

    It is the poly pill and empathy that is changing my Daughter life.

    Liz

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    1. Hi Liz,

      Hope you don't mind me asking, but as a fellow Aussie, I wanted to know if you had to go to an integrative doctor to get the prescriptions for the components of the polypill, or was it your daughter's paediatrician? My son's paediatrician is hugely conservative and looks at me like I'm from another planet when I mention anything about research/medications/supplements etc. (time to get another doctor... but all the development paeds I've come across seem to be very conservative and narrow minded)

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  7. Hi Lily,

    I am sorry to tell you that my Daughter's Paediatrician is only a means to an end for us. They are told at medical school, like Peter has written, that there is nothing you can do for Autism. That it is a permanent condition that cannot be cured or treated, only behaviours can be managed with medications.

    After four Paediatricians and their conservative and patronising remarks (I so know what you mean) about broccoli sprout and nac, we knew we were on our own. But Doctors love doing tests, they are necessary if you are going to give bumetanide to your child.

    My Daughter's new Paediatrician is attached to our local hospital. I have found him to be better than the ones in private practice, he is so overworked and on a time limit, that he is happy to write the pathology test when I ask him about her potassium and vitamin levels, to ensure her diet is healthy. He does care about our Daughter and would prescribe any behavioural or sleeping medication, if I asked for it. She was also admitted to hospital with pneumonia last year and he made everybody aware of what could effect her, he was amazing.

    As I previously wrote, I have asked my GP about the poly pill and offered the research but she said, 'that although she agreed with the treatment protocol it was off prescription'. No progressive doctor or paediatrician in Australia is going to stick their neck out, I am sorry but it is the truth. Doctors in Australia would give the poly pill to their own children but not to other peoples. I do get it, they do not want to risk their registration, that they have studied and worked so hard to obtain.

    As parents we made a safe, informed decision with risk controls, we are never going to say that we will not use the behavioural medication that paediatricians will prescribe but currently or daughter is managing successfully on the poly pill.

    We need France to register bumetanide as a 'treatment for autism', then you can take this to your GP or Peds and show them that it is being prescribed on prescription.

    Warning, when I asked my GP about the poly pill she told me that if my Daughter died, I would be charged with murder. Ironically, she would have happily repressed her respiratory rate with blood pressure mediation and or phenergan to make her sleep.

    For me, Peter's forum is about giving us parents/caregivers scientifically proven options for our children that will do no harm but rather improve their quality of life. No one is suggesting what a parent should do for their child. For us, we had to do something, our Daughter was suffering terrible distress, was totally mute and trapped alone in her autism.

    For my husband and I, the clock is ticking, as we are older, we want our Daughter to have fully receptive and functional language before we die and the poly pill is doing this for us, everyones goals for their children are different.

    Lily, even if you only give the parts of the poly pill that you can obtain from a health food store (Go Vita stocks them), they will make a difference (If you don't have suppliers names, I can give you mine). Peter has made poly pill very affordable which makes it so accessible to many families.

    Good luck, Lily

    Liz

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    1. Hi Liz,

      Just wanted to say that it's no different in Canada, and even our integrative doc wouldn't consider giving bumetanide regardless of how much evidence I had.

      So that said, we like you, have seen great improvement in our daughter with the supplements we all know about. When we started, our daughter was uttering 1 or 2 word phrases, now in about 1.25 years, she is using sentences that have up to 8 - 10 words. Eye contact is much better, meltdowns are minimal, she is just so much better in every way.

      In fact, if my wife is unhappy about something my daughter has done (which my wife tries to hide), my daughter senses it, runs to my wife and says "Be happy" and even tries to tickle my wife into being happy. The fact that she is now reading my wife's mood, is greatly bothered if my wife isn't perfectly happy, and then tries to intervene by making my wife laugh via verbal ("Be Happy!") and physical means (tickling) is an astonishing improvement within a year.

      She even has an incredible sense of humour. I don't know how unusual that is, but she tries to create funny scenarios to see us laugh.

      Liz, the one thing I will add, just in case you haven't tried it yet, is that when we did our OAT test, it surprisingly noted that my daughter had both bad bacteria and yeast in her GI system. The reason this surprised me is that she has never had any GI trouble ... ever.

      As a side test, we looked at Gluten / Casein issues (not allergies but that the way they were being digested turned them into Gluteomorphin / Caseomorphin which are not good for her cognitive skills) so we did the following:

      1. One month of Nystatin 2X day for the yeast
      2. One week (might have been 10 days) of Vancomycin for the bad bugs
      3. probiotics to replace the bad bugs / yeast (which we still do every day to keep the bad ones from coming back)
      4. Replaced the gluten and casein in my daughter's diet with gluten free items and Almond Milk instead of cow's milk.

      We also used some candida supplements to aid with getting rid of yeast.

      Liz, nothing else we have done, including all of the other supplements, has had as marked an improvement as the above.

      Now, if your daughter doesn't have gut bacteria / yeast or issues with gluten / casein, the above won't do anything, but we saw improvements in every aspect of her condition.

      We got the OAT and Gluten / casein testing from Great Plains Lab, which I know I had mentioned to you before. I know they work internationally.

      If you haven't done OAT testing, I would highly recommend it. Tanya on this board told me about it, and we found several items (including the GI issues) through the test that we addressed.

      Check out the items they test for:

      https://static1.squarespace.com/static/560ac814e4b067a33438ecea/t/5a9d91ca419202ab8bdad040/1520275916779/OrganicAcidsSampleReport.pdf

      I hope this is helpful Liz!

      AJ

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  9. Hi AJ,

    Thanks, I will definitely try the OATS testing.

    I am happy that both our Daughters are doing so well. Isn't it wonderful that our Daughters can now show the Initiative to be funny and naughty. I can even bribe mine now, which makes parenting so much easier.

    I was concerned for Lily, after our family doctor said that we were to do nothing to help our Daughter that involved supplements. You cannot go from doctor to doctor without them documenting what you want. We are so under the microscope as parents of children with additional needs that this can make us very vulnerable when up against a reactionary health system.

    I have worked as an educator within the disabilities sector for a long time and realised that if we did not do something, our Daughter would have eventually ended up tranquillised in a nursing home.

    Now, she will live and work, safe and supported, a wonderful semi independent life, in a home she owns, where her four Brothers can visit her. We could never have imagined this three years ago and it has been no miracle, just Peter helping us understand the science of treating autism, safely. It has been our choice and I would no suggest it for any other parent.

    Liz

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    1. Hi Liz,

      I hope it's helpful, please let me know if it was indeed helpful if / when you run the test. It was about $250 Canadian which would be about the same in Australian dollars.

      I completely get where you're coming from ... I can still picture the pediatric specialist who gave us the diagnosis responding to my question about what we can do help our daughter with "Enjoy your daughter...". The tone was about the same as what an oncologist would tell the family of a terminal patient. He also noted there was a lot of "junk' on the internet but nothing actually works.

      Well ... 1.25 years and a very tenacious dad later, everyone who knows my daughter has been amazed by the change in her. If I had listened to that doctor, the trajectory of my daughter's life would be very different than it is now. Even her family doc can't believe how much she's improved.

      This is just my view, but I can't imagine not doing everything in my power to give my daughter an opportunity at a normal (and great) life. I suppose that's why parents like you and I are here.

      And as tenacious and resourceful as I am, I give a ton of credit to Peter for his insights and for creating a place where we can all work together to help each other. I know for sure that my daughter would be nowhere near as well as she is without Peter and this site.

      Liz, I truly believe the future is very bright for us. The pace at which medicine is progressing is incredible, and my perspective is, we keep making improvements every day until the next opportunity to improve our kids further arises.

      I recently sent samples for genetic testing to see if we can identify the cause, and quite frankly, the extent of the testing would have been impossible 5 - 10 years ago.

      Hopefully, by the time your daughter is an adult, she can check in on her brothers to make sure they're keeping up with her ;)

      I wish all the best for you, your family, and your daughter Liz!

      AJ

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