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mom22kids

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    delete

    in The Learning Challenges Board

    Posted

    Just coming back to update as a few asked for me to do so.

     

    In grade 5 (almost 3 years ago) my daughter was officially diagnosed with ADHD.  And every report card reflected that diagnosis and was accurate.  Our school gives a "score" on each report card for 6 major learning skills:  Time management, organization, self regulation etc.  My daughter gets G (good) S (satisfactory) and they are being generous given the limitations - for example it was common for her to have a desk so messy that she would spend the entire class looking for the worksheet that was being utilized and miss the entire lesson.  She had a person who would help her reorganize the mess every Friday so that she could find things.  It took an hour each friday.

     

    Anyhow - we signed her up to Summer school this year (once we saw that her health was bouncing back we thought she could greatly benefit).  They sent home a DAILY "report" that also scored these 6 skills along with comments about her learning that day.  SHE GOT ALL E's (Excellent) most days - the odd G popped up.

     

    And the comments daily were - Stays focused and on task.  Great time management.  Great listening.  Very organized and responsibe for her work space.  I literally took photos of the report cards because we had to sign them and hand them back and I was afraid that they would not give them back!  

     

    And she is still improving in all areas :)

     

    Has anyone else on here tried and seen any improvements?

     

     

     

    • Like 6

    delete

    in The Learning Challenges Board

    Posted

    The reason I ask is not because of diet reasons but they both contain natural probiotics.....and the Dr. mentioned not eating Activia specifically. 

    Any yogurt that advertises itself as having additional probiotics (like Activia) is not a great idea.  Natural occuring probiotics found in reg yogurt or homemade are fine :) 

    delete

    in The Learning Challenges Board

    Posted · Edited by mermaid'smom

    An ebook was released yesterday that fully explains the protocol and how to use it.  It is 1/2 price ($14.99) until the end of the month if anyone is interested.  I doubt I can post the link but it is posted to his blog :)

     

    On a personal note - a year and 1/2 ago my daughter hung up her mermaid tail as she could no longer coordinate herself properly AND she was so fatigued and lethargic.  Last Summer I tried numerous times to bring it with her to the pool she declined every time.   A few days we went to the pool and she went under and swam the length.  She popped up and said "Darn I should have brought my tail!".  Since then is wearing it everyday.  She has sore muscles all over as she is now using muscles that have not been used in a while :)

     

    • Like 2

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    in The Learning Challenges Board

    Posted · Edited by mermaid'smom

    Further improvements!!  In the last 2 weeks my daughter is improving rapidly!  The last 5 days have the best in years!  Her energy is amazing.  She never stops moving.  Last Summer she didn't want to swim or use stairs and found it to be draining juts to stand.  Now she is challenging her brother to races around the BLOCK and almost beating him!  Her tolerance for touch has improved so much.  Now she hugs me.  Before she tolerated being hugged but was limp armed.  Now she hugs back and initiates hugs.

     

    She asks for healthier foods.  Not unusual to see her eating cherries etc.  She eats 2 apples before bed every night.  She loved apples years ago but hasn't been able to eat them in at least 2-3 years.  Now she likes them again.  Its almost like her body is repairing itself and turning back time.

     

    She is sleeping better, no sensory issues, her CAPD is resolved.  She has her spark back!

     

    We still have moments where she struggles to find the word for something.  And she can still go to say something and forget what she was about to tell us.  But she no longer needs to be reminded to do ANYTHING.  She can retain all information.  We used to have to micro manage bed time.  By the time she went up she would forget all the tasks (or why she went up) and you could find her doing any number of things.  If we asked "Did you brush your teeth?" She had no idea and we had to check the toothbrush to be sure.  Now she goes up and has 100% awareness about everything.  It is no longer on my radar as an area of concern.

     

    The best part - she is only one of MANY success stories.  Just giving you all the update!

    • Like 6

    delete

    in The Learning Challenges Board

    Posted

    Well, it's only been about a week and a half, but we've been seeing some interesting developments.

     

    Middle schooler (multiple food chemical sensitivities, social delay/lack of motivation, often seems "in a fog"): more interactive and communicative with family (albeit often grumpily or awkwardly), increased appetite, seems to have grown several inches in the last few days

     

    Early primary grader (salicylate sensitive, often fearful/angry, hard to discipline): much happier & more confident

     

    Toddler (no known issues): suddenly began to go potty independently for #2, after months of only trying on our initiative and without success; has also started communicating enthusiastically about the process, LOL

     

    No changes noticed in the others, except perhaps one or two are waking earlier.

     

    This is just with inulin, on the lower end of the suggested doses; we haven't tried combining it with the fish oil yet. Will probably start that over the weekend.

    Awesome!!  Great results and ones that are being reported by many!!  I find the potty training one so interesting every time it is mentioned.  I have no idea what is happening that encourages this?  Increased interoception?  Looser more manageable stools?  So interesting!

     

    Let me know what happens when you introduce the fish oils!

     

    Thanks for the update!

    • Like 2

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    in The Learning Challenges Board

    Posted

    The brand we ended up getting is Swanson.

     

    Short term update: I took one scoop (5 g) the first evening, and had some pretty bad nausea starting a few hours afterward. It went away in a couple of hours. The next day, I cut back to 1/4 scoop, then took 1/2 scoop today, with no noticeable problems. My digestion does seem better than usual. Probably too soon to tell about anything else.

     

    I'm surprised that there are any effects at these doses, as it turns out that inulin was an ingredient in a GF bread we used to use, and I never noticed anything for better or worse. Maybe it was cancelled out by all the other junk in the bread? Anyway, I'm only going to aim for 5 g total per day, as my midwife isn't keen on my going higher. Some medical sites have specific warnings against inulin (or chicory) during pregnancy and lactation. Then again, Bayer makes a prenatal fiber gummy that contains 4 g of it. So it seems that the medical establishment has no consistent position on that.

     

    The children all started with 1/4 scoop, then the older ones went up to 1/2 scoop today. Not much to say about them, except that the ones who are most difficult might be being a bit extra-difficult, but nothing extreme. Will report back in a couple of weeks.

    You should totally join the FB group!  As time has passed the general consensus is starting low and slow for the very reasons you are describing!  The daily dose is definitely something you should work towards as opposed to starting there!  Looking forward to hearing how you progress!

    • Like 1

    delete

    in The Learning Challenges Board

    Posted

    I would add that many children in this population also have sensitivities (diagnosed or undiagnosed) to phenols and other chemicals in natural foods, especially fruits and herbs. Too much insoluble fiber can also be a problem for little tummies. So just piling on more fruit and veg isn't always a benign approach either.

     

    With some of my family members, we have to limit nearly all fruits, some vegetables, and high-fiber foods such as ground flax. This makes it a challenge to get standard amounts of certain nutrients, let alone therapeutic doses. So while I'm all for the holistic approach, sometimes it isn't practical. Depending on the situation, refined foods such as juices, oils, and powdered extracts can be a helpful middle ground between whole foods and pharmaceuticals.

     

    Speaking of which, it turns out that inulin powder is hard to find around here. I ended up ordering from Amazon, and was going to get the NOW brand, but after reading reviews, went with a slightly more expensive one that's made with chicory from Belgium. According to a review, some of the cheaper brands use chicory from China. Just FYI, in case anyone else shares our preferences in that department.

    Can you share the name of the brand you bought?  Want to post it on the FB group!  Thanks :)

    delete

    in The Learning Challenges Board

    Posted

    I would add that many children in this population also have sensitivities (diagnosed or undiagnosed) to phenols and other chemicals in natural foods, especially fruits and herbs. Too much insoluble fiber can also be a problem for little tummies. So just piling on more fruit and veg isn't always a benign approach either.

     

    With some of my family members, we have to limit nearly all fruits, some vegetables, and high-fiber foods such as ground flax. This makes it a challenge to get standard amounts of certain nutrients, let alone therapeutic doses. So while I'm all for the holistic approach, sometimes it isn't practical. Depending on the situation, refined foods such as juices, oils, and powdered extracts can be a helpful middle ground between whole foods and pharmaceuticals.

     

    Speaking of which, it turns out that inulin powder is hard to find around here. I ended up ordering from Amazon, and was going to get the NOW brand, but after reading reviews, went with a slightly more expensive one that's made with chicory from Belgium. According to a review, some of the cheaper brands use chicory from China. Just FYI, in case anyone else shares our preferences in that department.

    Oh that is good to know!

     

    And yes it is very short-sided to just think a diet heavy in veggies is a good idea for everyone.  It just isn't that simple. 

     

    I came here to share our story.  As my title says - it may help SOME of you.

     

    There are a few on here who are ruffled by this - fine with me you have made your case over, and over, and over and over.  I think we can all agree that you have made the "risks" known.  We get it.

     

    As well,in spite of all the links and speculation we continue to see incredible gains and successes

     

    At this point there is nothing left to squabble about - let the people decide what suits them.  Try it or not.

     

    Happy to answer any questions from those who are giving it a whirl.  As well going to look up that Inulin and see if it ships to Canada!  Thanks :)

    • Like 2

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    in The Learning Challenges Board

    Posted

    Inulin is just one type of fibre, where equally important. Is the type of fibre in Rolled Oats. This is what the Lactobaccilus family of bacteria grow best on.

    But we need a multitude of different types of bacteria in our digestive system.

    For these bacteria to grow and multiply, they attach themselves to certain types fibre.

    Just like molluscs attach themselves to reefs.

     

    Though with a multitude of different bacteria, the main concern. Is to have a diet with a broad range of foods and fibres.

    To focus on any particular type of fibre?

    Misunderstands the ecology of digestive system.

     

    But what is more important, is to continually provide a diverse range of 'beneficial bacteria and enzymes'.

    I think that will be helpful advice once I halt the overgrowth of this particular bacteria.  But for now adding in all the bacteria made things worse for us.  Like many have said - not one size fits all!

    delete

    in The Learning Challenges Board

    Posted

    If one were using something (say a coffee or sugar substitute) that includes chicory as a main ingredient, would that be a source of inulin?

    Chickory is inulin so I would say yes!  But the quantity is important!  I am assuming you are talking about Agave?

    delete

    in The Learning Challenges Board

    Posted

    Some people are so sick that even doing it slowly, with the small amounts that are in food, can be really rough. 

     

    I think the key is to move beyond the pharmaceutical model and realize we had the choice all along. That's the thing about these docs, they find something and they use even natural stuff like pharmaceuticals, using things in isolation, not thinking of the system as a whole or how it could have been done in a whole, restorative way or how it all flows from choice. 

    I think the sickest need the dose in moderation but eventually need to build up to a dose that is impractical to aquire from food.  Initially it is about building a tolerance but at some point (for many!) the amt required to substantially get the issue under control can't easily be obtained by food.

     

    While the most hardcore could potentially stick to that diet it's doubtful that this population (kids with major sensory issues like food aversions) could be successful in that manner initially.

    delete

    in The Learning Challenges Board

    Posted

    Diet is connected to gut, so you can't separate them. And it doesn't flow that the cure for gut problems is low carb. What your success with inulin is showing you is that the cure for gut dysbiosis is more fruit, more real foods that are high in inulin.

    I don't disagree with you.  And I think once we CORRECT the problem with high levels of inulin I think it can be maintained life long exactly how you are describing.

    • Like 1

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    in The Learning Challenges Board

    Posted

    Mermaid'smom, thank you for posting this. We'll definitely be trying it, in the hope that it will help with multiple long-term issues in our family. I've already been avoiding propionate as a food additive, as many food-sensitive folks have noticed a link to brain fog and mood problems, but I didn't think about it being produced in the small intestine.

     

    We did have some success in the past with the Specific Carbohydrate Diet (which is basically intended for SIBO), but it's too labor intensive with the size of our family now. And we'd need another fridge just for chilling yogurt, broth, and jello. Ours conked out from exhaustion last time I tried the diet... as did I, LOL. Inulin sounds more feasible!

     

    Also, for those who are new to the idea of vagus nerve stimulation - you might check out Dr. Porges' "polyvagal theory." I read his book when it came out a few years ago, and it connected a lot of dots for me. It's been on my mind again recently, to the point where I was thinking about starting a thread about it. So, while I'm not familiar with Dr. N., his model of illness - as you've described it - seems to fit quite closely with the current state of my "Dr. Mom" research.

     

    Will let you know how it goes. :-)

    YAY!!!  So looking forward to hearing about your journey!!

    • Like 1

    delete

    in The Learning Challenges Board

    Posted

    So true!  That is what I keep saying - even if THIS falls away and she declines again we at least NOW KNOW there is something that can be done to alleviate her issues.

     

    But ironically we have completely given her back dairy with no issues.  Still improvements.  She is still GF (but only becuase school is still on for 2 more weeks) but becuase my own gluten intolerance is gone I feel confident that she will be fine with Gluten moving forward.

     

    So diet (in this case) isn't what is actually working.  I really think it was soley the dysfunctional gut flora that was the problem.  Of course that means a diet low in carbs and sugar should be maintained!

    delete

    in The Learning Challenges Board

    Posted

    I am happy for you and your dd and wish her continued health.

     

    Nemechek used to practice in the KC area, about a decade ago. He was affiliated with a major regional hospital, and then went into private practice--I think first with an obesity management clinic and then metastic cancer(?). I remember a kerfluffle where he was censored by FDA about the management of some studies he was running.

     

    I am trying to dig up my old files...I think he came to speak at the MPE conference somewhere 2004-2006 and he spoke on the special needs track with the lady from Poss-A-Bilties. I know some of the other ladies from KC are here on this board. Can anyone verify? The first bit about his practice history is all out on the web. The homeschooling lecture bit I am trying to verify--whoever that was that spoke also had a lengthy similar protocol to follow, though at the time he was also focused on drinking RO water only to hydrate the brain.

     

    Regardless of whether he spoke at MPE or not, he has a history of creating protocols and making somewhat fantastic claims.

    I agree that he is making fantastic claims with this protocol. 

     

    Its so hard for me because I stumbled upon him in the reverse of probably how many have.  I was doing something that made AMAZING differences in my daughters life and then uncovered that it was this protocol.  So in our case his fantastic claims are proving effective.  But I am a skeptic to the core so I presume that had I come across his claims in another manner I would be looking all side eyes at it.

     

    But I really don't know becuase I can't rewrite history to check.

     

    But I think I would have probably tried the protocol.  I mean I was the mom in 2015 who was spinning her daughter everyday on an Astronaut board in a therapy that was supposed to repair her vestibular system and help her issues - so I know I am open mided enough to try the thing that no one has heard of! LOL

     

    But yes I imagine that the entire protocol is so "fantastical" that it could turn some off.  I get that.  And sadly even I don't think it will help ALL the kids.  But I also hope I am wrong.

     

    So far this protocol has "claims" that it can fix my daughter and in fact my gluten intolerance and my carpal tunnel (and a whole host of things I don't suffer from!) and bizarrely enough - it is!  I am not eating gluten and everyday we are getting are daughter back.

     

    So I am keeping an open mind that it can fix the world!  I mean people thought Einstein was wacky! lol!

    • Like 1

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    in The Learning Challenges Board

    Posted

    I thought it was funny that Tuesday evening I was at the eye doctor and he said I needed to take Omega3.   I was able to say I had a just purchased bottle in the car.  

    Its so weird when that happens!

     

    I actually upped my daughters omega 3 a few days ago from 1200mg to 2400mg and OH MY!!!!!!!!!!!!  She is having an incredible week!!  I keep looking at her for cues that she is going to spiral, or crash and put herself to bed.  But nope - she just follows me around asking can we make slime, can I teach her how to wax her legs, can we go to the bookstore...

     

    Literally she has come back to life!!!

    • Like 3

    delete

    in The Learning Challenges Board

    Posted

    I think both of you mean well!  Though both of you have also written things that could make the other feel bad as to being accused of not doing the right thing for your dc, which none of us, especially those of us trying very, very hard with special needs dc to do the right thing want to hear and maybe are extra sensitive about because it is so hard just as to the basics of parenting plus the issues we deal with.

     

    I much appreciated your info and have even decided to order a bottle of inulin powder at this point...after determining that jerusalem artichoke is out of season, and organic jicama unavailable in my area.  I reviewed the info I had pro and con, and decided that on balance, for me, it was worth a try. 

     

    At same time, I think the warnings that Marie and others gave that inulin could possibly lead to more growth of bad gut bacteria etc. or that fish oil could be taken to excess is worth being aware of.

     

     

    IMO we all are gambling with our children's health.  Driving is a gamble. Allowing my child to go out bike riding is a gamble. Allowing him to ice skate is a gamble. Choosing foods and supplements is a gamble.  Not choosing is a gamble.

     

    A friend of mine who has a spina bifida child who perhaps might not have been if they had not followed the then FDA 200 mcg (as I recall) of folic acid protocol also made a gamble that the FDA new better than some friends who suggested that more would be a good idea.  In any case after that child, the next pregnancy included taking 800 mcg or more of folic acid daily which at the time was considered excessive. That baby was normal. 

    Pen I am happy that you are trying it.  I will be happier if you see improvements!!  Let me know if you have any questions and I would love to hear about your progress!  :)

    • Like 1

    delete

    in The Learning Challenges Board

    Posted

    If you eat fish, do you measure the fish oil/EPA/ etc. content in the fish you're eating?

     

    I had thought concerns on too much fish eating had to do with mercury and other contaminants, as well as over-fishing (from the pov of fish populations and ocean health) concerns--but not that one would get too much fish oil.

     

    I'd also be cautious with supplements. Still, FDA tends to be conservative as to amounts it suggests. I'm old enough to have seen a number of increases in recommended amounts in my iife time (eg folate). Not aware of any times it has revised recommendations downward, but I could have missed that.  

     

    Is there a Canadian FDA equivalent?  I'd also be interested in what a Swedish or Icelandic or Japanese equivalent (somewhere that has a lot of fishing, or at least traditionally did) might give as maximum amount of fish oil intake from fish.

    The inuit eat crazy amounts! 

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