Our feature in Albert Lea Magazine!!

Featured in 2013 Holiday issue of Albert Lea Magazine:

Albert Lea Magazine (see page 40!)

 

credit: Albert Lea Magazine

So excited about this!!  A reporter from the Albert Lea Tribune came over and interviewed me about Kaiden, his story, and my cookbook (with Kaiden's story in it): Cavemom's Cooking.  They featured our story in their magazine, Albert Lea Magazine, the Holiday 2013 issue!!  We're on page 40. :)

Treating immune mediated hemolytic anemia naturally

This post isn't about Kaiden, it's about our Rottweiler, Lola.  In April of this year, Lola went pale on us, dropped weight, and her breathing changed from deep to shallow.  I wasn't exactly sure what was all going on, I'd come across a few things, and the vet's blood tests confirmed immune mediated hemolytic anemia.

So what caused it?  I'm not 100% sure.  Lola has been raw fed for 3 1/2 years.  It can be caused by too much blood loss - from an accident, fleas, but even vaccines are blamed.  Lola never had an accident, but she did get fleas from one trip to Missouri a couple years ago.  It could have been the supermarket chickens, too, for all I know.  What if those chickens were the ones being fed arsenic laced food (it bursts the capillaries, making the meat more pink, and thus is supposedly more appealing)?  I suspect the chicken as being the main cause, but I'm just not sure.  Lots of people feed their raw fed dogs a diet of chicken, and don't have any issues.

Anyway, I chose to treat her holistically rather than put her on a corticosteroid, which prevents the release of substances in the body that cause inflammation, and suppress the immune system.  Kaiden was severely anemic at his 6 month well visit and I had better luck with holistic treatments than over the counter iron supplements.  With my own knowledge base and experiences in holistic care, I felt 1000% confident in treating her (and I still do!).

This post isn't intended for anyone to refuse their vet's care.  If you choose to treat how I did, that's all on you. ;-)  I just want to share what I did, so you can make your own informed decision should you find yourself in the same situation.

The following is what I gave to our vet's office, as they wanted a copy of it seeing how well Lola recovered.

Treating Immune Mediated Hemolytic Anemia Naturally

 

Amounts for Lola, a 70lb rottweiler

 

·         24 oz (12 oz twice per day) raw food – raw meat, raw bones, raw organs – beef: meat, tripe, liver; pork: meat, bones, brains, liver; deer liver

 

·         1/4 c liver detox tea, 3x per day – Lola likes the flavor of the Yogi brand, but there are several brands that make liver detox teas. You can get the tea at HyVee and Walmart.

 

·         1 Tbsp Beef blood, 3x per day. Sourced from Geneva Meats.

 

·         1/64 tsp (drop) powdered kelp, 3x per day.  I already had this on hand, but you can get it online or at Nature Valley Foods in Burnsville.

 

·         Slippery elm bark powder, 2x per day.  Sourced from Valley Natural Foods in Burnsville. 

 

·         Lightly cooked vegetables, 1x per day:

1.       Bring to boil in a little water, let steep a little, 1 – 3 minutes

2.       1 fresh leaf kale, chopped

3.       1 fresh stalk oregano, chopped

4.       1 fresh stalk sage, chopped

5.       1 fresh stalk parsley, chopped (I prefer curly parsley for this application)

6.       1 pinch dried red clover leaves/flowers (or 1 stalk fresh), chopped (MOST IMPORTANT!!) (also sourced from Valley Natural Foods in Burnsville)

7.       Sprinkle of sea salt – Real Salt brand (contains 60+ trace minerals) (sourced at Wintergreen Natural Foods; Hyvee also carries it)

Other support, just because it’s Lola and I wanted to do it:

Probiotics with breakfast

Digestive enzymes with each full meal

Hawthorne to support her heart (she has a heart murmur) 3x per day

 

DAILY MEALS

Breakfast:

12 oz raw food

1/4 c liver detox tea

1 Tbsp beef blood

1/64 tsp kelp

Slippery elm bark

Probiotics

Digestive enzymes

Hawthorne

 

Supper:

12 oz raw food

Lightly cooked vegetables

1/4 c liver detox tea

1 Tbsp beef blood

1/64 tsp kelp

Slippery elm bark

Probiotics

Digestive enzymes

Hawthorne

 

Bedtime:

1/4 c liver detox tea

1 Tbsp beef blood

 1 1/2 Tbsp pork brains, mashed

Hawthorne

 

NOTES:

I noticed that raw chicken aggravated the issue, even after the healing process began. It is my opinion that the chicken is most likely what caused the situation in the first place as that is what she was being fed previously.

 

Red clover is an important part of healing.  It thins, strengthens, and purifies the blood.  I feel it’s necessary and do not recommend skipping it.  I feel parsley is very important too; it is good for anemia.  Kelp was to quickly add iron to her diet, as was the beef blood.  Lola did not like the flavor of blood, so I mixed it in pork brains and her liver detox tea.

 

You have to be careful with dosages of kelp, as it can affect the thyroid.  After 2 – 3 weeks, I began lessening the dosage to once per week for a few more weeks, then stopped altogether. Kelp should only be used for the short term.

 

After 2 months of treatment, I stopped the kelp, slippery elm, beef blood, probiotics, digestive enzymes, as I felt they were no longer necessary. 

 

Between 2 – 4 months, I continued the leafy greens with red clover and detox tea at an average of once per week and will continuing that at least once every 2 weeks.  I will be giving her that for several more months at least.

 

Between the 3 – 4 month mark Lola’s coat was back to shiny, she began putting weight back on, and her breathing normalized (she is normally a slow deep breather when asleep, and went to fast shallow breathing, which was one flag that something was wrong).

 

I noticed it was right about the 4 month mark that Lola seemed to be back to 100%. Her gums went from pink-pink to red- pink, and her weight is back to normal.

 

August already!

Time flies!

Since I know you all want a Kaiden update:

• The amino acids and new digestive enzymes are continuing to do their job - he's now up to 26.5lbs, an average gain of 1lb per month.  It's nice seeing him fill out a bit!  I get so tired of people saying he's too skinny when it's a muscle tone issue, not a fat issue.  He eats as much as an adult does in a day (sometimes more!) - you'd think he'd be HUGE, but he's not. He just has very low muscle tone.  Strong, though . . . dang he can put up a fight when he doesn't want to do something I want him to do . . .

• He's now 4 1/2 and NAUGHTY!!!  OMG there are days . . . he is so mischievous . . . he does something naughty then quickly looks to see if I'm looking, and if I am . . . he laughs!  We've tried a variety of strategies to help him learn to behave better . . . let me tell you that 1 minute per year of age for time-out does NOT work for this kid.

• Kaiden had something that mimics the mumps a few weeks ago . . . not sure what it was . . . same symptoms, but his bloodwork came back negative.  But since then . . . it's like another switch has been flipped cognitively.  I know he understands everything we say but now his reactions are very quick.  Even for things he has to wait for, like telling him he has to wait for xx until yy.  When yy happens, he's RIGHT there, expecting xx, like right now, Mom!!

• I keep saying he displays many autistic tendencies, so he's finally getting evaluated at school for an educational diagnosis this fall.  Hopefully that will open more doors with therapy, as most look at him and only want to see Down Syndrome, and don't bother to look any further.  I demanded speech therapy (via the school therapist) for apraxia, and that will start this fall.  That whole situation still pisses me off.

• Interestingly enough . . . 5 hr energy drinks contain some of the amino acids he needs - as I learned when I forgot his supplements for our last cabin trip!  I was able to source some l-theanine and some bromelain-free digestive enzymes, but not the rest.  5 hr energy to the rescue!  It has taurine, citicholine, and some other amino acids as well as caffeine.  We were going to start vitamin B12 injections soon to see if that would help bring out his speech . . . well, the 5 hr energy contains A LOT of B12 . . . he definitely got much more vocal on it, but it wasn't speech, it was bleating like an animal.  A really really awful sound (a really loud, forced, EEEEHHHHHHHH!  over and over and over and over and repeat).  That we endured for several days.  All day long.

• We've done bloodwork, now awaiting results, for comprehensive amino acid levels.  Hopefully this will tell us what he needs, instead of just throwing money at expensive supplements that we can't return if they don't work for him.

Other than that, he's one smart adorable kid that love his books, educational videos, and flashcards!  It was really nice talking to his new nurse practitioner, when she asked if I thought that regular kids cartoons were just too simple for him (not too complex, but too simple!), for why he won't watch them.  I think part of it is that regular cartoons rely on make-believe and he just isn't into the whole pretending thing (another autistic trait).  His whole expression says, Mom, this is stupid and I don't want to watch it. 

I reiterate, again, that I hope this blog helps other parents of kids with Down Syndrome . . . feed them clean, utilize supplements, and don't wait to teach them anything . . . teach them just like you would any other kid - start early!  Just because they may not be able to react and show you what they've learned doesn't mean they don't know something, or cannot learn it!!!

Kaiden's story is getting out there!

My cookbook (with Kaiden's story in it), Cavemom's Cooking, has been printed and is up for sale on Etsy!  There's even a page for it on this blog. 

And more cool news: I did a guest post over on The Paleo Mama, sharing the short version of his story, which you can read here.

Carotatoxin (falcarinol)

Maybe . . . just maybe carotatoxin is why carrots gave Kaiden seizures.  I'm still not exactly sure yet - but carotatoxin is a fatty alcohol found in carrots, celery, parsley, and panax ginseng. In high amounts (or in those sensitive to it??) it can cause neurotoxical problems, including muscle tremors.

Celery and parsley do not affect Kaiden, but we tried giving him panax ginseng in a VERY tiny amount a couple weeks ago to see if it would help his circulation, and therefore help the lymphedema in his fingers.  Within 36 hours, Kaiden stopped sleeping at night . . . way too much stimulation for him!  I gave it a full week to see if it would help his fingers . . . it didn't, so took him off of it.  Within 36 hours - now, I don't know if this was because I took him off of it, or if it was a buildup of having taken it for a week - but he got very, very twitchy, seemed uncomfortable, was rather cranky, and was banging his head rhythmically, every 3 seconds.  When I saw that the head banging was rhythmic, I was immediately concerned that it could be benign myoclonic seizure activity again - only he didn't seem to be upset by the activity like he was before. Thankfully it only lasted 1 day. 

This renewed my research into why carrots and sweet potatoes gave him seizures.  I understand why nightshades did, but not why carrots and sweet potatoes did.  I'd been thinking it was the high amount of beta carotene, as that's all I could really find in common for the two, and I knew that carrots did affect some epileptic individuals. 

Interestingly enough, ancient Chinese wisdom says not to eat carrots after consuming ginseng, for the carrots will undo the good of the ginseng.  I wonder if maybe it would be too high of a dosage of carotatoxin with the two together.

Now, carotatoxin is not necessarily a bad thing!  It's purported to be anti-cancer and it would take eating a lot of carrots to affect most humans negatively. 

One interesting thing of note - carrot juice doesn't seem to affect Kaiden, just actual pieces of carrot.  Cooking carrots (which is the only way he ever got carrot pieces, was cooked) apparently concentrates the amount of carotatoxin by up to 25%.  Some great info on carrots can be found here: http://www.carrotmuseum.co.uk/falcarinol.html

I still haven't found anything on sweet potatoes, but I'll keep looking!

Speaking of the lymphedema . . . it's almost gone; his fingers are almost back to normal.  Being as it's happened twice now at the same time of year, at exactly the same time of year his circulation gets bad . . . I also noticed that even though we keep our house at a constant temperature and kept him indoors, cold fronts moving in seemed to make it worse!  Maybe part of it has to do with not just the weather but the natural forces affecting the weather.  Food for thought. 

Communication

Kaiden's non-verbal.  Has been since Dec 18th, 2009.  At that time, he had 3 words: apple, asshole (oops!) and Mama; Mama being the only word said with intention.  Kaiden jargons a lot, and has for several years now, but while conscious for the most part has lost the ability to form words, thanks to the seizures.  He occasionally says "mum mum mum" for Mama, but it's pretty rare.  He can say "hi" when greeting people, but always drops off the H, so it is only the "i" sound.  He said "jet" upon being shown a flashcard of a jet a few times, but that was quite awhile ago already.  Anything you ask him to say now, comes out sounding like "yeh" or "eh".

He can, however, speak clearly and coherently in his sleep.  I don't remember the earlier words, as I assumed I was dreaming . . . until the night I was awake and heard him say "too hot" as he kicked off his blankets.  Other words I remember hearing are "sister" (no idea on that one!) and "too early" when it was around 5am.  He has the sweetest little boy voice . . . I long for the days when he'll be able to talk again.  Many of his tantrums are driven by frustrations with communication.

Kaiden understands English perfectly, can follow directions, can make requests, can tell me things . . . but in order for me to understand him, I had to learn his language.  Kaiden does not sign, either, and not for lack of me trying to teach him!  Same with feeding, he just will not use his hands for anything other than what he wants to do.   He does not imitate, yet learns from watching us.  I cannot get him to imitate anything I'm doing when I ask him to do it, but there are so many things he's learned to do by watching us. Kaiden does not point, either.  He will touch what he wants rather than point to it.

Right now we're working with the PECS (picture exchange communication system).  He gets that, no problem.  Last week the school gave me some of the same pictures they use with him.  Today I showed him the pictures and asked whether he wanted grapes or blueberries for a snack.  He got mad and wouldn't choose either.  But when I expanded the choices to include a banana, the banana was immediately and clearly chosen. 

Here's something that bugs the hell out of me.  After chatting with a friend online who is a Speech and Language Pathologist, both of us feel that Kaiden has apraxia.  After reading up on it, that might just be the problem with him not using his hands.  He can certainly use his hands correctly, but only for some things.  So, at school conferences last Friday I brought up the subject of apraxia and that I would like speech therapy for such implemented immediately, helping him learn to form words.  I knew he was receiving 15 minutes of speech therapy once per week in the school setting for PECS; what I did not know was that Kaiden is "often only observed in the classroom setting" rather than direct one-on-one therapy.   I was told by the speech therapist that since speech generally comes after gross motor skills (which I knew), basically not to worry about it until his gross motor skills improve.  And . . . that she does not feel Kaiden has the cognitive skills yet to do that type of speech therapy.  REALLY???  Kaiden's 4. Granted his motor skills aren't great, but that doesn't mean he can't think or learn!  I said, well, then we'll be doing it at home then, because Kaiden has the cognitive skills, he wants to communicate, he can communicate in his own way, but if you can't understand his language, you can't understand HIM.  I had to remind her not to look at this as Down Syndrome, but as a seizure injury, which she had completely forgotten . . . and was suprised when I told her (which I KNOW I've told her before!!!) that he can speak clearly in his sleep.  After repeating my request for more therapy and stating my case on his cognitive skills, she reluctantly agreed to up his therapy sessions to two 15 minute sessions per week.  She told me she felt he wasn't ready, that therapy for apraxia wouldn't do any good.  Now, with Kaiden, he has his routines.  He needs a long time to incorporate new stuff into his routines.  I said, best to start now, so he gets it incorporated into his routine.  NOW is the perfect time to start since he's learning and soaking up so much right now.  He might not respond physically yet, he might fight you, but he's learning all the same.  Why wait?

Finger Feeding!!

FINALLY!!!

Kaiden has never, EVER finger fed in all of his 4+ years, until Monday.  We've tried it time and time again, hand over hand, and it's always been a tantrum-filled struggle, but we kept at it. It's never been a matter of motor skills - he can easily bring his toys and hands to and into his mouth.  With food, he'd pick it up, squish/explore it, drop it on the floor, throw it, feed it to the dog, feed it to me . . .but would NEVER feed himself.  Because, apparently, food doesn't go into *your own* mouth with *your own* hands . . .

We've gotten tons and tons of advice from helpful people - friends, experienced moms, therapists, doctors . . . and the kid just would not do it.  Uh-uh, no way, not gonna happen.  While I appreciated the advice, none of it worked.  Because again, this was not a matter of learning the skill or about the sensory part of touching food.  He just plain-out refused to do it.

We've been doing lots of me finger feeding him lately, and he opens his mouth like a little baby bird.  Sunday, I did hand over hand with him with grapes, and he didn't argue too bad.  But it was ALL hand over hand.  Then Monday, I did hand over hand for the first grape, and was going to continue to assist, but the second grape . . . all by himself.  And he ate the rest of the whole damn bag all by himself!  And has continued finger feeding since.  He prefers foods that he can easily pick up - grapes, blueberries, raspberries . . . he didn't like cut up pieces of banana, just couldn't get a grip on the slippery little buggers.

Lest you think our feeding issues are over . . . ha, ha, ha . . . if the food is presented in a bowl or on a plate, there BETTER be a spoon involved (which is still hand over hand to scoop the food - again, not a matter of can't, but a matter of WON'T).  He will not pick up the food off of dishes with his fingers - well, let me clarify that.  He will not pick up HIS food off of dishes.  He has no problem picking up MY food off of MY plate and putting it onto his.  He will only finger feed off the table or a napkin.  Eh, well, baby steps.  At least snack time is easier!