Mother's intuition kicks in again . . .

I wanted to get Kaiden's thyroid levels checked again.  He does not show one single symptom of hypothyroid except that he is still very, very tiny and I just want to look under every stone.  At age 5, he is now finally just over 36" tall and a whopping 28.5 lbs dripping wet.  His head circumference is still very tiny, too, at about 18.5".  He is finally gaining weight though, with the right digestive enzymes, at a rate of about 1lb per month.  We had a couple of setbacks with gastrointestinal illnesses last fall but he's gained that weight back and continues to gain.

He hasn't had his thyroid levels tested for a couple of years because the last few times, his levels looked great.  This time . . . he has a high TSH and a very slightly low RT3, meaning he is slightly hypothyroidic (although, again, there are NO symptoms).   Kaiden's doctor recommended levothyroxine at first, but it contains an artificial dye, so that's off the table.  If we have to do thyroid meds, I'd prefer to use something along the lines of Nature-Throid.  He was on synthroid for a few months as an infant, but the endocrinologist felt Kaiden was tested at the wrong time after birth (something about how the levels fluctuate after birth) and that he never needed to be on it in the first place, and being on it sent his levels too far in the opposite direction.

As I was contemplating what to do . . . this nagging thought kept coming back.  I've learned, I better listen to that voice!  I've given Kaiden kelp for the last 4.5 years, ever since he was anemic at 6 months old.  I give him a tiny little scoop once every 8 days.  Although I know kelp should only be used for the short term as it can affect the thyroid, I was thinking once every 8 days should be a small enough amount that it wouldn't affect it, just be some occasional additional nutrition.  Except as he grew bigger, I increased the scoop from a slight amount to a half scoop, then to a full scoop, which is in the neighborhood of approximately 1/64th of a teaspoon.  And in the last few months, I've been ignoring that little voice that said, hey, does he really still need this?  Am I giving him too much?

I argued with the doctor - a lot -  over the suggestion of levothyroxine; I really, really, did not want to put him on a synthetic med.  Everything in me was screaming it was the WRONG answer.  I gave it a lot of thought; then finally listened to that little voice nagging me about the kelp and talked to the doctor again.  I love that he told me I am stubborn, and that it's a good thing!  I reminded him that Kaiden's been on synthroid before, and what the effects were.  And that Kaiden is SO incredibly sensitive to so many things - OTC calcium supplments (not plant based), OTC bromelain, the dosages of his amino acids, etc. At one point last year the doctor had suggested we double the kelp - although I cannot remember why at the moment - and doing that, Kaiden DID show symptoms of hypothyroidism. I suggested before we go with any thyroid meds, I need to listen to this voice and remove the kelp from his supplement routine.  Then retest in 3 months, and see what happens.

On to . . . diaper rash!  If you remember (or at least go way back in the blog) Kaiden used to have this nasty diaper rash caused by something in certain fruits.  We had a whole long list of fruits to avoid.  Lately, this rash has crept back.  It's nowhere near as bad as it was then; this is just one small spot, but it is a very stubborn spot.  It'll go away with my Healing Salve, but stop using it and it comes right back.  Back then, we tried giving Kaiden GABA for cognitive supplementation.  While it didn't work for cognitive issues - instead it made him frustrated, angry, and sleepless - it DID somehow cure that diaper rash within 3 days.  I have absolutely no idea why GABA took care of the diaper rash, none, not even the remotest, faintest idea beyond my thoughts from back then.  But seeing this rash come back . . . I'm considering putting him back on it for 3 - 5 days or so, at a very tiny dose, to see if it takes care of the rash again. I'll put up with an angry Kaiden for a few days if it means the rash will disappear for another year and a half!! Although, I sincerely hope Kaiden's not still in diapers that long . . . but until he can tell me that he needs to go instead of telling me that he's already gone, we're stuck with diapers. But, haha, that's okay.  I LOVE my fitted diapers!

Fundraising time!

Kaiden's been using a Vantage Lite (LAMP system) loaner unit in speech therapy and is doing fantastic!  He picked it up quicker than anyone thought he would (except me, LOL!!  I KNOW he's a smart little stinker!!).  But, since it's a loaner unit, it's time for it to be used with another child.  These speech devices, while fantastic . . . are not cheap.  We're talking a range of $6000 and up, up, up.  So . . . here we are . . . fundraising time!

Here is our GoFundMe page: http://www.gofundme.com/HelpKaidenTalk  Please go check it out - donations of any size are immensely appreciated, as well as sharing his page via social media.  We're off to a great start, and are so blessed to have so many wonderfully caring people in our lives!

Just clarifying . . .

With the recent articles published about Kaiden's story, I have received many wonderful comments, and people are really beginning to share his story! 

I do, however, want to clarify a few things.

In the first article published in our local Albert Lea Magazine, there was some incorrect information that unfortunately, downplayed the amazing things that happened.

• they wrote that I first noticed Kaiden's sensitivity to nightshades when I started keeping a log of what he ate.  NOT QUITE correct - I had been keeping his food log for months, but didn't connect the dots until I realized I had to keep track of what I ate, too (because of breast milk).
• they wrote that "eventually, in conjunction with a calcium supplement, his seizures stopped".  NO!! The calcium supplement had nothing to do with his seizures - it did not stop or slow them.  Trying the calcium supplement and seeing increased cognitive function is when I began looking into TNI (Targeted Nutrition Intervention).
• they wrote that in 4 to 6 months, Kaiden excelled. NO!!!  In THREE short WEEKS, he gained 4 to 6 months in development.
• they wrote the whole family is on the paleo diet.  NOT QUITE.  It's really just myself and Kaiden.  My husband eats what I cook here at home, but eats whatever he wants otherwise.

In the many very appreciated!!! shares, some are writing that going paleo "cured" Kaiden's seizures. 


This is not what happened. 


I mean, sort of yes, but not exactly.  This needs clarification!  "Paleo" has many different versions.  Paleo at its easiest, is being grain, dairy, and legume free.  There is also Primal (allows some dairy & nightshades), Raw (everything is raw, including meat, can also include nightshades), Auto-immune (eliminates nightshades, nuts, & eggs, as well as grain, dairy, & legumes), etc. 

I had Kaiden grain & dairy free about 5 months before the seizures stopped just simply because I'd read that with Down Syndrome, he was more likely to be gluten and lactose intolerant.  He was not legume nor nightshade free at that time.  It was solely dependent upon eliminating nightshades (and the carrots & sweet potatoes as discovered early on) that eliminated his seizures. It wasn't until seeing that Kaiden needed to be grain, dairy, AND nightshade free, that we went whole hog, so to speak (and yeah, slightly pun intended) with paleo.

I just don't want anyone out there thinking I'm claiming that "going paleo" cured his seizures, because I'm not, and I never have. There are many different versions of paleo.  Many are NOT nightshade free.  Carrots ARE allowed in all versions of paleo, yet Kaiden is sensitive to them.  Some say sweet potatoes are okay to eat as well on paleo, and some say they are not.  Kaiden is sensitive to them.

Kaiden is almost on the auto-immune version of paleo, with the exception of nuts.  He does just fine with nuts.  He is sensitive to eggs, too, so he gets limited quantities of those - and only if they are mixed into something else; he does not tolerate them by themselves.

NRHEG Star Eagle: A Christmas Story of Love and Hope

We've been featured again!  I graduated from NRHEG, so this is the "hometown" paper, the NRHEG Star Eagle. :)  They did a fantastic job with this article - while I was immensely pleased to be featured in our local town paper & magazine, they did get a lot of the details incorrect so this has been a chance to get it out there, with the "right" story!

Please click to read:

Featured in the 2013 Christmas Edition of the 

NRHEG Star Eagle:

A Christmas Story of Love and Hope

 

 

Kaiden's current supplement list

It's been awhile since I've updated Kaiden's full supplement list here on the blog.  Keep in mind, this is what we're doing right now at the time of this writing - we're in the midst of some testing so things may change.

Kaiden is still getting:
Powdered kelp once every 8 days or so
Dr. Christopher's Kid-E-Mins (plant based)
Dr. Christopher's Kid-E-Calc (plant based)
Dr. Christopher's Kid-E-Trac (plant based)
Vitamin D3
CoQ10 (ubiquinone)
Citicholine
Taurine - recently reduced his dosage based on bloodwork, seeing if we still get the same results
L-theanine
Digestive enzymes - bromelain free

We are almost out of the ubiquinone, and the ubiquinol version of CoQ10 is supposed to be more effective.  To be honest, I've never seen any improvement with the ubiquinone, so we'll have to try the ubiquinol - but it's expensive!!

We recently did an amino acid panel, a fatty acid panel, and are currently awaiting results from the latest GI panel.   The fatty acids came back all good, but with the recommendation to try curcumin for metabolic inflammation.  Still researching what kind I want to try with him - most people recommend Nutrivene's Longvida curcumin because it's been shown to cross the blood-brain barrier, but there's several companies making bio-curcumin now, so there's lots to choose from. While turmeric isn't supposed to be quite as effective, I used to give it to our senior rottie, Carl, and it did wonders for his arthritis.  I can always try that in the meantime with Kaiden and see if we have any results. 

The amino acid panel showed Kaiden was a little high in taurine, so we reduced his dosage for now.  He showed low (near the bottom of acceptable range, but not below) in l-tyrosine, glycine, and threonine.  His osetopath recommended to giving him glysom and l-tyrosine. 

Right  now I'm waiting for the GI results to come in and to see if we need to run another CBC before making any additional changes.

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.