Sunday, June 6, 2010

Introduction

I wanted to start this blog to find a public place to talk about my son's conditions in hopes of reaching others suffering from the same thing.  Kaiden has Down Syndrome, and was diagnosed with benign myoclonic seizures on September 22, 2009.  The seizures had been going on for about a month and I had already noted that sweet potatoes and carrots seemed to intensify his seizure activity.  The neurologist we saw blew it off and told me diet had nothing to do with it.  In his official report to Kaiden's pediatrician, he wrote "I doubt an underlying metabolic abnormality". 

What frustrates me the most is western medicine's take on Down Syndrome . . . anything that comes up, they say, "well, he has Down Syndrome so of course he's going to have issues.  Deal with it."  Now, there is plenty of evidence out there that the extra chromosome causes metabolic issues, they don't process nutrients correctly/as efficiently as the non-Down Syndrome population.  Yet there is little information out there about what to do about it . . . it's more so presented as "yes, we know about it, but there's nothing you can do so we aren't going to try.  Get over it." .  There is, however, Targeted Nutrition Intervention, which targets the mental development.  There are a few companies that sell nutritional supplements designed for Down Syndrome based on the research of Dr. Henry Turkel & Dr. Jack Warner, but at a pretty high price.  Some parents swear by it, some don't.  More on that later.

Something else interesting I found . . . Down's individuals seem to have some of the same dietary needs as autistic individuals - lactose intolerant, gluten intolerant, etc.  Again, there is little information on what to do about this in regards to Down Syndrome . . . yet there is tons of info out there for the autistic community.

Let me get back to the beginning . . . Kaiden was born via c-section at 33 weeks and 3 days due to an overly large placenta that seemed intent upon evicting him and spent 6 weeks in the NICU to finish growing.  Due to some issues with the NICU nurses, I ended up exclusively pumping for Kaiden rather than breastfeeding.  Never, EVER, let the NICU nurses give your infant a fast flow nipple if you intend to breastfeed.  Good luck getting them back to the breast after that!  I am still angry they did it without my permission.  Had I known, I would never have let them.  Anyway . . .at Kaiden's 6 month well visit, he was found to be severely anemic (due to his prematurity and him not yet being on solid foods, getting exclusively breastmilk).  His hemoglobin had dropped to 5.  Scary thing, I hadn't noticed.  Sure, he was a little pale, but he has my skin tone and blonde hair.  I had a tan and had kept him out of the sun.  The pediatrician did note that his iron level did not seem to bother him, he was happy and active and was hitting milestones. 

Unfortunately, at that appointment, I let them vaccinate him with the Hep B and D-TAP vaccines . . . the CDC states that any ill child should not be vaccinated at that time . . . the Hep B vax contains yeast.  The D-TAP hasn't been definitively proven but there seems to be a correlation between infants getting the D-TAP vax and developing seizures.  Kaiden was also prescribed an iron supplement and I was instructed to start him on solids whether or not he was ready.  Most iron supplements for children are filled with sugar.  Gee, guess what yeast feeds on . . . then a couple weeks later I went on antibiotics that were supposed to be safe for breastfeeding . . . and BAM all of a sudden, Kaiden had a massive yeast overload.  The antibiotics I took were the last straw for his little system, wiped the good bacteria in his gut right out.  Stinky, sticky, yeasty diapers, cradle cap, and projectile vomiting.  Because he didn't have thrush, his pediatrician blew me off 3 times about it, said there was no way Kaiden could have a yeast infection.  Poor kid, you could tell he felt just awful . . . and then within a few days the (benign myoclonic) seizures started. 

I tried everything under the sun to find the cause of the seizures . . . I looked at the vaccines he'd been given, the dosage of the iron supplement, the antibiotics I had taken . . . all of which had seizures as a possible side effect.  However, the details do not go into the type of seizure.  I had noted that carrots and sweet potatoes intensified his seizure activity and stopped feeding him those foods.  I had found some evidence that some (not most) individuals with Down Syndrome do not process beta carotene well, and came across an individual with epilepsy that said carrots did it for them.

(As an aside, I stopped the iron supplements and began giving Kaiden a tiny dosage of powdered kelp instead for his iron.  Worked wonders, his hemoglobin is and remains excellent.  It's super cheap and full of all sorts of good nutrition . . . DON'T waste your money with iron supplements when you can use FOOD to do it!  You just have to be careful to give TINY doses if you're going to use if for an extended period of time.)

The seizures continued. The neurologist started Kaiden on vitamin B6, but said he would most likely need topiramate to control the seizures with repeat EEG's and a future MRI.  We were told that benign myoclonic seizures would not affect Kaiden cognitvely, but as there was a concern it was actually West Syndrome, we were to watch carefully in the event of cognitive regression.  Because of the side effects of western medicine, we chose not to go that route.

The vitamin B6 did absolutely nothing for Kaiden's seizures.  At their worst, he was having 6 clusters per day with one spasm every 10 - 15 seconds for anywhere from 10 - 45 minutes.  The longer the clusters lasted, the more time between spasms until they finally stopped.  He would scream and cry after each spasm.  These clusters would happen at random times of the day and night.  As a parent, you feel so frustrated and want to cry right along with them . . . you feel powerless to stop it, yet you can't cushion them forever.  The seizures would throw Kaiden forward violently, and he would smack his forehead on his toys, hard enough to bruise.  I kept my homemade salve on hand, which kept away the bruising.  The best way to describe these is like taking a bow, very hard and fast, and without your permission.

Because I am a huge fan of natural remedies, and not a fan of western medicine, we started giving Kaiden Native Remedies' Epi-Still and Triple Complex Nerve Tonic.  The nerve tonic made him happier, no doubt about that.  Epi-Still significantly reduced, but not eliminated his seizures.  It reduced them down to an average of 4 - 10 single spasms per day over the course of 3 months and he didn't cry nearly as much when having a seizure.

The more research I did into seizures and the nervous system, I decided to try giving Kaiden calcium supplements to help support the nervous system along with the Native Remedies supplements.  The calcium supplement also contained vitamin D3, magnesium, and vitamin K.  This was about a week before his first birthday.  Overnight, I noticed Kaiden was more alert and active and loud!  This is where I began looking into Targeted Nutrition Intervention.   I hadn't gotten into it previously as the reports I read said the Down's children would begin reaching milestones reported by happy parents . . . but that they also typically reached them at the same time as those not taking the supplements.  The idea behind it is that Down's individuals do not process nutrients correctly/as efficiently as the non-Down's population does and that they need extra nutrients to compensate.  It's not about mega doses, but finding the right dosage for the individual.  Since I saw results overnight with just a calcium supplement, I wanted to try it all.

Because Kaiden was sensitive to certain foods, I researched as much as I possibly could and began slowly adding supplements to his routine rather than just buying a pre-made blend.  My goal was to get him to the point we could go with a premade blend but I had to try all those ingredients separately.  And I'm glad I did, found somethings he didn't tolerate well.  I will note, that the over-the-counter supplements, even in infant doses, gave Kaiden really loose stools.  Which, of course, he would let loose while bouncing in his excersaucer.  Yay, poop down his legs and up his back!!  Good thing it was winter and it was all contained in his sleeper!  YUCK!  And it didn't matter if we used cloth or disposables . . . there wasn't a diaper in the world that could hold it in.  Maybe a garbage bag and duct tape, I don't know!

Eventually I moved Kaiden to a whole foods vitamin by my favorite company, Dr. Christopher's.  Along with their Kid-E-Mins, Kaiden also gets their Kid-E-Calc (calcium) and when we ran out of the Native Remedies supplements, I gave him Dr. Christopher's Ear & Nerve Tonic and Kid-E-Trac (emotional wellbeing, helps the child to focus).  He also gets choline bitratrate, TMG, tryptophan, and grapeseed extract.  I don't really think the tryptophan does anything for him, so when we run out, I do not plan to continue that one.

The Kid-E-Mins & Kid-E-Calc made one HUGE difference noticeable within 48 hours . . . nice, normal SOLID poop!  Soooooo much better!!!!  The Ear & Nerve tonic . . . overnight Kaiden's balance improved and I could actually carry him around with one arm without him falling backward.  What a relief!

Back to the seizures . . . I didn't notice a reduction in the amount of seizures, but rather a decrease in their severity.  He was still having on average 4 - 10 single spasms per day but most of them were pretty mild.  He would have a few though, that would lock him up for 2 - 3 seconds.  Completely locked up, couldn't breathe . . . sometimes it would take a minute or two for Kaiden to snap out of it once it was over.

And back my belief that diet has everything to do with his seizures, no matter what the neurologist said . . . as far as the carrots & sweet potatoes went, it's not like I gave them to him once and noted activity . . . I tried on 3 separate occasions with the same, repeated result.  A day and a half later each time, his seizure activity spiked.  So I stopped giving him those foods.  By now, Kaiden was pretty well on table foods. I had thought that he was spiking after eating spaghetti and tacos, but wasn't sure as the activity didn't seem much worse than average.  One weekend, I ate an eggplant dish from Buca.  It was super tasty, and a HUGE dish - took me 3 days to eat it all.  And boy, did Kaiden's seizure activity spike.  It was really bad, poor little guy.  Once I finally figured out it was the eggplant doing it (I had never eaten eggplant before), I pumped & dumped all my fresh milk and gave Kaiden frozen breastmilk for a few days, and his seizure activity went back down as expected.  Several months later, in late April 2010, I tried some fresh green peppers since Kaiden was doing well on table foods.  (Kaiden had been sensitive to when I ate fresh green peppers all along, giving him a rash and made him painfully gassy.  I stopped eating those long before the seizures started.)  I ate a tiny amount on a Subway sandwich and didn't notice any significant difference in Kaiden, so a few days later I had a good helping of them at Chipotle.  A day and a half later . . . on Mother's Day no less . . . Kaiden's seizure activity spiked like it had done with the eggplant.  He spent Mother's Day having seizures and screaming.  For several days after that I would literally walk around the house saying, "what the F do eggplant and green peppers have in common that Kaiden reacts so badly to them?"  Then finally, I got the bright idea to type in Google, "green pepper eggplant have in common".  And the connection came up . . . they are both members of the nightshade (solanaceae) family.  As are tomatoes (remember spaghetti & tacos?), potatoes, all peppers - sweet and hot, paprika, ground cherries, and lots more foods I wasn't familiar with. It was like the lightbulb finally clicked on.

Being into natural remedies, I am familiar with some of the properties of deadly nightshade but never thought about foods of the nightshade family.  I was using tomatoes, paprika, and chili peppers on a regular basis.  Nightshade foods cause the body to excrete calcium, and calcium is essential to the nervous system.  It is one of those plants that is used to treat in tiny doses, but in high doses causes the problem you are trying to treat.  Eating nightshade foods = high doses.

I immediately eliminated nightshade foods from my & Kaiden's diets, and within a few days, saw a significant reduction in his seizure activity.  Then I ate a grilled chicken sandwich from Dairy Queen (contained mayo, which has paprika in it, and a slice of tomato).  A day and a half later, Kaiden's seizure activity spiked.  When it went back down, I ate a hamburger with mustard (contains paprika) and as expected, a day and a half later his seizure activity spiked again.  That was enough of a "lab test" for me, and I completely eliminated nightshade foods for both of us.  Kaiden's seizure activity dropped again, and on May 28th 2010, he had his last seizure.

Within one week of being seizure free, Kaiden has become so much more alert, so much happier . . . he used to smile all the time before the seizures started and during the time he had them, a smile was a pretty rare thing.  He smiles and giggles all the time now, it brings me to tears!  Also within that first week, Kaiden began standing, supporting himself by holding onto something rather than relying on us to hold him upright.  He began signing back his first "word", the sign for "eat".

And the neurologist said diet had nothing to do with it.

5 comments:

Jen said...

Pretty Impressive! I learned a long time ago that I certainly listen to the docs, but if there is something that I know works for my boys, I continue with it. Our "magic bullet" was eliminating preservatives, chemicals, food additives. We never ate a lot of processed foods, but we've cut back to a very minimal amount (read: when they're with Daddy, they get junk). I cook everything from scratch and we raise and grow as much of our own food as we can. It has made a huge difference in my sons' health. I've got one who now only has seizures with illness (and he's rarely ill), one who has about one episode a month (down from several times a week) and one who is down to about 5 bad days a month (down from hundreds of seizures every single day). I definitely believe in the power of a mom who knows her children! Be Blessed, Mama! Jen and the gaggle of boys

Mom Connected said...

I am so happy to have found your post. My son began having myoclonic seizures about a month after starting a potato-based diet (vegetarian). Similar to you, I've been analyzing everything to try to determine what's going on. After reading your post, I stopped the potatoes completely. I will let you know how it goes. Oh! I also started him on Calcium and I'm pretty happy with how connected he's been. My son has autism and severe developmental delays.

Becky said...

I love your story. I had a similar issue with my son. Numerous trips to the Dr. with the comment "it must be viral" left me grasping at straws. I KNEW, somehow, that this had to be related to his diet. In our case, I eliminated items until I finally discovered that he cannot tolerate any corn products, or products derived from corn. So much for the the doctor that mentioned that they "didn't believe in food allergies" causing the problems they so obviously did. All his issues cleared up... the crying, head-banging, aggression, inability to think or remember ANYthing, eczema, painful intestinal issues, headaches... all gone.

Gemma xme said...

Anne,

Thank you so much for posting all this info on the internet. It is invaluable to all us parents in a similar situation to you. I really admire how much effort you put into posting all over the internet too.

I am not sure how relevant this is, but as I was reading it was ringing some bells. And I just went back over my research notes, and thought you might be interested to look at anti-inflammatory diets, as they mention nightshades as something to avoid because "they contain high alkaloid" - I am not sure of what this means. However, I am really interested in these diets, as they seem to be helping my DS - the things they say to avoid are exactly the list of foods which seemm to trigger spikes of seizures for him. I dont know whether his inflammation is in the gut, or in his blood brain barrier (I dont even really know if he is inflamed - but it seems a coincidence that an anti-inflammatory diet has helped him.) We are also using Omega3 (a brand called Eskimo3) as I read it was good for seizures, but then was amazed to read it is an anti-inflammatory!

Becky - you are an amazing mum too, and well done for following your gut feeling - I really hope to follow in your footsteps and really nail this for my DS - in particular because the symptoms you list could easily describe my DS. We are still at the "tweaking" stage - good days and then suddenly back to bad days.

Thank you so much, both of you, you have inspired me to continue on my quest. I don't know what you think, but I find all this research is exhausting - I just wish the professionals would listen to mums like you Anne, and find out more about epilepsy and diet. Which would save us all this heartache and painstaking research and 'experimentation' with our children. I do believe that it wont be long before we get there though! Fingers crossed.

Keep up the good work!

xx

Anne said...

Thanks so much Gemma! Sorry I missed this earlier, we've been on a few vacations this summer. :) Yes, ABSOLUTELY I believe it has to do with inflammation!!! I'm not sure what specifically causes the inflammation, there are so many factors. I suspect actually the DTAPP vaccine he got at his 6 month well-visit initially caused some brain inflammation, and that the nightshade alkaloids just made it all the worse, or some combination of the two, and certainly kept it all going until the nightshades were eliminated. Or so is my theory!! I just read a new article regarding autism and inflammation that was extremely interesting and seemed to go hand in hand with this. We follow the paleo diet, which is no grains, no legumes, no dairy, and no nightshades, and try to keep high protein red meats to a minimum as we had some issues with that as well. Please feel free to msg me with any questions! :)