So I am finally getting down to the business of writing Kate's story. I have put it off because I just don't like going back to those dark times but alas, this story needs to be told too.
DH was deployed during a portion of my pregnancy so the big kids and I went to live with my mom and dad; I was too sick to function well on my own and their diet made it so others could not help much and my parents are pros with our allergies. Incidentally, this stay was when my parents realized just how much I wasn't exaggerating when I said there was something really wrong with the big kids. It was nice to know it wasn't just my parenting or perception but that someone else who lived with them saw what I was seeing...
Life went on and when DH got home, kids and I came back too. The rest of the pregnancy was pretty standard...not eating well and feeling horrible all the time but other than that, pretty uneventful. During my pregnancy with her, I knew I should avoid dairy & nuts but I was so sick I just ate whatever I could keep down. So she really didn't have a healthier beginning than the others. After her birth, she had very high billirubin and had to stay in the hospital for 5 days under a light. The pediatrician there did not agree with my decision to delay vaccines and made life as miserable for me as he could. At this point, all I knew about vaccines was that you shouldn't give them to people with auto-immune disease and both my older kids had auto-immune so clearly, waiting to see about Kate was just common sense. To me, anyway...not so the doctor. (Note: anaphylactic food allergies are considered an auto-immune disease)
The day before Kate was born, DH & I got a new house on base. He had been promoted and with that promotion came a house up-size; so on the day of her birth, he spent only a little time at the hospital and came home to make the place ready for us to arrive. My mom was with me at the hospital but I was really out of it for a day or two (anesthesia is not my friend) so I felt alone. I wasn't alone, I just felt that way...being bullied by some pediatrician I didn't know b/c of choices that I felt were right for my children, unable to hold my newborn b/c she had to live under those lights, unable to nurse (she never did get the hang of that), hubby preoccupied with moving things from house to house...it was pretty horrid. I was glad to get home once her billirubin levels went down far enough to leave!
As I mentioned, Kate was never able to nurse. She had allergies right away in the hospital but we were prepared this time and had brought our own diapers and didn't let them slather anything on her, nor did we allow any bottles. They did end up giving her a bottle of sugar water b/c I was so drugged up that I could not nurse her right away. Her food allergies were so severe though that we quickly learned she could not tolerate a single formula out there, so I had to modify my diet to make my milk safe for her. I'll get to that later but in the meantime, you should know she NEVER did get the hang of nursing. I spent hours and hours with lactation consultants. She wasn't tongue-tied, she wasn't lip-tied, she wasn't anything wrong that anyone could figure out, she just couldn't nurse. This was a real problem for me b/c that meant I had to spend a LOT of time pumping to get enough milk to fill a bottle. I used the hospital-grade pump for a bit and then hubs bought the best we could find at the store so I could spend the next 14 months pumping several times every day. I didn't hate it too much b/c I was just glad that she could at least have MY milk! But it did eventually grow tedious.
This time at the pump also gave me a ton of time to sit and read. My big kids were off in their own world and as long as we had all the locks locked and the chains chained and the alarms on the glass door, I could reasonably sit for an hour at a time pumping. Our house was autism-proofed so they were safe there. Kate liked to sleep a lot and was pretty happy if I was eating right for her, so it was easy enough to juggle her needs with my pumping schedule. I say that now but I wonder if my mom and husband would remember it that way...might be wishful thinking that it was all that smooth. There is a lot I don't remember from those days.
As I mentioned she had a bunch of food allergies right off the bat. And hers were bad. I mean B.A.D. Anaphylaxis is terrible, of course, but for her to be covered in hives within minutes of eating my "broken down and pre-digested" milk was a sign of a child whose gut was in great distress. If I ate the wrong thing, she would shoot brown sludge across the room while I changed her diaper (what is it about air on the rear that makes a child go??). I would have the kids leave the room if I was changing Kate b/c she could shoot them from 100 paces with horrifying accuracy. The stuff that would come out of her was just all wrong and it smelled like baby poop should not smell. Dead cow...that's the smell...and she was just a newborn. Docs gave us the standard answer of "That's normal" so they were no help at all! Something was clearly wrong with her but all I knew was food allergies so I worked hard to discern her allergies. It was tough for both of us!
About 6 weeks into her new life, a friend who had been watching my older kids for a very long time, finally braved the subject of Kate's allergies. She shared with me about candida, a systemic yeast infection, and how it had affected her life and wondered if it might be a problem for my kids. She was so sweet; I'm sure she KNEW it was a problem but she also knew I had to arrive at that conclusion for myself. She pointed out that every time I ate something that feeds yeast, Kate's allergic reactions would flare. After talking with her, I went home and sat at the computer during one of my pumping sessions and looked to see what candida was and what you did about it. I not only saw my children listed in the symptoms, I saw myself. I didn't want to though. There was no way on earth I wanted to think about taking more food away from my kids...I mean they were already SO deprived (I felt) with the lack of dairy, soy, nuts, pineapple; I couldn't possibly take away more foods could I??
However, that information was now in my head and I started to put 2 and 2 together with my baby and me.
Now you must know, I used to eat sugar straight out of the sugar bowl. I know, it's shocking, go ahead and gasp. But you wouldn't believe how many others do the same thing...and you know why? Because our systemic yeast calls for it. We CRAVE it like a smoker craves a cigarette or an alcoholic craves their next drink. It is a real craving that will wake you up at night so you can satisfy it. Some people dress their sugar up as candy or cakes or ice cream or sweet breads or pies, I just went straight to the source - the sugar bowl. Now if you know that sugar suppresses your immune system, and you realize that I had been eating that way for years (and was surprisingly thin!) you can now see why my children were born with out-of-whack immune systems. They didn't stand much of a chance to be healthy, being gestated in a body with that kind of crazy going on. Diet is so SO very important before conception and during pregnancy. All that bull about "eat what you want, you're eating for two"...yeah, you are...so be careful what you eat! Set your child up for health, not for illness...what you eat DOES matter. Maybe not to you but to your child's immune system is sure will matter.
But I digress, so here I had this sick baby who was covered in eczema (her skin felt like leather everywhere) and who was in major gut distress as evidenced by the madness that happened in her diaper several times a day. And in the background, I had two older kids who were spending their days screaming and twirling and throwing themselves against the wall, completely unaware of much else. AND my husband was frequently deployed on top of that. You can imagine how quickly my sanity left...and it was replaced with a desperation to find out if I could do something to change this picture.
So I asked my friend for her doctor's information, which she was happy to share. I reluctantly booked an appointment with him for my baby since she seemed to be in the worst immediate distress. After all, we had a handle on the other kids allergies so she was the one I was desperate to get some relief for. My husband & I spent some time with the doc who was unlike anyone I'd ever met before. Up to this point, I only knew docs who wanted to give me a pill to suppress whatever was going on in my body. This doctor wanted to talk about what I ate and drank. That was strange b/c no one had ever cared before. Well this guy did and I soon found out why. He had a lovely nutritionist who came in the room with us and she scribbled notes furiously while doc and I talked. My husband had come along so he could try to keep the big kids under control but he listened and chimed in when he could. I remember the scene of chaos in that tiny room but I also remember the doc saying "Oh, well, the problem isn't her, it's you". I must have looked confused b/c he went on to explain that my diet was horrible and it was feeding a pre-existing problem in the baby...candida. He sent us both for blood work to confirm candida and our levels were both ridiculously high. How does a newborn have horribly high levels of yeast in the blood??? Yeah, you guessed it...from me.
When we went in for our follow up, he had the dietician counsel me on the candida diet. I vividly recall my husband holding Grace with one arm, trying desperately to catch Tony with the other, while I was holding the baby and trying to listen. It was complete chaos. During that visit is when the doc first mentioned that we should have Tony tested for autism...I had never mentioned autism to him, he just knew it when he saw it. But that's Tony's story that you can read elsewhere. Finally, the doc left and the nutritionist asked DH if he would take the other kids out so she and I could talk. There she gave me the fast version of what yeast was, what it was doing, why it was causing these reactions, and what to eat. She also told me to journal everything; that it would help me keep track of everything. This was especially important b/c I was breast feeding a baby from the bottle, so I had to keep special track of what I ate, when I pumped after that meal and when Kate got that bottle...then how she did with it. Once I got the hang of that, it was a matter of days and I could see what was happening. I would eat Life cereal (sugar and wheat), an hour or two later I would pump, then she would get the bottle, then she would have extreme gut pain, eczema flare, noxious diarrhea and be super grouchy (who wouldn't be with all that going on??). It REALLY didn't take long to see the correlation at all...anything that fed yeast made her worse.
So I went on an extreme diet...extreme only b/c I had to change everything I knew about food; but it was a good change. As I learned to eat plain chicken, rice, broccoli, and salads, my baby suddenly started feeling better. Her eczema faded, her poop started to normalize, she had less screaming in pain. This was clearly important to her body. I could not take the traditional anti-fungal medications b/c I was nursing so I plowed my way through the die-off in myself. Boy that was wretched...I had a blinding headache for 4 days and would guzzle raw apple cider vinegar to get 3 minutes of relief. But within a week, I felt great. And the longer I stayed on this diet, the better I felt; and the better Kate got. It was amazing...I had not known I wasn't healthy until that point. Suddenly I could think clearly, my skin looked great, I actually glowed with health. I remember overhearing a friend saying about me "That should be me, I want that life" and all I could think was "Are you insane??? I have three sick children, two with autism, and you want to be me?" But what she saw was a healthy person who glowed b/c my brain and body were well.
However, all was not peachy in my world in spite of my great skin and happy disposition. I finally had a clear brain so I could think and research and learn and I did so with a crazy passion. Food had changed my life and I was going to see if it could do the same for my kids. A mom on a mission is a serious thing and not something you want to get in the way of. I scared off all sorts of people but I had learned something: I could change my baby's health by what I ate. So the natural conclusion was that I could change the other children's health with what they ate. So I bought another journal and started journaling what the other two ate, how they behaved, their bowel habits, their skin; everything I could think of went in that journal and VERY quickly I was convinced they needed a dietary overhaul too.
Back to my nutritionist I went and together we worked out a menu plan. It wasn't easy b/c we had a myriad of food allergies to work around. The kids were allergic to even healing, whole foods so it wasn't as easy as removing sugar and replacing it with real food. And as I've mentioned before, I didn't know how to cook. I only knew how to follow direction on the box or can so this was a whole new world for all of us. God bless my husband, he tolerated a whole lot of crazy from me. But he, like me, was desperate for healing in our children. My nutritionist already knew about the Body Ecology Diet and wanted me to implement it but I resisted b/c making cultured vegetables and coconut kefir sounded intimidating. However, autism recovery can be very costly so we ran out of money quickly and she would allow me to pay her in cultured veggies. Funny girl... anyway, I learned to make them as payment, and then she would say "Oh just give me one jar, let the kids have the rest". ;) So cultured veggies sneaked their way into our lives and suddenly I could get probiotics into my kids for much cheaper than buying a supplement. And it was more effective too. So into Body Ecology I dove and we still eat that way now.
I keep getting sidetracked...so back to Kate. While her gut and allergy situation started to improve on our new diet, her health took did the "two steps forward, one step back" type thing. She soon became failure to thrive although my milk was abundantly healthy and she had as much as she wanted. Her hands and feet also started to curl in and she could not straighten them...so before she could even walk she was pigeon toed and unable to use her hands in a natural way. She adapted as children do, of course, but you could tell just by looking that something was wrong with her. Her stomach would bloat out so much you could see the veins under her skin and her arms and legs got stick thin. It was frightening and doctors were unable to tell me a thing that was wrong with her. Oh it's probably the food allergies, they would say. At this point, I was still using both alternative and traditional doctors. We ran test after test after test and all we could see was nothing! We even had a GI scope both ends and he said it was as healthy as could be in there. About that time her stomach started bloating out, she also stopped eye contact and her cheery disposition went away. At the age of 10 months, she acted almost exactly like her big brother, minus the language. I did not bother to get her diagnosed b/c we already had a plan of recovery in place, but she was her brother's duplicate and he did have a dx of autism...and her body was a disaster. I never did figure out how she was able to get better, yet sicker all at one time. Supplements would occasionally provide relief from certain symptoms but not always as her body seemed to be constantly fluctuating. It was a strange situation for sure.
So during all this time, I had hours and hours of pumping time, if you remember. I started spending all that time on the computer, researching, reading, talking to moms in my situation. I learned quickly that moms knew more about my kids than my doctors and I started listening to what these moms were saying about gut dysbiosis, heavy metal poisoning, pathogens, bacteria, overloaded livers, urea cycles, kreb cycles, methylation, etc. You get the picture...I became an expert detective very quickly. With my alternative doc, I would run tests aimed at finding out what was going on inside the body and learned that Kate had antibodies to typhoid, smallpox, anthrax. Where on earth does an infant get such things in her body?? This was from daddy. He had ALL these shots given to him shortly before Kate was conceived. So not only had Daddy been poisoned from these unnecessary shots, so had his daughter. It passed down from him to her. There is no other explanation, her profile matched his vaccination record. No wonder her body was so sick! Not only had I destroyed her immune system with my bad pregnancy diet, but shots intended for another person had invaded her already non-functioning immune system. Oh yes, and did I mention that the dentist informed me while preggo with her, that I had two leaking amalgam fillings in my mouth? Those things are 51 % mercury and they were leaching into my system every single day of her gestation. It's a miracle her brain survived such an assault.
So we set to getting all these horrible things out of her body! With a good diet in place, a good chiropractor in place, we were ready to chelate. We consulted two different doctors on this as chelation is not to be taken lightly. We took the same precautions as we did with the big kids and it was amazing to watch the transformation in Kate. Her wrists straightened out and her feet turned back the way they should have been...this all happened one chelation weekend when we could smell metals in her urine. It was a vile smell but there was no mistaking the metals. And after that weekend, her hands and feet never turned in again. Her stomach started going down and she started looking for our eyes again. Her social anxiety completely melted away and she wanted to play with everyone!
It took quite some time. She did not recover as quickly as Tony, but she DID recover. She is not the picture of health that I would like her to be. She still has the same severity of allergies that the other two have, but the autism is gone. Kate is the most fun-loving person I know. She doesn't meet a stranger, there are only friends she hasn't met yet. When we walk in a room, Kate will look around, then ask "Can I go make a friend with that person?". This is a far cry from the child who used to be unwilling to look anyone in the eye.
I won't recap everything we did as you can read about it in the other kids stories...it was all the same stuff and while they still have allergies, we still search for an answer to that. Our family would not be complete without Kate, she's the icing on our GFCFSFSFCF cake.
We are so grateful that we were able to bring her out of the fog she started life in. I hope hearing her story is encouraging to you. Spread the word, recovery happens.
Medical experts say it's not possible to recover autism. We have living proof in the form of three children, that it IS possible. In my blog you will find recovery stories, along with information regarding health that I have learned over the years. And sometimes just snippets of life to give hope that yes, life can be normal after the hard work is done.
Sit back, enjoy, and be hopeful! RECOVERY HAPPENS!
**Kids names have been changed to protect the innocent and naughty alike. ;)
**Kids names have been changed to protect the innocent and naughty alike. ;)