I really thought I'd write about myself before my son. I feel like I tell his shortened story all of the time because people ask me why I do what I do. So I didn't feel particularly motivated to share all kinds of details. It's been a trying parental week this week and I wasn't feeling extra maternal towards the little bugger. But it's bubbling out anyway, so here goes.
Hap was born 13 months after our daughter. They would have been a year apart if she hadn't come 3 weeks early (still acts like that) and he would have stayed forever if we'd have let him, so we induced. Again, he's still like that. 'Hum da hum', until the spoon comes out and he shakes it into gear. Both of my pregnancies were healthy. I got extra hippie about my deliveries and had a thick, detailed delivery plan for the hospital. (I know they were thinking that if I didn't want drugs that badly, wanted to stand until the end, and did not want the placenta ripped out, just deliver at home-my man had said no)
Nursing our daughter had been an unsure, tedious, short lived experience, peppered with pediatrician statements about 'failure to thrive' That is the worst thing ever to say to a new/hormonal mom. I'm thinking, 'help a sister figure out this nursing thing and leave the name calling in your head' Prepared to nurse until the boy was done, I became a master the second time around. Little man came out too fast and had a belly full of gunk still and had no desire to nurse the first couple of days. Little glitch. Then we were off and running. I was pumping one side, feeding him on the other and freezing the extra. He was a happy, mellow baby except for one thing-he violently threw up after every meal. I wont bore you with the details of trying to burp him mid way or any of the other things we did to help the poor guy. But still he was happy. At two weeks old, that's what my man named him. And it stuck.
We went to all kinds of Drs appointments to figure out why Hap was vomiting, pooping all of the time, had cradle cap galore, and his neck lymph nodes looked like 1/2 golf balls. But he was happy and slept through the night. They gave us steroid creams; that was the end of our medical help.
When he was 4ish weeks old we began the process of moving from N. Nevada (to California) to Colorado. We still struggled trying to figure out what was wrong. It was frustrating, scary and kept us in a constant state of anxiety. Thankfully our ultra active daughter appeared to only have eczema and slept through the night; despite her night terrors and leg thrashing.
Colorado was a life changing experience for us. My man was swamped in a new job, I had no friends, we lived 20 minutes from town in good weather and the boy had begun passing whole foods in his stool. We established care with a wonderful pediatrician that quickly washed his hands of us and sent him to an allergist. Thankfully my mom was in town for the first blood draw for both children. In addition to a wonderful neighbor that also made the hour trip into Colorado Springs with us. After laying on my screaming toddler during her blood draw, we were never able to get enough to test for anything. Hap's results said he was fine. No allergies.
So here's the scenario a couple of weeks later. Calm, hopeful Mama with a toddler and an infant, sit in the exam room while confidant allergist writes a prescription and hands it to me after he reads the results that there is 'nothing wrong' with my son. Script reads: "Take a cruise and relax" I kid you ***** not. I call my man from the parking lot hysterical and indignant. Yes, I'm passionate but I am mellow while listening about my kids. The allergist did however agree to prick his back, arms etc. A RAST test. I would need to come back another day.
Second appointment. Same results. Same script. Really? I drove the hour back to our home in a state of hysterical despair.
In the mean time, another Mama and I began hanging out. It was because of Pippi that I even thought about questioning what I was eating as the source of our boy's bloated belly, crazy behavior, dark under eye circles etc. As I made changes to my diet, we did see some basic relief from his symptoms. But our world was still a constant fear of the unknown. Understand that at the time I was still 50 plus lbs over weight, barely cooked and was just trying to survive 3 moves and 2 babies in two years. I was overwhelmed, scared, confused, frustrated, anxious, ill equipped, tired and determined to keep nursing. My poor man was working with a new job and trying to figure it out. Shell shocked. Dark times.
Hap was 18 months when I joined MOPS. Another Mom in our small group reached out to me after hearing bits and pieces of our drama. She told me about her Autistic son's Dr. in Colorado Springs. After a two month wait, we went to our first 3 hour appointment. He listened. He really listened to all of the challenges we were having and asked questions that no other Dr. had.
Every month we went back and tried to put the puzzle together. We tested his stool, urine, blood. Looked for parasites, imbalances, issues with how he metabolizes food, food intolerance, leaking proteins and on and on. Understand that 7 years ago it was uncommon to work with kids in this fashion. Gluten, Dairy, Grain, Oxalate blogs didn't exist like they do today. One yahoo group did: Specific Carbohydrate Diet. The site today has seen massive improvements since our start.
It was the staff Nutritionist that turned us on to the diet. While working with her we started to turn a corner. We were willing to try what appeared to most as overwhelming. To us it was a plan. The boy had horrible amounts of bacteria in his stool, 87 out of 92 allergens, and had painful stomach aches. Not good.
At this point we were willing to be the 'freaky parents' that brought his food into restaurants with us and went to great lengths to mimic birthday party fare with his limited ingredients. We followed the SCD plan fanatically. At one point I calculated spending 37 hours a week in the kitchen. If I were to start this plan again today, it wouldn't be so intensive. There are so many incredible resources out there now. Our experience is the reason that I'm one of them. I also swear that if it hadn't been for SCD, we wouldn't have seen the improvements that we did.
I also know to the marrow of my bones that our new Colorado friends helped us survive those 2 years. They were inquisitive and supportive. Other parents can be vicious. 'What do you mean you don't go to McDonalds? Your kid doesn't eat dye? No ice cream? No bread? Seriously?' But when it's an allergy there is a tendency to cut each other some slack. We had strangers that were kinder to us than family members. At one point, 2 family members informed some neighbors that we were making up our kids intolerance. In front of me. Really?? Who does that??!!??
After the first year, every 3 months we began all of the testing again. Every trip home the same friends would listen to me cry over progress or lack of. And of course there was Tiffani. My 'to the end' friend. She would help me create meal plans out of sparse ingredients. Seriously. Sparse. Eggs, chicken, jello, broth, apples, green beans, home made goat yogurt, carrots and butternut squash. Salt, pepper, cinnamon, vanilla. Everything he ate had to be cooked, de seeded, and skinned. We stayed the course for almost 2 years. Then the summer after he turned four we were visiting Davis, CA and noticed that he was overly sampling the cherries while we wandered the farmers market. That was how we reintroduced raw foods.
Was he better? Sure. He slept through the night at 8 weeks and then stopped when he started eating rice cereal. Within a week of beginning SCD at 2 yrs, he began to sleep again. His moods improved. His skin improved. The eczema disappeared. The bloat would come and go. At one point his was taking 22! supplements. But we had a rhythm. We would make large amounts of food every weekend and then rotate the limited foods in and out of his week. We had supportive friends around us that helped with child care for Drs appointments. His other test results were improving and new research was pointing towards 'biofilm' as the internal issue. We no longer felt he was leaking away. And his Dr. began to urge us to 'main stream' him. Secondly, he made the statement: quit trying to look for the fix, maybe he was just born this way and you'll adjust. Best advice ever. We stopped sending him to preschool with a bib and goop foods. I began to relax.
What we learned from those first 4 years of his life shaped the way I guide people today. Everything I do is from an empowerment platform. There wasn't a lot of help for us in the early days. Because of that, I spend a lot of time putting resources into parents hands.
The other key component for us is attitude. We have always been the family that refuses to let people feel sorry for the poor kid, that's not eating any old thing. We've also been flexible in our thinking. Diet as a reason for illness had never crossed our minds that first year. My man is a healthy, athletic, wild land fireman. At the time I was a fast food junkie that stopped looking at the scale at 195. Food was just food. If it hadn't been for little man, we would have a led a very different life as a family.
Food as medicine drastically changed our lives. We moved from SCD to Gluten Free to Gluten/Dairy Free, and now we're finding that grains in general bother little man. Now he is strictly Gluten/Dairy free and we rotate grains in and out of his diet. We're primarily vegetarian and both kids choose if they want to eat meat when the opportunity arises, outside of our home. He still takes enzymes with most meals, lots of probiotics, essential fatty acids, and a multi vitamin a couple of times a week.
We've felt pretty confidant over the past 3 years about his health. This is actually the first time I've revisited all of these memories. It's quite overwhelming to think of where we've been. I stared writing this a month ago, then I'd start crying-put it down, and then picked it back up again the next week. Just thinking back to the Drs visits where we'd look around and be thankful for our own drama. Hap doesn't have sensory issues. He's not on the Spectrum. He could always have been worse.
Then 5 months ago, it sporadically started again. But this time he's been constipated. And he can verbalize his extreme stomach pain. He's had sleep problems, skin issues and behavior challenges again. I thought being a new Mama with a sick kid was bad. Try being the Nutritionist with years of pediatric experience under her belt. No bueno. I tried all of my juju and then called his Dr. in Colorado Springs. We tested stool and urine and got some nasty test results back. Instead of trying to fix this myself, I opted for much needed help. This Friday I've got the million dollar phone appointment with his Dr. We've been flying out to Colorado once a year for a yearly check up but with moving to Oregon recently, we couldn't do it.
I have the utmost respect for the medical Drs that I've had the privilege of working with over the past 6 years. But let's face it, the mainstream medical community is not trained to think about food, gut bacteria, bio film, etc. etc. My knowledge only goes so far. When I called his Dr. I told his office manager flat out that I just want to be told exactly what to do and I don't understand his lab results.
When all of this started happening again I was going through some crazy personal stuff that I'll write about another time. Thinking about this starting again put a worse tail spin on my own drama. Ugh!
I know I'll be given a plan. I know we'll do whatever we have to to make it fit into our lives. I know he'll heal again. Scared/nervous is an understatement.
I never wanted to go back to school, was happy being chubby, and didn't give a care about my cooking skills. Then came Happy, my Italian twin that challenged me to grow in more ways than I thought possible.
Anything for my family!