My Daughter’s Recovery – Part Two
Written by H.
Sunday, 3 June 2012 01:24
So I left off last time with my daughter in constant significant pain, and I was at a loss with what to feed her. Every food we were trying seemed to elevate her pain. But she still has to eat, regardless.
And as helpful as the GI team at Children’s Hospital was most of the time, they missed the mark when it came to helping us deal with food. They told me to feed her what she wants ‘and lots of fiber’. No one even suggested a dietician, and I am surprised I didn’t think to ask. So I am not sure who to point the blame at.
Anyway, when this all started happening, I begun to get twitter messages and emails with some food advice. People were steering me towards a GAPS or SCD diet. If you explore the details of these diets…whoa. They make the FODMAP diet look like a picnic.
If certain foods are causing the intestine to cramp, contract, bloat, etc., then you avoid those foods. Foods that are more likely to cause these symptoms are foods that are more complex carbs, lactose, grains, fatty/fried foods, highly processed foods. Foods high in sugars, preservatives, etc. It is a long list of foods that cause intestinal discomfort. We tried a FODMAP diet based on the handout from the doctor at the hospital, but we weren’t seeing a decrease in pain despite our effort.
I finally caved and bought the book on the SCD diet. You must read it first before you make the commitment to the diet. Elaine Gottshall is the wonder behind the SCD diet, and I encourage you to read this quick summary about her journey to heal her four year old daughter from ulcerative colitis back in the 1950’s. Doctors encouraged surgery or a colostomy bag for their daughter, refusing to consider any possibility that food might be the harm or might actually heal her. Elaine walked away from conventional medicine and with the help of another doctor that believed in the power of nutrition, completely healed her daughter. It took time and effort but she saved her daughter’s intestines and fully restored her health. Many, many people since then have followed this diet with great success. The amazing thing about the Simple Carbohydrate Diet is how many children with autism/autism spectrum/ADD/ADHD have made leaps & bounds with changing the foods they eat. You can read more about it (and success stories!) at PecanBread.com .
But make no mistake, this isn’t an easy fix. I had to devote myself to monitoring everything, and I mean everything that went into her mouth. If you are an adult you can look over this diet and see that yes, it is hard, but doable. For people with small intestine bacteria overgrowth or other intestinal issues, you are staring at one to two years on this diet to heal the gut. It takes time and effort. Now tell a kid they cannot have any sugar sweetener other than honey for that long. NO grains, period. No rice, no gluten no wheat no flour, etc. Nothing. Certain fruits & veggies yes, others, no. No restaurants. (Just look at the illegal foods list!) You MUST read the book. You MUST be prepared to prepared to be cooking almost 100% of your child’s food & snacks. Elaine emphasizes that you must “fanatically adhere to the diet for success”. You must teach your child not to cheat even once, lest you cause more harm to your intestine and set yourself back, undoing all the previous hard work. I had to get myself to that mental place of ok I am looking at a shitload of work here can I take this on? It also isn’t cheap. If you are going to commit you must try and find the most organic, naturally grown produce possible. Almond flour to make bread-y types of foods. Not cheap! (Thank God for Amazon Prime!) Organic eggs, chicken, beef, when you have made it to that stage of the diet – the beginning stage is very, very basic simple – boring! – fare. The diet is broken down into stages, noting that the intestines are at their most sick & fragile in the beginning. The goal is to calm the initial inflammation, so that healing can begin. I was ready for healing to begin.
Seriously, I was running on empty. I would spend my days running to Trader Joe’s & Whole Foods trying to find something to feed her that wouldn’t result in more pain. I was coming up with nothing. I am so grateful that both stores have such an easy return policy. I would haul back everything that didn’t work out for us. Even if it was half eaten. They would take it back happily (Note: they did get to know me and what was going on with my daughter). I would then race through the store looking for something else that might stick. It didn’t occur to me that maybe I needed to start small & slow and work my way up. I wasn’t eating much, I certainly wasn’t sleeping, and it showed. I looked like worn out rag and I felt even worse.
I talked to my husband about it and he was on board it seemed like the right thing to do. I talked to my daughter and tried to explain the importance of this diet, how much effort, time & money we were going to put into it, and how much effort she was going to have to put into it. Of course she agreed. So I made the commitment, too, and started cooking.
Homemade chicken & beef stocks that take 12 – 24 hours to cook. Homemade ‘breads’ from almond flour. The right fruits and vegetables. No dairy except for cheddar cheese, Parmesan, or farmer’s cheese (which is like cottage cheese only drier). These dairy products have very little actual lactose due to the process of making them. She could have these items later on down the line. You can read more about the SCD Intro Diet here. I made mistakes in the beginning, but was warned – most people do. Just get up, dust off, and start over.
So here is where you ask – what happened next? Well, the first two days did not go badly. Homemade chicken stock, eggs. Trying to follow a limited guideline. I could tell, she was not enjoying it.
But she wasn’t screaming. She wasn’t howling. The constant pain that was there was abating somewhat. Not 100%, but at least she was able to have times when she felt almost normal. My husband and I were amazed. And relieved that she was getting some relief. I messed up on some foods quite a bit those first days, but kept at it. She had a good attitude until a few days in. She got so tired of the same foods and flavors with no treats. Finally on a Sunday morning as I tried to feed her eggs again, some mashed ripe (must be ripe! not green!) bananas mixed with almond flour sauteed in olive oil ‘pancakes’ and honey on the side as ‘syrup’ (no other sugars allowed!) she lost it. And she lost it big time. I hadn’t seem my girl throw a tantrum like that since she was a toddler.
She ran out of the room and threw herself on the sofa. My husband went after her and held her, just let her get it all out. She was screaming “I don’t want to eat that way anymore! I want pizza! I want cake! I want cookies!” She cried and cried. I was so torn up over it all. I totally got it, I didn’t blame her. Her brother wasn’t eating that way. Her friends could eat what they wanted. It wasn’t fair.
Once that storm had passed and I tried again to explain why we were doing this – wasn’t she physically feeling better? Weren’t we seeing improvement? Yes, and yes. I needed her on board. She took a deep breath and re-committed herself.
Still. It wasn’t easy and it didn’t get any easier. I cooked. And cooked. And prepped. And froze. I froze foods I prepped. I reheated foods I had froze. I froze homemade stocks. I would bring her a cup of chicken broth in the night when she wasn’t feeling well but was hungry. (“I will never ever eat chicken soup after I am well. Ever again” she promised). I was constantly cooking because fresh is best and she needed snacks and foods for throughout the day. She started back to school and needed some tasty snacks to keep her engaged & energized. I was making homemade organic applesauce almost every other day. I would find myself at 8:30 at night leaping up from the couch saying “Oh shit I forgot she needs snacks for tomorrow!” and start peeling apples to throw into the crockpot. I would boil organic carrots then puree them so her intestines would have the least amount of work to do to get the most nutrition from them. She wouldn’t eat much, I will tell you that. She didn’t like this diet at all and I didn’t blame her. It’s just not a kid’s choice of foods, even if you have been trying to feed them well over the past couple of years. My kids are picky picky eaters and here it was biting me in the ass. Learn from my mistakes!
All this and I still needed to feed me, my son & husband. My husband would eat whatever I put in front of him (so he ate a lot of what my daughter ate) but my son? He wasn’t eating it. I didn’t have the fight in me, either, to push it. But we all moved our eating over to much more organic and I must add, the least amount of preserved foods I could manage. With the least amount of ingredients. Which is important in general, that your foods be as wholesome as possible.
Winter turned into spring. She began to get better. Then she seemed to get worse come March.
She developed a secondary issue which was deemed by the rheumatologist as ‘amplified pain syndrome‘. She begun to have debilitating pain in her hands and feet after some normal activities, though not all the time. It was mystifying. She would wake up in the night screaming, unable to bear even the feel of the sheet on her hands. But only her hands. Or she would jump around outside and her feet would be in unbearable pain. After a few of these episodes (hoping it was just a passing storm) we ended up in the ER. After a neurology exam, the doctors just shrugged and advised us to get her back into the pain clinic for further evaluation. We were shuffled out with a dose of Tylenol & my daughter screaming. Again, we were amazed at how useless the ER was for us.
The pain clinic & GI sent us over to rheumatology. Rheumatology concluded that it wasn’t arthritic in nature, that this was just a part of her intestinal issues, and that she needed occupational therapy for strengthening & desensitizing her extremities. Plus physical therapy for all over conditioning. I loved the rheumatologist we saw, Dr. Dedeoglu at Children’s. She took her time getting to know my daughter and listening to us. She did say she was surprised my daughter recovered so fast from her post infectious IBS. (Fast? That was fast?) I told her what we had been trying. She said “Whatever you are doing seems to be working”. I felt so validated.
More appointments. Follow ups, PT, OT, end of school events. Trying to be normal, have fun, run a household. Pay attention to my other child, who has been so very sweet and understanding through all of it. (Can I share a little story about my son?? He was at a friend’s house on a playdate, had to go to the bathroom. He was sitting on the toilet when the mom checked in on him asking ‘everything ok in there? He said “Yup I’m just pooping. It’s fine. I wish my sister could poop so easy.” I love that little boy! Love him!) Cook the right foods. Pay attention to my husband. Keep the house clean. Pay the bills. Chase down incorrect medical bills. (I swear I have insurance! Run that through again! I didn’t stop having insurance for a week then pick it back up again. The problem truly is in your billing department.) I got frozen shoulder that demanded PT so I had to throw that in there as well.
My husband has been my rock through this. I put off going to Texas to see my friends and family like I usually do every March. He made me go in April. Eight days – I sat around with my family doing a whole lot of nothing. I didn’t help anyone cook, clean, or organize anything. I sat on my ass, went out to eat, slept a lot. It was awesome. My daughter had a flare up one evening while I was away but my husband didn’t tell me about it because he didn’t want to ruin my good time. “I handled it.” He is so much better at handling the flare ups than I am.
As of this post, my daughter is much, much better. She is regaining the weight she lost. We have our setbacks, but they are fewer and far between. I can identify certain foods that seem to set her off. We still do her PT & OT. My shoulder is better. School is almost out so I can relax about her missing schoolwork. She kept up just fine with her tutor. We have her health plan in place with the middle school for next year. While she continues to improve, I am learning to just roll with the bad days and appreciate the good ones. Like my daughter said during the worst of it all: “You never knew how good it felt to feel normal until you didn’t feel normal all the time”.
I think I do know how good it feels to feel normal, now more than ever.