Charlotte's Picture
Charley Beth loves cows- visiting them or on her plate!
Monday, June 23, 2014
Introducing....
Monday, June 16, 2014
Some Photos
"Chah-Chah do it. Eat brof! Meat!"
How we go anywhere- contending with allergies, not being able to eat processed foods, and making sure I always have safe food on hand for us to eat = lots of planning and prep work!
Little Trooper!
Enjoying some meat given to us at a discounted cost from a local farm!
No "Kini" for You
It's hard to be hopeful all the time. But I'm hopeful because it's better than the alternative.
We tried to introduce zucchini this week. Charlotte was thrilled to have some "kini" and happily fished all the green circles out of her soup to eat. Unfortunately, that night she had a mild rash. The next day, and the following day, it only got worse. What's so bad about a skin rash? It's the body's way of telling us that she's just not ready for that food. It shows that the food is creating inflammation inside, (and out) which is detracting from healing. So, here we are again, back to just meats.
I am learning about all types of food chemicals- phenols, salicylates, amines, glutamates, histamines, etc. Many kids with leaky gut have trouble with these chemicals and things. It's all so complicated! I found some organic rutabaga at Whole Foods today, which is supposed to be a very neutral vegetable. When her symptoms clear, that will be next on the list of things to try. Maybe that will be a winner!
We tried to introduce zucchini this week. Charlotte was thrilled to have some "kini" and happily fished all the green circles out of her soup to eat. Unfortunately, that night she had a mild rash. The next day, and the following day, it only got worse. What's so bad about a skin rash? It's the body's way of telling us that she's just not ready for that food. It shows that the food is creating inflammation inside, (and out) which is detracting from healing. So, here we are again, back to just meats.
I am learning about all types of food chemicals- phenols, salicylates, amines, glutamates, histamines, etc. Many kids with leaky gut have trouble with these chemicals and things. It's all so complicated! I found some organic rutabaga at Whole Foods today, which is supposed to be a very neutral vegetable. When her symptoms clear, that will be next on the list of things to try. Maybe that will be a winner!
Medical Decisions
I have learned that we must take medical advice with a grain of salt cup of broth. Everything we've learned to accept as true- things I've learned from kindergarten to college courses- have suddenly gone out the window. Trying to heal Charlotte has started with me cleaning the mental faith in modern medicine out of my brain and letting loose my hands tightly clenched with medical "facts." I cannot trust other people with my daughter's health- I must do my own research, stand on my own two feet (however lonesome they become), and be her advocate and helper.
We've certainly had the run around with doctors. Most people we've met seem completely unconcerned with Charlotte's food allergies and intolerances, since she is so chubby and developmentally fine. We've been told countless times that "most kids grow out of their allergies" and "she'll get better with time." Sure, that's fine in theory- but in practicality, when you're the one responsible for feeding and caring for that child, that doesn't work. What exactly do you do at mealtime? You feed her what every other kid eats and you're left to deal with eczema, sleeplessness, hours of crying, clinginess, and a very sad baby crying, "hurt, hurt, hurt." (See if that doesn't break your heart while not being able to soothe or console her from 3-6am.) We've been told we're over-exaggerating, "skin rashes are normal," and "try this" (yeah, like we haven't tried that already...) I've been given the guilt trip many times over that it's my fault and she is reacting to my breast milk and we should go back to another elimination diet. Our allergist wrote us two separate prescriptions for formulas, both of which contained more than three things Charlotte is allergic to. Our pediatrician threw up her hands and referred us to a GI doc. (Not that I blame her!)
Two weeks ago we took Charlotte to see her pediatric gastroenterologist. This was our second visit with this doctor. We left the first visit with a prescription in hand for a drug that is used to lower stomach acid (NOT a good idea when the body is already struggling with digestion...) and lessen inflammation (a band-aid fix that would not get to the root of the problem). We didn't get any answers, but were simply told to try the medicine and then attempt to add in grains.
This visit I came armed with all of Charlotte's medical files (which hadn't arrived for the first visit) and all her allergy test results. We reviewed her symptoms and history extensively. I explained that we had ditched the medicine he had prescribed after 6 weeks since it was not working and that we had started the GAPS diet. The doctor was very concerned that she was only tolerating meats.
The recommendation was to do a scope- an endoscopy and flexible sigmoidoscopy- to see what things looked like internally and to take biopsies. He was concerned about EGIDs (eosinophilic gastroenterological disorders). Basically, this is where there is an abnormally high amount of a certain type of white blood cell (eosinophils). When there are too many of these cells, they create toxins which cause inflammation, pain, erosion and damage. Foods (some, many, or all) trigger these cells, so when the patient is exposed to these foods, the body creates too many white blood cells to "attack" something that otherwise would be harmless.
This sounds a lot like "leaky gut," doesn't it? But somehow, scarier, since it's scientifically backed up by biopsies and recognized in the medical community. So if Charlotte has an EDIG, what then? This would mean a lifetime of avoiding all of her food triggers, elemental formulas, repeated scopes and biopsies, experimental steroid drugs with detrimental side effects... there is "no cure."
I reluctantly let them schedule the scope and then went home to stay up all night yet again, researching, praying, and thinking. Neither CJ or I wanted to put Charlotte into a hospital for an invasive procedure- which would be traumatic for her (and us), exposing her to germs, putting her under general anesthesia, and muddling up her gut flora, which we have been trying so hard to improve. Yet at the same time, we didn't want to be irresponsible parents. Decisions like this are what make parenting so hard.
Where would this information lead us? Would it give us knowledge that would help us make better decisions about her care? If we learned she did have an EGID, what course of treatment would we choose? If it ruled out an EGID, would we be any better off than we were currently? Would we learn something to help us move forward, or potentially take unnecessary steps backward? Of course, it would be helpful, at least mentally, to know WHY she is like this and to have an answer, but is it worth that risk and cost?
Here's what I learned- all these roads lead to GAPS. Where the medical community could not offer us hope for complete healing for Charlotte, the GAPS diet CAN. I posted on my Facebook GAPS community group and got an overwhelming response- parents chimed in to say that their child no longer suffers from these diseases since the GAPS diet. I read the positive responses about all of these sick children being healed, and I once again breathed in hope.
We may not seem to be making progress on GAPS right now. But there are kids I know of personally that have healed over time- some after months, some after years. I want that for Charlotte. She is already avoiding almost all foods, and it's horrid. This is not the kind of life I want for her. I want her to heal and thrive; to be able to eat a variety of healthy foods and be nourished instead of getting sick. Regardless of whether or not she has an undiagnosed disease, I feel confident that we're still on the right track. I will cling to the hope that the Lord will heal her through this diet. We'll keep moving forward (or attempting to) one meatball at a time.
So, if you're reading this, please know that this road is a challenging one, and it's not one we are embarking on blindly. We are doing all we can to make the best, most informed decisions. Thank you for joining us along this journey and for trying to understand and support us.
Tuesday, June 3, 2014
4 Months into GAPS Update
It's been 4 months since we began this journey. It's certainly been a wild ride, full of me learning things I wish I'd known earlier. In many ways it doesn't seem like we're making any progress, but I trust that we are. I want to take a moment to focus on the positive things that we have noticed and just to check in on where we're at, physically and mentally.
-Currently Charlotte is eating beef, pork, lamb, and turkey, and stocks made from meats and bones of these animals. Once in awhile she has venison when we're lucky enough to get it. She is tolerating a probiotic as well.
-Prior to GAPS I was limiting my diet since so many things bothered her through my milk- onions, garlic, spices, broccoli, cauliflower, cucumbers, brussel sprouts, chocolate, caffeine, legumes, and various other foods. Now I don't avoid any of these foods for discomfort reasons (although I am avoiding her allergenic foods). Any of these foods would keep us up for hours at night with her crying in pain.
-Since we started GAPS we have only experienced a handful of times when Charlotte's been up crying in pain for hours at night. We still have sleepless nights, but her discomfort level is nothing like it used to be. Usually now when we have sleepless nights it is because she is dealing with me trying to increase her fermented foods, or when she has eaten something she shouldn't.
-We are moving from 1 drop of sauerkraut juice per day to 2 drops. 3 drops was too harsh so we will move at a slower pace. Everything I'm learning about GAPS comes down to "slow and steady wins the race." We are pushing though "die-off" symptoms (rashes, eczema patches, irritability, clinginess, sleeplessness, and in general her just not feeling well). Healing foods like fermented foods, probiotics, egg yolks, and fermented dairy are instances where you push through symptoms unlike symptoms experienced with other foods (like vegetables). Symptoms from veggies or other foods are indicators that her body is not ready to handle them yet. This is why her diet is still so limited. The healing foods force her body to deal with the bad stuff in her gut, hence the "die-off." Once her body gets these healing foods in, they help repopulate the gut flora with good bacteria, and they kill off the bad bacteria, yeast, parasites, etc. Toxins are often released through the skin- this is a clear indicator that GAPS is working- her skin rashes are proof that her little body is trying to heal.
-We have had ups and downs with Charlotte. Despite struggling through symptoms and stuff, she is thriving. Her immune system seems to be stronger. Before starting this diet she was so susceptible to germs and was always sick. When she feels well, she just seems to be carefree and enjoys life. She continues to grow chubbier by the day. Developmentally she is well ahead many of her peers, knowing the alphabet, colors, some shapes, putting phrases together, attempting to sing, and recognizing concepts like "A is for ____. B is for ____."She can identify any animal, what it says, and will joke about whether or not it eats hay! She is smart as a whip. She will repeat any phrase, or word she hears- "a-ma-zing!" She loves dancing, Winnie the Pooh, being outside, doting on her baby dolls, playing with Parker, coloring, and doing just about anything. Her smile, spunk, and sweet spirit are contagious. She is incredibly good about not making a fuss when other people around her enjoy foods she cannot have. She will even pick a pea up off the floor (one of her favorite foods), walk over, and hand it to us. There have only been a couple of heartbreaking times when she cried because she wanted what she could not have. She has been so, so good about her diet. Praise God for this! I'm so glad she loves meat and has been a sport about the monotony.
-Since I've been on the Full GAPS diet, I feel so much better, and I didn't even feel too badly before. I no longer get daily headaches. I used to chalk them up to the exhaustion of running after two children all day. Well, I'm still running after them every day, but I no longer have to deal with mid-afternoon energy crashes or headaches. I think I've had one headache in 4 months, and that was a day when I was overdoing it and not drinking enough water. My energy levels are more consistent and my brain has more clarity. I really don't crave starchy, bready, sweet foods whereas I always did before. They don't even smell the same to me anymore. Once in awhile I smell or see something I wish I could eat, but it's really not that big of a deal. I am enjoying my diet and the things I am eating, and I am enjoying how well I feel. I am still struggling with planning, finding new recipes, not having any shortcuts during busy times, but it's getting easier. My skin is healthier, less dry and more clear. My cycles are less painful. I've lost some weight- even better is that I just don't worry about what I weigh anymore. I know I'm eating really healthy foods, and my body is healthy, strong, and the shape it was designed to be. I know it sounds silly, but I no longer stare down my "problem" areas in front of the mirror; I accept them and get on with my day.
-Mentally and emotionally things have been tough lately. I will post soon about our recent medical appointments and our decisions regarding them. This is worthy of its own post!
-We are living in Springvale for the summer at CJ's parents' house. This is a huge blessing! CJ graduated in May, so now he is hard at work getting applications out. We are praying that God will provide him a wonderful new job, in the right place, and a new home to live in (ideally that will allow us to be near our family support, for us to have room for the kids to play inside and outside, kitchen space for all our cooking needs, and a large outdoor area to explore, grow our own foods, and keep animals). After living in a small apartment, can you tell we're just craving SPACE?! Having somewhere to live this summer takes some of the pressure off and will allow us to be nearby family, which should be a great encouragement to me. We also have a big garden planted, which we (and our wallets!) are so excited about. Good things lie ahead.
-This means many changes right now and changes to come. CJ will move our stuff down this coming weekend. He's been in Orono without us, or rather we've been here without him. It will be good when we will all be together and can get into a new routine for the summer months.
-We appreciate the prayers and support. Please continue to pray for patience and wisdom for us, and for God to meet our upcoming needs through a new job and place to live. Please be in prayer that we will be able to successfully get some healing foods into Charlotte which should help her to be able to tolerate more foods (like veggies) in the future.
Thanks and love you all!
-Currently Charlotte is eating beef, pork, lamb, and turkey, and stocks made from meats and bones of these animals. Once in awhile she has venison when we're lucky enough to get it. She is tolerating a probiotic as well.
-Prior to GAPS I was limiting my diet since so many things bothered her through my milk- onions, garlic, spices, broccoli, cauliflower, cucumbers, brussel sprouts, chocolate, caffeine, legumes, and various other foods. Now I don't avoid any of these foods for discomfort reasons (although I am avoiding her allergenic foods). Any of these foods would keep us up for hours at night with her crying in pain.
-Since we started GAPS we have only experienced a handful of times when Charlotte's been up crying in pain for hours at night. We still have sleepless nights, but her discomfort level is nothing like it used to be. Usually now when we have sleepless nights it is because she is dealing with me trying to increase her fermented foods, or when she has eaten something she shouldn't.
-We are moving from 1 drop of sauerkraut juice per day to 2 drops. 3 drops was too harsh so we will move at a slower pace. Everything I'm learning about GAPS comes down to "slow and steady wins the race." We are pushing though "die-off" symptoms (rashes, eczema patches, irritability, clinginess, sleeplessness, and in general her just not feeling well). Healing foods like fermented foods, probiotics, egg yolks, and fermented dairy are instances where you push through symptoms unlike symptoms experienced with other foods (like vegetables). Symptoms from veggies or other foods are indicators that her body is not ready to handle them yet. This is why her diet is still so limited. The healing foods force her body to deal with the bad stuff in her gut, hence the "die-off." Once her body gets these healing foods in, they help repopulate the gut flora with good bacteria, and they kill off the bad bacteria, yeast, parasites, etc. Toxins are often released through the skin- this is a clear indicator that GAPS is working- her skin rashes are proof that her little body is trying to heal.
-We have had ups and downs with Charlotte. Despite struggling through symptoms and stuff, she is thriving. Her immune system seems to be stronger. Before starting this diet she was so susceptible to germs and was always sick. When she feels well, she just seems to be carefree and enjoys life. She continues to grow chubbier by the day. Developmentally she is well ahead many of her peers, knowing the alphabet, colors, some shapes, putting phrases together, attempting to sing, and recognizing concepts like "A is for ____. B is for ____."She can identify any animal, what it says, and will joke about whether or not it eats hay! She is smart as a whip. She will repeat any phrase, or word she hears- "a-ma-zing!" She loves dancing, Winnie the Pooh, being outside, doting on her baby dolls, playing with Parker, coloring, and doing just about anything. Her smile, spunk, and sweet spirit are contagious. She is incredibly good about not making a fuss when other people around her enjoy foods she cannot have. She will even pick a pea up off the floor (one of her favorite foods), walk over, and hand it to us. There have only been a couple of heartbreaking times when she cried because she wanted what she could not have. She has been so, so good about her diet. Praise God for this! I'm so glad she loves meat and has been a sport about the monotony.
-Since I've been on the Full GAPS diet, I feel so much better, and I didn't even feel too badly before. I no longer get daily headaches. I used to chalk them up to the exhaustion of running after two children all day. Well, I'm still running after them every day, but I no longer have to deal with mid-afternoon energy crashes or headaches. I think I've had one headache in 4 months, and that was a day when I was overdoing it and not drinking enough water. My energy levels are more consistent and my brain has more clarity. I really don't crave starchy, bready, sweet foods whereas I always did before. They don't even smell the same to me anymore. Once in awhile I smell or see something I wish I could eat, but it's really not that big of a deal. I am enjoying my diet and the things I am eating, and I am enjoying how well I feel. I am still struggling with planning, finding new recipes, not having any shortcuts during busy times, but it's getting easier. My skin is healthier, less dry and more clear. My cycles are less painful. I've lost some weight- even better is that I just don't worry about what I weigh anymore. I know I'm eating really healthy foods, and my body is healthy, strong, and the shape it was designed to be. I know it sounds silly, but I no longer stare down my "problem" areas in front of the mirror; I accept them and get on with my day.
-Mentally and emotionally things have been tough lately. I will post soon about our recent medical appointments and our decisions regarding them. This is worthy of its own post!
-We are living in Springvale for the summer at CJ's parents' house. This is a huge blessing! CJ graduated in May, so now he is hard at work getting applications out. We are praying that God will provide him a wonderful new job, in the right place, and a new home to live in (ideally that will allow us to be near our family support, for us to have room for the kids to play inside and outside, kitchen space for all our cooking needs, and a large outdoor area to explore, grow our own foods, and keep animals). After living in a small apartment, can you tell we're just craving SPACE?! Having somewhere to live this summer takes some of the pressure off and will allow us to be nearby family, which should be a great encouragement to me. We also have a big garden planted, which we (and our wallets!) are so excited about. Good things lie ahead.
-This means many changes right now and changes to come. CJ will move our stuff down this coming weekend. He's been in Orono without us, or rather we've been here without him. It will be good when we will all be together and can get into a new routine for the summer months.
-We appreciate the prayers and support. Please continue to pray for patience and wisdom for us, and for God to meet our upcoming needs through a new job and place to live. Please be in prayer that we will be able to successfully get some healing foods into Charlotte which should help her to be able to tolerate more foods (like veggies) in the future.
Thanks and love you all!
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