I realize that all parents have rough days. They all have rough nights. I feel like every single night is a rough night for us. As we approach the 1st birthday of our little (big) guy, I don't really feel like celebrating. Am I being a bad mom if I feel like the 1st birthday celebration should really be Hooray! We didn't kill you yet! or I can't believe I made it through a year of screaming and getting kicked in the face!
Our typical week has its normal highs and lows with baby behavior. For the most part our son is a very kind, funny, adorable bouncing baby boy. The frustrating part is that he is CONSTANTLY sick to one degree or another. We try ridiculously hard to make sure that he has none of the offending foods but the American diet is so filled with problem areas for us that anything is a potential disaster. When people go on a diet they have the option of cheating once in awhile. They get to build in cheat days here and there to indulge in whatever suits their palate. With our diet, the "cheat" foods are things like a touch of Justin's Chocolate Hazelnut butter or a scoop of Haagen Dazs Vanilla Bean ice cream. That is it. Out of everything in the whole wide world, that is literally all we have found. Our son reacts to both dairy and chocolate so both of those have to be miniscule amounts. His labs came back saying that he has a seriously low lactose tolerance. On top of that, he reacts to sugar wildly so sweets are kept to a minimum. I thought chocolate was safe but he kept reacting to it like it was gluten. Turns out that all the things that I kept saying to our doctor were making a reaction in our son were on a list of known gluten cross-reactive foods. We have a request from one of our doctors to get that lab done so we can see how reactive he is to the list. I know without a test that he is hypersensitive to them all. The lab is Array 4, fyi. We are basically beyond the Paleo/Primal diet and into the GAPS diet.
So where does that leave my diet? Well, here is the list of foods we cannot eat. I don't have this list made up based off of a Paleo or Primal diet, this is the known foods that seriously bother our son.
Gluten, Cow's milk, Soy, Soy derivatives, the entire legume family, Corn, Corn derivatives to include iodized salt, Chocolate, Potatoes, Sorghum, Rice, Coffee, Yeast, Amaranth, Quinoa, Millet, and Oats. Additionally, waxed fruit and vegetable skins, strawberries, blueberries and other small seeded fruits give him terrible reflux. They are all out directly but I can eat them without him reacting.
That pretty much sums up every single thing you can eat. If you actually find something that has not been made with any of those ingredients, the salt will probably remove that last touch of hope. Iodized salt contains corn which irritates our son's skin terribly and will make his skin boil. Fun, right? Not so much. That is why Mom is in a round the clock state of misery. I eat something or he eats something- he gets the itchies-he can't sleep- he wants to be held and nursed until the itchies go away. This lasts for HOURS. To add another layer of medical mystery to the batch, our son has a neurological tick every time he gets a bad food in his diet. What this means, we have no idea. His brain in constantly amazing us with what he can do at such a rapid rate but he follows the autistic diet so closely that it is often a little scary. Would he be having neurological problems if we just let him eat whatever? With all the research into leaky gut and leaky brain, I wouldn't doubt that something terrible could happen if we just fed him the SAD for a change.
Something has to give. So what then? Do we stop nursing? Well, that sounds all nice but what is he going to eat? I can give him some solids but he won't have a full diet because he is missing so much. There are no multivitamins that he can take, no formulas or supplements. 100% of his diet must be perfect. Additionally, he has no intention of weaning. I am pretty sure he would nurse forever if given the choice. The other problem with weaning is that I would then be making 2 sets of food and having to control our environment. As is, the entire house if free of all offending foods so we don't have an accident. Once we start introducing foods that he can't have, the risk of an accident goes up. Besides, am I going to sit in front of a child and eat foods that he can't touch for his whole life? That is a real jacked up move. Hey kid, you eat that bowl of specialty food while I eat these potato chips.
Last night Alton sprang from bed at 12:30 and declared that he was now capable of running like a toddler at 11 1/2 months old. Impressed with his advanced skills, we smiled then tried to get him to calm back down and get to sleep. Sadly, he had the itchies. That mixed with the newly found pediatric runner's high made for a baby that did not go to sleep until 3am. My dear husband asked me What did you eat? which was the last thing I wanted to be asked. I am pretty sure I fantasized about laying the hurt down about then. This is a question that he asks me pretty frequently that in no way is meant to be a negative thing. It just makes me livid. My reaction to it was to become quite irate. It is not like I am trying to make our kid constantly sick. My throat hurt thanks to a wicked flu bug and I couldn't take cough medicine because they all had bad ingredients. I ate a small amount of ice cream to cool the burn in my throat. This was enough to make someone itchy and wired from the sugar. Hooray. So what is left for me? Nothing...nada...zip...zilch. I can't even get drunk because the alcohol is not exactly ideal for him. Besides, I would be getting drunk daily. I think they have a term for that....oh yeah, alcoholic. (Actually, I couldn't be classified as an alcoholic, I wouldn't have time for meetings)
So the question is what do we do? I suppose the answer is to keep calm and carry on. If one more person tells me to pray, to let go and let God, that this is just a phase, that God must think I am amazing because he gave me quite a challenge, that .....blah blah blah....I suppose my only solution is to thank the makers of anti-itch and reflux medication and lace up my sneakers for a run. Boy, have I been running a lot lately.
Our typical week has its normal highs and lows with baby behavior. For the most part our son is a very kind, funny, adorable bouncing baby boy. The frustrating part is that he is CONSTANTLY sick to one degree or another. We try ridiculously hard to make sure that he has none of the offending foods but the American diet is so filled with problem areas for us that anything is a potential disaster. When people go on a diet they have the option of cheating once in awhile. They get to build in cheat days here and there to indulge in whatever suits their palate. With our diet, the "cheat" foods are things like a touch of Justin's Chocolate Hazelnut butter or a scoop of Haagen Dazs Vanilla Bean ice cream. That is it. Out of everything in the whole wide world, that is literally all we have found. Our son reacts to both dairy and chocolate so both of those have to be miniscule amounts. His labs came back saying that he has a seriously low lactose tolerance. On top of that, he reacts to sugar wildly so sweets are kept to a minimum. I thought chocolate was safe but he kept reacting to it like it was gluten. Turns out that all the things that I kept saying to our doctor were making a reaction in our son were on a list of known gluten cross-reactive foods. We have a request from one of our doctors to get that lab done so we can see how reactive he is to the list. I know without a test that he is hypersensitive to them all. The lab is Array 4, fyi. We are basically beyond the Paleo/Primal diet and into the GAPS diet.
So where does that leave my diet? Well, here is the list of foods we cannot eat. I don't have this list made up based off of a Paleo or Primal diet, this is the known foods that seriously bother our son.
Gluten, Cow's milk, Soy, Soy derivatives, the entire legume family, Corn, Corn derivatives to include iodized salt, Chocolate, Potatoes, Sorghum, Rice, Coffee, Yeast, Amaranth, Quinoa, Millet, and Oats. Additionally, waxed fruit and vegetable skins, strawberries, blueberries and other small seeded fruits give him terrible reflux. They are all out directly but I can eat them without him reacting.
That pretty much sums up every single thing you can eat. If you actually find something that has not been made with any of those ingredients, the salt will probably remove that last touch of hope. Iodized salt contains corn which irritates our son's skin terribly and will make his skin boil. Fun, right? Not so much. That is why Mom is in a round the clock state of misery. I eat something or he eats something- he gets the itchies-he can't sleep- he wants to be held and nursed until the itchies go away. This lasts for HOURS. To add another layer of medical mystery to the batch, our son has a neurological tick every time he gets a bad food in his diet. What this means, we have no idea. His brain in constantly amazing us with what he can do at such a rapid rate but he follows the autistic diet so closely that it is often a little scary. Would he be having neurological problems if we just let him eat whatever? With all the research into leaky gut and leaky brain, I wouldn't doubt that something terrible could happen if we just fed him the SAD for a change.
Something has to give. So what then? Do we stop nursing? Well, that sounds all nice but what is he going to eat? I can give him some solids but he won't have a full diet because he is missing so much. There are no multivitamins that he can take, no formulas or supplements. 100% of his diet must be perfect. Additionally, he has no intention of weaning. I am pretty sure he would nurse forever if given the choice. The other problem with weaning is that I would then be making 2 sets of food and having to control our environment. As is, the entire house if free of all offending foods so we don't have an accident. Once we start introducing foods that he can't have, the risk of an accident goes up. Besides, am I going to sit in front of a child and eat foods that he can't touch for his whole life? That is a real jacked up move. Hey kid, you eat that bowl of specialty food while I eat these potato chips.
Last night Alton sprang from bed at 12:30 and declared that he was now capable of running like a toddler at 11 1/2 months old. Impressed with his advanced skills, we smiled then tried to get him to calm back down and get to sleep. Sadly, he had the itchies. That mixed with the newly found pediatric runner's high made for a baby that did not go to sleep until 3am. My dear husband asked me What did you eat? which was the last thing I wanted to be asked. I am pretty sure I fantasized about laying the hurt down about then. This is a question that he asks me pretty frequently that in no way is meant to be a negative thing. It just makes me livid. My reaction to it was to become quite irate. It is not like I am trying to make our kid constantly sick. My throat hurt thanks to a wicked flu bug and I couldn't take cough medicine because they all had bad ingredients. I ate a small amount of ice cream to cool the burn in my throat. This was enough to make someone itchy and wired from the sugar. Hooray. So what is left for me? Nothing...nada...zip...zilch. I can't even get drunk because the alcohol is not exactly ideal for him. Besides, I would be getting drunk daily. I think they have a term for that....oh yeah, alcoholic. (Actually, I couldn't be classified as an alcoholic, I wouldn't have time for meetings)
So the question is what do we do? I suppose the answer is to keep calm and carry on. If one more person tells me to pray, to let go and let God, that this is just a phase, that God must think I am amazing because he gave me quite a challenge, that .....blah blah blah....I suppose my only solution is to thank the makers of anti-itch and reflux medication and lace up my sneakers for a run. Boy, have I been running a lot lately.
I think it's safe to say that you have a bit rougher than the rest of us. Is there any chance this will get better as he gets older, or is the nature of this particular problem likely to stay the same throughout his life?
ReplyDeleteThat is the million dollar question. There are two schools of thought going on. 1- Our son has a very severe Celiac case that makes him hypersensitive. That would mean he has to avoid gluten and corn forever. The rest might relax a bit as he gets older and his immune system repairs from "damage" caused by the antibiotics. 2-our son has "leaky gut" which is why he is hypersensitive and in a few years it will repair itself and he will only by gluten and corn intolerant. Either way, all the doctors think the gluten is a lifelong issue. The corn is possibly a lifelong issue. The dermatologist thinks it is going to be. While extremely frustrating, we take heart that our son is insanely healthy. He blows through his milestones and has a wonderful personality and heart. It will be a rough few years until the waters are more calm. I just hope my husband and I make it until then. I can quell most food cravings but the ease of getting something to eat on the road would be nice. I currently make EVERYTHING and pack food when we drive someplace. It gets frustrating at times but I know it is for the good. I try to be grateful because complaining about not being able to eat processed or fast food is totally a first world problem. I could be chased by cheetahs or live with drug lords. At least we have our health which in spite of it all, is really good!
ReplyDeleteSo true! The one thing that would make this situation truly unliveable is if Alton were struggling or failing to thrive. Clearly this is not the case! I hope things get easier for you soon.
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