DECEMBER 26-JANUARY 8
Quite frankly, I was in a major funk these days. I was putting all my energy into still being my happy self in front of my son; however, I was an absolute mess when he was not around. A lot happened during these two weeks…
- We took my son to have allergy testing through blood work. We saw an excellent guy who was able to get a lot of blood. When these results came back, it was confirmed. Now. my son was allergic to OAT and BARLEY in addition to the skin tested allergens of WHEAT, PEANUTS, TREE NUTS, DAIRY, and EGGS. Therefore, I cut out the few items that I was eating with oat in them.
- I also realized that my favorite dairy-free creamer for my coffee was not dairy free so I cut it out. I cried.
- I then realized that I should not be eating tootsie roll lollipops everyday like I had been doing when I pumped. (It was my daily treat twice a day…I never liked chocolate much before being pregnant.) However, it contains milk so I cut these out too and yes, I cried. It sounds silly what I was crying about. I think I just kept feeling like more and more food that I enjoyed were being taken away. And even worse, I felt like I had been hurting my son for so many months and had no clue. (While no one can confirm this,I now think differently. I truly believe that I helped him during those 7.5 months of breastfeeding before my elimination diet started.)
- I met with Nutritionist #1. She basically told me that I may have celiacs disease which I definitely do not. However, I kindly took all of her materials and thanked her for her advice. She did tell me that I could eat goat cheese. However, my allergist soon told me that was not the case.
- I met with an orthopedic for a severe pain in my left thumb/wrist. I had read about what I thought I had, “Mommy Thumb.” Sure enough, doctor confirmed this and told me that I needed a cortisone shot in the area. A few days after the shot, the pain went away for three weeks. But, then came back even worse. However, in February at some point it completely vanished out of nowhere. One morning I woke up and it was gone.
- I found a lump on my right breast. I freaked out. I went to my gynecologist office twice about it and called about four times. Yes, I do sound crazy and I am sure that they thought I was too. At the first visit, I was told it was a torn muscle. Then, a day later as the pain got worse, the doctor told me that it was a clogged milk duct and called in a medication for me if it got infected. However, I never went to get it. Lots of massaging, pumping, and nursing did the job.
- During these two weeks, I was definitely depressed. I truly thought that everything was falling apart, that I had messed up everything, and that there was nothing that I sensed impending doom. Since I have experienced a couple of time in my life where I suffered from depression and anxiety, I knew that this was what it was. However, I needed to stop it. I had to for my son. I had to take care of myself for him. I just couldn’t figure out how to do this. One day I caught myself obsessing over how much I was eating, measuring and remeasuring my food. While I had never stopped counting calories and measuring food, I had not limited myself in close to 20 years. I recognized some of these behaviors that I was doing as the start of an eating problem again. Yet, I could not stop. My life seemed to be out of my control and this was one thing that I could control. I was losing a couple more pounds with this new diet. I probably needed to add more calories because of the way that my body was metabolizing this rather healthy elimination diet. In fact, I was having dizzy spells too.
- Because of a lingering cold, I went to my actual doctor and had blood work done to make sure that I was not deficient in any areas. I was falling apart quicker than I could catch myself. Yet, I felt like I was doing something right. Even if I was failing at everything else, I made my son smile on…
ON JANUARY 3, I posted this to my breastfeeding friends:
Happy New Year everyone!
So, I apologize in advance if this is a bit wordy and I think I just to write/think out my thoughts of the past 3 weeks. ( I hope that’s okay and seriously just skip over if it’s too much.) I feel like I’m trying to solve a mystery right now.
First of all, like many of the other babies, my son has been sick since Tuesday night with some kind of viral infection according to the doc we saw on Wednesday. ( I hope all the other cuties are feeling better. His fever finally started to come down today.)
December 13- allergic reaction to yogurt sends us to the ER
December 15- skin allergy test determines he is allergic to wheat, dairy, eggs, tree nuts as peanuts. I am instructed to cut out all of those allergens from my diet minus cooked cheese. However, he has never had a direct reaction from me after feeding. Stockpile is okay to use as well.
– brought to doctor because his eye was crusty and was told he had double pink eye and an ear infection.
– oh and this doc begins to make jokes about me causing allergies …” What did mommy eat or didn’t eat during pregnancy “- yup not funny especially since I eat soooo healthy during pregnancy.
-I picked him up early at day care and when I walked in he was happily chilling on a swing scratching his hive- filled face after eating a jar of earth’s best apple first cranberry
-bring him to our new pediatrician who I now loooove…. She tells me he has ear infection and to continue Amoxicillin but he doesn’t have pink eye. She herself experienced breastfeeding on an elimination diet because her daughter had a ton of allergies and she outgrew them. She sends us back to allergist who does a skin test on him to test for the other grains.( oat, barley, potato,etc.) The jar he reacted to had oats. He informs us that he is not allergic to any of those based on skin test. However, he wants blood work.
December 24- I get a phone call from allergist that I need to strictly eliminate all egg, wheat, dairy, tree nuts, peanuts from my diet and do not use stockpile or I need to start formula ( he can only have two types and one is a soy based one.) Merry Christmas Eve to me ha – no Polish pierogies for me
December 30- some hives at night and a minor rash on belly – we worry it’s a side effect or reaction to amoxicillin so we make an appointment
December 31- we see a doctor who says he doesn’t think it is but it may be a minor reaction to amoxicillin so to stop it and that he has a viral infection -102 fever starts and random hives here and there
– 102 fever continues
– I receive 13 emails regarding his blood work – it appears that he is also allergic to oats and barley despite the skin test and I should cut out those from diet too !!! However, allergist is on vacation until January 5.
-He will not eat more than 1-1.5 ounces of solids at time and for three nights in a row will only drink 4-5 ounces of pumped milk nighttime (since two months old he drank 10 ounces at night which I know is a bit much ha) He then begins grabbing at his mouth and gums and crying. He also nursed a lot more during past three days.
January 2 – Right before bed, I notice two bulges on top gums where incisors would be.
I’ve emailed both his allergist for a plan on his allergies and how to reintroduce food back into my diet for him. However, I also said that I am now not convinced of the accuracy of the skin test given for fish, soy, peanuts, tree nuts, wheat, eggs and dairy. I mean if oats was negative on skin and high in blood…. As much as I hate getting blood work done for him, isn’t that the safest bet to have a blood test done for those initial main allergens ? Especially if I’m eating a decent amount of soy now? Is this teething? Is this a viral thing, reactions to allergies and teething ? Or is all of this just what happens with a child with allergies?
In the meantime, I have also learned of my husband having severe eczema as a baby and was allergic to eggs in addition to walnuts and fillet fish. Oh he also randomly got hives the other day too and came to me laughing ” like father like son.” Ha!
Anyways, to wrap up this rant, I had been very sad and frustrated by it all for a couple weeks. I even told my husband I thought I was becoming depressed but I kept praying and praying for guidance and a direction to take in all of this. Then, yesterday I randomly felt inspired. I now have a new outlook, I am using this time to educate myself on everything I need to know about allergies and food by taking on the diet firsthand and trying to continue breastfeeding. I have already learned so much. Most importantly, I need to be his biggest advocate. I want to ensure that we are doing whatever it takes to get him to be in good health again and have the healthiest future. Okay now I’m done for now.
He smiles on and on…
Just when I started to think that I could do this all and change everything for the better..just when I started to gain back some control over myself and life….just when I started to feel like I was indeed a good mom for my son….we end up back in an ambulance and ER.
Here is my FB post to breastfeeding friends:
We are back in the ER … my son started to gag on the way to work/daycare so I pulled over and he had a red rash all over and throat was swollen. He is fine now but I don’t know what to do anymore. I’ve cut everything he is allergic to out of my diet – I don’t understand what’s going on…
Two hours later…
We are on way home and then to allergist at 11:30. He never had a single hive until I got the darn flu shot in October. I know I may sound nuts but I am bringing it up at allergist. I agree and have been saying it all along. It seems like there is more to all of this than just allergies. But who am I? I’m praying to stay strong but I myself have been having some issues like ( dizziness, weight loss and that lump on breast which now doc told me is a clogged milk duct) This may all be anxiety but I’m just sooo worried and trying to stay strong. Like I haven’t eaten a single dairy , egg , tree nuts , wheat , oat , barley or peanut product since December 23. He has only eaten what I was advised was okay apples, bananas, sweet potatoes, squash, carrots, string beans, pears, and avocado. If it was just those allergies, there would not be random hives and reactions. Right ?
Everything is just sitting very uneasy with me. I’m posting as I sit in the car letting him nap in between the hospital and allergist. The tests showed he is not allergic to apples or sweet potatoes. Pears, avocados, and bananas were not tested. He has eaten them for 2.5 month with no problems that’s what concerns me. It seems like the more we limit his diet the more allergies arise or is there something else going on …. Of course googling things are making me nuts as well. I’m going to ask the allergist a million questions. He is definitely sick of us because we already email almost daily ha
Later that afternoon after allergist…
Allergist thinks it’s dermatographic urticaria mixed with some food allergies which is making everything more complicated. So, he has very sensitive skin and gets random hives and reactions to environmental factors in addition to some food allergies. He is going to start take Zyrtec at night – a low dosage. Then more food allergy testing will be done but testing is tricky at this age because they are so young and it’s not so accurate so he is hopeful that he will outgrow the allergies he has. We are testing for all the fruits, veggies ,and meats he eats and will be introduced to next – plus soy because I consume a lot of soy now on this elimination diet for him. Then by treating with Zyrtec, we can hopefully control random environmental hives. After my blood work and his blood work come back, I will determine if I can continue this diet for my own health. There are more serious diseases and conditions that are out there that I brought up because of all my reading online but he doesn’t think it’s those – please pray.
After blood work…
They got a lot of blood and are testing for autoimmune diseases as well. Please pray that results are negative and we just have super hyper-sensitive skin with some current food allergies.
My Friday evening consisted of gluten free pizza that my husband made for me since the gluten free pizza I was ordering from a pizzeria was using a dough that was gluten free but had milk and egg. We determined this when he got some red blotches on his face on a couple Saturday mornings when I ate this the night before. Therefore, homemade pizza it is. And of course, I barely make it until 8:30 pm before I am falling asleep. My son sleeps and smiles on…
I spent a great deal of these days trying to reduce my anxiety. I feared driving with my son now and being alone with him, worrying about every single noise he made and every red mark on his body. I worried about everything about him! I was losing my mind and I knew I needed to change it all. It was up to me to change the direction and path I was going down. This was when I told my husband something that I had not shared to anyone. I had spent my entire life counting or estimating my daily calories. In times of anxiety and stress, I counted more strictly. I was starting to do this and obsess about my weight which was getting less and less. I was now a couple pounds less than before I was pregnant. I knew it was all due to the stress of these food allergies and how out of my control they were. I wanted control over them and everywhere I turned someone had some conflicting words and advice. I needed to snap out of this….
- There was a moment when I truly snapped out of it or at least started to work toward it. I was at work and rushing around, on the verge of tears which was usual during this past month. As I rushed, I slammed my head against my classroom door near my eye. Having to go to the main office to check something, I went upstairs crying and holding my head like a crazed lunatic. The main secretary came right to me as my eye was swelling a little bit. She dragged me out of there as others questioned me. She took me to the nurse’s office, gave me ice, and sat me down. I remember in that moment feeling as though everything was just horrible. In fact, I worried that I myself was sick and dying. Looking back, it is sooo scary how anxiety can really take over your thinking process and cloud out all positivity and sense. That is when my secretary who knew of everything going on in my life said something that I will never forget. She sternly warned me, “You need to stop. You have an amazingly happy little guy who loves you and needs you. he is going to grow up so fast and you are going to waste away these times with him if you don’t just stop. Stop and enjoy that beautiful baby. He needs his mommy. You are fine. You hit your head. Go take this ice and go pick him up and enjoy him.”
Yup, that woke me up and I went to pick him up. I just needed a hit to the head, literally, to wake up….No one said this would be easy. In fact, everyone including our allergist and pediatrician basically said it will suck and most women decide it’s too hard and give formula. I want to say that I 100% respect everyone who decided that formula in this situation or any other situation was the right decision for them and their families. That is what it is what it is all about. Doing what is right for you and your family regardless of the critics. Because the reality is, there will always be critics. There will always be someone telling you that you should have done things differently, that you are not doing something right, questioning things that you yourself question. What I am learning is that there is never one correct solution. Instead, everyone’s situation and problem has too many variables to have a “right decision.” It’s been quite freeing since I have learned to truly say “whatever” in my mind when people question me.
Anyways, when I got to my son’s school he was sitting there waiting in a walker of course smiling on…
A friend shared this with me and it hit home…
My Facebook post update on my breastfeeding page…
Happy Thursday everyone! I hope everyone is having a great week.
Update: Blood work showed that my son is allergic to dairy, wheat, eggs, soy, sesame oil, peanuts, almonds, hazelnut, pistachio, oats, and barley. Allergist is hopeful he will outgrow most and will retest at 14 months.
There is only one formula he can be on so I’m continuing to breastfeed on this elimination diet for now. However, now I have a new plan and maybe I’m just annoying with all of this. But for some reason, I can’t just settle on how everything is right now. I feel like I need to learn more about how different food is transmitted through breast milk.
After speaking with another mom whose son had almost all the same allergies and outgrew all but soy so far at the age of 2, she did an elimination diet but was told by a lactation specialist that certain food is okay to still eat in her diet because of the way the body metabolizes it before the baby gets it. And he has outgrown almost all allergies and he is only 2.5.Therefore, the next step/thing that I want to do is to find and speak with someone who specializes in this. Does anyone have any ideas?
- This is how I received contact information for another mom who was also a pediatrician. Two of her four children have food allergies.
- I also was reminded of another dietician/nutritionist who also did an elimination diet herself years ago. I contacted her and set up an appointment.
I too, like my son, began to smile on…
Today, I met with who we will call Nutritionist #2. I loved everything she had to say and suggest. She told me that I could and should add several things to my diet such as chick peas, Plant Fusion protein shakes, goat cheese (Again I became excited with the goat cheese until my allergist shot it down.) She also told me that I should be eating an avocado a day. I will post a weekly diet of food and meals that work for me and snacks that are allergen free that I personally think are delicious. I loved that she confidently said when I first walked in, “this is how your son is going to outgrow his allergies.” She suggested that I take a powder prenatal vitamin instead of a pill. Also, she told me that my son should start a probiotic that she highly recommended. So, you know when I got home I ordered both. Unfortunately, even before the probiotic arrived, something made my husband look up the ingredients with me and sure enough, MILK WAS IN IT! I got frustrated at first but only for a few minutes. Then, I just thought about how the probiotic thing was a common denominator across several doctors, nutritionists, and mothers. Therefore, that was definitely something we needed to start in order to build up his good bacteria.. However, the dairy-free version probiotic would be what we used. Of course, as I continued my research, he smiled on…