I like to share this with breastfeeding mothers who are new to the allergy world!
Here it is :)
I’m
sure many people wonder why I continue to breastfeed my infant given
the range of foods I can no longer consume. It’s not easy but then I’m
not sure anything truly worthwhile ever is. I wanted to share our story
so far, that is the one that belongs to my daughter and I.
Our beautiful girl was born just over a year ago, while we were living overseas, after many hours of labour that resulted in an emergency caesarian. On her second night in hospital, the night nurse, frustrated perhaps at my regular bell ringing while she had a full ward to oversee on her own, gruffly suggested I give her formula to help her sleep. I wanted to exclusively breastfeed for six months, but at that point – exhausted, sore and vulnerable – I said okay. She showed me how to use a bottle, and my little girl hungrily guzzled 10mls of standard formula then promptly fell asleep. The next day my milk came in and for the rest of our stay, the other nurses encouraged lots of nursing especially to help her jaundice clear.
After we bought her home, I realised how committed I was to breastfeeding – not really having thought too much of it beforehand. I loved watching her grow and the constant physical closeness. While it certainly wasn’t easy, it took me ages to get the hang of latching and positioning her against my large breasts and the right side hurt like hell for several weeks, but I persevered and grew more confident.
When she was maybe a month old, my husband and I noticed that her skin was very dry, especially on her torso and face. Our midwife told us this was normal as her skin adjusted to being outside the womb. We tried all sorts of oils and creams but nothing worked for more than a day or two. Our daughter was alert and happy, putting on weight and sleeping well so we kept up the moisturising while we waited for her to grow out of it.
Halfway during her fourth month, we moved back home to Auckland and straight away I took her to Plunket to get her weighed as she hadn’t felt like she had grown much. The first clue that something was up was when she hadn’t put on any weight since we left Australia, but we explained it away by saying she could have been unsettled with the traveling as well as the different weighing methods. Around the same time I saw a GP for her skin and was prescribed a stronger strength steroid cream. I mentioned the possibility of a food allergy causing her eczema and was told not to be silly – this was just something some babies had. However, it wasn’t enough to shake an overwhelming instinct that I was beginning to feel, that every time I was feeding my daughter I was poisoning her – a sobering thought when feeding your child every one to three hours. I found a new GP and luckily she agreed to run the RAST blood tests which would identify and measure the levels of IgE antibodies in her blood. These are the proteins made by the immune system associated with allergic reactions.
I no longer got comments from strangers on how beautiful my daughter was, and even friends looked a little dubious. As a mother does, I just saw my lovely baby, but looking back at photos now I see she was strong but thin with a large head, the skinniest legs and arms, swollen lymph nodes, cradle cap and weeping eczema on her cheeks.
Her test results came through on the same day we weighed her again to find she had lost 400g, a sign that something was wrong. She had dropped from around the 25th to the 3rd percentile within 6 weeks and was deemed Failure to Thrive.
The RAST results showed that she was severely allergic to dairy, eggs and peanuts (as well as cats and dogs). A food allergy is basically when the immune system overreacts to the protein in that food. Reactions can range from eczema to digestive issues to anaphylaxis, a potentially fatal systemic shutdown of the body if not treated immediately.
We saw a private specialist, one of the best. He wanted me to stop breastfeeding, to accept the best thing was to put her on an hypoallergenic formula called Neocate and bring her weight up quickly. I didn’t agree but then he suggested that I was likely in the 1% of women who just couldn’t produce sufficient quality breast milk to nourish and grow my child. He also asked if my daughter was exclusively breastfed. At first I said yes, then I remembered and corrected myself, actually she had a very small amount of formula at two days of age. This was when I found out that he had seen a pattern with his young patients – many had received formula early and while it may be coincidence, there may also be something in it. Well, talk about guilt! I spent several days kicking myself for going against my original decision, and vowing to do what I could to help my daughter given I felt responsible for causing it. This was my first defining moment as a breastfeeding mother I think.
The same day we saw a registered dietitian. Again she pushed Neocate onto us, and told me I needed to get her “hooked”. I protested but she told me I could look at re-establishing breastfeeding in a few months time, we just needed to get my daughter’s weight up first. So I left their offices that day with an agreement. I had two weeks to try it my way. If by the end of this time she hadn’t put on 700 grams, I would wean her onto Neocate.
Immediately I cut out the offending foods from my diet and spent literally hours on the internet while baby slept, reading hundreds of articles. Not only did I have to avoid what we knew she was allergic to, but also soy and fish/seafood to reduce the risk my daughter would become sensitized to those also.
After a few days of soul searching and speaking to Plunket, I decided to defer to what everyone had been telling me and give my daughter top-ups of Neocate so that she would put on weight. Everyone seemed happy at my decision to mix feed and she hungrily drank the bottles. My husband supported me no matter what I decided, but he also seemed happy he now had the opportunity to feed her as well from time to time.
Over the next six weeks I started giving her more and more formula until she was up to three bottles a day, our breastfeeds becoming quicker and shorter and it felt like a slippery slope. I had a good hunch that breastfeeding an allergic child was the best thing to do for her, but it wasn’t until I decided to follow up on something I had read online that something changed. I had read about an alternative diet based around eating foods that would heal our guts, but to be really effective we’d have to ditch the formula. So after a few weeks, I did that – phasing out the Neocate by replacing it with bottles of mineral-rich chicken bone broth for her to sip on while also nursing as much as possible and trying to increase my supply.
Since then our whole lifestyle has changed considerably. I didn’t (and still don’t) consume any foods that contains milk products, eggs, peanuts, tree nuts, soy, gluten, shellfish, most fish and many grains. I contacted LLL to get advice and a few more hundreds of articles. It wasn’t just about cutting foods out, it was also about working out what foods and supplements we should incorporate. I ditched the dietitian after two sessions of not feeling listened to, and decided to work with a traditional foods nutritionist who educated me on the power of real food and who kept me motivated when it all just felt like too much work. Now instead of eating out, I have become somewhat of a kitchen maestro spending countless hours every week researching, shopping and preparing food. It prevents me from going back to paid employment work any time soon, but that’s okay – I have the best job in the world right now.
You have to be committed, courageous and tough to do this, you can no longer eat many of the foods you’ve merrily enjoyed for years. There is no just one bite of chocolate or one little peanut. And while I don’t generally miss the way I used to eat, some days I could weep with longing for a softly poached egg served with fresh bread and butter. That’s not to say occasionally accidents don’t happen. Many people don’t understand allergies or how serious they can be. We recently went to a local cafe for breakfast and carefully explained to our server what things my meal couldn’t contain. We know many cafes are great and willing to oblige, however despite nodding and saying reassuring things, we found out later she decided not to write anything on the docket that went into the kitchen. My meal came out with a gorgeous little pile of pan-fried mushrooms. It was only after I had one or two bites that I realized it was cream dripping from those mushrooms and dairy is my daughter’s highest scoring allergy. Suffice to say, we had a lengthy conversation with the manager and our meals were left uneaten.
It took many months for my daughter’s skin to become soft and supple. It also took some time for us to accept our new reality. Some days are better than others. The reality of raising an allergic baby in today’s frantic world where so much of our food is based around convenience and profit, and constantly trying to explain this to others without sounding paranoid is difficult and sometimes lonely. A big part of me is also still angry that I received little support to keep breastfeeding… and yet another part is grateful for everything I have learnt about nutrition and health since.
At one year of age, my daughter is no longer underweight. In fact we weighed her earlier this week and she has just reached the 50th percentile in both height and weight for the first time ever. She has a willful, strong personality and loves feeding herself with the food I lovingly make for her and exploring different textures and tastes.
Her second lot of blood tests late last year showed a significant reduction in all three allergies however they all still fall in the moderate to severe categories. Her specialist knows that we are no longer using Neocate and he reserves his opinion other than to say the changes in results we saw in such a short time frame doesn’t happen often. I don’t plan on stopping breastfeeding any time soon and am grateful that for us, we have that option. I know of many babies who truly needed hypoallergenic formula to be healthy, and I’m glad we also had that option available to us.
Our journey isn’t over yet, we still have a long way to go. I have become a staunch supporter of breastfeeding and would love to see more support and education for it general. I plan on studying more about nutrition and natural health, and one day hope to work with other parents of allergic children to let them know that they have options, and they have support.
Our beautiful girl was born just over a year ago, while we were living overseas, after many hours of labour that resulted in an emergency caesarian. On her second night in hospital, the night nurse, frustrated perhaps at my regular bell ringing while she had a full ward to oversee on her own, gruffly suggested I give her formula to help her sleep. I wanted to exclusively breastfeed for six months, but at that point – exhausted, sore and vulnerable – I said okay. She showed me how to use a bottle, and my little girl hungrily guzzled 10mls of standard formula then promptly fell asleep. The next day my milk came in and for the rest of our stay, the other nurses encouraged lots of nursing especially to help her jaundice clear.
After we bought her home, I realised how committed I was to breastfeeding – not really having thought too much of it beforehand. I loved watching her grow and the constant physical closeness. While it certainly wasn’t easy, it took me ages to get the hang of latching and positioning her against my large breasts and the right side hurt like hell for several weeks, but I persevered and grew more confident.
When she was maybe a month old, my husband and I noticed that her skin was very dry, especially on her torso and face. Our midwife told us this was normal as her skin adjusted to being outside the womb. We tried all sorts of oils and creams but nothing worked for more than a day or two. Our daughter was alert and happy, putting on weight and sleeping well so we kept up the moisturising while we waited for her to grow out of it.
Halfway during her fourth month, we moved back home to Auckland and straight away I took her to Plunket to get her weighed as she hadn’t felt like she had grown much. The first clue that something was up was when she hadn’t put on any weight since we left Australia, but we explained it away by saying she could have been unsettled with the traveling as well as the different weighing methods. Around the same time I saw a GP for her skin and was prescribed a stronger strength steroid cream. I mentioned the possibility of a food allergy causing her eczema and was told not to be silly – this was just something some babies had. However, it wasn’t enough to shake an overwhelming instinct that I was beginning to feel, that every time I was feeding my daughter I was poisoning her – a sobering thought when feeding your child every one to three hours. I found a new GP and luckily she agreed to run the RAST blood tests which would identify and measure the levels of IgE antibodies in her blood. These are the proteins made by the immune system associated with allergic reactions.
I no longer got comments from strangers on how beautiful my daughter was, and even friends looked a little dubious. As a mother does, I just saw my lovely baby, but looking back at photos now I see she was strong but thin with a large head, the skinniest legs and arms, swollen lymph nodes, cradle cap and weeping eczema on her cheeks.
Her test results came through on the same day we weighed her again to find she had lost 400g, a sign that something was wrong. She had dropped from around the 25th to the 3rd percentile within 6 weeks and was deemed Failure to Thrive.
The RAST results showed that she was severely allergic to dairy, eggs and peanuts (as well as cats and dogs). A food allergy is basically when the immune system overreacts to the protein in that food. Reactions can range from eczema to digestive issues to anaphylaxis, a potentially fatal systemic shutdown of the body if not treated immediately.
We saw a private specialist, one of the best. He wanted me to stop breastfeeding, to accept the best thing was to put her on an hypoallergenic formula called Neocate and bring her weight up quickly. I didn’t agree but then he suggested that I was likely in the 1% of women who just couldn’t produce sufficient quality breast milk to nourish and grow my child. He also asked if my daughter was exclusively breastfed. At first I said yes, then I remembered and corrected myself, actually she had a very small amount of formula at two days of age. This was when I found out that he had seen a pattern with his young patients – many had received formula early and while it may be coincidence, there may also be something in it. Well, talk about guilt! I spent several days kicking myself for going against my original decision, and vowing to do what I could to help my daughter given I felt responsible for causing it. This was my first defining moment as a breastfeeding mother I think.
The same day we saw a registered dietitian. Again she pushed Neocate onto us, and told me I needed to get her “hooked”. I protested but she told me I could look at re-establishing breastfeeding in a few months time, we just needed to get my daughter’s weight up first. So I left their offices that day with an agreement. I had two weeks to try it my way. If by the end of this time she hadn’t put on 700 grams, I would wean her onto Neocate.
Immediately I cut out the offending foods from my diet and spent literally hours on the internet while baby slept, reading hundreds of articles. Not only did I have to avoid what we knew she was allergic to, but also soy and fish/seafood to reduce the risk my daughter would become sensitized to those also.
After a few days of soul searching and speaking to Plunket, I decided to defer to what everyone had been telling me and give my daughter top-ups of Neocate so that she would put on weight. Everyone seemed happy at my decision to mix feed and she hungrily drank the bottles. My husband supported me no matter what I decided, but he also seemed happy he now had the opportunity to feed her as well from time to time.
Over the next six weeks I started giving her more and more formula until she was up to three bottles a day, our breastfeeds becoming quicker and shorter and it felt like a slippery slope. I had a good hunch that breastfeeding an allergic child was the best thing to do for her, but it wasn’t until I decided to follow up on something I had read online that something changed. I had read about an alternative diet based around eating foods that would heal our guts, but to be really effective we’d have to ditch the formula. So after a few weeks, I did that – phasing out the Neocate by replacing it with bottles of mineral-rich chicken bone broth for her to sip on while also nursing as much as possible and trying to increase my supply.
Since then our whole lifestyle has changed considerably. I didn’t (and still don’t) consume any foods that contains milk products, eggs, peanuts, tree nuts, soy, gluten, shellfish, most fish and many grains. I contacted LLL to get advice and a few more hundreds of articles. It wasn’t just about cutting foods out, it was also about working out what foods and supplements we should incorporate. I ditched the dietitian after two sessions of not feeling listened to, and decided to work with a traditional foods nutritionist who educated me on the power of real food and who kept me motivated when it all just felt like too much work. Now instead of eating out, I have become somewhat of a kitchen maestro spending countless hours every week researching, shopping and preparing food. It prevents me from going back to paid employment work any time soon, but that’s okay – I have the best job in the world right now.
You have to be committed, courageous and tough to do this, you can no longer eat many of the foods you’ve merrily enjoyed for years. There is no just one bite of chocolate or one little peanut. And while I don’t generally miss the way I used to eat, some days I could weep with longing for a softly poached egg served with fresh bread and butter. That’s not to say occasionally accidents don’t happen. Many people don’t understand allergies or how serious they can be. We recently went to a local cafe for breakfast and carefully explained to our server what things my meal couldn’t contain. We know many cafes are great and willing to oblige, however despite nodding and saying reassuring things, we found out later she decided not to write anything on the docket that went into the kitchen. My meal came out with a gorgeous little pile of pan-fried mushrooms. It was only after I had one or two bites that I realized it was cream dripping from those mushrooms and dairy is my daughter’s highest scoring allergy. Suffice to say, we had a lengthy conversation with the manager and our meals were left uneaten.
It took many months for my daughter’s skin to become soft and supple. It also took some time for us to accept our new reality. Some days are better than others. The reality of raising an allergic baby in today’s frantic world where so much of our food is based around convenience and profit, and constantly trying to explain this to others without sounding paranoid is difficult and sometimes lonely. A big part of me is also still angry that I received little support to keep breastfeeding… and yet another part is grateful for everything I have learnt about nutrition and health since.
At one year of age, my daughter is no longer underweight. In fact we weighed her earlier this week and she has just reached the 50th percentile in both height and weight for the first time ever. She has a willful, strong personality and loves feeding herself with the food I lovingly make for her and exploring different textures and tastes.
Her second lot of blood tests late last year showed a significant reduction in all three allergies however they all still fall in the moderate to severe categories. Her specialist knows that we are no longer using Neocate and he reserves his opinion other than to say the changes in results we saw in such a short time frame doesn’t happen often. I don’t plan on stopping breastfeeding any time soon and am grateful that for us, we have that option. I know of many babies who truly needed hypoallergenic formula to be healthy, and I’m glad we also had that option available to us.
Our journey isn’t over yet, we still have a long way to go. I have become a staunch supporter of breastfeeding and would love to see more support and education for it general. I plan on studying more about nutrition and natural health, and one day hope to work with other parents of allergic children to let them know that they have options, and they have support.
We also had a highly allergic baby and at 4 months, after seeing an Auckland allergy specialist, I was told that Neocate was the only thing that would help. I also suggested that I would cut out all the foods she was allergic to and got told that it was not a good idea as there was no way to know how many foods she was allergic to.
Tearfully we had one last breastfeed when we got home and then switched her onto formula. Within 3 days her skin was remarkable clearer.
She is now 14months old and is allergic to wheat, gluten, eggs, dairy, peanuts, soy, rice, some vegetables, cats. Part of me wishes we had persisted with the breastfeeding regardless of specialist recommendations, perhaps with somewhere to find support for breastfeeding with food allergies it would have been possible to continue. She also had formula within the first month, I wonder if its related.