Thursday, January 16, 2014

The reality of having a child with allergies

Sound asleep in my bed I woke to her crying. It was only 5am and not her usual wake up time so in my delirious state I assumed she just wanted her dummy to go back to sleep. Then I realised the crying was different. It wasn't a high pitched demanding cry, it was a quieter whimpering. It was a sad, help me cry. I picked her up and took her over to my bed and turned on the light. That's when I realised it was happening again.

She was having another choking episode. It can happen at any time, but night time is always scarier. When it happens I feel helpless. All I can do is get her upright and pat her on the back to try and loosen up her airways enough for her to breathe. Other than that we just have to ride it out. It can go on for up to half an hour. The whole time I am rocking, patting and hugging her I have to remain calm on the outside and keep reassuring her it will be ok. Its hard to do while watching your baby so helpless, red faced and struggling. The look in her eyes is so heartbreaking, its the look of complete fear. While I remain calm on the outside so I don't get her any more worked up, on the inside I am broken. There is always that fleeting moment where I contemplate is this it? Will this be the last time I hold my baby? I have to quickly push that thought aside so I can focus on helping her. After the choking is over there is always a period where she is very lethargic and goes floppy, reacts slower and tries to work out what just happened. Once she realises she is safe she normally falls asleep. I imagine she is completely exhausted after struggling to breathe. I always cuddle her for much longer than needed at this point. I need the physical closeness to emotionally heal after such a traumatic experience.

This is not the only reaction she has from her allergies, but it is by far the scariest. What happens is thick mucus starts coming up her throat and nose and she can't breathe. If she is lying down its worse and will result in complete choking. The choking itself is silent, so I'm glad she managed to get out a cry and wake me up this time. Unless you are looking directly at her and can see her face go bright red and her struggling, you wouldn't even know she was choking. Needless to say I didn't really go back to sleep after this happened.

As a mother my biggest fear is that something will happen to my child. I'm sure many other mothers can relate. Unfortunately because of her allergies I am forced to face my fear on an almost daily basis. The more I go through it the more I learn to deal with it. I know what to do during these episodes so I don't freak out as much as I did before, but it doesn't make it any less heartbreaking watching my baby choking. We have been hospitalised for it before.

She has a cows milk protein allergy and also a soy allergy. If she has any of the protein she breaks out in red spots (which she gets every feed) and they turn into a rash and then full blown eczema the more she is exposed. She also gets extremely dry skin that means cradle cap treatment every day as well as hair washing. She also has extremely sensitive skin and reacts with hives and red patches easily. She has reacted to different bath washes, moisturisers and even olive oil (which I tried for the cradle cap).

Her allergies mean we have had to be very careful with everything that comes in contact with her skin. I use sensitive washing detergent and have gone organic with some products and am in the process of trying out more organic products as it appears the allergies will be sticking around for quite a while. Most children with cmpa will grow out of it by 1, but we have been told she might not grow out of it until 2-5 years old (if she does indeed grow out of it).

Of course her food is most affected by the allergies. It meant the end of our breastfeeding journey and going through a series of different prescription formulas to find the right one. We are trying a new one this week as she is still reacting to them. Each time I am sitting in a mothers room feeding her a bottle and I feel the breastfeeding mother next to me giving me dagger eyes I want to yell at them that she has allergies and its more healthy for her to have specialised formula. I didn't want to stop breastfeeding. If she didn't have such a bad reaction to my breast milk I would still be doing it now. I loved the bond I had with her that only a breastfeeding mother knows and I still mourn the fact that I can't do it. So to sit in the room with a stranger and feel the judgement being flung in my direction just adds salt to my wounds. Not only do I have to deal with all of these symptoms and reactions, I also have to deal with judgement from people who come into my life for a few minutes and then walk out again. Giving me condescending looks or deliberately talking loudly about how they are feeding their baby because they want to make sure I know that they disapprove of my decision to give my baby formula. They assume I am taking the easy way out instead of the best option for my baby, when I am actually doing what's best for my baby by giving her body the best chance to eat without having an extremely painful reaction.

These are all the things that my daughter and I have to deal with on a daily basis. To all of those people who say that allergies are not real and that they are just made up excuses for when people don't like a certain food, I invite you to walk a day in my shoes. I wonder if your child had an allergy if you would dismiss it and be so judgemental. I imagine most people would do what is best for their child, just like me. It would be nice if people would think about these things before they judge others.




By the way I am not pro anything when it comes to parenting, except doing what you feel is best for your child.


Toni


Linking up with Tegan and Grace

32 comments:

  1. That must be terrifying/demanding/difficult etc etc... Poor sweetie. I hope things ease as your baby grows up. I don't know much about allergies but I've heard that some can subside with age.
    You're doing great because you're doing the best thing for your child. Don't take ny notice of people who judge you. X

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    1. Yes I have my fingers crossed she will grow out of it as she gets older.

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  2. How completely unfun. And then throwing people's scepticism at the reality of allergies on top. Bleeurgh. Yuck.

    Keep doing your thing. I hope it gets easier.

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  3. Oh honey :( I feel your pain, my oldest had cows milk protein, soy, egg and peanut allergies as a babe and I also had to give up breastfeeding as a result. The good news for us is that while she still suffers with eczema, she outgrew the food allergies by the time she was four so I really hope your little one is as lucky xx

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    1. We are just starting solids next week so we shall soon find out if she has any other allergies. I hope we are lucky and she grows out of it.

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  4. One of my friends son is allergic to the protein in dairy, soy and beef. I couldn't even begin to imagine the struggles you and my friend go through everyday. She has started a support group on Facebook (I'll send the link to you) for other mothers with kids with the same allergies. I know she has had issues with her sons daycare not believing that he does have allergies and dismissing them as her being over protective. I hope that your little one will grow out of the allergies.

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    1. Oh and thank you for linking up with us at The Lounge!

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    2. I've heard they are likely to be allergic to beef, wheat, eggs and corn because of the proteins. We will soon find out if that is the case for us.

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  5. Oh Toni, you must have this in the back of your mind constantly! Allergies are such an unknown, and everyone would react differently with different symptoms etc. I just pray she does grow out of this as soon as possible!

    And those stinking Mums with their judgemental looks can just go sit on a porcupine! Biaatches.. People can be so unfeeling and cruel, and even though YOU know you are doing the best you can for Hayley I can imagine it is so hurtful, you can't help taking it to heart. xo

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    1. Yea some people are just shit! I just avoid eye contact and stare at her instead x

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  6. Oh my gosh, the poor love and poor you. It sounds extremely scary. Good on you for remaining so calm and strong. Sending hugs to you x

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    1. The first big choking episode (when we stayed in hospital after) I wasn't very calm! But, I've learned to control myself a lot since then. Its weird that these episodes just seem 'normal' to me now.

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  7. I'm sorry to hear about all these allergies your little girl has. All you can do is to keep trying different foods/products until you find the one that works well for her. Have you ever thought about dust mites in the house? Because some people react to them and these dust mites can also get in the mattress, so hoovering the mattress every now and again and changing the pillow cases often, might help to eliminate them. Just a thought.

    Please don't ever worry what other people think about you not breast-feeding. They're not in your position, and have no idea what goes on in your world. Ignore them, otherwise it will drive you mad. Just concentrate on getting your little girl the right treatments and showering her with all your love.

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    1. I wash her sheets often, but I will have to vacuum the mattress. Dust mites aren't anything to do with these symptoms, but I do have asthma myself so it won't hurt to be extra careful for her too just incase we have to deal with that too as she gets older.

      I agree, I do need to stop worrying about what other people think.

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  8. Oh Toni, how scary for you all. I hope you can find the right product which won't cause a reaction for your sweet little girl. I HATE the judgemental looks and comments from others…. My big boy was bottle fed from 5 months and I felt I needed to justify the reason why every time someone made a comment or gave me a look. I wholeheartedly agree with your final comment - we need to be pro what is right for our child as well as us xxx

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    1. I wish everyone would just stop judging each other then we wouldn't feel like we need to justify every decision we make as parents, but at the same time I know that will never happen.

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  9. That must be so scary :( Make sure you give yourself rest after those allergy attacks too, it must be hard on you.

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    1. My rest is the long cuddle after :)

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  10. It must be so frightening! When I was little I had a rather severe allergy to blackberries and blueberries, which are very easy to avoid even though they are in some surprising things, and I've grown out of those allergies anyhow. I can't begin t imagine how hard it must be for you! x

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    1. We are starting solids as of this week and I have a massive list of foods to avoid. I'm just going to make all her food myself, otherwise its too risky. Hopefully she grows out of it before she's at the age of eating out, because that will be a nightmare.

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  11. How scary for you. You poor thing. I can't even imagine going through that, regularly. You write so well and sound so 'calm' - I would be a screaming lunatic! Fingers crossed it gets much better and easier as she gets older xx

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    1. Part of me still wants to be a screaming lunatic each time it happens, but the rush of adrenaline I get seems to help me focus on what I need to do to fix the situation, rather than me just panicking.

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  12. You are an awesome mum and are doing an awesome job xx

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  13. Hi Toni, my daughter was anaphylactic to eggs and had a wheat intolerance. She grew out of the egg allergy at around 3, though eggs still give her an upset tummy when we feed them to her. The wheat intolerance seems to be going too. Wishing you all the best that your gorgeous girl grows out of her allergies too. p.s most doctors thought I was a nutter thinking my child had a wheat intolerance – so always do what you think is best xox

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    1. The drs always treat us like we are crazy right? Don't they learn these things at university, I don't get it. Mums always know best :)

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  14. Oh gosh, are there really people out there that say allergies aren't real? That's disgusting, what's wrong with some people. I hope you're little one is doing Ok.

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    1. Funnily enough just after I finished writing this post a story came on ACA about allergies and there were people on there saying how allergies are fake and people just need to get over it and learn to eat stuff. WTF. Of course it was older people saying these things, similar to the "In my day we never had that" arguments.

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  15. So very scary and so not nice to be judged by other Mothers - its not nice when others who don't know you think they can say what's best for you and your family.
    My oldest had sleep apnea as a baby - he had a breathing machine that would let me know when he stopped breathing when he was asleep - so very glad those days are long gone and he is now a young man with his own life.
    Hope you get the right formula for her asap, and that all works out. Wishing you well, and hope the choking stops soon xxx

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  16. You poor thing. That is super scary. My son is also allergic to the cows milk protein. When I stopped breastfeeding I used goats milk formula but he still had his eczema then. It wasn't until I stopped the dairy altogether at 1 that it actually went away. He is now 2.5 years old and only ever gets breakouts when something sneaks into his diet too regularly (usually biscuits at mothers group or something at daycare - I just found out they were using Canola spread on his toast thinking it is dairy free). It really isn't that difficult for food once you do your research and get used to using replacements. We use Nutlex for butter (it is vegan so dairy free) and he drinks Oat Milk or the protein enriched rice milk for his milk. We use Vitasoy brand only as it is properly fortified with calcium and approved by the paediatrician. There is a great facebook page and website called Cut out the Crap. She has recipe books, one is called Cut Out the Crap for Kids, that are full of dairy, gluten and preservative free recipes. I highly recommend it. I can always tell when my little Monkey has been getting too many sneaky snacks with dairy as he breaks out again. As soon as I get strict on the diet again it clear right up. Good luck with it all. And if you have any questions feel free to let me know. Those choking episodes must just about stop your heart. Cheers Rachael

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