Living with multiple allergies

I didn’t think of Ava as having multiple allergies till the Paediatrician said the phrase in conversation “your daughter has multiple allergies” Saying and hearing the term multiple allergies sounded much worse than it was in my head. It hit me, this sudden realisation that we were dealing with something much larger than we had initially thought.

11190713_824679604273575_1518136603_n

I had maybe naively thought she would just have cows milk protein allergy, like her eldest brother. When we discovered she was also reacting to the soya in my milk through my diet I panicked. It’s in so much, how was I going to do it?

By the time it came to weaning we thought we had it under control. I had got my head around the no soya and no dairy in my diet and we started weaning thinking it would just be the same for Ava. Looking back a nasty reaction to a plaster after her immunisations might have been a clue that things weren’t going to be so easy, I say easy, no soya and no dairy is hard enough, believe me! We started slowly, very slowly with a new vegetable for 3 days and once we had built up to a few we could mix them. The idea being that she only has one new food at a time so that if she reacts then we can tell what it is that has caused the reaction.

We stumbled upon her third food allergy through letting her lick and suck on a strawberry. 2-3 hours of inconsolable crying, a rock hard stomach and a rash that started around her mouth and spread down her body confirmed a reaction. Similar happens when she has had banana and peach. The rash stays for days and turns to sore dry eczema which is heartbreaking to see on her face.

After another visit to the Dietician where we had been told to avoid all high allergen foods, no nuts of any kind, no fish, no tropical fruits, no egg, no legumes and nothing from the latex food family, we are feeling a little overwhelmed. What can we give her? What is safe? She had a tiny bit of something when we were out that we thought was ok, not even thinking about the egg it contained as we knew it was dairy and soya free. Within 10 minutes she was sick and then we noticed her finally clear (after weeks of being sore) face starting to get the tell tale rash. On the way back in the car I noticed her lips looked puffy and she was chewing on her tongue in a funny way, it was also swollen. When we got home we gave her piriton which seemed to stop the swelling from getting any worse. A trip to A&E didn’t really give us any answers other than it was good it hadn’t affected her breathing and to totally avoid all egg.

I don’t feel like I can talk to people about it. I don’t want to seem like I’m being dramatic, or that its all I talk about but it’s such a big part of our lives right now. I know that people live with allergies and have children with allergies and severe allergies and I feel like what we are dealing with, to some (especially on the allergy forums where you think you would be in good comapny) isn’t a big deal. To us it is and so I’ve turned to here, my space to try and clear my head and say outloud some of the nagging doubts and questions that I have.

  • Will any of her allergies will be life threatening?
  • Have we have discovered all her allergies or will she be allergic to other things she hasn’t had yet?
  • I feel sorry for her having such a limited diet, even though she knows no different.
  • I’m worried about her having a serious anaphylaptic reaction.
  • I’m worried about keeping her safe.
  • I don’t like that she cant tell us if she is uncomfortable or in pain.
  • I’m unsure of what to give her and when she tries something new my heart is in my throat watching and waiting.
  • I don’t like how we haven’t been given any answers and how you are left to your own devices with a tiny shred of advice.
  • We know she will have allergy tests and hoping they are being moved forwards, but they are currently months away.
  • At the moment she only has foods we give her but it wont be long before she can get hold of other foods.
  • Play areas and parties are going to be a nightmare.
  • I’m worried about her getting enough of the right nutrients to grow properly
  • With all the new allergies coming to light I’m unsure of what and how much I need to cut out of my diet.
  • She wont drink the hypoallergenic formula she has been prescribed.
  • Will she grow out of her allergies?
  • Will we need and epipen?
  • I’m worried about if and when she goes to childcare and how they will manage it.

So that’s where we are today. We have a baby, a beautiful, perfect in her own way baby with multiple allergies.

The Twinkle Diaries
The Dad Network
Modern Dad Pages
Follow:

19 Comments

  1. Donna Bubear
    May 5, 2015 / 10:44 am

    I felt your pain i was in your position 4 years ago with a child that seem to react to so much. It is scary and so worrying. I remember at the time thinking will my daughter ever have a normal life..? Well for us the answer has been yes. She may have multiple allergies but she is at last a happy and healthy thriving 4 year old.

    We do have to be careful with what she eats, restaurants, parties and play dates can be a nightmare but it is getting easier. Erin knows her biggest allergies and always asks an adult before eating any food anywhere. I am careful to make everyone she is left with aware of what she can and can’t eat saying if in doubt give her nothing i will feed her once she is home.

    We have been lucky enough not to have an epi-pen but have been told she is at risk of anaphylactic shock so am always waiting for the bog one to happen.

    We have been unable to take up the free school meals and she often misses out on playdates as parents are worried to have her but but on the whole she lives a happy normal life..

    With regards to the Formula, persevere, we ended up withdrawing the breast feeding and then she agreed to drink the formula took me about a month of trying. The stuff tastes and smells disgusting. but they get used to it quickly.

    Good luck with everything and hopefully our children will start to grow out of some of their allergies. xxx

  2. May 5, 2015 / 9:59 pm

    What an absolute nightmare, I didn’t realise things were so bad with her lovely! Fin used to get chronic eczema and I hated seeing him in so much pain when he was so small, luckily after avoiding his triggers as much as possible for years I gradually reintroduced things, and now his eczema is still there at times, but controllable!
    Really hope it becomes more controllable sweet, and I really feel for you!

    Stevie xx

  3. May 5, 2015 / 10:02 pm

    I can only imagine how worried you would be and how hard it is not being able to just stop somewhere for lunch. I hope you get those tests soon and they give you some answers. It must be so hard seeing her ill so often. x

  4. May 5, 2015 / 11:03 pm

    I totally know how you feel! Our 7 year old son was diagnosed with allergies last year to 8 different foods. None of his are epi pen serious, but they make him really sick. The pediatrician said he could grow out of them or they could get worse….we just don’t know. Talk about totally overhauling the way we eat!

  5. May 6, 2015 / 9:47 am

    I really empathise with you. Our youngest has multiple intolerances, not allergies and I find that stressful enough so i can only imagine the fear you live with. I think you’re doing really well though and following the rules strictly is definitely the right way to go. I personally would like answers on why some immune systems react like this – it’s a huge area and I’m not sure that anyone really knows.

  6. May 6, 2015 / 6:52 pm

    I’m so sorry that you have to deal with this – it must be a nightmare always having to plan so rigorously to stop any reaction from happening. I can’t imagine how hard it is. I hope that she starts to grow out of them or that you can get them more under control. She is such a gorgeous little lady who is clearly not affected by the majority of it, look at her smiling in that photo! Thanks so much for linking up with #TwinklyTuesday

  7. May 7, 2015 / 1:42 am

    I know exactly what you are going through as my eldest Ryley has had life threatening allergies since we started feeding him solids and they have been ever changing. He has to carry an epipen with him at all times. My best advice is make sure you find an allergy specialist, one who only deals with allergies as this made a huge difference in Ryley’s treatments and what we could feed him 🙂 if you have any questions feel free to ask me as I have 16 years of experience.

  8. May 11, 2015 / 12:29 pm

    It’s a shame you don’t feel like you can talk about it. I’m sure that would help you process it all. It’s a lot to take in. I am sure this post will be so helpful to so many others that are experiencing the same thing and have the same thoughts and fears. Good luck and thanks for sharing this post £bigfatlinky

  9. May 18, 2015 / 8:14 pm

    Oh my goodness as if parenting isn’t hard enough. Hoping she grows out of the intolerances in time #MaternityMondays

  10. May 20, 2015 / 6:14 am

    Oh my word, how awful for the both of you. We take so much for granted, I can’t imagine how difficult this must be for you. I’m sure this post will help so many other people in a similar situation. I hope that she grows out of these allergies eventually, keep going and keep positive xxx

  11. May 20, 2015 / 6:38 am

    Oh my goodness this sounds so stressful. We found weaning hard enough without this. I hope she grows out of them, this would make it so much easier. It’s great that you are talking about it though, I promise that you will find so many people who are going through similar things which will be really reassuring & will help you to get through the process. In a few months time you’ll be a complete expert in this field. Good luck with your new linky. 😀 x

  12. May 20, 2015 / 7:11 am

    If parents didn’t have enough to worry about already, hey? It’s definitely something you should talk more about, get it off your chest and don’t be worried about people thinking you’re being dramatic – you’re totally within your rights even if you were, they would be!
    I was always worried about giving Toby something new too, not that he’s even had an allergic reaction to anything. Hopefully Ava might grow out of at least some things. That poor little rash on her face must be horrible bless her xx #weaningwednesdays

  13. May 20, 2015 / 1:22 pm

    Sorry to hear you have to go through all that. Hopefully with time she’ll be more tolerant and you’ll know exactly what to give her and what not to. Don’t worry about childcare, there’s a boy with similar allergies at Emma’s nursery and the staff are well aware and they have a plate system for different allergies and preferences for the children. xx #weaningwednesdays

  14. May 20, 2015 / 1:26 pm

    This sounds so so hard. I have life threatening nut allergies but at least I am an adult and can manage it myself. I hope she grows out of them soon x
    #weaningwednesdays

  15. May 20, 2015 / 1:55 pm

    I know exactly how you feel.

    My son was 10 months old when he was finally diagnosed with multiple food allergies after he had a severe reaction and went into anaphylactic shock.
    At the time you hear “severe multiple food allergies”, it feels like both your child’s and your world has fallen apart, but it hasn’t.

    There are times when it’s hard, such as parties and not being able to eat out, but it gets easier. Both nursery and schools have been fantastic with understanding not only his needs but my paranoia too.

    Mikey is nearly 11 and is completely clued up on his allergies. He knows that he must carry his bag with his epipens in and he always checks food packets when we go shopping. Even food we buy every week!

    I worry all the time and continually hover over him, especially when trying new foods, but I know I have to trust him and give him some independence as he’s starting secondary school soon.

    It does get easier 🙂
    If you ever need to, please feel free to talk.
    You’re not being dramatic. You’re being a mum.
    Xx

  16. May 20, 2015 / 7:09 pm

    I can’t imagine how hard this must be for you, I just take it for granted that my boys can eat anything. It must be such a worrying and difficult time for you. Try not to worry about child care. I had a boy in my class who had many food allergies. All the staff in the school were fully trained in what to do and how to use an epi pen. X #weaningwednesdays

  17. May 22, 2015 / 1:52 pm

    I think you’ve made a good start by talking about it here, I can’t even imagine what you are dealing with. As for parties as she grows up she won’t mind just take her a special party glitter food box maybe? #weaningwednesday

  18. May 23, 2015 / 10:15 pm

    oh sorry to hear your little one and you are going through all these troubles, if any consolation L had horrible start with weaning, all normal food made her constipated and it was a bit of a struggle for us, hopefully everything will get better, fingers crossed

  19. June 4, 2015 / 10:04 pm

    Oh how terrible. Trying to be positive at least you have found out early enough and can check all foods and drinks to ensure there is nothing in it that could harm her.
    She will grow up with it so will know when she gets older not to eat something unless she is sure what is in it.
    Must be terrible at times saying no and her not understanding why she cannot eat something.

    Thanks for sharing. #weaningwednesday

Leave a Reply