One of our
aims in starting this blog is to explore, as Zach and Charlie grow up, how to
successfully teach them how to live with allergies and with the constant
exciting possibility that they may outgrow them. We would love our readers to share stories and advice about how to do this without embarrassment, exclusion or fear. So what do you do?
Say you are invited to a social occasion, a birthday or a family Christmas, your choices are as follows. You either don’t attend because you feel that it is all too much to manage. Or you attend but you prepare, letting people know about your child’s allergies in advance, trusting that people will remember and take you seriously. That way you don’t have to talk about it when your child is there and everyone is free to enjoy themselves. Alternatively you let everyone do their thing and you and one or two others act like hawks for the entire occasion trying to find, probably unsuccessfully, a balance between your child’s safety and their independence.
During
the two and a half years of Zach’s life, I think we have managed the social
situation with varying degrees of success. My personal opinion is that people close to your child need to be informed and they need to be informed in the graphic
detail. This way you can allow others to care for your child.Therefore, I think that making food allergy a normal and accepted part of life is a family affair, whoever you count as your family. Within families, I think it's okay to have expectations that family members will care for your child’s well being. Part of this care is helping to create an allergy safe food environment for your child.
So what
did we do?
We got support and handed the reins over to my mum and dad. They contacted everyone going and clearly spelled out what it means to be with Zach who has multiple food allergies, how to manage it and what would happen if he ate anything he shouldn’t. Some how they got the right balance of 'tell it like it is' stuff, emotion and empathy.
And what was the outcome of trusting my mum and dad?
 |
| Zach's 'Christmas cake' |
A fun-filled,
incident free and relaxed time for everyone.
We still had to talk allergy and check packets now and again but
everyone thought about him, from storing food, to cooking food, eating out and
cleaning. So for us, that's how we have started to teach our toddler. With or without his allergies, when we are with people who care and in this case, with family love and acceptance, Zach was able to enjoy every second of his holiday, spend time away from us, play hide and seek with his cousin and eat meals as part of his extended family. He had dairy free chocolate and allergy free lollies galore and because of his family he didn't miss out on one single thing. We found him at one point in our bedroom with his cousin (4 years old) and 3 packets of dairy free chocolate buttons. They were giggling their heads off.
We had the best time and I learned that, if you have people around that care for you and your child, learning to communicate, share, accept and trust is the best way forward and actually, for me, the best way to show Zach how to live.
Love
Charlotte x
We hope that you enjoyed reading this blog, despite the mention of Christmas in the month of May! Please share your comments, thoughts and ideas in the comments section below.
Have just been reading your facebook page and blog - it is SO good! Am actually feeling a little teary reading it.
ReplyDeleteFelix seems to be sensitive to something and it is so exhausting! When he was newborn he cried whenever I fed him and I was advised to cut out dairy (our middle son Finn was dairy intolerant until about 3 years old and still drinks lactose free milk and is very sensitive after any bugs). To cut a long story short weaning hasnt been easy, he was very windy and tummy achy and waking what felt like a thousand times in the night. Then he started pooing in the night.
So 2 weeks ago I cut out all dairy out of my diet again and all wheat out of his and he is finally sleeping! (4 hours at a time but still!) We have our evenings back which feels like a miracle.
But at the same time I feel so lost. When do I try introducing things again? Am I going to be breastfeeding forever??
The health visitors are nice but not exactly a fountain of knowledge.
Your blog gave me quite a few things to think about, that there are type of formula I can try and that there is hope! (sorry for the long e-mail - abit of a relief to write about it!)
Hi Emily,
ReplyDeleteNice to hear from you adn thank you for your feedback about the blog. Im so sorry about Felix. How old is he? Is he gaining weight etc? Zach was crying, not sleeping, windy etc like Felix but also covered in rashes. Charlie was crying etc but losing weight and no rashes - he has intolerance, but you know about that because of your middle son. Have you seen your GP? If you are cutting things out of your diet to breast feed, you need to look after yourself. I basically cut one food group out per 2 weeks and waited to see the difference. We had to fight to get referral for allergy tests as did Thanh but your GP may be better. There are different milks out there but some like one by Aptimil are only partially hydrolysed so don't do the full job. Neocate was our saviour, on prescription. Its totally hypoallergenic and it allowed me to have a latte again!! Once I got him on formula (add vanilla essence), Sam did the night times and the started to sleep and he felt much better. In terms of weaning I did one food every four days and looked for a reaction. Zach was constipated like Felix and I never thought the doctors listened (they were always on about vomiting) but it was a real sign of Zach feeling poorly and then he didn't sleep because of it ( I think). Generally 4 days gave me time to work out that he had constipation and that's why he hadn't slept and it was because of that food - it's long winded!!
If you haven't already I would see your GP and a dietician and paediatrician.
Let me know what happens. Hope the blog helps a bit. I feel for you so much.
Just found your blog from a post A Gluten Free Vegan Mom Who Knows posted on Facebook. Want to wish you both much success with the blog!
ReplyDeleteI have a 3 1/2 year old that has an egg and a severe peanut allergy(we have 2 epi pens at all times). They were both confirmed with an allergist when she was 13 months old. Unfortunately, we haven't had the support that you got from your family (on my side of the family, hubby's family are awesome!). We had a week away planned with all of my sisters and brothers and their families. There would be about 20 people in the house ranging in ages 18 months to adults. My family wasn't willing to give up peanut butter for a week. My sister said she didn't want to deal with her 8 year old throwing a tantrum because he couldn't have his peanut butter in the morning. (And my sister is an ER nurse..so she KNOWS what can happen) Seriously?? We ended up staying in another place, and only meeting with them at certain times during the week. It has caused some bridges being burned that will probably never be built as strongly again.. but my bottom line was to keep my daughter safe.
That said.. I do believe we are starting to get the social aspects down a bit. Whenever we are invited to a party or to a dinner, I always talk to the hosts and find out what is being served. If it's not safe for V, I make a meal to bring her that is very similar.. but free of her allergens. I then serve it to her, without drawing attention as much as possible. For parties, I always bring her a cupcake to have when the other guests have cake.
I know it's not perfect.. and it will most likely become an issue as she gets older, as she realizes she's "different"... but we all go through that stage.. whether it's allergies, or hair color, or the size of our nose.. etc. It will be something we get through. It's just a bump in the road. :)
Hi Jacqui,
ReplyDeleteThanks for your comment and glad you like the blog.
So sorry to hear that your family are less than supportive. It is very difficult to understand people's mentality some times, except that maybe seeing is believing and maybe some people just don't understand how serious things can be (except your sister), like with your daughter. It is such a shame because as parents it's a difficult balance to find between socialising and keeping your child safe and healthy. Hopefully your family will become more helpful one day. I like the thought that it's just a bump in the road. It will all work out, it just takes some thought and a whole lot of patience.
I do exactly the same at parties and with other events. It isn't ideal but we will all get there and our children will be happy, healthy and included.
Take care and keep in touch
Charlotte x