Blog; re controlled food trials

Blog; re controlled food trials

Hi everyone,

I have been a little reluctant to share this because I worry that it might undermine the complexity or seriousness of Brooklyn’s food allergies however we are doing this under the guidance of a paediatric allergist & specialist, also at some point others will need to go through the same so it might be useful to them and it is useful for myself and my own records to document this so here we go:

Controlled food trials

As the allergist ascertained that Brooklyn’s allergies are non IGE (the allergic reaction is gastro-intestinal not respiratory) and noted the likelihood of age that he should or could grow out of them, he has suggested controlled food trials ie for us to trial a small introduction of the foods to see if he has grown out of any of them yet.

First food trial would be SOY….why soy?

• Soy seems to be his least reactive in the past; and
• There are also soy derivatives that he might be able to have that we haven’t been 100% sure on
along the way such as ‘soy lecithin, soy oil or may contain traces of soy’.

Milk and egg he has said not to even consider until he is at least 2 years of age. Wheat we can possibly try post soy but it’s so hard to know if he’s actually allergic like I am OR if he is intolerant because he’s not used to it, because I couldn’t eat wheat during pregnancy nor breastfeeding. With any luck he might take after his Daddy and be okay to tolerate wheat. But as I keep saying for everything, time shall tell.

SUGGESTED SOY TRIAL LADDER:

STEP 1: Baked soya
1. Baked soya; soya lecithin in baked foods/chocolate
2. Soya flour in bread; the “Gluten free bakery” brand bread has soy – can try
3. Home baked cake using soya flour, soya margarine or soya yoghurt

STEP 2: Cooked fermented soya
Soy sauce cooked as an ingredient – will try marinated chicken wings.

STEP 3: Fermented soya
Soy sauce uncooked

STEP 4: Well-cooked soya
Hydrolysed vegetable protein – cooked so maybe veg/soy oil???

STEP 5: Lightly cooked soya
• Soya custard – custard made with soy milk
• Cooked tofu

STEP 6: Uncooked soya
• Soy yoghurt
• Soy cheese
• Tofutti

STEP 7: Can fully re introduce soya
*Suggested amount is 3 x per week

HOW OUR SOY TRIAL IS GOING:

Trial #1 Wed 5 April 2017

So, it was time to do a trial, I felt nervous and a bit ill, was he going to have horrid stomach pains and all the other reactions? Has he REALLY grown out of his allergy? So I gave the smallest amount (1/8th of a biscuit) ingredients are: Gluten free flour (Tapioca, Besan, Arrowroot[1%], Soy), Sugar, Vegetable Oil(Vit E), Golden Syrup, Flavours, Xanthan Gum, Raising Agent – Sodium Bicarbonate, Salt. Contains Soy

AND he seems to be ok. BUT.. his nappy was a little sloppy BUT no mucous AND his nappy was sloppy the two days prior – possibly teething related, I am not sure. But no stomach pains or eczema.

Trial # 2 Wed 12 April 2017

I gave him 1/3 of a biscuit at 3pm, he did a poo at 6pm, a little bit sloppy, not a lot, no wind, no stomach pains, no hives/eczema and it was his first poo today. Will see how his nappy is in the morning.

Anyway, good news so far that he has tolerated a little bit. I am hoping the nappies don’t get worse. Time shall tell.

Thursday 13 April 2017. Last night he woke up around midnight (he usually sleeps through) and had wind pain and was passing wind. He went back to sleep after I gave him some nurofen and a sip of water, he wasn’t screaming like he has with bad stomach pain in the past so it wasn’t too bad but still thinking it is a reaction. No poo this morning  so I’ve asked day care to watch and tell me how he goes today…

QUESTIONS:

I don’t know what I’m meant to do, how much of a reaction is a reaction?

Do I persevere?

Do I just keep giving him a little bit often and gradually build up to more and more?

At what point do I pull the plug completely?

Are the ‘reactions’ I have seen so far going to cause inflammation and send everything backwards; his gut health and cause damage?

I will see what day care says, and I have a left a message for the allergist to ring me. The biggest problem is that there isn’t enough research to confirm what does and doesn’t work. Do you keep giving small amounts with the hope that the body will eventually tolerate it; is it worth the possible damage it may cause or do you just stay awake from it and hope for the best in future, although wondering if this will possibly prolong the issue? Gah.. I don’t know………..

Meowmy x

2 thoughts on “Blog; re controlled food trials

  1. I’ve found all three of my children (8, 5, 3) have varying food issues.

    I’ve had a really tough time with some medical staff – took 18 months of persistence to get my eldest properly diagnosed with coeliac disease – first one in the family and 2 adults since then. He suffered and it wasn’t until I finally convinced my husband we have to solve this because it’s not normal to have to bathe your child after every motion about 4 times a day to prevent burns! We researched as much as we could on Dr Google and came up with a few things to investigate. We had a great Community Nurse that listened to my desperate pleas and she got the ball rolling with a paediatrician.

    So, after all of that experience and research, I found that there were more issues and more dismissiveness. We removed problem foods and would introduce them in small amounts. If there were pains, wind, red ‘bits’, discomfort etc. then we would shelve it for a bit longer.

    We could never continuously persist with troubling food because it would end in mayhem. Our eldest can now tolerate moderate amounts of dairy, and small amounts of soy, egg yolks, coconut, quinoa etc. His only diagnosed allergy was egg white. He can now have small amounts baked. His siblings are a work in progress.

    I highly applaud you and your efforts. It’s a hard road to travel. I am doing the best I can too. To be honest, my children try so many different cultural foods it’s amazing! They eat healthy and we still find the odd treat here and there. We get up more than we fall down, even when it feels too much. xx

    • its so hard isn’t it when the medical profession don’t always know and don’t help. We have seen a GP, paed and two different allergists to get where we are today, it’s been a long road and I finally feel comfortable with the guidance we are being given. We have had to work out heaps ourselves as well hey. It’s great you are having some progress too with some introduction. It’s tricky as well with multiple siblings I think as well, even more to get your head around! You do a great job! and thank you so much for your kind words as well xx

Leave a Reply

Your email address will not be published. Required fields are marked *