Corpse of Milk
June 8, 2010 at 10:33 pm | Posted in Henry | 18 CommentsHenry and I spent today at Westmead.
You might remember last year’s cooked milk challenge? Today was the next step in challenging his immune system with dairy products. The Cheese Challenge.
There is so much involved in one of these. My husband again took the day off work, to stay home with Emmeline this time to ensure she gets her required sleep at home. Henry and I shopped for cheese, for something that we thought he might like. I’ve never even looked at kid’s cheese products before and I was surprised to find that they came in animal shapes, squares, circles and stringy tubes. All very bizarre, but I thought the novelty effect might help.
With an expected duration of 4-6 hours, I packed everything needed for sewing, reading, drawing, Lego, eating and drinking, and every piece of technology I could find – iPhone, iPod and iPad. We looked like we were staying the week.
What I couldn’t bring was the ability to make everything okay for my little boy. There was no doubt that he did not want to eat the cheese. It’s hard to know why. He’s never liked soy cheese, but then neither have I. And I love cheese. It is quite possibly my favourite food.
My husband eats no cheese, hates the stuff (not that Henry would actually know that – he’s very careful not to pass on his dislike of certain foods and influence the kids – which I love to exploit as often as I can – “Look kids! Daddy LOVES peas! Don’t you love peas as much as Daddy does? Look at Daddy eat the peas!”. Bad wife).
It’s a common thought amongst the allergy community that kids do not want to eat the foods that make them sick, that the body knows that it’s a bad idea. But, you know, you don’t have to be allergic to dairy to not like cheese. And cheese must be a very strange substance if you have never eaten it before.
I promised Henry a trip to the toy store after the challenge, where he could choose whatever he wanted. I’m also not in the habit of that, but I figure if there was one instance where bribery was needed, and even highly appropriate, then this was it.
———
We started with a skin prick test (SPT), which like last time, showed an even worse reaction than the time before. Like last time, I was ready to go in to argue* for still doing the challenge, but I didn’t need to, since the doctor on duty said that was fine, the SPT can show a false positive, and that he had already cleared a cooked milk challenge last year after a strong positive on a SPT.
(Interesting point that. Googling when I arrived home, I found that that is often the case. SPTs are usually right on the money, but not always, especially as the child grows older. They can still show an allergic reaction to a food long after the food can safely be tolerated by the child. See here if interested).
They started him with a small amount of cheese (he chose the stringy cheese, by the way), about the size of half a pea, rubbed on his lips and I managed to get him to swallow it. Not without tears, and not without protest.
20 minutes later, with no reaction, they gave him a piece about 5mm wide and left it to me to get him to digest it. It was a battle. Force-feeding my child something against his will is not one of my favourite moments as a parent. Not just once, but three or four times (I lost count. I was traumatised). So was Henry. I don’t even really know how to talk about it. It was horrible.
After the second, and maybe the third, try there was no reaction for 20 minutes. It was looking good.
On the last go, I failed in my attempts to get him to swallow it. He started to retch and I caught most of it in my hands. The staff concluded that all of this was a sign that he was unable to tolerate cheese. I thought he’d be like that no matter if he could tolerate it or not. HE JUST DOESN’T LIKE THE DAMN CHEESE.
But you know, they are the medical professionals, and sure enough, after the last serve that he couldn’t get down, he started to break out in welts around his mouth. Not that it was easy to get a look at his mouth. By this stage he was in the foetal position with his head in my armpit, convinced that they were trying to get him to eat more cheese. I had to prise him away from me so they could merely look at his face while he sobbed and fought to hide from them. Awful.
They quickly administered antihistamines, and I don’t think he even realised that he had had a reaction. For that I am thankful. It’s bad enough that we will have to go back one day and do this all over again, and now he knows what to expect.
After an hour of observation we were free to go.
To the toy store. Where he chose some Star Wars figurines and a female-spider-Transformer character. And a toy microwave for Emmeline, “so she didn’t miss out”.
——-
As disappointed as I am in the result, in one way I am thankful that he failed the challenge today. If he had passed, then the clinic insists that you continue the exposure to the food at least once a week. For, like, EVER. Can you imagine force-feeding him cheese, at home, on a regular basis?
I asked him if it had been worth it? To get his new toys? He looked me in the eye and proclaimed an emphatic “NO”. I agree.
We go back to see his allergy doctor there next week to discuss the result and the way forward. The older he gets, the less likely it is that he will grow out of this allergy. It’s too raw for me tonight to know how I feel about that.
At least I know he won’t be trying some other kid’s cheese at morning tea again.
Now there’s a positive.
——-
*Why, you might ask? See above re the logistics required to get there for the day. Know that appointments for an allergy challenge have a waitlist of 6-9 months. Know that if we passed this one, we were scheduled for a yoghurt challenge before the end of the year. Know that I had a dream of my son starting school next year as an almost ‘normal’ child.
18 Comments »
RSS feed for comments on this post. TrackBack URI
Leave a Reply
Blog at WordPress.com. | Theme: Pool by Borja Fernandez.
Entries and comments feeds.
Sheridan, I can’t even imagine how hard it must be for the both of you to go through all this and all I can think of is how wonderfully brave you and Henry are.
Comment by Susie— June 8, 2010 #
Oh, I so understand every emotion you have. I have been fortunate that for their food challenges both of my boys (younger one milk, older one eggs) have cooperated in the doctors office and have passed their tests… but the getting them to eat it forever is very hard and requires some creativity and deception. My youngest won’t drink milk at all but does like yogurt and I just bought powdered egg whites to add to shakes for my oldest because we just can’t get him to eat eggs. I can’t even imagine how hard it will be if he ever outgrows his peanut allergy…
Comment by badlands quilts— June 9, 2010 #
I’m so sorry that you had such a horrible day. I am sure you are pleased that it is just over.
Henry will go to school a normal kid, he won’t be the only one that has allergies. There are two in beca’s class that have the big 3 – dairy/eggs/nuts. One of them even has fish.
Comment by donna— June 9, 2010 #
I agree with Donna – it takes more than a food allergy to make a child feel abnormal these days!
It sounds like the cheese challenge was awful for both you and Henry. Poor things. Thankfully it’s over for now.
Comment by Jo— June 9, 2010 #
How awful for you both. We are going through a similar time with a nut allergy. I can introduce certain foods now, although I’ve been told to do it in the hospital car park…….which is an hours round trip…….just incase of a reaction!!!! Mind you I have to do this for twelve days in a row…….not sure how we are going to organise that one. Feeling your pain, ps I use bribes too, my son is pretty good with it all but it makes me feel better.
Comment by julie— June 9, 2010 #
Oh Sheridan, a horrible day – my heart goes out to you both. I experienced it with Zoe as well with her recent eye issue and glasses. They have to put drops in her eyes which sting and made her cry. Of course crying makes the drops dilute and wash out so she had to have it done again (with kicking and screaming as she knew what was coming this time). We have to go back to Westmead on Monday 5th to check how she is progressing and it will be the same routine. Dreading it!
I agree with Jo and Donna as to what is ‘normal’, although we had the same apprehension with the glasses (and fear of teasing for her) but doing a quick survey it seems there are at least two kids in every class with glasses. Lachie had a little boy with egg allergies in his class last year and there was no issue at all except it made the other kids aware that they couldn’t share food etc. Also promoted responsibility in them, when I sent cupcakes for Lachie’s birthday he was very concerned that I made sure there were no eggs (which there weren’t of course!).
Take care
Michelle
Comment by Michelle— June 9, 2010 #
Poor Henry. What a truly devastating experience.I had to force feed my oldest to eat anything for her first year ( a very long story and one which may have read differently if medical science had been different all those years ago). I still believe that it affects her (she is 22) ability to be forced to do things even now. The little ones suffer forever because science is still failing them. Sorry. I am really upset, as you are, for the little man. How absolutely sweet, though, of him to think of his sister at a time like that. You are obviously bringing him up really well and I mean in the ways of love too. So important. Cherrie
Comment by cherrie— June 9, 2010 #
Hopefully he is feeling better today and whether he was allergic or not it’s obvious he just doesn’t like cheese. Not everyone likes every food nor do they have too. Charlotte won’t touch eggs although she is not allergic to them she just hates them. Mind you I like cheese but no way would I ever eat that stringy cheese either.
Comment by Cass Ward— June 9, 2010 #
What a horrendous day!!
You’re a brave mama for getting through it in one piece!!
You know what I love, though?
That even after a terrible day where he had to eat food he didn’t like and felt totally dis-empowered …. he still thought of his little sister and didn’t want her to miss out on a toy.
What a little sweetheart!!
Comment by Andi— June 9, 2010 #
Sending both you & Henry big hugs. Poor little boy, what a horrid experience & how truly dreadful for you.
He will be perfectly normal at school as everyone has said. Both my boys can tell you who has which allergies at school and what they can’t take to schoo. They will also tell you which children have wierd personalities, which ones have ODD, which ones have autism and any other little thing. There is no normal at school & at a good school the kids and teachers are accepting of everyone and cater for them.
Neither of my boys eat cheese, though occasionally I can put some parmesan on Als spaghetti or risotto. I make them cheeseless pizzas every week. And they will never ever eat that stringy cheese – horrible stuff full of too many other things!
Comment by notquitecrafty— June 9, 2010 #
Henry is normal, and so are you. Hugs to you both
Comment by Becky— June 9, 2010 #
I do feel the pain that you went through – I was told that I had to patch my daughter’s ‘good’ eye to strengthen her ‘weak’ eye, from the age of 1, for 6 hours a day!! 6 Hours of Hell!!! A very upset child who sobbed to take off her patch, and a very frazzled mummy wanting to do the right thing!
After years and years of this – now that she is 10, the doctor has finally told us that her eye, though having very poor sight, because of all the bloody patching we all endured, she has very very good coping mechanisms! The doctor was happy and I burst into tears! Thank God!
There is an end in sight and you are doing the right thing – believe me!!
Comment by Bronwyn— June 9, 2010 #
Oh how crappy! What a shocker of a day for both of you. You know what though, when he gets to school there will be loads of others with various allergies and/or intolerances. It’s surprising how well the kids without them know what their friends can or can’t eat.
Comment by thornberry— June 9, 2010 #
Oh my! What a shocker of a day, physically and emotionally exhausting. Thinking of you both
Comment by Leah— June 9, 2010 #
How awful…
But the Peas bit was funny & I do the same thing. Amazingly – about peas! (We are hopefully going to pick fresh peas on Sunday – those will be super YUMMY!)
Comment by Amy— June 9, 2010 #
Oh you poor things. Sounds miserable for you to watch and for him to experience! I’m still going through the whole allergy/intolerance thing with my son and getting him interested in eating anything is so miserable. I hope things go better in future…
Comment by Jeannette— June 9, 2010 #
Your descriptions are so vivid, they make me anxious about the day you had. It sounds like a complete shocker of a day and not one you’d like to repeat too quickly. The things we have to do as mothers. love to you both.
Comment by Lisa— June 10, 2010 #
[...] the last challenge, the horrific cheese challenge in June last year, I made it clear to the doctor that we were never going to go through that again. [...]
Pingback by Big Day « Chaletgirl— September 26, 2011 #