We went to the allergist today. After a 5-month wait.
Daffodil, my almost 3yo, reacts to sulphites, cashew nuts, dairy, cod, tuna and raw tomatoes. By reacts, I mean that within hours (night time) she will have difficulty breathing. Her airway constricts and she suffers with sleep apnoea, in that she will stop breathing up to 20 or 30 times an hour. For hours on end.
Literally, STOP BREATHING. For up to 30 seconds at a time (I’ve only actually let her alone and counted once. It was too stressful to watch and wait).
And on the nights she sleeps in my arms so that I can move her about and make her breathe again.
The associated impacts are of a really knackered and grumpy mum, a restless, unhappy, grumpy toddler who hasn’t had enough proper sleep and an older sibling, vying for attention because she feels she’s missing out. And poor Dad trying to be nice to the grumpy gals!
And I know it is food related because every time she eats any of the particular substances listed above, she has these same reactions. When she avoids them, her breathing is P.E.R.F.E.C.T. So perfect that some nights I worry because I cannot hear her snoring, her breathing is so quiet.
Remove the food, remove the symptoms. Introduce the food, bring back the sleepless nights.
Before I went, I prepared myself, I wrote down every question I could think of around allergens, food, intolerances etc. I wrote down all the detailed questions I have around the Milk Ladder. I hyped myself up that this appointment would be amazingly magical and supportive with some sort of recognition of my child's experiences.
This is not what I got. At all.
I felt so disappointed and deflated.
Something in me hoped that this once it might be different. That perhaps this consultant would take a different view to the rest of the medical profession. That maybe a new person in our journey would have some new and positive light to shed on the situation. That I would completely rewrite my memories o&unsupportive medical professionals and be elated about the support and connection and understanding I received today. I was so looking forward to writing that blog.
Alas, what I experienced turned out to be way shorter than I thought short would be.
I was told that my daughter was not reacting to food with her symptoms (I have months of food diaries that say the opposite and I could test today but I don’t want 4 sleepless nights guaranteed thanks). I was told that sleep apnoea as a result of a food allergy was not really a thing. I wasn’t told it never happens. I was so not taken seriously.
Daffodil was given the skin prick test for a number of foods that I suspected (know) are causing problems. The challenge with a skin prick test is that it only relates to IgE serum levels, which is important as this response type is the type of response that could end up as an anaphylactic one.
A skin prick test tells us nothing about delayed reaction allergies (IgG serum levels).
The skin prick test was negative for all but one items tested. Which I knew and expected because she has never had an immediate response (within 2 hours). No surprise there.
I also know that a negative on a skin prick test does not mean clear from an allergy. All a skin prick test will tell is that a positive result is a positive result. Nothing else.
Without so much in saying so, I was told that my daughter needed her adenoids removed.
I was told that she could and should eat a full diet as she had no allergies.
I was told that sulphites cannot be tested for. Nothing else. No information, no recognition. I was looked at like I was on drugs or something.
I was treated like my observations were meaningless and false.
Thankfully, I know I am the expert in my child and this stranger allergist is not. I have done my research and I know that enlarged adenoids can be related to elevated IgG serum levels (confirmation of delayed response allergy) [research paper, 2013].
I trust myself and my observations. And yes, we will vi
What shocked me most was this....
In discussing the Milk Ladder, because I would love for my kids to be able to eat dairy, I was asking questions like:
How long should I leave between each step?
What sort of symptoms should I be looking out for?
And with the second question, the allergist finally threw her eyes to heaven, and said "look - you're child doesn't have any food allergies. I'm trying to give you some control here. She can go out there and eat anything she wants. When she gets sleep apnoea again, ring your doctor the next morning and request an urgent sleep study when you can come and stay in the hospital overnight and she can be observed. Then they will decide if they need to operate immediately or not."
"You want me to purposely induce severe sleep apnoea to my baby so that she can have her adenoids removed?"
I chose to leave her office at that point.
My real frustration is that the allergist refused to acknowledge me or my child. That she would prefer to remove a necessary part of my child's immune system.
Why do our doctors prefer to cut us up and stuff us full of drugs than modify what we put into our bodies?
My daughter has a balanced and nutritious diet. Just because she does not have dairy does not mean she is not getting enough calcium. There are plenty of other sources of it out there.
And so I wait for the next appointment. I wait, in hope that there are some professionals out there who would prefer to support my family than cut us up.
I'd love to hear your experiences, and PLEASE, if you know an allergist who is supportive then please send me their details because I'm not an allergist, I'm not a paediatrician, I'm not a GP, but I can observe my child, I can read literature, I can see what causes stuff. I am not stupid.