Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

And the moral of the story is…

leave a comment »

I cannot count on both hands the number of people I know in real life, and have met online, who I would like to send these extracts from Sue Dengate’s “Fed Up with ADHD”.

One new friend kept telling me about her nephew who was on a diet low in salicylates. I had never heard of salicylates. In retrospect I can see she was observing my child’s behaviour and trying to get the message across. I was totally unreceptive. When my friend told me that most fruits contain salicylates I was horrified. Life without fruit was unimaginable. “I’m glad we don’t have to worry about that,” I told her. P17

[…]

During this holiday we began a blitz on saying “please” and “thank you”. It would take us about three years of persistent effort to get Rebecca to say these reliably. Arran learned in about three weeks. This summarises for me the size of the problem we were up against. Expecting Rebecca to acquire common social skills through observation was unrealistic, including basic skills such as washing of hands and waiting in turn. I estimated that if I needed to remind Arran about something several hundred times, for Rebecca it would take several thousand times. This represented a drastic increase in parenting workload which could have been avoided. She learned eventually, but why bother? It would have been easier to change what she ate. P21

[…]

I thought if my children were affected by food additives, I would notice an obvious reaction, but the truth is, parents usually don’t. The effects just seemed to be part of their normal behaviour. When I removed food colours and some preservatives from Arran’s diet he started sleeping through the night straight away, although he still had diarrhoea.

From The Medical Journals
‘The younger children had constant crying, tantrums, irritability, restlessness and severe sleep disturbance, and were described as “disruptive”, “easily distracted and excited”, “high as a kite” and “out of control”. Their parents were exhausted through lack of sleep and the constant demands of their children, who were unable to be comforted or controlled. THe older children were described as “irritable”, “aimlessly active”, “lacking self-control”, “whiney and unhappy”, and “like a bear with a sore head”.’
Rowe KS and Rowe KJ, “Synthetic food coloring and behavior”, J Pediatrics 1994;125:691-698

In retrospect, I wish the dietitian had explained more to me about the effects of food intolerance and how to use the RPAH elimination diet, in case avoiding additives wasn’t enough. Unlike the other health professionals I saw, she had all the information I needed. She just didn’t give it to me. It didn’t occur to me that Arran’s health problems and Rebecca’s behaviour problems could have the same cause so I didn’t talk about Rebecca and I don’t think the dietitian realised just how bad our situation was. P27

[…]

One weekend we went to visit some good friends in a nearby city and I noticed that their five-year-old son, whom I normally regarded as rather demanding, was unusually agreeable. For morning tea there was a pink iced bun, which my children were not allowed to eat. I watched their son eat the pink icing and right under my eyes, he became restless and demanding.

“When we came in he was behaving very well, but I’ve noticed he’s changed since we had morning tea. Do you think he could have the same problem was Rebecca?” I asked his mother.

My friend was remarkably receptive. “I’ve been wondering about that,” she admitted, and described how the preschool teacher had referred him to the school nurse for an assessment. The nurse had commented, “He doesn’t concentrate very well, does he?” It was true. He wasn’t concentrating, and couldn’t finish the test, despite excellent concentration at home.

By the end of our visit my friend had bought a copy of Dr Feingold’s classic book, which is still a good read despite the outdated diet. Her son was already on the diet although he was not a hyperactive child. In many ways he was the opposite of Rebecca – a sendentary, good sleeper who was reading fluently before he entered preschool. But his messy handwriting, poor social skills, intermittent concentration problems and inappropriate temper outbursts improved on the diet. “He seems to be most affected by salicylates, just as the book says,” his mother commented.

“Thank goodness that’s not a problem for us,” I answered. “I’d hate to have to cut out fruit, although I have noticed that Rebecca gets aggressive if she eats a lot of almonds, so I suppose that’s salicylates. I think she has a mild intolerance.” How I wish I had paid more attention. Dietary management so far had improved all of Rebecca’s behaviours except sleeping. Here was someone telling me the answer to our problems but I still wasn’t listening.

Like most people, I didn’t want to hear about salicylates. I still thought that if your child was sensitive to certain foods, then you would see an obvious reaction soon after eating. I couldn’t understand that when children eat food chemicals many times a day, as with salicylates, the result is good days and bad days which come and go for no obvious reason. The concept of trying an elimination diet in which all additives and salicylate-containing foods are avoided, then reintroduced one group at a time, was still far beyond me. PP32-33

[…]

Rebecca had so many problems that I decided it was time for us to take diet seriously. The dietitian was not helpful. “I don’t believe the Feingold diet works,” she said, “and it’s not my job to help hyperactive children.” She persuaded me not to try the elimination diet which I had requested. “It’s very difficult, and you’ve done most of it already.” If only I could have talked to a sympathetic dietitian at this stage. I was finally ready to hear what they had to say, and it would have saved us years of anguish. […]

[After being given advice to increase vegetables and fruit] I thought that I was feeding my children good food but the dietitian could hardly have given me less helpful advice. I had decided we didn’t have to worry about salicylates. I couldn’t have been more wrong. We embarked on a two-year period of even worse sleeping problems than we had already encountered.

Researchers comment that mothers rarely see a correspondence between food and behaviour. It was true. I did not relate Rebecca’s increasing inability to go to sleep at night and worsening problems in other areas to the “healthier” diet we were eating. PP49-50

Advertisements

Written by alienrobotgirl

16 August, 2006 at 4:19 pm

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: