I am writing to share my daughter Freda’s experience. I suspect she is currently recovering from an allergic reaction to 635. She is turning 2 next Saturday and we are hoping she will have recovered sufficiently to celebrate.  I have a history of allergies and asthma in my family, so have always been careful when introducing Freda to new foods. However, until now she has appeared to have escaped the food (and other) allergies which were a problem throughout my childhood, but does have a Penicillin allergy (it gives her a rash).

Ten days ago (Friday) Freda woke with a rash all over her torso. By that evening it had spread all over her body, including face, hands and feet, and she had developed a fever. We took her to Box Hill Hospital, and the doctor advised us she had a virus and it was not contagious. He suggested we give her Panadol 4 hourly to reduce her temperature and give her Phenergan or Claratyne for the itch. During the next five days we gave Freda Claratyne but it did nothing to stop the itch. Her temperature remained up and we eventually gave up on the Panadol. We also found that her mood was deteriorating, particularly in the evening at this time, the rash (which had nearly cleared up) seemed to flare up again in certain trouble spots such as her back and around her nappy. Her glands were up. Her body was very warm.  On Wednesday, after her evening bath, she went berserk when we tried to dress her. She was scratching madly and screaming non-stop  it took two of us to hold her down and get a nappy on her, and we had to give up on the clothes as she was putting up such a fight. After an hour of distress, she fell asleep in our bed. We then dressed her. She had a terrible night, moaning in her sleep, and woke at 230am and screamed for half an hour, trying to pull her clothes and nappy off.

The next morning I took her to our GP and he was perplexed. He was trying to find some sign of infection to explain why her temperature was still up. He advised we switch to using Phenergan to try to control the itch. I gave her three doses of Phenergan - the maximum available - that day, and yet the itching continued. That evening we had a repeat of the screaming and scratching frenzy. We ended up calling an ambulance.  By the time the paramedics arrived, Freda had stopped screaming and was quiet. They were very helpful; one paramedic raised the issue of this possibly being an allergic reaction but was wondering if it was something to do with clothes detergent.

They took us to Box Hill Hospital, and suggested to the nurse in Emergency that Freda might be a bit dehydrated and that she needed some medication to control the itch. The nurse checked Freda’s BP and temperature, looked at her skin, and commented that her temp was fine and that she was in good spirits. Indeed Freda was in a good mood by now and very interested in her surroundings. The nurse did not see Freda scratching in the few minutes she spent with us, so noted on the file that Freda did not appear to be itchy. And yet, Freda had new (bright red) and old (scabby) scratch marks all over her shoulders/back of neck and lower back. The nurse returned ten minutes later and saw Freda trying to scratch inside her ears and mouth, and noted on the file that Freda was scratching these areas. She then left again.  Nobody else attended to us for the next hour. By this time, Freda was falling asleep (still giving the occasional scratch). She was still refusing clothes, and only had a nappy on.  She fell asleep. We dressed her and took her home. We advised someone at the Nurses Station that we were leaving  the nurse lifted Freda’s top to check her skin and advised that we bring her back during the night if there are any problems. I asked her if we could have medication to control the itch and she said no. Freda continued to sleep  we took her home and put her in bed.

The following morning we took Freda to see an allergy specialist. He advised us the rash was urticaria, and his belief was that she did initially have a virus and her body had an allergic reaction in response. He advised it could take up to 2 weeks for the rash/itch to clear up completely. He said the only other explanation would be a food allergy and that if there was no improvement over the weekend we should bring her back this week and make changes to her diet. We are continuing to give Freda Phenergan to help ease the itch. The allergy specialist called me today to ask how Freda was, and I was happy to report that although she is still itchy, her mood has improved and the irritation seems to have decreased. He discounted Flavour Enhancer 635 as a possible cause for Freda’s reaction!!! He said food additives do not produce a long lasting reaction like this… Well, I am not taking any chances.

My mother (a very devoted grandmother) has already been to the supermarket today and spent some time compiling a list of biscuit/chip products that contain 635 so we will know what to avoid. Now aware that 635 can cause the exact symptoms I have seen my daughter suffer during the past few days, I have reflected on her diet. The day before Freda’s rash first appeared, she ate something she had never eaten before: flavoured chips.  My apologies for such a long-winded letter, but these details are all too fresh in my mind and it has been an exhausting and distressing ten days for my family! – Tara, Victoria.