Getting up to date
Aqila had an appointment with Dr Chian Wen Chien, his allergy specialist at KKH today. Prior to this consultation, Aqila had a blood test (IgE teat or Immunoglobulin test) to check what his antibodies level is against eggs and peanut. We discussed the result during the consultation, and it has shown good progress. Aqila's IgE level for eggs is down compared to the result of previous test but he is still considered a high risk case to get severe allergy reaction, based on past history of accidental indigestion.
Aqila was also intially scheduled for skin prick test today, followed by a food challenge test (egg) in two weeks time. However, he was down with flu (runny nose and cough) since the beginning of this week and currently under medication (antihistamine) so those two tests had to be postponed to a further date, as medication such as antihistamine can influence the result of the test.
Learning something new
Despite the cancellation, I would say that it was still a fruitful day for us. For me it was like a refresher course on how to raise a child with food allergy and how to manage his skin condition due to eczema. For Aqila, it was his first lesson on how to take care of himself properly and independently without having his mom or other caregiver to help him manage his skin condition. The head nurse of the allergy department went through with him in details of the proper daily wash/ bathe rituals as well as before bed ritual. What he can do to lessen the itch when the eczema flares up (can not scratch but can pinch the skin etc). This is important because sooner or later, he has to be able to takes care of himself. I know it is not easy and can be quite tedious (even for me), but eczema is a long term chronic condition. He was born with this condition, so he needs to understand and know how to deal with it.
Aqila is 8 now. I have been slowly explaining his special condition to him from time to time. I explained to him that he needs to be careful in choosing his food, and that peanut or tree nut is a no-no for him, perhaps for life. Anything contains these ingredients have to be avoided.
Aqila is a loving child. He still loves to cuddle and hugs and kiss his parents. With that...I teach him to be careful when kissing people too. Especially if the person has just eaten food that he is allergic too, especially peanut!
SKin in therapy
The doctor was not happy with his skin condition. The rough and dry condition is due to lack of moisture in the skin (not enough moisturer given and wrong choice of body cleanser) and his habit of scratching his itchy skin. Thus, for the next few weeks Aqila has to sleep with a pair of gloves on. This is to prevent him from scratching his fingers and other parts of the body with his fingernails. Whoaaa...we have our own Michael Jackson! :P
Medication and cream for eczema.
Important things to remember:
1. Never use soap base body cleanser and shampoo for people with sensitive skin.
1. After bath, pat dry the body. Do not rub dry as the harsh rubs and towel may damage the sensitive skin.
2. Apply medication cream (he uses elomet) very sparingly over the inflamed area (only).
3. Apply the intensive cream over the inflamed skin
4. Apply generous amount of protective cream all over the body
5. Put on gloves when go to sleep.
We use bath oil as cleanser for his fingers and body. We need to soak the fingers in bath oil solution for several minutes, twice a day to regain its suppleness. Talking about fingers spa!
We use QV flares up for his fingers spa. Mix 1 litre of lukewarm water with a half cap (very small cap) of the oil will give 'murky water' like result.
Some recommended brands for people with sensitive skin are: Physiogel, Cetaphyl and QV. These brands have different types of products: bath oil, bath wash, cleanser, body lotion, cream, shampoo etc. It can be quite overwhelming and confusing. Dont be :) Basically lotion is thinner solution than cream, so if the skin condition is very very very dry, go for cream instead. My Aqila used body lotion from Physiogel when he was smaller (2-5 years old) but as he grows older, his skin has become dryer and needs stronger cream to protect it. Now, he uses QV cream and it works magic. The secret is to moisturize often and generously.
How to tell if the skin is dry? It is rough not smooth nor shiny, and it is not supple either. My son can not stand direct sunlight too long as he will develop rashes and itchiness. Those reaction is due to loss of moisture from his skin because of heat. The skin (inside layer) cracks and thus becomes itchy.
Nose jobs too
Aqila also has allery rhinitis or sensitive nose. So on top of the regime above, he is currently on nose spray for the next 2-3 month to control his condition, and he is to take antihistamine too, as-and-when his nose starts to get runny. Oh well....
The scheduled food challenge next year is a baked-egg food challenge. Means, he will be given several muffins to eat (which contain egg) that mom is going to make, and the doctor and nurse at hospital will monitor his reaction. The recipe was given by the hospital, so all i have to do is follow the recipe and come up with good and tasty (and hopefully harmless) treat for Aqila. This food challenge is less risky compared to boiled-egg food challenge.
Because of the risks involve in a food challenge, it is best to do it in a safe environment such as hospital, incase the reaction is severe. The reaction can be seen within minutes to several hours, therefore a food-challenge is usually a whole-day affair. Children may need to be admitted if the reaction is severe too. What kind of reactions usually occurs?
1. Skin reaction: Hives, swelling of eyes, itchy eyes, rashes on body
2. Lower and upper respiratory reaction including: hoarsesness of voice and wheezing
3. Gastrointestinal symptoms such as abdominal cramps, vomitting and diarrhea
4. Cardiovascular compromise, hypotension, loose consciousness, cardiac arrest. Yes, cardiac arrest. That is why the challenge must be done in hospital!
Because of these risks, parents are advised to discuss this issue thoroughly with their spouse. It is totally allright to postpone or to not take the test if you are not prepared to face the risks.
Oh anyways, it is not the end of the world if your child does not pass a food-challenge. Perhaps, his/her body is not ready yet. Perhaps the challenge can be repeated in 2-3 years later. I know a friend whose son failed miserably during egg-challenge but the kid can now enjoy bread and cakes contained eggs without any reaction. So there you are....have faith :D
So if you have children with food allergy or eczema, be prepared to do all those explained above for a long long time. Perhaps...for a life time. But the condition can be controlled :) Do be patient though, as here and there there will be hiccups. Dont lost hope...just keep doing what you can do best for your loved ones. :)