Saturday, 9 May 2009

the light bulb moment FOOD

I wasnt happy giving william a strong daily anti -histmine, it did seem to have side effects.
He spent a great deal of time on the sofa, thumb in mouth, in a sleep daze. His calorie intake did drop off.

He wasnt fond of food, in fact from the begining he often refused food, and so very tiny tastes were all I could get in him. I did start at 5 1/2 months,but he wasnt ready, so left it for a while and then tried again.

As he got older, his skin did react to the food he touched ( and then refused), like tomato. which being a acidic food, ( which does tend to 'shoot through' for some ) is a common cause of skin irritation in the young. I had seen this a few times with other children, so at first wasnt too concerned. But it did give me pause for thought, when the bright red skin with hives would take a long time to disappear.

By the way , I cant handle a raw tomato myself, or a raw potato, it would give a burning feeling in my hands. So i peel a potato under running water, and use a plastic bag to pick up tomatos or handle raw meats.

About this time he started to behave in a odd way while sitting in his high chair. He would SNIFF the food first, and then decide to refuse it outright, or try a little. He refused marmite ( which when he touched it, caused the hives and red thing), refused to eat anything with beans etc, or yorkshire pudding or cake.

This sniffing and turning his face away was quite common for him, I often thought he was a bit of a gorilla while he did this, as most apes sniff food before eating. Sometimes i would think back to his lovely newborn hairy ears.....................not so much baby as monkey.............a cute monkey though.

Hives seem to be part of the early years of multiple allergic children, I did at one time suspect that his ezcema was linked to cat and dog allergy. We visited my MIL who at that stage had a cat and dog.
once when he slept in his car seat on the floor, the dog walked by, and one single hair drifted slowly down on to his bare arm. A large hive lifted it up underneath almost immediately.
He also used to hive up on walks in the pushchair, or in the car on one side of his body/face if the vents were pointing at him.
once the hives went down, ezcema replaced it.
during the spring he did have a slight wheeze , and was given a inhaler and spacer for a while.

he went bright red when we went clothes shopping, pushing him through the shop floor, and the redness would only go once we got home. then he would be pretty pale, and worn out looking. we used to joke that he was a typical male who was bored with clothes shopping. how wrong could we be?

one day, my hubby gave the kids their breakfast, while took the oldest son to school.
when i returned , william wasnt looking so good. his face , neck , arms were bright red, his hands and arms had hives. He had been crying , but had stopped and sat exhausted with shiny eyes.

He had been given his first meal of toast and smooth peanut butter, he hadnt eaten it, just touched it and started to scream loudly in a panic.

So, we gave him some more of his anti histmime and took him to the GP.
who examined him, looked in mouth and throat, and said because he hadnt had any breathing problems, this allergy was mild.

As william was slow at weaning , he still needed lots of breastfeeding, and there were foods we hadnt even yet tried to give him. After all its in the rules to only add certain food types after 12 months.

SO , when i gave him egg, I didnt think of it as being a high risk food, just a high calorie food which might build him up a little.
He was 13 months old, and i popped him in the high chair with a bowl and spoon, put one mouthful of scrambled egg in to his mouth. Then turned away to deal with the needs of the other two boys. From behind me there was a brief pause, and then a huge below of pain.

william had gone bright red , and was screaming, he was frantically rubbing his face, and neck. hives appearing in front of my eyes. He suddenly violently vomited, and as i tried to clear the mess, when his bowels emptied and ran on the floor.
hives spread from contact with bodily fluids, so I picked him up, gave him a huge dose of anti histmine. Then stripped him, washed him and wrapped him in a big towel.
He was pale, the hives had gone, his eyes glazed with shock.
I didnt think of calling for help, i had heard of peanuts being a killer, but not anything else. I knew nothing of anaphylaxis, what it was, and when to get help.
And so it seemed did any one else, including all the doctors and nurses i had met, when trying to get help for william.
To this day, i am really aware that we could have lost william that day. since that day we have been in that situation again, and rushed him to hosptial. Even recently as he is now 13 yrs old.

So far we have been very, very lucky.

After this we pushed to get further help, and was reffered to a local pead, a woman who explained that william's symtoms were one the moderate side, and that avoidance of the food was the only way forward until he grew out of it.

I asked about epi -pens (having been doing some re-search) and she put me off the idea , saying it was dangerous for him to have one at such a low weight.
She explained that there was a risk of brain hemorrhages if a child is under a certain weight, but of course , there is a risk of brain damage from anaphylaxis as well.
He was 15 months old and still was no were near the 25 lbs to have the junior dose epi pen.
But, strangely she did give me a faded photo copy of instuctions on how to use one. To keep once he had met the magic 25 lbs.

It was after this time I rang AllergyUK to ask for help, and they explained that on the basis of his suspected peanut allergy it was our legal right to push for a referral to a pead immunologist.
Allergyuk also got one of their allergy nurses to write a letter to me, which really helped. I cant stress how important this letter was, and how grateful I am to this day.

My Gp worked hard to find someone to help, in fact , it took her two weeks to find a name for us. So that explains how rare these allergy docs are in the uk!

the waiting list for first appointment was 8 months to a year. When william got to the hospital , the waiting list below us was for 8- 18 months. Recently that has changed to for london area alone to 10 weeks, which is good. But when you bear in mind there are no clinics in ireland, scotland, wales, there isnt a lot of help to get for many, many allergic people.

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