No help for us in the UK.

Posted on: Fri, 07/02/2004 - 10:11pm
williamsmummy's picture
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Joined: 03/26/2002 - 09:00

I am sooo angry and upset I hardly know where to begin this post.
I have mentioned on another thread that william has had reactions to foods with colourings and additives ( e-numbers here) and thanks to all those posts that had links and support.

I have tried to get some sort of help from williams immunologist , through the allergy nurses at the hospital.
I rang and explained the situation.
I asked if there was any tests available so I could work out which e-numbers where causeing the problem?,
if I really needed to restrict williams diet to be completely free of e-numbers etc,? as it would be almost impossible to do ( as most of the nut /egg free foods contain e-numbers, esp treat foods, such as kinnerton chocolate )

I also asked if william might have a severe reaction to them?.

I waited a day for a reply as the nurse consulted the docs, and the result.

There are no tests for additives, and they couldnt reasure me that william would not have a severe reaction.

If I wanted to find out which e-number he was reacting to my best bet was to give him a food with one e-number in ( almost impossible to find a proecessed food with only one in!) and try it.

To explain how upset I am, I must mention that there are nearly 500 different e-numbers and colourings . The worst ones are any below 180.

William has alos been suffering the more common reactions to the colourings and addditvies, his eczema flareing up hours after injestion, tummy aches , head aches and is increasingly angry at the world in general, His behaviour wild and uncontrolled.
He does have a big temper , but normally I can talk to him and he is able to listen, the difference with the additives is that he CANT.

I have noticed that as I stopped giving william his hay fever meds,his angry outbursts lessoned, and he was overly sleepy. ( I stopped because of rainly weather)
I went to see my Gp who , when I explained that there are 500 e-numbers appeared stunned. But her only advice was to make an appointment to see her on my own as I appeared upset . and to give william his zyrtec daily to stop any allergic reactions to e-numbers.
She added that I knew more about allergies than she did, and that medical science doenst know that much about allergies.

I gave up , took the prescription for williams eczema and came home.

I have spent some time trying to find out what colourings and additives are in wiliams antihistmine. and the news is not good, the dispensing chemist told me that any reactions he would have to the additives in the syrup would be halted by the anti histamine.
So why give it to him? if the cure is causing the problem?
Am going to try tablets rather than syrup once I have checked that they are OK.
I have reaseached all I can on the internet , and we will struggle on.

I will not make an appointment for the doc, have had enough of GPs fobbing me of as a depressed mother, as I know that I am not,( poosibly offering me antidepressants , thats all they seem able to do!) I am justly angry at being in an impossible situation , surrounded by so called experts who confess that they cant help me and leaving me , a mother who does not have a medical education to make judgements that may risk my sons life.

I am even more angry because I have achieved the best care you can get in the UK for William, Dr g Lack is considered the 'holy grail' for those with allergies.
But at the end of the day rightly or wrongly I feel that william is just an interesting case to them and not a little boy.
They told me that william was a rare child , but thats of little comfort to us as parents.
We are still discovering new allergies, and those well meaning adults who were forever telling us that he would grow out of them , have now been silenced.
Insead of improving over the years I am struggleing with a child who's life , food wise is becoming more restricted.
I am feeling tearful, but thats only frustration at not being able to thump someone at the moment!!!!

YOu know what I really wish for right at the this moment? that I only had one allergy to deal with. Simple just one.
Easy.
I meet parents at the allergy workshops who have never taken there children of 11yrs out to a restaurant, never let them go to a friends house alone, never let them have responsibilty for carring epi-pens, or go on school trips. These children only have one allergy, peanuts.

I am soo jealous of these parents, who are so incredibly short sighted. Whos fears blind them to what they should really be doing with their children.
I wish I could tell them that I would rather be in their shoes than where I am right now.

sarah.

Posted on: Fri, 07/02/2004 - 10:58pm
Anonymous's picture
Anonymous (not verified)

{{{{{{{{{{HUGS}}}}}}}}}}

Posted on: Sat, 07/03/2004 - 12:51am
Anonymous's picture
Anonymous (not verified)

Oh, Sarah, my heart goes out to you. I am one of the fortunate parents who is dealing solely with PA (right now, touch wood) and although yes, it can be frightening, I find it pretty well controllable, if you will.
The only thing that comes close to this for me is Jesse's urology problem. The doctor can't explain it to me because he can't explain it to himself. He's never seen a case like Jesse's before and he's used Jesse's case now to speak about in front of other urologists. It doesn't feel great that your child is something (not someone) doctors have never dealt with before and find it easy to study or want to study.
I know that there were other members posting here whose children were allergic to very specific dye numbers. I'm not sure how they were able to eliminate the dyes and additives from their children's diets.
It's so hard because I know William is also a picky eater guy like Jesse and my soul, when there is so little food for him to choose from, you really must wonder about him thriving.
What is the least number of food additives/colourings you have seen in a food that William eats?
See, here, in Canada, the only place I even found food dye numbers was on shampoo and conditioner and I did discuss this extensively here with Scruffy. As far as food, no, it's not seen, only "colour".
Do you think William is angry because he's getting more allergies rather than some going away?
Oh, just big hugs to both of you. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
At least you had somewhere to come and post where people don't think that you're a crazed Mother (oh, and I do believe they offer *most* women anti-depressants nowadays [img]http://uumor.pair.com/nutalle2/peanutallergy/mad.gif[/img] )
Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
------------------

Posted on: Sat, 07/03/2004 - 5:06am
vienna's picture
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Joined: 10/31/2001 - 09:00

Dear Sarah!
Your words are so near to my heart. Our son, 6 y, has now 15 allergies tested out (peanuts with a 6, most others with a 3-4), plus some other legumes where he began to swell immidiatly, the doctors (!) then did not find it necessary to test those allergies either.... Our youngest daughter is allergic to several nuts.....
Doctors want to subscribe antidepressants to me, my parents think I'm crazy AND gave nut containing things to our children, at last we broke up contact with them, because they began to be a massive danger for our childrens's health. And NOBODY ever helped us, 3 years ago I had to find out every information about PA by myself through the world wide web. Jesk, we are living with PA and every year more allergies since 3 years....
AND my son begins sneazing about 10 times at least short after he gets his Zyrtec, the doctor reacted helplessly when I told him that.
In September he begins with school and we pray that the other parents at least TRY to understand my planned letters to them, that they just should avoid peanuts at the lunchmeals of their children because David could become "very ill" afterward... It's so hard to understand for someone who does not know about allergies what they could cause in such a child.....
It's tearing my heart into peaces.....
Irene from Vienna/Austria

Posted on: Sat, 07/03/2004 - 2:36pm
mae's picture
mae
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Joined: 07/12/2002 - 09:00

sarah - so sorry to hear what you are going through. Sending big hugs your way. Can't even imagine dealing with both the allergy/food additive connection..
Take care [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Sat, 07/03/2004 - 11:21pm
Going Nuts's picture
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Joined: 10/04/2001 - 09:00

Sarah and Irene,
I'm so sorry to hear about what you are going through.
One possibility - do you have compounding pharmacies where you are? They can mix the active ingredients in a medication with different bases, flavors, colors, etc. Perhaps they can mix you Zyrtec without the coloring? Of course, that doesn't take care of the bigger problem, which is the food world at large.
I do know what you are talking about - my friends DD (she is now 13) had [b]wild[/b] reactions to a certain red coloring. Not just when she ingested it, but even if it touched her skin. I remember them having a devil of a time finding a children's shampoo that didn't contain it. Naturally, her MD thought she was nuts (pardon the use of words) until he saw it for himself.
All I can do is send cyberhugs, and hope that you find some relief.
{{{Hugs}}},
Amy

Posted on: Sun, 07/04/2004 - 12:38pm
pjama0502's picture
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Joined: 08/04/2003 - 09:00

Nothing to add, I just wanted to send you my support.
Jen

Posted on: Sun, 07/04/2004 - 9:47pm
williamsmummy's picture
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Joined: 03/26/2002 - 09:00

thank you for your support.
Have decided to just avoid e-numbers below 180.
I am planning to catch up on a little sleep, after this weekend of youth workshops with the campaign.
Then will plunge myself in to a little more research !!
taking it all one meal/snack at a time!!
its comforting to read through the posts, and like william often says , I wish there were no such things as allergies!!
thanks,
sarah

Posted on: Mon, 07/05/2004 - 12:00am
momma2boys's picture
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Joined: 03/14/2003 - 09:00

Sarah, I'm sorry you are having such a hard time. My ds used to have horrible problems with red dye. He would turn into a monster! Just be out of control, mad one minute, then crying the next, hitting, etc. Sometimes he would also get red splotches on is face.
I pretty much got the same response as you....we can't test him for it, just avoid it. The good news is, one day it just seemed to stop bothering him.
I hope the same happens for you, or you at least figure out which ones are bothering him so you can succesfully avoid them.
Good luck to you.

Posted on: Mon, 07/05/2004 - 4:57am
pgrubbs's picture
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Joined: 10/27/2003 - 09:00

Sarah-
Thinking of you.
paula

Posted on: Mon, 07/05/2004 - 2:17pm
rayjay's picture
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Joined: 07/06/2004 - 09:00

Sorry to hear you are having such a trying time Sarah. There is an Australian called Sue Dengate who has done a lot of work on food additives/chemicals etc. You may have already come across her website in your research but just in case you haven't it is [url="http://www.fedupwithfoodadditives.info/."]http://www.fedupwithfoodadditives.info/.[/url] Although it mainly deals with food intolerance, ADHD and asthma it may be of some use as far as which additives are most often implicated in reactions as well as hints on feeding a child when you are avoiding food chemicals as well as food groups such as dairy or egg. Hope this helps.

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