Hello everyone! I have been reading everyone elses letters over a couple of weeks and I have finally got to it and started a letter of my own. I have a son, Sheldon, who has PA. He had his first reaction when he was about 9 or 10 months old, I had given him PNB sandwiches and he came out in hives and was scratching and rubbing at his face. I told our family doctor about it and she told me that he must have an allergy to peanuts and to wait until he is at least 2 until I try him with PNB and when I do make sure that it is only a very tiny bit on my finger nail. He was 2yrs 3 mths when I tried him and in just a matter of seconds he was out in hives,scratching and rubbing at his face and then his face was swelling and he looked like someone had punched him in the eyes as they were so puffed up. It scared the hell out of me because my doctor hadn't told me about anaphylaxis. We took him straight to an after hours surgery where they administered adrenalin and hydrocortisone and then he was taken by ambulance to hospital and had to stay in over night. I felt so guilty for giving it to him and the doctor at the hospital treated me like a villain. I just tell myself that if I hadn't of given it to him then it could of got us by surprise anytime. He hasn't had a reaction for 2yrs and 6 mths as I have garded him with my life. He turns 5 on May 23 and he starts at school that day and I'm already feeling apprehensive as I have been the one that has protected him all this time. Oh well I had better finish this letter now, as it is probably starting to look like a book. I look forward to your replies.
On May 5, 2001
hello, diane. welcome to the boards. my number 3 has stacks of allergys and your experiance with doctors sounds familier to some storys l have heard from friends, l even saw a gp on tv who joked that years ago he was taught to tell parents to rub a nut or pb on the childs gum !!!(ouch!) times are changing slowly, and a good gp will learn with you. shop around ,. the guilt factor is a subject that is a hot topic on these boards and in our home!!. we all have our ups and downs, up after a long gap with no reactions but hit the floor when he does. my son has started school and we have had some problems and its hard, these boards have helped ,someone out there is always one step ahead of you ,and has gone through the same thing. goodbye keep in touch williamsmummy
On May 5, 2001
Thankyou Williamsmummy for welcoming to the boards. It's so good to be able to hear from someone else that has got a PA child as we don't know anyone else with this type of allergy. We have just joined Allergy Awareness Association which has just started an E-mail Support Group at the beginning of this year. I have just recieved a list of e-mail address' for their members. I'll have to ask them if they know about this site. I found it by pure accident. I thought I would just try typing in peanutallergy. com and see what would happen. I was surprised to see that there was such a site. How much are Epi Pens in the UK? In NZ they are $150. Do you have to have a presciption for them there? We don't have to here. I have an Ana-Kit but I have just got an Epi Pen for the school that Sheldon will be going to. I'm going to get myself an Epi Pen too as they look so much easier to use. At the moment there is a shortage of preloaded kits in NZ and they won't have any new stock until July. The Ana-Kit that I have got at the moment expired at the end of March and I was lucky to get the Epi Pen for the school as my pharmacist rang the distributor and it was the last one in town. Thanks again and keep in touch.
On May 5, 2001
hello diane, we are lucky that we can get epi-pens on presciption, good old N,H.S but we are a little unlucky on the hunt for allergists as a country, we have a good one as we live in the south but if you live in the north they seem to be as rare as hens teeth !! the waiting list to see one of these chaps can be from 8 months to 2 years, that is if you have convinced your gp that you need one, its easier with peanut allergy as you are entitled to expert help with any allergic symptom concerning nuts esp peanuts. one in 200 children in the uk have a food allergy and l think at the last count there are only 5 or 6 allergists in the country in the N.H.S. Food labeling is a pain but l think thats a world wide problem, we find that the bakery section of supermarkets a no no, and the choice of biscuits in a whole aisle of them only one or two packets will be safe, because of the wide spread use of nut warning labels. we also have to avoid eggs, kiwi fruit, and now mustard powder in processed foods. ice lollys are another pain my son often has a cheap lolly while the others can eat magmums and mars lollys (as long as they dont smear it all over there brother!!!) of course sweets are difficult we can eat normal smarties but not mini- smarties, but you can eat them in a macdonalds flurry as they dont contain nut traces. that is just a start , l am sure things are the same where you are, if they are not were coming over!!!! goodbye williamsmummy
On May 5, 2001
Welcome Diane, I'm from Canada and we face all the same problems that you do. I thought I would offer a little bit of advice on the school situation. I was so nervous before Taran started school (he's 7 now and will soon be finishing up his 3rd year). Arrange a meeting before he starts with his teacher and principal or headmaster. If they say no, INSIST! My son's school was already experienced with nut allergies before he started there so they thought it was no big deal, why were we worried, etc. But we needed to know that they knew what they were talking about, and what procedures they had in place for our own comfort.
The other thing I did was make sure I carry a cell phone with me at all times. I need to be reached every minute of every day. They needed to know I would always be available. I also make sure that the contact phone number is in his epi-pouch. It gives me a little piece of mind when he is in school, not a whole lot, but a bit. I've been fortunate that he's only had great teachers so far that I trust will be on the lookout for him. Also, if you have some sort of Home and School, PTA, parent advisory council type of thing at the school, PLEASE make sure you join, or at least attend their meetings. In my experience the school takes you so much more seriously when there are problems if you also show up for the good stuff then when you just show up with the bad. It also helps to know what is going on before it happens, and we've caught a few incidents (like selling chocolates containing nuts as a fundraising project) BEFORE they turned into a problem.
Well, looks like I've written a book too...hope some of this helps!
On May 5, 2001
Hi Dianne and welcome! I'm from Canada, and I just about had a heart attack when I saw you pay $150.00 for an EpiPen. I did a quick conversion to Canadian dollars, and it's still a bit of a difference. $150.00 Kiwi dollars is about $100.00 Cdn. and we pay around $75.00 to $90.00 here.
Do you have a medical insurance plan to help you cover the cost? We do and haven't had to pay for an EpiPen yet. I met a woman last year who moved to our town from New Zealand and she tells me that N.Z. has universal dental care, but you have to pay for health care, where we are the opposite - our dentists charge and arm and a leg and we pay for our doctors through our basic taxes.
There is a terrific Australian website for children with anaphylaxis, have you heard of it? It's called F.A.C.T.S. and it seems to be very helpful. I use U.S. resources all the time, so I figure you probably utilize Australian resources once in while perhaps? Anyway, here is the web address so you can check it out if you like:
Good luck and glad you found us! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
On May 5, 2001
Hello to williamsmummy, torontosue and cayley's mom. Thankyou for your responses. I will answer some of the questions that you have asked me. I have never been put onto an allergist so we have never seen one. I have found out most of my information about PA from books and the net. I have had a few meetings with Sheldon's school and they have been very understanding. He is the 1st child they have had with PA at the school. They have drawn up an emergency plan and they have banned all peanut products from his classroom. I'm also going to look into getting myself a cell phone so that they can reach me anytime. His Kindy was very understanding too and banned peanut products. We don't have medical insurance as we can't afford it, but I have complained about the price of Shedon's medication to my local member of parliament. She said that we maybe able to get a Child Disability Allowance for him. We applied for this last week and we should find out this week if he gets it. My fingers are crossed. Dental care is only free for school children and children under 6 are free at the doctor's. Can any of you tell me what lecithin is please? I'm lucky because our doctor is just across the road from the school, so I have told the school to take him straight there after they administer his adrenalin. Keep in touch.
On May 5, 2001
Epipens are about $70 in Australia and you can buy them without a prescription.
I cannot get them here in Malaysia so I get my brother to buy them and post them to me from Australia. Surely as a kiwi you have friends or family in Australia who can send you some?
On May 5, 2001
Hello williamsmummy, torontosue and carley's mom. Thankyou for your replies. We have never been put onto an allergist so we have never seen one. I have had a few meetings with the school and they have been very understanding. Sheldon is the school's 1st child with PA. They have banned all peanut products from his classroom and they have drawn up an emergency plan. I'm very lucky because our doctor is just across the road from the school. If they have to administer his adrenalin then they are to take him straight over to our doctor. His Kindy also banned peanut products. I'm also thinking about getting a cell phone so that they can contact me if he has a reaction. We don't have medical insurance because we can't afford it. I complained to our local minister of parliament about the price of his medication and she told me that he could be intitled to a Child Disability Allowance. We applied for this last week and we will find out this week if it's a yes or no. My finger's are crossed for a yes. Dental care is free to all school children and children under 6 are free at the doctor's. Take care all.
On May 6, 2001
Hello Simon, Thankyou for telling me that. Yes my husband's brother lives in Brisbane and his mother and father are planning a trip there soon so I might get them to bring a couple back. I'm wondering why NZ and Aussie don't have to have prescriptions for this type of medication. I might just send my brother inlaw an email about it now. Thankyou so much. [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]
On May 6, 2001
hello, lecthin over in the uk is a binder prouduct in prosessed foods , if its labeled soya lecthin we can eat it, but if its just lecthin we avoid it because it may contain egg, in fact l find food shopping more restricting on the egg front it seems to be everywhere 20 differant names to remember so far dairy is ok, thats 26 !!!! which reminds me l must get my eyes tested all that small print.... williamsmummy
On May 7, 2001
The cell phone is a really great idea - I can't count the times my kid's school nurse has had to reach me when I have been out of the house!
In addition to having a meeting with your son's school, have a written plan which includes his name, all allergies, any meds he takes, emergency numbers and symptons to look out for. Also have a plan of action like, "If hives appear, give Benadryl and call mother immediately. If trouble breathing, administer Epipen, call 911 (the emergency # in most of the US)) and mother immediately." Be VERY specific - you can't count on people to think clearly under stress. Also, have his color picture prominently on his action plan in case there is a substitute teacher.
Good luck to you - I know how scared you are now. I freak out at the beginning of every year, but we haven't had an accident at school in 2 years. Doesn't stop me from worrying though! [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]
On May 12, 2001
Hello Going Nuts, Thankyou for your reply. I had a bad day on Thursday. I took a magazine from allergy awareness association into my son's school for them to photo copy a page about how to use the epipen. His teacher is very understanding and she photo copied several copies and then she told the head of the juniors and she turned on me saying that everything that I'm getting off the net is a load of rubbish. She had me in tears, not to mention very embarassed as there were other teachers, parents and children there too. My husband was not impressed when I told him and he rang the school pricipal and said that he didn't like his wife being upset like that. He was really good about it all and even asked questions about Sheldon's PA. His teacher rang me lastnight, she is so understanding about this and I know I can rely on her as she has even said that if I need to talk that I can ring her at home. I couldn't ask for a better teacher. Her husband also works at the school and has taught both my daugters so I hope that Sheldon gets him too as he progess's through school. I'm so glad that I can talk to you other PA parents on these bb as you all know what it's like to have PA child and some times you can feel like everyone thinks your an alien. I feel better on this here Saturday night as I am having a couple of bottles of wine to celebrate mothers day tomorrow. I think I deserve it. Cheers to all you other PA mothers out there. Take care all and have a wonderful mothers day. Dianne.
On May 12, 2001
OOPS I hope it is mothers day over there this time of year.