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Welcome Guest. Please Login or Register. Dec 27, 2009, 8:52am
Re: H1N1 Flu Vaccine Latest in Canada « Result #3 on Nov 14, 2009, 12:54pm »
Hi Hem,
We've heard from several members who got the H1N1 vaccine. Ages ranged from 4 years old to 60+. All reported they were fine with no complications. They all took extra meds before leaving to get the shot and had Benadryl and Epi Pen on hand in case of reaction afterwards.
Arm will be sore, but that is standard for everyone getting this vaccine.
Re: H1N1 Flu Vaccine Latest in Canada « Result #6 on Nov 4, 2009, 1:12pm »
Help avoid the flu - H1N1 or regular flu. These tips match what Canadian nurses shared with me a few weeks ago so I'm posting it in hopes it helps someone.
The following advice, given by Dr. Oz, makes a lot of sense and is important for all to know:
The only portals of entry are the nostrils and mouth/throat. In a global epidemic of this nature, it's almost impossible to avoid coming into contact with H1N1 in spite of all precautions. Contact with H1N1 is not so much of a problem as proliferation is.
While you are still healthy and not showing any symptoms of H1N1 infection, in order to prevent proliferation, aggravation of symptoms and development of secondary infections, some very simple steps, not fully highlighted in most official communications, can be practiced (instead of focusing on how to stock N95 or Tamiflu):
1. Frequent hand-washing (well highlighted in all official communications).
2. "Hands-off-the-face" approach. Resist all temptations to touch any part of face (unless you want to eat or bathe.)
3. *Gargle twice a day with warm salt water (use Listerine or Hydrogen Peroxide if you don't trust salt). *H1N1 takes 2-3 days after initial infection in the throat/ nasal cavity to proliferate and show characteristic symptoms. Simple gargling prevents proliferation. In a way, gargling with salt water has the same effect on a healthy individual that Tamiflu has on an infected one. Don't underestimate this simple, inexpensive and powerful preventative method.
4. Similar to 3 above, *clean your nostrils at least once every day with warm salt water, or hydrogen peroxide. *Not everybody may be good at Jala Neti or Sutra Neti (very good Yoga asanas to clean nasal cavities), but *blowing the nose softly once a day and swabbing both nostrils with cotton buds dipped in warm salt water is very effective in bringing down viral population.*
5. *Boost your natural immunity with foods that are rich in Vitamin C (Amla and other citrus fruits). *If you have to supplement with Vitamin C tablets, make sure that it also has Zinc to boost absorption.
6. *Drink as much of warm liquids (tea, coffee, etc) as you can. *Drinking warm liquids has the same effect as gargling, but in the reverse direction. They wash off proliferating viruses from the throat into the stomach where they cannot survive, proliferate or do any harm.
Re: H1N1 Flu Vaccine Latest in Canada « Result #8 on Oct 23, 2009, 7:30am »
Hi All,
I do what Carrie said (take extra meds, wait a while after the shot before leaving) but also continue taking medication for the period allergic reactions have occurred. Some vaccines it's a few days and other vaccines it could be 20 days or longer. Also, several vaccines have two allergic periods...immediately after getting the shot and a second one 3-5 days later. I tend to get a reaction (usually rash and itch) three to five days later and tend to have my BP fluctuate a bit for several days but both are helped with benadryl.
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Re: H1N1 Flu Vaccine Latest in Canada « Result #9 on Oct 23, 2009, 7:25am »
Hey Carrie, It is CBC news that is reporting not to get this flu shot if you have an allergy to eggs as it contains egg!! I think it's like playing with fire either way don't get the shot yikes....do get the shot yikes.....at least if you get the shot and have a reaction that can be dealt with don't get the shot and you don't know if your one of the ones who's immune system can't take it, it's already here in Manitoba [another reason to move here]. Other than the egg component CBC reported it contains oil I think CBC said they have a list of ingredients on their website which of course I can't remember right now. Anyhooooo, it's going to be a longer than usual winter. Take care, Delina
Re: H1N1 Flu Vaccine Latest in Canada « Result #10 on Oct 22, 2009, 6:02pm »
Hi Delina,
I have the same egg sensitivity. I've had the flu shot in the past and I was fine. This particular vaccine, the H1N1, may not have egg in it, but other components may be troublesome.
Best idea is to give extra medication before and after the shot and stay there for 15-30 minutes to ensure all is okay.
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Re: H1N1 Flu Vaccine Latest in Canada « Result #11 on Oct 22, 2009, 5:38pm »
Hey Carrie, I have heard that anyone allergic to eggs needs to avoid the shot, do you think this applies to masto patients as Emma can tolerate eggs from time to time, just depends...you know. Thanks, Delina
OTTAWA — The long-awaited H1N1 vaccine, Canada's principal defence against a "second wave" of swine-flu, was poised to deploy across the country Wednesday after winning the approval of the federal government.
That approval clears the way for the province-by-province administration of the vaccine. Here's the schedule for those provinces that have announced their vaccination plans:
In New Brunswick, public health officials expect to start administering swine flu vaccine Thursday, with health-care workers, First Nations people and school-age children first on the list. The province has received more than 83,000 of 600,000 doses ordered.
In Nova Scotia, where 1.4 million doses of the vaccine are on order, needles start going into arms next week, with the priority on high-risk groups like people under the age of 65 with chronic conditions, health-care workers and children six months to less than five years of age.
Pregnant women are also a high-priority group across Canada, but many doctors recommend they wait a few more weeks for a version of the vaccine that has no adjuvants or compounds to boost the immune system's response.
Groups that are at high risk for seasonal flu can receive both the seasonal and swine flu vaccines at the same time. Shots given together will be administered to opposite arms.
In Prince Edward Island, doses of the vaccine will be available starting next week. Aboriginals, health-care workers, people with chronic conditions under 65 and children six months old up to the age of school entry are among those considered a priority. Mass public clinics are scheduled to begin Nov. 16.
Mass immunization clinics in Newfoundland and Labrador will start offering the vaccine as early as Monday.
Ontario already has 722,000 doses of vaccine, which will be offered starting Monday to certain groups that are more vulnerable to contracting swine flu: adults under the age of 65 with chronic conditions, health-care workers, caregivers for high-risk groups, people living in remote and isolated communities, pregnant women and healthy children six months to five years of age.
Because of an increasing number of cases in Ontario, pregnant women who either have underlying conditions such as asthma or diabetes, or are past the 20th week of their pregnancy, should get vaccine as soon as possible, said Dr. Arlene King, Ontario's chief medical officer of health.
The Manitoba government says as of Monday, clinics will be set up in targeted areas offering free vaccinations to those first on the priority list: preschoolers, aboriginals, people with chronic medical conditions and others who are deemed most vulnerable.
The province will also fly in teams of health professionals to remote northern reserves that were hit hard by the flu's first wave last spring. Dozens of people from the Island Lake region were hospitalized, even though the area has just 10,000 residents.
In Quebec, where an elderly woman was the province's first casualty of the so-called second wave, vaccination is set to get underway on Monday. The province is spending $115 million to administer a total of 11.5 million doses, and distribution has already begun.
Alberta is expecting to have 400,000 doses on hand by Monday, and will begin its inoculation program then, health officials said. The province is urging those in the high-risk groups to seek the shot as soon as possible, but won't be screening recipients.
British Columbia gets underway "early next week" for women who are over 20 weeks pregnant, people under 65 who have chronic health conditions, and members of the First Nations. The province currently has 230,000 doses of vaccine on hand.
The program will expand to children and infants and health-care providers in the second week, while everyone else can get in line the following week.
H1N1 Flu Vaccine Latest in Canada « Result #13 on Oct 21, 2009, 12:26pm »
H1N1 Flu Vaccine Latest in Canada
*Note: If you end up in hospital, emergency, ambulance, long term care facility (visiting etc.) or even just at your doctor's office this winter, they may insist you be given the vaccine if you haven't had it already. If you encounter that situation, ask for or take (if you have it on hand) extra meds (Benadryl especially) before and after the shot. Tell them they have to monitor you closely and stay there for at least 30 minutes following the vaccine administration.
21/10/2009 12:43:19 PM CTV.ca News Staff Health Canada has approved the H1N1 vaccine, meaning the first Canadians to take part in Canada's largest-ever immunization campaign could get their shots as early as the end of the week.
"I am happy to say that today Health Canada has authorized the H1N1 flu virus vaccine," Health Minister Leon Aqlukkaq announced to reporters Wednesday.
"This means the adjuvanted vaccine has been judged safe and effective for use in Canada by the manufacturer, GlaxoSmithKline, as well as by Health Canada regulators," she said.
"...I encourage all Canadians to get vaccinated, since there is simply no better way of fighting the H1N1 virus."
Two million doses of the vaccine have already been shipped to the provinces and territories, but health officials had been waiting for regulatory approval before they were able to give the go-ahead.
The government now aims to ship around 3 million doses a week to the provinces.
Aglukkaq reiterated that all Canadians can access the vaccine, since the federal government has ordered 50.4 million doses.
Another 1.8 million doses of the vaccine without an adjuvant, a compound that boosts immune system response, are also on the way. But the timing of when that will be available remains unclear; the unadjuvanted vaccine is being manufactured, packaged and shipped separately.
Canadian clinical trials of the vaccine are still underway, and the results won't be available until next year. So federal health authorities have relied on data from clinical trials done on the same vaccine in Europe. Those trials have found the vaccine safe.
The adjuvant used in Canada's swine flu vaccine, AS03, has also been tested in about 45,000 people around the world using a "mock" H5N1 vaccine. No significant safety concerns were detected, Health Canada reports. Canada has never approved a flu vaccine containing an adjuvant before.
The Canadian clinical trials are expected to add to the safety and effectiveness data, by focusing on the vaccine's effects in select population groups, such as First Nations, people who are HIV-positive, children and pregnant women.
Because some reactions from vaccines are so rare they arise in only one in a million cases, the final picture of the vaccine's safety won't be clear until after the immunization program is underway, Health Canada has acknowledged.
Dr. David Butler-Jones, Canada's chief public health officer, says that while pregnant women are encouraged to receive the vaccine without the adjuvant, the risks of the adjuvanted vaccine to pregnant women and their babies are only theoretical, whereas the risk of swine flu to pregnant women are real.
"The risks to pregnant women from contracting H1N1 are much, much higher than any theoretical risk posed by adjuvanted vaccine," he said earlier this week.
About 4,700 people worldwide have died of H1N1 to date, including 83 deaths in Canada. Another 300 or so Canadians have required care in intensive care in hospital.
The Public Health Agency of Canada says everyone aged six months and older should get the vaccine, but those who will benefit most, and those who care for them, include:
* People under 65 with chronic health conditions * Pregnant women * Children aged six months to less than five years * People in remote and isolated communities * Health care workers involved in the delivery of essential health care services * Household contacts and care providers of persons at high risk who cannot be immunized
The vaccine will be distributed by the provinces and available through flu clinics offered by local health units, which will decide on costs, if any, to patients.
Adults will need one dose, but children under the age of 10 will need two, just as they do with seasonal flu shots. The vaccine is not intended for infants younger than six months.
Thousand Faces of Mastocytosis (download article) « Result #14 on Sept 23, 2009, 10:23am »
Canada Mastocytosis Support provides this article for free download to all registered members. It is in PDF format. Click the Attachment link at the end of this post to download. For non-members, here is the direct link to the article:- http://www.utsc.utoronto.ca/~womenshealth/womenshealth/contents8.2.html Just scroll down to the article entitled "Thousand Faces of Mastocytosis".
This paper was written by Aysan Sev'er, Dr. Gary Sibbald, and Carrie D'Arville.
This paper was published as part of a journal published by University of Toronto. The full journal is available for free, for viewing and download, at this link:- http://www.utsc.utoronto.ca/~womenshealth (Go to 2009, Vol. VIII, issue 2)
Contact canadamasto@gmail.com if you have questions, comments, or need further information about Mastocytosis.
Re: Language Translation Supporters « Result #16 on Jun 16, 2009, 6:11am »
I'm glad you enjoyed the joke! Chinese puzzle! That's a good one!!!
Mike, believe it or not, your challenges with doctors is international! I live only 2 hours outside of Rio de Janeiro and nobody has heard of mastocytosis! A couple of my doctors remember hearing about it in med school, but very few have ever seen a case. I saw several doctors in Rio who'd never seen a case but had remembered about it and others who looked at me as though I was a Martian, only a Red one and not Green! hahaha! Rio is a huge city! And, my case is challenging doctors who have seen it before to the point that they are telling me that I no longer can stay in Brasil but must return to the United States and seek out Dr Metcalfe at the National Instutute of Health, the government's research facilities. Being an American I thankfully have that option, but I don't know that I have the money to get there! Yet, I've gone as far as they can take me here in Brazil because there are no higher authorities on this disease. I'm already working with one of the highest!!! All of my exams point to mastocytosis, but we can not find it and we can not get all of the exams that can confirm it because there are exams that are not being done in Brazil. The prostaglandins test is not available and perhaps I've managed to find it but only with researchers! So I fully understand your dilema, but this happens in the US and Canada as well. Brenda can tell you her troubles, but other patients like Brenda have said that they too have had problems because they don't live near research centers or study centers and therefore are forced to spend money they don't have travelling to find higher authorities too! This is the problem of having a rare disease - the doctors who know about it are more rare than the patients themselves and that says a great deal! Yet, this is where you need to invest time and energy in learning about the disease so that you can take better care of yourself. Remember, the important thing about this disease is avoiding the triggers. The more you can avoid them, the calmer your system stays and that's good. Unless you show that you have the aggressive form of the disease, there is no treatment other than prophylaxis. Prophylaxis, in case you don't know, is that of treating only the symptoms. The only real treatment for masto is chemotherapy and that is only done with those patients who have the aggressive form and are already dying because of the disease, and even then, the doctors have not really been able to sucessfully treat these patients for they've just not been able to discover a really good treatment for these patients. The masto has become a cancer for them, and only some cases are they finding adequate treatment. Fortunately very few mast patients have the aggressive form and most of us can live their normal life spans, the patient won't die from the disease itself - at least this is what the researchers believe. This is why we all just take medications like Ketotifen and antihistamines, to keep our symptoms under control and try to give us a somewhat normal life. And this is what we all go through no matter where we live in the world - confused doctors is the norm for us all!
I LOVE BALALAIKA!!!!! I had the priveldge of seeing the Russian Balalaika orquestra in Washington DC when I was a girl, back in the 1970s! Due to the Cold War, it was a once in a lifetime presentation and I was fortunate to see it. I have a record of this orquestra and my favorite song is Moon Over Moscow~!!! The Balalaika is one of my very favorite instruments - Really! Yet, I can tell you I never thought I'd see a bear walking down ANY street be it in Russia or Canada playing a Balalaika!!! Yet, I'll bet you think that all Canadians have an igloo in their back yard with a Moose parked in their driveway! I always thought that anyway! haahahah! Well, I've got to go, the grass on the roof of my hut needs adjusting and my dirt floor needs a good sweeping and then I'll go lie down in my hammock, for here in the middle of the Amazon forest, the monkeys get a bit abusive if you don't keep the place tidy!! And the Tucans really put up a fuss! Oh, by the way, I live in a more "modern" Brazil, we figured out how to do digital jungle drums and so it's not so hard to send these messages anymore! hahahahahahahahahaha! Oops, watch out, here comes a head hunter, you better duck before you lose yours!hahahahahahahaha!
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Re: Language Translation Supporters « Result #17 on Jun 16, 2009, 3:15am »
To lisathuler: with the Greek language, we understood the joke! In Russian, when looking at unfamiliar characters, one would say "Chinese puzzle", or "abracadabra". Also thanks for kind words and desire to help! But it is very difficult to find understanding in Russia in the opinion of doctors - mastocytosis is a mysterious illness here, many doctors get to know about the existence of mastocytosis for the first time, let alone its treatment. All the more, all prominent experts who can help are in Moscow - the capital of Russia. And, most likely, treatment or treatment attempt will cost much money that I don't have. I live in provincial Kostroma, there are no mastocytosis experts here. By the way, all of you still think that bears with balalaikas go on streets in Russia?
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Re: Language Translation Supporters « Result #18 on Jun 16, 2009, 2:39am »
To lisathuler : Спасибо,шутку с греческим языком мы поняли!По русски мы бы сказали глядя на незнакомые буквы - китайская грамота,или абракадабра. Так же спасибо за добрые слова и желание помочь!Но в России очень сложно найти понимание в глазах врачей - у нас мастоцитоз является загадочной болезнью,многие врачи впервые узнают об существовании мастоцитоза,не говоря уже об его лечении.Тем более все крупные специалисты,могущи е помочь,находятся в Москве - столице России.И,скорее всего,лечение или попытка лечения будут стоить больших денег,которых у меня нет. Я живу в провинциальной Костроме,у нас здесь специалистов по мастоцитозу нет. Кстати,вы всё ещё думаете,что в России по улицам ходят медведи с балалайками?
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Re: Language Translation Supporters « Result #19 on Jun 15, 2009, 11:27pm »
Миша, мы, у кого тоже эта страшная болезнь, полностью понимаем не только что мучит тебя, но и как трудно жить с этим. ты явно боец, и это замечательно. мы тоже. пожалуйста, задавай любые вопросы. в этой группе есть мужчины, и хотя женщины более разговорчивы и высказываются чаще, мужчины тоже принимают участие. все что нужно - просто задать вопрос. бывают моменты, когда только мучина может ответить на вопрос другого мужчины - как жить и как понять что это за болезнь - вот чем мы занимаемся. задавай вопросы, приятель, поможем чем можем, чтобы сделать жизнь немного легче
Re: Language Translation Supporters « Result #20 on Jun 15, 2009, 3:01pm »
Welcome Mike and Welcome Keugene! How wonderful that you both can be a part of us! We hope that through you, Keugene, that Mike will be able to find more help and understanding! As to the "Greek" comment, that is a joke that many of us who speak English will say of any other language, be it a spoken language, or even technical information like science terms or mathematics, or any kind of information that seems strange and difficult to understand is called. So much of the medical terminology, even though it is in English, we will also call "Greek" for its incomprehensible to us! I've often told my doctors, when speaking in Portuguese with them, for I live in Brazil and speak two languages, I've asked them to translate the "Greek" for me and they laugh and call it Greek too!! So, it's also a joke here in Brazil and in Portuguese!!! So, from now on, you can call English "Greek" and all of the medical info "Greek" too, until you learn to be more "fluent" in the "Greek"!
Mike, we who have this crazy disease fully understand not only what ails you, but how hard it is to live with it! Obviously you are a fighter and that's wonderful! We are too. Please do not hesitate to ask any questions you feel you need. We have men who are a part of this group and even though the women are more "chatty" and speak up, the men also will take part and all you need to do is pose your questions. There are times that only a man can answer another man's questions, but as to living and understanding how this disease works, that is something we all are learning as time goes on. Ask away, Buddy, and we'll do what we can to help you learn to make life a bit easier!
Re: Language Translation Supporters « Result #21 on Jun 15, 2009, 1:03pm »
Absolutely. Anything you want to translate and post please don't hesitate. We never know who will join and need the information. You're sort of leading on helping Russians, which is excellent.
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Re: Language Translation Supporters « Result #22 on Jun 15, 2009, 9:28am »
as step one, I'd like to translate the list of foods allowed and restricted form THE DIET (or Guidelines) FOR MASTOCYTOSIS - it is partially done for him, then I'd like to post it here
Re: Google Translation for entire forum/website « Result #23 on Jun 15, 2009, 8:11am »
Thanks so much Keugene. If you want to create a thread with the German translation too, please feel free. Every member can post anywhere so don't hesitate.
Re: Language Translation Supporters « Result #24 on Jun 15, 2009, 8:10am »
Thanks Keugene. I really hope Mike finds some answers to take his doctors on this forum. I don't know Russian language, but if there is anything specific he needs answered, please let me know and I'll find the appropriate research articles.
Thanks so much for joining. If it helps, masto patients worldwide struggle to find treatment, get it working properly for their individual case, and then to find and keep a doctor close to home. Worldwide, individuals and groups are working to raise awareness. Hopefully, it will help our friends in Russia and elsewhere.
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Re: Google Translation for entire forum/website « Result #25 on Jun 15, 2009, 7:20am »
Of course, it's much better to have it translated by a real person as bkit said. I could now and then render help in translating from Russian and German. My ICQ number is 467285035.
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Re: Language Translation Supporters « Result #27 on Jun 15, 2009, 7:12am »
Yes, it's Russian. He writes his name is Mike, he is 39, he is from Russia. He's ailing from mastocytosis. His skin is covered with brownish-red spots. As time goes by, they grow in number. There is a big problem in Russia even with making diagnosis - for 3 years he didn't know what was happening to him. He knows the diagnosis now but he is none the better for it - the deease is incurable. He seeks help from people who can help
Re: Claudia & Sofia « Result #29 on Jun 14, 2009, 5:49pm »
TERMINEI!!! UFA!! Claudia, as outras nao vou traduzir, pois foram comentarios bobinhos, pois isto é uma novidade para o pessoal desse site e sao comentarios a respeito de usar outras linguas e os tradutores do internet, etc. Isto daria muito trabalho para mim e nao tenho tanto tempo que posso aproveitar do internet. Entao achei melhor para eu deixar os comentarios por fora. O importante é a informaçao que passaram para a gente.
Agora, toma cuidado com esta informaçao, pois lá eles tem coisas que conseguem fazer que a gente nao consegue. Tambem, certos remedios para eles nao sao tao caros quanto sao para gente. Ai, vai usando seu bom senso e veja o que seja possivel.
Este tratamento de PUVA e o artigo que te mandei é algo que nao sei se é disponivel em lugares longe de Sao Paulo! Tem coisas que até aqui no Rio a gente tem que viajar para Sao Paulo, entao tem que pensar MUITO antes que voce começa querer coisas que noa tem acesso. Alem disto o PUVA é considerado controversial, pois existe um risco de cancer de pele com ele e os medicos estao discutindo nisto! Nao adianta voce fazer um tratamento para uma situaçao TEMPORARIA e acabar matando sua filha mais tarde na vida por causa dos tratamentos que ela tomou na infancia! Tem que pensar deste lado! Por isto é muito importante que voce pensa bem e pesquisa e estuda todos os lados, pois por enquanto pode aliviar a vida, mas será? Cada caso é um caso e seu melhor parceiro é seu medico. Se voce nao fica satisfeito com ele, troca de medico até se consegue um que vai se investir e trabalhar para melhora a situaçao da sua filha! Lembra, Claudia, mastocitose na criança em 98% dos casos SOME COMPLETAMENTE antes da sua filha chegar ser adulta! SOFIA SERÁ CURADA DISTO!!!!!! Seu trabalho é para ajudar ela viver a vida mais normal e saudavel possivel até entao! Entao usa sua cabeça, seu bom senso, voce e seu marido juntos, e aos poucos vai chegar lá!
Re: Claudia & Sofia « Result #30 on Jun 14, 2009, 5:39pm »
Olá Carrie,
Stephanie, nascido em 16/11/07 diagnosticado com Mastocitose Cutanea Difusa (do nascimento).
Sou Maria com a filha Stephanie, estou usando o computador da minha mae para responder a pergunta a respeito de comida, etc. Tenho muito sorte em que Stephanie nao se mostrou alergias de comida apesar dela ter envolvimento cutanea extensiva. Mas, outras crianças no grupo se mostraram reaçoes para varios coisas. Tenho visto que com Mastocitose tudo mundo sofre de coisas diferentes e que uma coisa que afeta um será tudo bom com a outra. Algumas coisas tem que evitar como o corante de comida amarelo no. E110 - é um corante ruim para a maioria delas mas infelizmente está usado em alguns remedios. O regime de remedios para Stefanie quando estava pior foi:
2.5 mls Cetotifeno 2x ao dia 2.5 mls Claritina (loratadina) 2x ao dia 5mls Cemetidina (tagamet) 4x ao dia (é importante para fortelecer o mucose do estomago e evita sangramento do estomago) 2.5 mls Ucerax 2x ao dia (nao posso lembrar o outro nome desse hidrocycide?) (* nota - Claudia, antes de que voce vai comprando qualquer remedio desse, confirma primeiro com seu medico! O pessoal desses sites tem a tendencia para trocar os nomes de remedios, mas eles nao podem comprar NADINHA lá sem um pedido medico. Aqui a gente tem muito mais liberdade do que eles, mas isto pode ser MUITO PERIGOSO! Estes remedios nao sao brincadeira, especialmente nas quantidades que o paciente desta doença toma. Eu tomo antihistaminicos bem acima do que os medicos normalmente receitam, porque com esta doença a gente libera muito mais histamina do que o paciente normal. Meus medicos espantam quando perguntam quantos e quais pois nunca viram um caso como eu antes. Mas, é aquela coisa que expliquei, estamos fazendo um overdose de histaminas e as quatidades altas de antihistaminicos é para combater e trazer equilibrio ao nosso sistema. Mas, eu nao saio comprando cada coisa que os outros pacientes toma, eu sempre converso com minha medica para direçoes dela e segue muito bem as instruçoes. Eu recomendo que faça igual a eu, por favor.)
Eu tambem aplica 4% cromoglicato de sodio ao pele 2x ao dia (Altoderm - tenho um artigo a respeito disto se quiser)
Stephanie nao consegue tomar o Cromoglycte de Sodio oralmente, outras crianças se apresentam com halucinaçoes (caras nas janelhas!) e tremores a noite enquanto outras crianças ficam bem.
PUVA é o fator que mudou as nossas vidas - tenho um artigo que acho é brasileiro (se nao espanhol) - vou mandar num email.
Se precisa de outra informaçao, nao espera e pode perguntar.
Meu conselho a respeito de comida é: Prova somente um tipo de comida por dia, dá somente isto por uns dias. Guarda um jornal de comidas introduzidos e qualquer reaçao.
Eu vou viajar para Espanha para o 1o Conferencia Internacional de Mastocitose semana que vem onde eu vou encontrar com Dr. Escribano e Dra. Mariana Castells que sao autoridades de Mastocitose. Eles estao aproveitando do historico da Stephanie nos apresentaçoes (ela está ficando famosa!). Eu abri um Facebook chamado "Apoio para Stephanie" one pessoas do mundo inteiro podem perguntar, veja fotos do envolvimento cutanea e as melhoras. Medicos Ingleses estao escrevendo a respeito do caso dela nos jornais de medicos enquanto falamos pois a Stephanie é o primeiro bebe inglesa passar por PUVA.
Pode me perguntar qualquer coisas - nada é taboo.
Boa Sorte, Claudia, Mastocitose nao é somente uma doença, é um lugar e é um lugar muito sozinho e por isto estes blogs sao tao importante.
Re: Claudia & Sofia « Result #31 on Jun 14, 2009, 5:14pm »
Oi Lisa, Sou Dayna,
Minha Rachel foi diagnosticada as 9 meses, mesmo que eu SABIA que algo estava de errado antes disto.... mas tenta convencer uma pediatra que nunca ouviu nada sobre urticaria pigmentosa para que pudesse dar uma referencia para uma dermatologista (Claudia, lá em Canada e no EUA, o pessoal dependem de um medico para consultar com outro!) WRT( nao sei do que significa!) reaçoes alergicas as comidas....isto pode mudar de um dia para o outro. As vezes Rachel reagiu aos morangos e no dia seguinte nao reagiu. Rachel tomou o remedio Cetotifeno que é a forma generica de Zaditen, em liquido que ela engolia... mas só que ela vomitava depois e perdiu a apetite, entao eu desisti de dar para ela. A coisa mais importante é de nao tratar ela como diferente do que qualquer outra criança. Mesmo que parece tao dificil, nao trata ela com carinho demais da conta ou isto vai isolar a criança de socializaçao normal. Rachel agora frequenta CA e tem muito amigos...porem, esta doença nao atrapalhou ela e nem eu permiti isto acontecer. Lisa, talvez voce vai querer informar Claudia a respeito do creme eu utiliza para RAchel...eu mistura.
1 colher de cha glicerina - 1 tsp glycerine 1/4 xicara de Vanicream (creme para remover manchas) ou outra loçao grossa 1/4 cup of Vanicream or other thick lotion 5 tubos de Gastrocrom (remedio bem caro) - 5 tubes of Gastrocrom
2 colhers de cha glicerina - 2 tsp glycerine 1/2 xicara de Vanicream ou outra loçao grossa - 1/2 cup of Vanicream or other thick lotion. 1 garrafa de Nasalcrom - 1 whole bottle (0.44 fl oz size – 13ml) of Nasalcrom
Cetafila, uma loçao hipoalergenica vendido comercialmente (nao precisa de pedido medico)Cetaphil, a commercially available hypoallergenic lotion
Eu pessoalmente uso Sulfato de Cromolyn, abri as capsulas, e por ser de base de sodio, eu soca o pó e depois adiciona a glicerina e o creme. Isto remova a coceira na hora e providencia alivio na hora. Isto funciona para qualquer pessoa, até com UP. Eu espero que é uma ajuda....Dayna.
ps - Claudia, eu nao sei se a gente tem estas ingredientes aqui no Brasil. Vale a pena de tentar procurar para se mesmo, mas tambem conversa com sua dermatologista. Claudia, aqui a gente tem loçoes grossas e outras marcas que voce possa fazer jeitinho. Mas os remedios é outra coisa. Conversa com seus medicos pois tem que ter meios para lidar com isto. Seja corajosa, querida, pois eu acredito que consegue criar meios para se virar! Deixe a gente saber como que fica!
Re: Claudia & Sofia « Result #32 on Jun 14, 2009, 4:42pm »
Data: 12/06
Claudia, Oi, I nao posso falar muito, pois tenho de buscar minha neta da creche. I vou entrar mais tarde com mais um pouquinho de informaçao. Eu somente quis dizer que quando minha filha estava aprendendo a respeito de mastocitose I lembrei ela falando a respeito de um brasileirinho quem recebeu o tratamento no Brasil (PUVA eu acho) e acho que funcionou. Desculpe-me por ser tao indefinido, mas vou adicionar informaçao mais firme mais tarde. Mollymoon
Russian Translation Support « Result #33 on Jun 14, 2009, 12:17pm »
Доброго времени суток всем!Меня зовут Миша,мне 39 лет,я из России.У меня мастоцитоз,слава богу пока не системный.Кожа густо покрыта буровато-красными пятнами.Их становится со временем больше. В Росси большая проблема с даже с постановкой диагноза - я три года не знал что со мной происходит.Теперь диагноз я знаю,но мне от этого не легче - лечения моей болезни нет. Прошу помощи у людей,которые могут это сделать!
Re: Claudia & Sofia « Result #34 on Jun 13, 2009, 7:01pm »
I wish I could go too!! I've never been to Spain..... wasn't there some song in the 70s that had a phrase like that?! Yet, when I got online to see what the town of Toledo looked like, it sure did make me want to hope a plane on over there!!! And now that my house feels like a refrigerator....even more so! It's about 55F or 18C and our houses have NO HEATING!!! And because the houses are designed to keep the heat out, I've got concrete based floors with slate on them and brick walls covered by stucco! It's WONDERFUL in the Summer, but in the winter we have to pile on the blankets!!! Yet, I'll tell you it sure beats the heat we had this summer!! Whew!!! Yet, that's here near Rio, this little girl, Sofia, who lives in Rodonia lives in a state that is in the Amazon River Basin and it's HOT and MUGGY all year round! Yikes! The first thing I told Claudia was make a switch to cloth diapers cause they are cooler and to try to help her keep her body temperature as close to normal as she can, cause that's a sure trigger!
Thanks for all of the input! I'm going to translate it and stick it here so that she and others can see it! I hope I can do it by tomorrow! Thanks, everybody for reaching out to those who can't understand English! We have a tremedous benefit by most of the literature being in English, imagine how much harder it would if we couldn't read it all?!!!
Re: Google Translation for entire forum/website « Result #35 on Jun 13, 2009, 4:06pm »
Those translators can be a lot of Fun!!! The translations of God in Portuguese will sometimes read it and then translate it as Codfish! That's because the word for Codfish, or as we will sometimes use it, COD looks a lot like GOD depending upon the typeface!!!! So, the Lord Almighty Codfish Said....!!!!!! It gets to be a real riot for my husband who is a protestant minister, cause he does a lot of translation of relegious texts! The whole croud of us will break down howling about the many mistakes the translators can make, but you are TOTALLY right, Carrie, cause by identifying a language that seems similar, it will spark interest and hope and then that person will seek out someone who can read it. This is what I've seen happen time and time again for I've had plenty of people seek me out to help them with such things. So this is truly how the situation works. So, I think it's a very valid ideia of putting some things out there for people to see and spark their interest!! Good use of them neurons kiddo!
afftobus Between 0 and 50 Posts! (I'm new to posting) member is offline
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Re: Language Translation Supporters « Result #37 on Jun 13, 2009, 1:08pm »
Доброго времени суток всем!Меня зовут Миша,мне 39 лет,я из России.У меня мастоцитоз,слава богу пока не системный.Кожа густо покрыта буровато-красными пятнами.Их становится со временем больше. В Росси большая проблема с даже с постановкой диагноза - я три года не знал что со мной происходит.Теперь диагноз я знаю,но мне от этого не легче - лечения моей болезни нет. Прошу помощи у людей,которые могут это сделать!
Re: Claudia & Sofia « Result #38 on Jun 12, 2009, 8:36pm »
Krystyna, that was perfect. Maria can use your account here, that's fine.
I just emailed her as she sent this to me in email too. So Lisa, the email I sent you saying more is coming .....don't worry about that. Maria already posted it for you here on her Mom's account.
Thanks so much everyone! Your help is invaluable.
Weird fun fact.....little Stephanie and I share the same birthday. I don't know why that made me smile but it did
Really wish we could go to the conference in Spain this month. Next year, hopefully, definitely we'll be there.
Re: Google Translation for entire forum/website « Result #39 on Jun 12, 2009, 8:33pm »
Oh I hear you. I know these things are hit and miss. But I am hoping the translator will help people get the gist of what the forum is about to get them support at least. I was thinking if they pick it up and recognize something which might help, they likely know someone who knows english and can be a go between.
I have no idea if this will help but figured I'd give it a try
Thanks for letting me know about your experience with the translators online! It's good to know
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Re: Claudia & Sofia « Result #41 on Jun 12, 2009, 3:22pm »
Hello all, Hope you do not mind...but I thought it best if my daughter replied with info. I do hope the Conference in Toledo next week will help all Masto sufferers...my heart goes out to you all.
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Re: Claudia & Sofia « Result #42 on Jun 12, 2009, 2:36pm »
Hi Carrie
Stephanie born 16/11/07 diagnosed Diffuse Cutaneous Mastocytosis (from birth).
It's Maria with the little girl Stephanie, I'm using my mum's computer to answer the forum question about food etc. I've been really lucky as Stephanie has not shown any food allergies despite her having such a heavy skin involvement. However, other children in the group have shown reactions to really random things. I've found with Masto that every sufferer is different and what affects one will be fine with another. There are some things to avoid like E110 sunset yellow food colouring - that's a bad one for most of them but unfortunately it is in some medicines. Stephanie's medicine regime at her worst was:
2.5 mls Ketotifen twice a day 2.5 mls clarityn (loratadine) twice a day 5 mls Cimetidine four times a day (this is vital for strengthening the stomach lining and avoiding stomach bleeds) 2.5 mls Ucerax twice a day (I can't remember the other name for this - Hydroxycide?)
I also applied 4% sodium cromoglycate to the skin twice a day (Altoderm - I have a paper on this if you need it)
Stephanie couldn't take Sodium Cromoglycate orally - some children exhibit hallucinations (faces at the window!) and night tremors with this whereas other children are fine?
PUVA was the factor that changed our lives - I have a report and I think it may be Brazilian (if not Spanish) - I will email it to you when I'm at my own computer.
If you need any other information please don't hesitate to ask.
My advice to the mum about foods is: Try one food group at a time and stick with it for a few days Keep a diary of foods given and any reactions
I'm going to Spain for the first World Masto Conference next week where I will be meeting Dr Escribano and Dr Marianne Castells who are Masto experts. They are using Stephanie's case studies in their presentations (she's becoming rather famous!) I've opened Stephanie a facebook account called 'Support for Stephanie' where people from around the world can ask questions and see photos of the skin involvement and the improvements. UK doctors are writing up a report for the medical journals as we speak as Stephanie is the first UK baby to have PUVA.
Please feel free to ask me any questions - nothing is taboo.
Good luck mum's, mastocytosis isn't just a disease - it's a place and it's a very lonely place to be so that's why these forums are so important.
Re: Google Translation for entire forum/website « Result #43 on Jun 12, 2009, 1:19pm »
Carrie,
I used an online translation to change an English document into Russian for work. Good thing I had a Russian Translator proof read it as it ended up saying something completely different than the original document. I ended up having it translated by a real person instead of the auto translator on line.
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Re: Claudia & Sofia « Result #44 on Jun 12, 2009, 8:02am »
Hey Lisa, Dayna here... My Rachel was diagnosed at 9 months, although I KNEW something was wrong before that...but try convincing a pediatrician that's never heard of urticaria pigmentosa to give you that referral to the dermatologist! WRT allergic reactions to foods...this can change from day to day, sometimes Rachel had a reaction to strawberries, and the next day, she didn't. Rachel took that drug Ketotifen which is the generic form of Zaditen, in a liquid that she swallowed...only she kept vomiting from it, and lost her appetite completely, so I discontinued it's use. The big thing is not to treat her much differently than any other child. As hard as that may seem, don't give excessive sympathy because it will isolate the child from normal socializing. Rachel is now going into Senior Kindergarten and has many friends...therefore, this condition did not get in her way, nor would I allow it. You may wish to tell Claudia about a cream I use for Rachel...I mix:
1 tsp glycerine 1/4 cup of Vanicream (ordered from the pharmacist....$14.25 for a 1lb tub) or other thick lotion 5 tubes of Gastrocrom
2 tsp glycerine 1/2 cup of Vanicream (ordered from the pharmacist....$14.25 for a 1lb tub) or other thick lotion. 1 whole bottle (0.44 fl oz size – 13ml) of Nasalcrom
Cetaphil, a commercially available hypoallergenic lotion
I personally use Cromolyn Sulfate, open the capsules, since it's sodium based, crush the powder with a mortar and pestle then add the glycerin and vanishing cream...it takes the itch away immediate, providing instant relief. Works on anyone, even without UP.
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Re: Claudia & Sofia « Result #45 on Jun 12, 2009, 6:21am »
Hi, I cannot stay on long as I have to pick my grandaughter up from daycare. I will log in this evening with bit more info. Just want to mention that when my daughter was finding out about Masto I remember her mentioning a little Brazillian boy who was given treatment in Brazil (I think PUVA) and I am sure it worked. Sorry to be vague but will add more this evening when i get more positive info. Mollymoon
Re: Claudia & Sofia « Result #47 on Jun 11, 2009, 9:52pm »
Claudia is very lucky to have you Lisa!
Okay, Brenda comes to mind because of her granddaughter. Also Mollymoon on this forum because she too has a granddaughter. Mollymoon is very very informed on exactly this type of case in a baby. Her granddaughter is Stephanie, in the UK. I'll send a message to Mollymoon asking her to jump in here if she can.
Who else...I know we have other Moms but I'm drawing a blank on their names. Oh, Dayna, again. She works full time too though so she doesn't have a lot of time for posting online. I can shoot her a message again.
Let's see who else posts here. I mean, all the standard things apply I think. Go the food section Lisa and if you get the Low-histamine diet guide I posted translated for her into portuguese, that will help. I've heard the Benadryl spot tube stuff is great for bug bites. Also, she should have Children's Benadryl Allergy Liquid on hand at all times for her daughter. It's a great emergency med. Remember Ketotifen takes 4-6 weeks to work. And if she's only on an H1 antihistamine, she may need an H2 antihistamine as well. Finally, my last bit to add is contact Dr. Escribano. He's also on the ECNM (Europe Competency Network for Masto). He may very well know someone he can suggest to Claudia for treatment for her daughter. Or at least a physician who is part of ECNM and will consult with Claudia's doctor directly. That may be a huge help.
Okay, i'm shutting up now.... thanks so much Lisa. No worries on posting Claudia's messages here. It's okay. I just wanted her to have help. I didn't think she could read english so thank heaven you're available. See? It starts with one in your country and just watch, word will get out and they will find you LOL
***Edited to add: Lisa, I've emailed them all privately asking them for their help on this.
Claudia & Sofia « Result #48 on Jun 11, 2009, 8:01pm »
Hi Gang! I'm needing some help and input please! We have a new member here who's name is Claudia. Claudia is the mother of little Sofia, a little girl of 7 months old.
Claudia is Brazilian and does not speak a lot of English, however, I'm not really sure as to how fluent she is in English since I've been speaking with her in Portuguese. She emailed me so this is why her question is not here on the boards as yet. Anyway, Claudia has asked me some questions for her little Sofia has masto. She's got the UP in forms of blisters all about her and she's asked me a couple of questions that I've not a clue as to how to answer her. I need some feedback please!
She says that her girl is on an anti-histamine and Ketotifen. Yet she is beginning to eat foods and is concerned as to how to go about this and is afraid of foods causing her issues with the masto. She's wanting a list of no-no's food wise. Also, she's concerned about bug bites and what to do with them. She said the the spots where she gets a bite, like mosquitos and gnats, turn white while the area around it turns blood red to the point that she looks like shes going to bleed. She's also afraid of the blister's the girl's got on top of her head.
Have any of you any experience with this?
As to Claudia, I've contacted my dermatologist, however, Claudia is living in Rondonia. That's in the Amazon! That's like living way up past the artic circle for you Canuks!!! She's way out in the boonies of the boonies and this is why I sent her email to my dermatologist. She said her doctors told her that this little girl, Sofia, may be the ONLY patient in the entire state!!! If any of you can give me some input, I would sure appreciate it for this is one Mom who's needing a lot of support and help! However, she may be able to read your notes and I'm sure would appreaciate a word of encouragement!!
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That's because the word for Codfish, or as we will sometimes use it, COD looks a lot like GOD depending upon the typeface!!!! So, the Lord Almighty Codfish Said....!!!!!! It gets to be a real riot for my husband who is a protestant minister, cause he does a lot of translation of relegious texts! The whole croud of us will break down howling about the many mistakes the translators can make, but you are TOTALLY right, Carrie, cause by identifying a language that seems similar, it will spark interest and hope and then that person will seek out someone who can read it. This is what I've seen happen time and time again for I've had plenty of people seek me out to help them with such things. So this is truly how the situation works. So, I think it's a very valid ideia of putting some things out there for people to see and spark their interest!! Good use of them neurons kiddo! 