Mastocytosis

Question: How do I find information on mastocytosis in the UK? Anyone know if there is a website with helpful information on Mastocytosis in the UK?

Answer: There is currently a worldwide group, largest collection of masto patients out there, through the Mastocytosis Society - www.tmsforacure.org If the masto patient is a child, try www.mastokids.org

Question: How to know your child has Mastocytosis? I have twins and one of the are very sick and have symptom of this disease and I am scared about what may happen to him if he doesnt get the correct help for it and he stays sick longer. What do I do? I have gotten to the point that I am not sleeping bc he wakes up 2 times a night and he is always hungery and he is not going to the bathroom like normal and he is always sick with running a fever and I just cant get him better. I need help please

Answer: Symptoms In some rare cases chemicals released by mast cells cause changes in the immune system leading to typical allergy symptoms such as: Itching Abdominal cramping Anaphylaxis (shock from allergic or immune causes) When too many mast cells exist in a person's body, the additional chemicals can cause: Skin lesions Abdominal discomfort Episodes of very low blood pressure (including shock) and faintness Bone or muscle pain Nausea and vomiting

Question: anyone out there have a baby with mastocytosis? I have a son, he has mastocystosis, I haven't been able to connect with other parents that have childern with the same condition, does anyone know of any support groups? In the southern california area?

Answer: I had mastocystosis and found that there are some links for help, support and information on urticaria@yahoogroups.com. I'm in SoCal too, but do not know of any local support groups, but will put out some feelers to see whether anyone else knows of any. For the time being, join the urticaria group, make a posting with your question and do a query on infant mastocytosis. I feel for you, I cannot even imagine what it would be like to be a baby with masto, it was hard enough being an adult taking 8 ampules of gastrocrom a day! Good luck and God bless. There are support groups listed on the Mastocytosis Society webpage: http://tmsforacure.org/

Question: 6 month old baby with mastocytosis will chlorphenamine help?

Answer: No idea but I hope your baby recovers and will be completely healthy soon. You need to ask his doctor this. Here is a link about it though. http://familydoctor.org/online/famdocen/… The good news according to this website is: "It's usually mild in children, and they often outgrow it." Good luck!!

Question: am i suppose to panic that i found out my daughter has mastocytosis? my 5 year old daughter has mastocytosis. she a very great kid,,, she my number one fan. please share me your ideas and all

Answer: No, it seems to be quite treatable and survivable, especially in a child. http://familydoctor.org/441.xml Here's a support group and links to loads of information: http://www.angelfire.com/ks/kctmsmastosu…

Question: How is dermagraphia different than mastocytosis? mastocytosis involves mast cells and hives also

Answer: Go to wikepedia and enter each name by itself and they will tell you the differences between them

Question: i have a child with mastocytosis need info? I would really appreciate it if there is any parents out there who have had experience with this and can give me some information from a day to day experience (any dos and donts) I want to put my son into baby swimming lessons but not sure if this will agrovate his skin does anyone have any experience with this?

Answer: Everything I'm seeing doesn't recommend swimming. I found a website, though, that has a lot of information on this condition as well as links to support groups: http://tmsforacure.org/index.shtml

Question: does anyone in australia have mastocytosis i am recently diagnosed and need a good haemotoligist please help . i live in sydney and have researched for months on the net but it appears its only known in the US, none of my doctors care

Answer: You might actually need to travel to the US for treatment. Its worth it......for your health. I wish I knew how to help..I pretty much feel helpless on this one. Dont look for a physician through yahoo answers though. -Online support group?? Contact a specialist that knows how to connect you with the best of the best or whomever else you may be looking for. This site sure has a vast amount of information. Maybe you'll find something valuable. You have my best wishes, always.

Question: i have a 5 month old with mastocytosis anyone have any experience of this if so what advice for care?

Answer: havent got any personal experience for this but this m ay be helpful to you http://www.rch.org.au/kidsinfo/factsheet… http://familydoctor.org/online/famdocen/… http://www.answers.com/topic/mastocytosi… http://dermatology.about.com/library/bld…

Question: does mastocytosis ever go away? i have mastocytosis and i want it to go away does it go away?

Answer: considering there is no cure, I'm going to go with no...