II am hoping that there is someone out here who can give me some information or personal experiences on Mastocytosis. I asked last week about the spot on her leg from her vaccinations, while no one else had it I did get some helpful advice on who to see. I finally took her to a dermatologist who saw the pics I had taken and then was able to mimic it and gave me the diagnosis and scheduled me for 3 weeks for her to have a biopsy done. He wrote Mastocytosis on a paper and told me to research it but not read the scary stuff.... YEAH RIGHT! It is all scary to me as I am reading it... everything from- it is mild but not curable to it can be fatal. While I do not believe she has a fatal form of it it is still scary to read anyhow!
I think I have been able to actually figure out now some of her other problems like, her becoming hypothermic in a warm house wrapped in a blanket with warm jammies on, her sometimes pale skin, her irritability, her refusal to eat food lately, her headaches, sleepiness etc.... just found out you should not give a person with this any NSAIDS and I have and she ended up in the ER later that night with the hypothermia and a team of Drs trying to re-warm her.
So after doing all this reading I decided to find a pediatric dermatologist who specializes in Mast Cell Diseases. I finally found one at Childrens Hospital of WI in Milwaukee. They are going to see her next Thurday as they do not want me to wait any longer than that- was actually a 5 week wait originally. Has anyone been there? What can I expect when they do the biopsy? Any personal experiences with Mastocytosis yourself?
Any help/answers would be so appreciated... also if you can please say a prayer for Trinity!
Blessings to all!
Well, we took our daughter to CHOW- I finally know it is the abbreviation for the hospital and that it does not mean food! lol
They confirmed the diagnosis of the Mastocytosis and send us for a lot of blood work. I was so greatful that they did not have to do a biopsy as the original derm. had wanted to do. I was told that it should go away as she gets older- around puberty or later.
She was also prescribed an EPI-Pen and a prescription similar to Benedryl. I have actually had to use the one when she had a reaction to the cold and sun the other day. We know that cold is one of her triggers that causes a reaction. So until she talks we just have to watch her closely to figure it out. The biggest downfall is that triggers can change from day to day!
I want to thank you all for all the prayers, thoughts and well wishes! It really means a lot to me, especially since I was so petrified, to know that I had you all there for me!
Many blessings to you all!
So sorry you have to deal with all this. I will say some prayers for you and your daughter. Best of luck to you both!
I'm sorry to hear of your troubles. If you will consider alternative/natural medicine, homeopathy will likely be able to help get your daughter's ailments relieved. You can take this kind of remedy along w/ any medications which her specialist may prescribe. i see a homeopathic dr. in naperville and she takes emails to ask questions about whether homeopathy can treat certain illnesses/conditions. Based on my studies of homeopathy, I think homeopathy can help, if not cure.
Dr. Josephine Polich's email is ____@____.com website is www.dupagehomeopathic.com
Best of luck to you.
Hi T. unfortunately I do not have any experience with this. However during my pregnancy my daughter was diagnosed with CDH which has a 50% fatality rate. We were beside ourselves. But I agree with the dr's.....be careful what you read. The internet was the best and worst place for me to research. You may want to expand your search to "survivors of" if you haven't already. Many people have blogs and go into more detail as to what you may expect. What I really wanted to say is that I have heard nothing but great things about CHOW!! Many CDH kids are treated there and treating CDH is very difficult to say the least! But I have not heard one complaint about CHOW. Your daughter is in good hands there. Sorry I'm not of much help!
T.
mom to 4-my boys are 6 and 7, and my girls are 2.5 and 20 months. My youngest was born with CDH, post ECMO, severe seizure disorder, weight gain issues....but she is the happiest most normal kid you will meet even though she was given a less than 10% chance of survival!!!
T.
My son, who is now 13 years old, started with the "red spots" around 6 months of age. I explained and showed the pediatrician as they were appearing, she gave me no real comfort in what they were, as they were multiplying. He ended up with 33 in the end. We took him to a now retired dermatologist that told me it was an over production of mast cell. To confirm we did the biopsy. Later, I switched pediatricians and the new one, know immediately what it was, just by simple observation, stating he really had never seen it in real life, just in the books.
He then started using our son to show his medical students. It is nothing to be concerned about as a kid, if it were an adult it would be something to have concerns about.
The correct name is, and my spelling will be wrong, urticuria pegmentosum. It is an over production of mast cell, with too much histamine release, you will notice they will flare up, get redder or itch during that time. Also, it will alert you to her getting sick, they get really red and itchy.
My son now has NO red spots, it took several years for them to go away, he had probably two, the first two, that lasted until the last couple of years.
Good luck to you. Don't worry. They leave no scars.
Hello!
A couple of things...your daughter will be who ever she is--you can guide her, but getting it right is a combination of who she is and how you raise her.
My first born had severe disabilities so I know what I'm talking about when it comes to severe health care...doctors will always give you the worst case scenario. Legally they have to to cover their butts. Keep this in mind...more likely than not, it will not be the worst case. Next...you will probably need to talk to someone about the emotional side of all this. Ask for help. Ask to speak to a social worker affiliated with the hospital.
Most important. Keep loving your child the same as you did before you noticed something was different. She is the same kid--only your perception has changed.
Good luck--my prayers are with you.
E. B.
Although I can't speak for the procedure that you're daughter will be going through, a friend of mine has a profoundly disabled daughter with many medical issues. She has taken to that hospital on numerous occasions and has always been very happy with them.
T.,
I just wanted to wish you luck. I have not been through anything like what you are going through, but I will be thinking about you and your daughter. I do hope that provides some sort of comfort for you and your family.
Praying that God will keep Trinity and that no hurt or harm will come near her!! Be Blessed
A girlfriend of mine has a daughter with this disease. she has a link to this site on her myspace page
www.mastokids.org
www.tmsforacure.org
Good luck! there is a strong support here in chicago! i hope you find the strength you need!!
YOU WILL LOVE CHOW!!!!!!!!!! they are really good there among the top! if you dont like the first dr though make sure you see anotehr one there. also check in to EE with your daughter
www.curedfoundation.org and www.apfed.org
ch of wis is good for that too!
good luck and sendign tons of prayers!
J.
Hi T.---while I don't have any experience with that particular disease, I have a ton of experience with Children's in Milwaukee. My little girl was diagnosed with leukemia at 23 months and she has been treated there for the past 2.5 years. It is one of the top children's hospitals in the country, we have been so happy with the care there. We have a wonderful oncologist, they have great staff, they are very caring....they were voted one of the top ped places by Parents magazine I believe. Its an excellent choice. They had the highest rate of one year survival post bone marrow transplant, better than St Judes.
Good luck, any specific questions, please feel free to email. I am in the Libertyville area.
