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my son william (Read 3241 times)
deb197
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my son william
05/09/11 at 23:49:32
 
he has d c mastocytosis he is 20 months old and he is very happy he first started geting this at 4 weeks and had his first bad reaction at 4 months and was in hospital for a month and a half and the blisters kept on coming with the result that he ended up in hospital every few week they start to become less and he could get a simple cold without it sending him into hospital and he has not been in hospital in about 9 months but the blisters are coming back and he has now got 3 lumps in his neck and we have to wait until the end of june to see his doctor to find out what they are
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Riverwn
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Re: my son william
Reply #1 - 05/10/11 at 04:46:43
 
Hi deb and welcome to the board!!
I dont know how I would handle having one of my children with this disorder and I think you are marvelous for looking for what ever makes your baby boy better. I dont have a child with Masto (obviously) but there are quite a few people here who do and can give you support and help answer your questions.

As to waiting til the end of June and he is getting more blisters, dont wait--call the DRs office and tell them you will come in for any cancellation they have, he needs to be seen SOON.
Im glad youre here!!
Much love and hugs to you,
Ramona
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~~~Count  Your Blessings!~~~
 
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DeborahW, Founder
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Re: my son william
Reply #2 - 05/10/11 at 04:50:17
 
I agree with Ramona - you are going to need to be the pushy mom and get an earlier appointment, as in this week. Unfortunately with this disease, we have to become our own advocates. The doctors don't always realize everything about this disease, so it will be up to you to be his watchdog and get assertive if you need to. We have some other parents here with mast cell children, so you are not alone!!
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deb197
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Re: my son william
Reply #3 - 05/10/11 at 09:04:09
 
i tryed to get him in to get the swine flu jab as he has to have his jabs in hospital but i was told to get my gp to write for an appointment that was back in january and still have not got one the doctor over here dont no much about this and it dose not help that he has changed doc 3 times the tell u less then nothing when you do see them and it is for no more then 5 minites
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Riverwn
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Re: my son william
Reply #4 - 05/10/11 at 09:12:32
 
deb, Im so sorry they are treating you that way.. it means one thing--change DRs.. Let us know where you are located so we can help give you suggestions... and be a SQUEAKY whell, like Debbie said Smiley We are here for you!

Also ask a masto specialist about getting that swine flu shot with everything that is going on with your baby... I might opt to wait til he is better or opt not to get it at all--only a specialist (masto) can tell you the best solution for that.
Many hugs,
Ramona
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Mike
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Re: my son william
Reply #5 - 05/10/11 at 09:17:12
 
This years swine-flu H1N1 vaccine is rolled in to the seasonal flu vaccine, isn't it?  Not sure I would get that either.....

Mike
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deb197
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Re: my son william
Reply #6 - 05/10/11 at 23:27:30
 
i am in mayo in ireland but i was told that there are no masto specialist in ireland  ,and my gp said it was to dangers for him to get the swine flu, the swine flu is in the flu jab but we were told that  the kids have to get the swine flu one ,we have 5 kids and we are not going to get the other 4 the swine flu jab, and if we change doc they are going to know even less, i was going to write to the doc that is on this site for what ever info they have what do you think. Smiley
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Lisa
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Re: my son william
Reply #7 - 05/14/11 at 02:55:49
 
Hi Deb,


You are needing to get in contact with Dr. Luis Escribano.  He's one of Europe's leading masto authority and he has a LOT of children in studies from around the world.   He can help your doctors!

Also, I know of a dermatologist in Dublin.  She's not a masto specialist, but she's perhaps the best you have in masto in Ireland.    If you PM me with your email address I'll be more than happy to send you the contact information for these doctors.

How do I know this?   My sister lives in Naas.   I live in Brazil.  I've been trying to help her find doctors and so this is how I know what your sitaution is there in Ireland.  

So, please contact me and I'll be more than happy to give you the contact information for these doctors.

Lisa
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Don´t forget, there is so much more to life than being sick!
 
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