is there anyone from lreland everyone seems to be from the us it would be nice if there was someone so that my sonwould have someone he could talk to when he is older

ah well it was worth a shot

that was one of the hospitals william was in when he was sick but because the doc in galway didnt want to let him go they would not take him.

Deborah,

I understand your thoughts and feelings being upset with Deb's situation in Ireland, but a "Mom talk" isn't needed yet, at this point.  

Deb, just so you know, Deborah is our "Mom" around here and she'll stand up and give us all a bit of a talking to from time to time.  And what she's trying to say is that there does indeed come a time when we have no other choice but to make a big fuss with the doctors for they tend to act like God on Earth when it comes to our children and our own health situations.   And there are times when we really must do this in order to get the proper attention.   Our doctors sometimes have their EGOs totally involved in their doctoring and they take it as an affront when they have to send a patient on to someone more capable.  They tend to think it's a reflection as to their capacities as doctors and this is just NOT the truth here.

Deb, I KNOW what your situation is there in Ireland and because Ireland has it's own public health system, you are STUCK in it unless you have private health insurance.   And as to what that's all about, I don't know.  All I know is that the public system is extremely slow unless you have an emergency situation.   My sister lives in Naas and she has to work with the public system and it leaves her absolutely petrified as to what life will be like for her when she's elderly for she's a doctor herself and she doesn't like the way the elderly are cared for in Ireland - ormore like not cared for!!    

Deb, you do NOT have anyone who knows masto in Ireland.  And you are in even worse straights out in County Mayo!   Your best bet is Dr Gillian Murphy at Beaumont Hospital in Dublin.  Her name was passed on to me by Dr. Clive Grattan who is a mast cell authority in England and is the UK's highest authority on mast cell disorders.  He told me that she is not a masto specialist, but she's most likely the very best you are going to find in your country.   Yet, to get to see her is the problem here, Deb.   It's going to take you MONTHS to be able to see her if you can get the reference to her.  

You would be much better off contacting Dr. Escribano in Spain and see if he can help you instead.  He can see what he can do to help you and will often gladly work with your doctors.   And  in this sense, Deb, you are going to have to take some matters in your own hands for your country just does not have the authorities in this disease that your son is needing and if that's the case, then you have to either get some private insurance which will help you with the care of your son, or you are going to have to pay privately for some of these doctors.   This is the "Mom talk" that Deborah was moving towards.   I understand how it is to have to work through the public health system and here in Brazil we also have one.   Yet here in Brazil the public system is so broke that those of us who can afford it have our own private insurance for it's too precarious to depend only upon the public system.   Yet, this is not Ireland's case in that your public system works much better than ours.  However, the problem with your system is that if you don't have a doctor who is willing to support you, then you're STUCK!  And even if you do, it's slower than molassas in a Siberian winter!     This leaves you with no choice, you've got to go privately and this is something that many of your neighbors would think is outrageous.   But this is what life with a rare disease forces us to do - we have no choice, for our doctors are even more rare than we patients are and if we are going to get appropriate health care, we have no choice but to seek out who those doctors are and FIND them!

So, please, Deb, put your son's health as the priority here and see how you can help to change this doctor sitaution you are facing.  Your local doctors MUST recognize that this is a very rare disease and that they are just not able to handle it and that you MUST have access to doctors in Dublin!  Dublin is the medical center for Ireland and you are NOT going to find anyone capable of dealing with your boy's problems even in Galway!  I was in Galway only 3 years ago and I saw the size of that city and I can tell you without at doubt that you don't have the doctors you are needing there!!   If Ireland has any specialists who can take care of your son, they're going to be found in Dublin.  

I hope I've not discouraged you.  I hope I've only helped you understand more clearly what your situation is and what you need to do to help your son.   You've got a long stretch before you before he's out of the woods, and thankfully, most masto kids end up growing out of their disease by the time they reach adolescence.  However, getting your son safely to adolescence is the issue right now and this situation of his having to have vaccinations is very important!   So, you need help and you need it NOW, and this is what I hope we can find for you.


Lisa

I don't think Lisa was telling you to get private health care.  I think she was saying that is one option to see the doctor she mentioned.  However, she also suggested you might want to contact Dr. Escribano in Spain (by email, I would guess, at first), who is likely willing to work with whatever doctor your son has in order to get him a treatment plan.  He's done this for other patients.

Good luck.  I hope you can get him some relief!

Have you been to the MastoKids website?  It might be helpful.