question for collicat

Hi....Yes Anne Griffiths was Dillon's doctor at Sick Kids. She is a very good doctor and really knows her stuff....the result being that she is the head of the department. The only problem is that this makes her really busy. Sometimes she can come across as cold but I think it is mostly the fact that she is hurried. When we really needed her she was very helpful. That being said she is not the warmest person in the world but what you really want is her knowledge. She does however travel a lot, with lecturing, so sometimes not available.

We actually switched doctors due to the fact that she was away for two weeks just at the time that Dillon was hospitalized. Mary Zachos took over and we absolutely loved her. From then on we stayed with her. Regretfully she is not longer at the clinic.

You may come across Dr. Seamus (pronounced Shamos) Hussey who is now a clinical fellow working in the clinic. He is actually doing research in the lab next door to me (at the University of Toronto) and has been invaluable to me. He has discussed Dillon's treatment with me at what must be "ad nauseam" for him. He is a wonderful caring man with great "bedside manner".

All these doctors, to my understanding, feel the same way concerning alternative therapies. They will not "prescribe" you to try something that has not been "proven". That is just the way they have been taught. I was once told by Mary Zachos (I think is was concerning tumeric) that she had seen more patients come into emerg that had made themselves worse by ingesting large amounts of it than those that thought that they had been helped by it. She did agree that she felt that some people may have been helped but more had been hindered. I think this is the way they view most of these treatments.

There is one nurse/practitioner who works in the clinic who is absolutely amazing. Her name is Karen Frost. She runs the remicade program (if you end up going that route) but also works I believe sometimes with Anne Griffiths. I cannot speak highly enough about her. She gives you her e-mail address and she is accessible always. There were times she replied to me at 10:00 at night . More times than I can count I would send her an e-mail in the morning to ask some question and she would reply in less than 10 minutes with a real answer. This woman will bend over backwards for you and accomplish what seems impossible.

One of the great things about Sick Kids is that if you ever need help after hours, or on the weekend, there is phone number that you call and they page the "GI fellow-on-call". This person will call you back (usually within 30 minutes) and have complete access to all your information. If you need to come to emerg they will meet you there. Therefore, no waiting around and having to explain your situation to doctor after doctor while they wait to a GI doctor to come and see you.

Am I remembering correctly that you live in the Ottawa area? It is along way to come to this clinic but I have been told that it really is one of the best in the world and Anne Griffiths is running it...so that tells you something.

When is your daughter's appointment? If you don't mind me asking...how old is she? I know how difficult this all is and if I can be of any other help please do not hesitate to ask.

Cathy

Hi Sherry, I don't think that you will get "thrown out". lol. I am really happy that you have met with Karen. She truly is amazing. Best of luck on Tuesday. If you see Karen you can tell hear that you have been "chatting" with me. When we left Sick Kids (because Dillon turned 18) we did not know if he was going the surgery route or not. She always complained that when people left she never knew what happened to them. I keep meaning to drop her line but you know how it is. She will remember Dillon Collins.

Let me know how Tuesday goes and I hope that things start to improve for your daughter.

Cathy Collins

Just wondering how your appointment went?