Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 In a message dated 4/28/2003 8:06:03 AM Eastern Standard Time, pancreatitis writes: > Someone somewhere was gonna treat her pain > > When I read your first email this afternoon I wanted to write to you immediately and tell you please take her to the closest ER. I am so very relieved you did and that you found someone there who understood. At least there you know she is going to get some relief. Some thing I wanted to suggest is start making a journal day to day of the pain she is in the amount of medication she takes so that in the future it can be referenced and you know exactly when, how much she is taking, when and what her levels of pain were. It amazes me at times to look back over Brandans journals and see just how much pain medication he was on at one time verses what he takes at the present time. It was so much easier as his attacks progressed with this disease to take these journals ( I used calendar books for each month) and show the doctors in the ER when we arrived what his diagnosis was, what he had been on and what he needed to make him comfortable. Now it shows them just how far he has come in 3 years. It is very important to document everything and keep it so it can be referenced not only by you but by the doctors that see her. I still keep Brandans journal, I am on my fourth. I had to work very hard to convince the medical community that my son although at times did not have raised levels just as Cassie, was in the amount of pain he was. I truly educated my sons pediatrician and he has thanked me many times, in doing so he has become my sons advocate. If it wasnt for him believing in what I was telling him and educating him about Brandans disease, Brandan wouldn't be where he is today. I truly understand how you feel. I wondered if you knew that the doctors at Mass General have clinics in different cities other than Boston, would it be possible to find someone who perhaps traveled closer to you so that she would not have to travel to Boston? Perhaps if you called the Pedi-Gi they could recommend someone who travels up North of Boston for clinics? Its worth the suggestion? Has Cassie been seen at Childrens Hospital in Boston? Joey another boy who's mom is a member here had a wonderful doctor who has treated him for years, actually he ended up being the first child in Ma. to have the TP/ICP done there last June, due to his condition and insurance issues. When I last spoke to Sue, Joey was doing wonderful, I will write and see if perhaps this is someone who can help? Have you thought to write to Dr. Sutherland and see if perhaps he can help? I am so happy Cassie finally got some relief and I wish nothing but good days ahead for her. I know as a parent how it tears your insides apart, but your not alone there are many here who understand your anger and frustration. Please feel free to write me anytime . I will see what I can do about getting information about Joeys Dr. at Childrens if you would like and perhaps see if they have clinics also outside of Childrens north of Boston? All anyone can do is, " take it a day at a time. " As always keeping you and yours in our thoughts and prayers...Keep smiling(Cuz sometimes its all one can do!)..TTFN.. : ) Peg Bates Brwnbare9@... Massachusetts State Chapter Rep. Pancreatitis Associaton Intl. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 Peggy Great to hear from you. I'm so happy for . How's you husband? Have you heard from lately? I expected to hear from her after my post and didn't. I know she's having some hard times right now and trying to get things straight. Seems to be going around. In January my pregnant niece was murdered by her husband, then I hurt my back was out of work 2 weeks. When I returned, my boss started giving me crap about being out for me and Cassie. Then on top of that complained about me not getting all my everyday work done. Yet all his special projects were always completed. When I explained that I needed help I was having trouble keeping up and he's was sending me into burnout. He told me he didn't understand and there was nothing he could do. So I quit, enough was enough. Oh did I tell you I worked there 10 years and this is my parents business? Great family support huh? So.. now I have no job and medicad is Cassie's only insurance. I don't think they will approve Cassie seeing DR Sutherland let alone have him perform the procedure. I Can't even get anyone here to recognize that the procedure is used to treat CP, they say it's just for diabetits. Still trying to educate them where many issues regarding CP is concerned. I finially heard from her GI in Portland, he had 2 weeks reserve duty. He's putting her back on enzymes and will see her in June - the soonest he can see her. She has another ultra sound scheduled tomorrow morning and will see her PCP Thursday. I expect that we will have it out, again. We did back in January and we had thought we had an agreement, if the Wellbutrin stopped working or didn't work for everyday pain, he'd give her something else. She's doing better this week though I think she's lying about how much pain she's having. She really like school. I'd really be interested in this Dr at Mass General if you can find any info. Thanks again, give evry one a hug and god bless Patty Hurst Bangor, ME Maine State Rep PAI Quote Link to comment Share on other sites More sharing options...
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