Guest guest Posted October 15, 2007 Report Share Posted October 15, 2007 Looks like you've been through a lot also. Thank you for your encouragement. Sometimes I read so many e-mails and start getting thinking there is no hope. I hope everything goes well for you too. What have you been dealing with latley with your PSC? Thanks again, e > > > Hi e, welcome to the group, I am relatively new also. > > I am so sorry to hear about your little boys diagnoses. It saddens my > heart to think of the children that are affected by these awful, > devestating diseases. > > I am in awe of the parents on this site constantly, for the courage, > devotion and tenacity they show daily while trying to make their > childrens lives as comfortable as possible. > > I have no doubt you will find some great support here as everyone is > very supportive and this is an unusual support group as there are > several experts on these diseases and you will not want for the > technical/medical info you need to manage your sons illnesses. > > This group has helped me enormously and its wonderful to know that > there is always someone a few clicks away when things get rough. > > My thoughts are with you, your son and your family, and I hope things > get better for him quickly. > > Best wishes > (UK) > PSC 07, recurrent esophagitis & gastritis, gastro paresis, > osteopenia, endometriosis leading to total hysterectomy 2004, > gallbladder removed 2005 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 Are you anywhere near Boston? Our son was diagnosed at age 11 and Boston Children's has a great pediatri hepatologist named Maureen Jonas. Keep a notebook. You will forget questions you want to ask Drs and forget their answers. Write down everything. If you have to deal with insurance companies make sure you get the names of people that you speak with ans their contact info in case you need to speak with them again. Your son will have good and bad days. Make sure when he feesl well you trest him like a normal kid, complete with punishing him for being bad. It is really easy to create a monster. Take any support from family and friends that is offered. You are in this for the long haul. Good luck. Marti daniele_lundin wrote: Hi, my name is e. My son, age 3, has been diagnosed with PSCand Chrons. He has been through many treatments already. Severalrounds of steriods and is on Azothioprine for a long time. Also is onursodiol which I am happy with so far. I was just looking for anyoneout there who would want to share anything they have been through witha child that has PSC. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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