Guest guest Posted November 25, 2008 Report Share Posted November 25, 2008 , Welcome, We are sorry for your daughter's diagnosed and that you needed to search us out, but we are glad you found us. Yes there are members of this group who are mothers of young PSC suffers. Most of the mothers are also members of a group called PSCmoms. more literature can be found at PSC Literature and at pscpartners.org Hello!I am new to this group, and wanted to know if any of the members have children that are affected by PSC. My young daughter (age 4 1/2) was diagnosed late this summer with PSC and UC. We have no family history of either disease, and my husband and I are trying to gather as much information from anyone that is willing to share. Thank you, Cousins Richmond, VA -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2008 Report Share Posted November 25, 2008 - I'm so sorry for your diagnosis. Our 7 yr. old son was also diagnosed (dx) this summer with UC/PSC. I know what you're going through right now. We've never had to deal with a serious illness in a child like this in my family or my husband's. Feel free to email me directly at dbvardell@... if you would like. I'm happy to help in any way that I can, but there are so many in this group that are so much more knowledgeable. What I do know and have learned quickly is that these diseases effect each child/adult differently. Everyone progresses differently, so all or none of what you may read on-line may or may not apply to your daughter. We are still on the learning curve as well, but this group is such a great source of knowledge! PSCmoms is also invaluable. We are a part of both, and I would recommend that for you. My only advice at this point is to take it slowly. Take time to digest all of this and don't try to read every post. It can be overwhelming. Allow yourself to take a day, or an hour, off and not think about this disease. When we first learned of my son's dx, my husband & I were in emergency/crisis mode. What I know now (4 months into this) is that we may be at this awhile before we have to start talking transplant, and that there is much to try to figure out with regards to best treatment options along the way. Again, I'm sorry that you've had to come here, but I'm glad you've also found this invaluable support system. Best regards, Becky Vardell, mom to Carson (UC/PSC) and Eva (Celiac) Hello!I am new to this group, and wanted to know if any of the members have children that are affected by PSC. My young daughter (age 4 1/2) was diagnosed late this summer with PSC and UC. We have no family history of either disease, and my husband and I are trying to gather as much information from anyone that is willing to share. Thank you, Cousins Richmond, VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2008 Report Share Posted November 26, 2008 BeckyI am not sure how your son's tests are coming back. But the psc may never progress to require transplantation. That is what I understood from a thread of posts last. If I am not mistaken they were quoting a dr kaplan. Good luck!ShaulPSC UCSent via BlackBerry by AT&TDate: Tue, 25 Nov 2008 22:25:11 -0600To: < >Subject: Re: Pediatric PSC -I'm so sorry for your diagnosis. Our 7 yr. old son was also diagnosed (dx) this summer with UC/PSC. I know what you're going through right now. We've never had to deal with a serious illness in a child like this in my family or my husband's. Feel free to email me directly at dbvardell (AT) gmail (DOT) com if you would like. I'm happy to help in any way that I can, but there are so many in this group that are so much more knowledgeable. What I do know and have learned quickly is that these diseases effect each child/adult differently. Everyone progresses differently, so all or none of what you may read on-line may or may not apply to your daughter. We are still on the learning curve as well, but this group is such a great source of knowledge! PSCmoms is also invaluable. We are a part of both, and I would recommend that for you. My only advice at this point is to take it slowly. Take time to digest all of this and don't try to read every post. It can be overwhelming. Allow yourself to take a day, or an hour, off and not think about this disease. When we first learned of my son's dx, my husband & I were in emergency/crisis mode. What I know now (4 months into this) is that we may be at this awhile before we have to start talking transplant, and that there is much to try to figure out with regards to best treatment options along the way. Again, I'm sorry that you've had to come here, but I'm glad you've also found this invaluable support system. Best regards,Becky Vardell, mom to Carson (UC/PSC) and Eva (Celiac)On Tue, Nov 25, 2008 at 7:48 PM, Cousins <jennifercousins74 (AT) yahoo (DOT) com> wrote:Hello!I am new to this group, and wanted to know if any of the members have children that are affected by PSC. My young daughter (age 4 1/2) was diagnosed late this summer with PSC and UC. We have no family history of either disease, and my husband and I are trying to gather as much information from anyone that is willing to share.Thank you, CousinsRichmond, VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2008 Report Share Posted November 26, 2008 BeckyI am not sure how your son's tests are coming back. But the psc may never progress to require transplantation. That is what I understood from a thread of posts last. If I am not mistaken they were quoting a dr kaplan. Good luck!ShaulPSC UCSent via BlackBerry by AT&TDate: Tue, 25 Nov 2008 22:25:11 -0600To: < >Subject: Re: Pediatric PSC -I'm so sorry for your diagnosis. Our 7 yr. old son was also diagnosed (dx) this summer with UC/PSC. I know what you're going through right now. We've never had to deal with a serious illness in a child like this in my family or my husband's. Feel free to email me directly at dbvardell (AT) gmail (DOT) com if you would like. I'm happy to help in any way that I can, but there are so many in this group that are so much more knowledgeable. What I do know and have learned quickly is that these diseases effect each child/adult differently. Everyone progresses differently, so all or none of what you may read on-line may or may not apply to your daughter. We are still on the learning curve as well, but this group is such a great source of knowledge! PSCmoms is also invaluable. We are a part of both, and I would recommend that for you. My only advice at this point is to take it slowly. Take time to digest all of this and don't try to read every post. It can be overwhelming. Allow yourself to take a day, or an hour, off and not think about this disease. When we first learned of my son's dx, my husband & I were in emergency/crisis mode. What I know now (4 months into this) is that we may be at this awhile before we have to start talking transplant, and that there is much to try to figure out with regards to best treatment options along the way. Again, I'm sorry that you've had to come here, but I'm glad you've also found this invaluable support system. Best regards,Becky Vardell, mom to Carson (UC/PSC) and Eva (Celiac)On Tue, Nov 25, 2008 at 7:48 PM, Cousins <jennifercousins74 (AT) yahoo (DOT) com> wrote:Hello!I am new to this group, and wanted to know if any of the members have children that are affected by PSC. My young daughter (age 4 1/2) was diagnosed late this summer with PSC and UC. We have no family history of either disease, and my husband and I are trying to gather as much information from anyone that is willing to share.Thank you, CousinsRichmond, VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2008 Report Share Posted November 26, 2008 I am sorry to learn of your daughters diagnosis. Though I am not a parent the only tip I want to share with you which was the most valuable thing I learned during the course of this trip with PSC is to have a good Hepatologist. The treatment, course of action prognosis and most important (at lease in my case) the calm was so different from when I saw a GI. We are all here for you!ShaulPSC UCSent via BlackBerry by AT&TDate: Tue, 25 Nov 2008 17:48:21 -0800 (PST)To: < >Subject: Pediatric PSC Hello!I am new to this group, and wanted to know if any of the members have children that are affected by PSC. My young daughter (age 4 1/2) was diagnosed late this summer with PSC and UC. We have no family history of either disease, and my husband and I are trying to gather as much information from anyone that is willing to share.Thank you, CousinsRichmond, VA Quote Link to comment Share on other sites More sharing options...
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