Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 Helen . I agree its better to know than not and even though the news is not what you would have wanted, you know you and Nick have support, love, thoughts and prayers a plenty on this list. keep us posted and give your lil man a huge hug from KY. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 Helen- That is some crappy news! But at least you know what's wrong and can go from there. is in our thoughts and prayers! Diane (, 6, pauci, iritis) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 Helen - as if you already didn't have enough on your plate. I am so sorry - I wish there was more I could say or do. We will continue to put in our special prayers. How is he taking it? You have helped me out so much with the information and support you have given when it comes to our Hunter and this disease. Know that we are here for you and your family. Sandi Ken and Hunter (Systemic 7) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 Hi Helen: I am so sorry to hear that Mr. Nick and you have something else to worry about:( Did they recommend all the children see a geneticist too to check on Marfans or Elhers? Marfans was a possibility for me when I was a child, but it was ruled out. I hope that is the case with Nick too. I pray the dialation doesn't increase and Nick's heart remains stable. Will he need prophylactic antibiotics before dental visits/surgery/etc.? I bet Nick was happy he can still do soccer. What did he think of the echo? Thinking of all of you. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 Helen, I'm sorry you are having to deal with this on top of everything else.You are a great mom and I know you will get through this. I pray things stay stable and that the Remicade keeps working it's magic and Nick is off playing soccer this spring. Many prayers and much love. Becki and 7 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 Helen, I am at a loss for words - I am sitting here in tears. You are an amazing Mom, will continue to thrive under your watchful eye and loving care. Sending you lots of hugs, prayers and love. Val Rob's Mom (8,systemic) ' Cardiology Appt. Hi all, Im sorry i didnt update yesterday, I just didnt feel like it... The appt went as i thought it would, I have been researching soo much that i kinda had an idea as to what would be said. It did help with the questions I had to ask to know a little about it beforehand. Basically its a sit and wait game... aortic root is dialated to 26mm. These do not change over night so his next echo will be in Nov ( one year apart) It is felt that has a connective tissue disorder that has affected his heart, the two main one mentioned are Marfans Syndrome and Elhers Danlos Syndrome. His dialation might not change, or might change slowly, or quickly, we just dont know. if and when it reaches 50mm he will need heart surgery. As the root dialates it gets weaker and weaker, it is felt that surgery done at this point is most benefical to avoid rupture which would kill him. will likely need beta blockers if it does continue to dialate in the future to keep his blood pressure low ( less pressure on the " weak spot " ). At this time hes not to play any contact sports ( hockey, football, wrestling, weight lifting etc) but he did say Nick can play soccer this summer. Nick is finally feeling good from the remicade that hes ready to give sports another try. It was also recommended that the rest of my boys get echos done, this is genetic and they all have a chance of having what is dealing with. So thats it in a nutshell, not the greatest news, but im the kind of person that needs black and white answers, these i can deal with, its the grey areas that I can't. hugs Helen and ( systemic ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 Helen I am so sorry to read this news. Hugs to you and Nick and the whole family. You are all in my prayers. This little guy doesn't need another thing to deal with. Michele ' Cardiology Appt. Hi all, Im sorry i didnt update yesterday, I just didnt feel like it... The appt went as i thought it would, I have been researching soo much that i kinda had an idea as to what would be said. It did help with the questions I had to ask to know a little about it beforehand. Basically its a sit and wait game... aortic root is dialated to 26mm. These do not change over night so his next echo will be in Nov ( one year apart) It is felt that has a connective tissue disorder that has affected his heart, the two main one mentioned are Marfans Syndrome and Elhers Danlos Syndrome. His dialation might not change, or might change slowly, or quickly, we just dont know. if and when it reaches 50mm he will need heart surgery. As the root dialates it gets weaker and weaker, it is felt that surgery done at this point is most benefical to avoid rupture which would kill him. will likely need beta blockers if it does continue to dialate in the future to keep his blood pressure low ( less pressure on the " weak spot " ). At this time hes not to play any contact sports ( hockey, football, wrestling, weight lifting etc) but he did say Nick can play soccer this summer. Nick is finally feeling good from the remicade that hes ready to give sports another try. It was also recommended that the rest of my boys get echos done, this is genetic and they all have a chance of having what is dealing with. So thats it in a nutshell, not the greatest news, but im the kind of person that needs black and white answers, these i can deal with, its the grey areas that I can't. hugs Helen and ( systemic ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 Helen, Many prayers for a positive outcome on echo to be done next time. Always in my thoughts and prayers! hplta Rusty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 oh Dear God what next? Helen, , and the entire family- know that you have the thoughts and prayers of this family, and I'll light another candle for him at Mass this weekend. Excuse my ignorance, but since Systemic can affect the internal organs as well, is it likely that it has either brought this on, or exacerbated it? Either way, it's not great. Fingers crossed that the other boys are clear, and that Nick's doctors find the right treatment- fast! hugs, Jo & Grant Bayly, 3, extended oligo Violet, 2, Mistress of Mischief , 13, ADHD/ODD (and new, improved teenage hormones for good measure!) > > Hi all, > > Im sorry i didnt update yesterday, I just didnt feel like it... > > The appt went as i thought it would, I have been researching soo > much that i kinda had an idea as to what would be said. It did help > with the questions I had to ask to know a little about it beforehand. > > Basically its a sit and wait game... aortic root is dialated > to 26mm. These do not change over night so his next echo will be in > Nov ( one year apart) It is felt that has a connective > tissue disorder that has affected his heart, the two main one > mentioned are Marfans Syndrome and Elhers Danlos Syndrome. His > dialation might not change, or might change slowly, or quickly, we > just dont know. if and when it reaches 50mm he will need heart > surgery. As the root dialates it gets weaker and weaker, it is felt > that surgery done at this point is most benefical to avoid rupture > which would kill him. will likely need beta blockers if it > does continue to dialate in the future to keep his blood pressure > low ( less pressure on the " weak spot " ). At this time hes not to > play any contact sports ( hockey, football, wrestling, weight > lifting etc) but he did say Nick can play soccer this summer. Nick > is finally feeling good from the remicade that hes ready to give > sports another try. > > It was also recommended that the rest of my boys get echos done, > this is genetic and they all have a chance of having what > is dealing with. > > So thats it in a nutshell, not the greatest news, but im the kind of > person that needs black and white answers, these i can deal with, > its the grey areas that I can't. > > hugs Helen and ( systemic ) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2006 Report Share Posted February 6, 2006 Good morning Helen, I just read your post...there are no words here to take the pain away..and sadness that I am sure you are feeling....I just can't believe that you have one more thing to deal with...I soooo admire your strength....I am guessing that if he needed anything (surgery) he would go to Mayo??? It is good to know that he would recieve the best treatment available...and very fortunate that you were even able to find out that he has this dilitation....knowing what you are dealing with is always better than not knowing. Sending you love and prayers from texas, Marguerite and > > Hi all, > > Im sorry i didnt update yesterday, I just didnt feel like it... > > The appt went as i thought it would, I have been researching soo > much that i kinda had an idea as to what would be said. It did help > with the questions I had to ask to know a little about it beforehand. > > Basically its a sit and wait game... aortic root is dialated > to 26mm. These do not change over night so his next echo will be in > Nov ( one year apart) It is felt that has a connective > tissue disorder that has affected his heart, the two main one > mentioned are Marfans Syndrome and Elhers Danlos Syndrome. His > dialation might not change, or might change slowly, or quickly, we > just dont know. if and when it reaches 50mm he will need heart > surgery. As the root dialates it gets weaker and weaker, it is felt > that surgery done at this point is most benefical to avoid rupture > which would kill him. will likely need beta blockers if it > does continue to dialate in the future to keep his blood pressure > low ( less pressure on the " weak spot " ). At this time hes not to > play any contact sports ( hockey, football, wrestling, weight > lifting etc) but he did say Nick can play soccer this summer. Nick > is finally feeling good from the remicade that hes ready to give > sports another try. > > It was also recommended that the rest of my boys get echos done, > this is genetic and they all have a chance of having what > is dealing with. > > So thats it in a nutshell, not the greatest news, but im the kind of > person that needs black and white answers, these i can deal with, > its the grey areas that I can't. > > hugs Helen and ( systemic ) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 Helen, This news hit me from left field, or maybe I haven't been paying close attention. I'm with you...as long as they know what it is and there's a treatment plan or a course of action, I " m OK. Sorry to hear the news though. Extra hugs for Nick tonight. Stacia and Hutner 9 systemic, uveitis Quote Link to comment Share on other sites More sharing options...
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