Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 n - I am so sorry to hear that is in such pain... I wish I had an answer. I ached when I read the way you signed your post... " Feeling Deflated and at a loss " Ugh... I know you have talked about this before... I actually remember trading a few messages before about this issue specifically... and your newest post triggers more questions about this condition. I am wondering, during the cycles that experiences, what are her symptoms? How was she diagnosed? (Again... I am sorry I can't remember the specifics... I know we've discussed before.) My daughter, Gracie, also is J-tube fed because of cyclical abdominal migraines and the need to constantly have her G-port vented. (Plus, her stomach never emptied in a timely manner.) She still experiences these cycles of what we think are abdominal migraines with headaches... (She covers her good eye with her hand or a washcloth to block out light, her tummy is especially sensitive to movement (she will vomit bile if not vented) and she prefers tremendous pressure on her head and face, pulling her face into her crib rails for pressure or pressing HARD against her face.) We were thinking that these cycles (she's had four since New Year's... each lasting 6 days) were really long, torturous migraines, but after re-reading info on the Trigeminal Neuralgia website... I wonder. Do any of these symptoms sound familiar? We, too, are desperate to end the tremendous pain that Gracie is clearly experiencing. Wishing you and solutions and answers tomorrow. Kristi Mommy to Gracie, 3yrs in April! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 ask him if you could try another med ive got sipramil in mind i take this for chronic pain it works wonders with me but it also helps with my ocd like pickiness and fidigness miss oen night and im all over the place hugs ellen > > Hello Everyone, > > is seeing the main Neurologist at Children's Tomorrow and she has > had a horrible week with her neuralgia. She had 31 wonderful days without > pain, then she had an episode, it wasn't so bad, then 1 week later, she goes > into another episode and it is severe. I pretty much know what I am going > to ask him,and talk to him about, the episodes are hard to contol, very > difficult to break up the cylce. She is now on 4 meds to help try and > control this horrible condition. I am going to ask him, why is it so > difficult to control and why is it so cyclical. I am going to ask him if > cyclical vomiting is the possible trigger, because she alway vomits with > every episode and that is why she is J-tube fed.( she is on meds for > cyclical vomiting since Dec.) Is there something specific, that I should > ask him or tell him about CHARGE? > > At this point, I am growing more and more desperate, as I wonder if > will ever live a pain free life. I am becoming depressed and so > stressed out as this has taken a toll on my nerves. Any advice or input > would be greatly appreciate. > > So sorry if I seem sad---rough week. > > Feeling Deflated and at a loss, > > > n-mom to 3yrs. CHARGE ,Zach 10yrs. Jordan 7 yrs, Candace 2yrs > and wife toLester for 11 yrs. > > > --------------------------------- > Yahoo! Mail > Bring photos to life! New PhotoMail makes sharing a breeze. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 n, No wonder you are deflated, I think watching your child suffer is the MOST painful thing we as parents cope with - physical, or emotional pain. It is such a helpless feeling and we grieve so much at their pain. I think it important that he know that cyclical vomiting, abdominal migraines are common in CHARGE. SOme think they are too young. See if that makes him think of any other options. Has Vicotria or Gracie ever had CT scans to evaluate their sinuses to see if the sinus infection is putting pressure on the nerve? Finally you know I think Cranial Sacral Therapy was key to getting a handle on Dylan's migraines when he was younger and then when I had my trigeminal nerve pain, cranial sacral helped me as well. Perhpas since her situation is so unique, the neurologist could get insurance to cover some alternative therapies, such as CST or HANDLE. Something has to be done! Hugs in the meantime. Kim > Hello Everyone, > At this point, I am growing more and more desperate, as I wonder if will ever live a pain free life. I am becoming depressed and so stressed out as this has taken a toll on my nerves. Any advice or input would be greatly appreciate. > > So sorry if I seem sad---rough week. > > Feeling Deflated and at a loss, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 and your wonderful handle lol > > n, > > No wonder you are deflated, I think watching your child suffer is the > MOST painful thing we as parents cope with - physical, or emotional > pain. It is such a helpless feeling and we grieve so much at their > pain. > > I think it important that he know that cyclical vomiting, abdominal > migraines are common in CHARGE. SOme think they are too young. See > if that makes him think of any other options. > > Has Vicotria or Gracie ever had CT scans to evaluate their sinuses to > see if the sinus infection is putting pressure on the nerve? > > Finally you know I think Cranial Sacral Therapy was key to getting a > handle on Dylan's migraines when he was younger and then when I had my > trigeminal nerve pain, cranial sacral helped me as well. Perhpas > since her situation is so unique, the neurologist could get insurance > to cover some alternative therapies, such as CST or HANDLE. > > Something has to be done! > > Hugs in the meantime. > > Kim > > > > Hello Everyone, > > At this point, I am growing more and more desperate, as I wonder if > will ever live a pain free life. I am becoming depressed and so > stressed out as this has taken a toll on my nerves. Any advice or input > would be greatly appreciate. > > > > So sorry if I seem sad---rough week. > > > > Feeling Deflated and at a loss, > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 Kim, It it hard to say how I feel, I have been seriously considering going to the Dr. for myself, and seeing if maybe I am suffering from anxiety or depession. I have thought about meds or therapy to help me deal with it, because I can't wrap my mind around this and so, I am struggling with my emotions, crying alot and I seemed stressed out over little things and I am always tired.. We did try medical massages,but hated to be touched during pain, it almost sent her over the edge,but I am going to ask about the Cranial Sacral Therapy, it possibly couldn't hurt, at least I don't see how. I also think the neurologist needs to be more involved, he was letting pain clinic manage her pain, but I think that he is going to have to oversee this from here on out. I am going in tomorrow and ask him alot of questions, I just hope he can give us realistic answers and some hope.....we really need some right now. n-mom to 3yrs. CHARGE ,Zach 10yrs. Jordan 7 yrs, Candace 2yrs and wife toLester for 11 yrs. --------------------------------- Yahoo! Mail Bring photos to life! New PhotoMail makes sharing a breeze. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 Thankyou Ellen, We are going to see if we can try another medicine, I will ask him about it. n-mom to 3yrs. CHARGE ,Zach 10yrs. Jordan 7 yrs, Candace 2yrs and wife toLester for 11 yrs. --------------------------------- Yahoo! Mail Use Photomail to share photos without annoying attachments. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 Thankyou Ellen, We are going to see if we can try another medicine, I will ask him about it. n-mom to 3yrs. CHARGE ,Zach 10yrs. Jordan 7 yrs, Candace 2yrs and wife toLester for 11 yrs. --------------------------------- Yahoo! Mail Use Photomail to share photos without annoying attachments. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 n, I have no words of comfort. It must be difficult to watch your child in pain and not being able to do much about it. I will hold hope in my heart for her. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 n, I have no words of comfort. It must be difficult to watch your child in pain and not being able to do much about it. I will hold hope in my heart for her. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote Link to comment Share on other sites More sharing options...
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