Guest guest Posted February 10, 2005 Report Share Posted February 10, 2005 Kim - How did you finally diagnose Dylan with the migraines? Is it just by process of elimination? Jody Kim Lauger wrote: Dylan had his first abdominal migraine at 4 months. It took us a year to figure out what they were. He would wake up happy, no problem, then suddenly he would start retching (has a Nissen, so doesn't vomit by mouth) his skin would break out in a cold sweat and he would be so pale. I would open his g-tube for him to vomit, then he would go still in my arms. If I moved the slightest bit he would start retching all over again. Now I can tell by the change in his eyes that a migraine is coming. We give advil at the earliest sign and they very rarely get to full blown retching and vomiting. Kim L > > <DIV>Can anyone tell me the symptoms of abdominal > migraines for their CHARGE kids? & nbsp; Ethan has had 2 > " episodes " in the last 5 months of unknown > origin. & nbsp; For both instances, he woke up in the > morning happy and playful. & nbsp; Within an hour, he > will start crying, be irritable, and will start to go > to sleep. & nbsp; Then he will sleep for hours and wake > up and vomit periodically. & nbsp; And after about 3-4 > hours of this, he will wake up and act like nothing > happened. & nbsp; He & nbsp;does not appear sick...no > fever, saturations are good, etc. & nbsp; & nbsp;This > happened last Sept and we rushed him to the ER not > knowing what was happening. & nbsp; Their speculation > was that he had a seizure, but the EEG didn't indicate > anything abnormal. & nbsp; Then the same thing happened > yesterday. & nbsp; I spoke to his neurologist yesterday > and he is going for another EEG tomorrow. & nbsp; One of > Ethan's nurses mentioned abdominal migraines and I > know that this has affected some CHARGErs. & nbsp; Any > information or guess would be appreciated. & nbsp; > Thanks!</DIV> > <DIV> & nbsp;</DIV> > <DIV>Jody - mom to Ethan (2 1/2 yrs ChARGE) and > (5.5 yrs)</DIV> > > > > > __________________________________ > Do you Yahoo!? > Yahoo! Mail - You care about security. So do we. > http://promotions.yahoo.com/new_mail > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > 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. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or > email info@.... > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > 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 February 10, 2005 Report Share Posted February 10, 2005 The neurologist suggested it as a possibility. The response to advil let us know this was probably accurate. I don't think one can ever tell for sure. Kim > > Kim - How did you finally diagnose Dylan with the migraines? Is it just by > process of elimination? > > Jody > > Kim Lauger wrote: > Dylan had his first abdominal migraine at 4 months. It took us a year to > figure out what they were. He would wake up happy, no problem, then > suddenly he would start retching (has a Nissen, so doesn't vomit by mouth) > his skin would break out in a cold sweat and he would be so pale. I would > open his g-tube for him to vomit, then he would go still in my arms. If I > moved the slightest bit he would start retching all over again. Now I can > tell by the change in his eyes that a migraine is coming. We give advil at > the earliest sign and they very rarely get to full blown retching and > vomiting. > > Kim L > > > >> >> <DIV>Can anyone tell me the symptoms of abdominal >> migraines for their CHARGE kids? & nbsp; Ethan has had 2 >> " episodes " in the last 5 months of unknown >> origin. & nbsp; For both instances, he woke up in the >> morning happy and playful. & nbsp; Within an hour, he >> will start crying, be irritable, and will start to go >> to sleep. & nbsp; Then he will sleep for hours and wake >> up and vomit periodically. & nbsp; And after about 3-4 >> hours of this, he will wake up and act like nothing >> happened. & nbsp; He & nbsp;does not appear sick...no >> fever, saturations are good, etc. & nbsp; & nbsp;This >> happened last Sept and we rushed him to the ER not >> knowing what was happening. & nbsp; Their speculation >> was that he had a seizure, but the EEG didn't indicate >> anything abnormal. & nbsp; Then the same thing happened >> yesterday. & nbsp; I spoke to his neurologist yesterday >> and he is going for another EEG tomorrow. & nbsp; One of >> Ethan's nurses mentioned abdominal migraines and I >> know that this has affected some CHARGErs. & nbsp; Any >> information or guess would be appreciated. & nbsp; >> Thanks!</DIV> >> <DIV> & nbsp;</DIV> >> <DIV>Jody - mom to Ethan (2 1/2 yrs ChARGE) and >> (5.5 yrs)</DIV> >> >> >> >> >> __________________________________ >> Do you Yahoo!? >> Yahoo! Mail - You care about security. So do we. >> http://promotions.yahoo.com/new_mail >> >> >> >> Membership of this email support groups does not constitute membership in the >> CHARGE Syndrome Foundation or CHARGE Syndrome Canada. >> 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. For CHARGE Syndrome Canada >> information and membership, please visit http://www.chargesyndrome.ca, or >> email info@.... >> 7th International >> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. >> 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 February 12, 2005 Report Share Posted February 12, 2005 Lori- Just so you know, you're not alone. We also chose not to do the fundo that the drs recommended because they automatically paired it with Gtube placement. We were lucky that Aubrie outgrew her reflux before age 2. Before then, we managed with medication, positioning, careful feeding, etc. It was rough, but luckily it all worked out. Michele W > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2005 Report Share Posted February 14, 2005 Kim- I'm sorry you're going thru such aggravation with the reflux. Aubrie had it too, so I can relate somewhat. I hope you get it figured out and find a solution that works for . We managed with medicine only, she gained weight very slowly, but her reflux had resolved by 's age. Even with the reflux resolved, she still gains weight very slowly. At 7 yrs, she was just at 40 lbs. She hovered at 38 for ages and tried and tried to get to 40 to be legal in the booster seat. After her January illnesses, she's back to 38!! Argh! I noticed that you have an older child too. My oldest, , was 6 when Aubrie was born and I've always been very thankful that he was so much older. Is athan handling things ok? is 13 now and just great with his sister. All of his friends are wonderful with her too. He bugs her on purpose to make her whine (cuz it's so cute) -- but we rejoiced when they began sibling rivalry cuz we never thought she'd be able to talk and argue!! He is our babysitter now and does a good job of caring for her. I think he adores her as much as we do -- you can see it in his eyes when she does something sweet and cute. He doesn't seem to be resentful of the extra attention she takes. He's a very easygoing guy anyway. We include him in appts and surgeries enough that he understands but doesn't feel imposed upon to asisst in her medical care. Her trips to the doctor become fun shopping trips so we make the most of it. He's even had friends join us on ocassion. My only regret is that he'll be gone to college just when she needs his support in high school. I'm rambling a bit -- but I thought you might be able to share in the gratitude for an older sibling. I don't know how the folks with several young children manage. Michele W Aubrie's mom 7 yrs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2005 Report Share Posted February 16, 2005 ---about the sibling stuff. Henry is 2 1/2 years older than Rose, and I believe she has had a great impact on his life, his whole first 2 1/2 years he was with me and suddenly he spent so much time with my parents and others and I was in and out of the hospital with Rose. Nothing was like I said it was going to be. However, he was and still is included in all her appointments, etc. He rejoices in her achievments too, with the rest of us. He will point out to me things that she does that make him proud. They also play together at times, Rose is a bit of a tomboy and likes to play swords, go ride trikes on the driveway, and she is always tackling him. All that being said, there is normal sibling rivalry too, which drives me crazy sometimes! Now Forrest has never known any different and Rose and Forrest are almost like twins at times. They are 20 months apart. I think that Forrest will potty train before Rose at this point. Rose and Forrest are each others best friends and also each others best rivals. It can be challenging, exhausting at times. I can see though that I really wouldn' t want it any other way. I remember your son from one of the conferences, I think in Indiana, he did seem like such a sweet person! Very good for Aubrie to have a big brother like him. And it is nice that he will babysit and not mind! Beckett---Rose, Henry and Forrests mom Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.