Guest guest Posted July 26, 2000 Report Share Posted July 26, 2000 Can anyone offer advice please? My daughter has just had to bring (5) home from holiday after only 4 days as the last 3 nights has woke up screaming and has been inconsolable. Also in the daytime she has been most upset at various times but at other times has been OK. says she seems to have been just looking at the wall in panic and looked really frightened as if she was hallucinating. wondered if it was that she was in a strange place although they took her into their bed to try to settle her down. It is not like who is usually very happy and placid. is taking her to the doctors tomorrow for a check-up but she does not have a temperature or any signs of ill health. It is really difficult as does not communicate and I think it has really frightened and her husband Dave. Has anyone experienced anything like this with a Charge child? Sue worried Grandma to . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2000 Report Share Posted July 26, 2000 Hi! Don't have any experience here, but would suggest making certain that can see and is tracking-retinal detachment and blindness would be frightening. Cheryl, , (6), (4, CHaRGE) MI >>> grandma.grandad@... 07/26/00 02:03PM >>> Can anyone offer advice please? My daughter has just had to bring (5) home from holiday after only 4 days as the last 3 nights has woke up screaming and has been inconsolable. Also in the daytime she has been most upset at various times but at other times has been OK. says she seems to have been just looking at the wall in panic and looked really frightened as if she was hallucinating. wondered if it was that she was in a strange place although they took her into their bed to try to settle her down. It is not like who is usually very happy and placid. is taking her to the doctors tomorrow for a check-up but she does not have a temperature or any signs of ill health. It is really difficult as does not communicate and I think it has really frightened and her husband Dave. Has anyone experienced anything like this with a Charge child? Sue worried Grandma to . For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2000 Report Share Posted July 27, 2000 Hi. How bout the possibility of siezures. That may explain the hallucination like episodes. Does she stare off or stay still for a long peiriod of time. This may be temporal lobe siezures. I have them. They are kinda scary cause you can get strange visual or auditory hallucinations. Im kinda use to them now, but they are kinda creepy, even for me. Would make sence why a small child would be terrified! Well, hope you find out what is happening, and hope she feels better soon! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2000 Report Share Posted July 27, 2000 Oh, one more thing, temporal lobe seizuers are hard to detect. Sometimes you have to test many times. I had 6 ECG (sp?)and 2 MRI's before they detected them. Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2000 Report Share Posted July 27, 2000 > >Reply-To: CHARGEegroups >To: CHARGEegroups >Subject: Help Please >Date: Wed, 26 Jul 2000 18:03:50 -0000 > >Can anyone offer advice please? >My daughter has just had to bring (5) home from holiday >after only 4 days as the last 3 nights has woke up screaming >and has been inconsolable. Also in the daytime she has been most >upset at various times but at other times has been OK. says >she seems to have been just looking at the wall in panic and looked >really frightened as if she was hallucinating. Hi Sue! My son, Landon has a tendancy to react the same way at different times. For instance, my oldest son played basketball this past year, and everytime we went to a certain type of gym for a game, he would scream as soon as we walked in the door. I don't know if it was the height of the ceilings and beams and lights or if it was the noise. Some gyms did not bother him though. Also, we have recently built a boathouse on our pier with a metal roof and beams. And for some reason he cries everytime we go onto the pier now. He also looks at the boathouse like he is truly afraid of it. I can't figure it out. > wondered if it was that she was in a strange place although >they took her into their bed to try to settle her down. It is not >like who is usually very happy and placid. is taking her >to the doctors tomorrow for a check-up but she does not have a >temperature or any signs of ill health. It is really difficult as > does not communicate and I think it has really frightened > and her husband Dave. >Has anyone experienced anything like this with a Charge child? >Sue worried Grandma to . > ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2000 Report Share Posted July 27, 2000 Hi Sue, There are so many possibilities here, I am glad you are seeking medical advice. It is true that pain seems to be worse at night. Also, at five years old she may be heading into a period of nightmares. My non-CHARGER Seth (5) has a hard time with nightmares, and unless he fully awakes, he'll continue to be upset, and it takes a lot to get him to fully wake up. If you only see this at night, and her behavior is pretty normal during the day, I would lean toward the nightmare or night terror explanation. If she tugs at her ears, or has additional episodes during the day, then I would suspect a medical problem. Oh, one other possibility would be gas. Is she regular? Any diet changes? Good luck. Let us know what you learn. Tim Hartshorne, father of (11) Sue & Terry Barker wrote: > Can anyone offer advice please? > My daughter has just had to bring (5) home from holiday > after only 4 days as the last 3 nights has woke up screaming > and has been inconsolable. Also in the daytime she has been most > upset at various times but at other times has been OK. says > she seems to have been just looking at the wall in panic and looked > really frightened as if she was hallucinating. > wondered if it was that she was in a strange place although > they took her into their bed to try to settle her down. It is not > like who is usually very happy and placid. is taking her > to the doctors tomorrow for a check-up but she does not have a > temperature or any signs of ill health. It is really difficult as > does not communicate and I think it has really frightened > and her husband Dave. > Has anyone experienced anything like this with a Charge child? > Sue worried Grandma to . > > > > For information about the CHARGE Syndrome > Foundation or to become a member please > contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2000 Report Share Posted July 27, 2000 Hi! Maybe the kids are worried about different situations that have anything in common with a hospital setting where they know that someone will likely start to hurt them? We finally decided that that might be why has trouble with transitions to sleeping in a different house or hotel while travelling and why the consistency of a travel trailer (same bed during travels or regular bed at home) has helped us all to be able to sleep while on the road. Cheryl, , (6), (4, CHaRGE) MI >>> nasans351@... 07/27/00 12:31PM >>> > >Reply-To: CHARGEegroups >To: CHARGEegroups >Subject: Help Please >Date: Wed, 26 Jul 2000 18:03:50 -0000 > >Can anyone offer advice please? >My daughter has just had to bring (5) home from holiday >after only 4 days as the last 3 nights has woke up screaming >and has been inconsolable. Also in the daytime she has been most >upset at various times but at other times has been OK. says >she seems to have been just looking at the wall in panic and looked >really frightened as if she was hallucinating. Hi Sue! My son, Landon has a tendancy to react the same way at different times. For instance, my oldest son played basketball this past year, and everytime we went to a certain type of gym for a game, he would scream as soon as we walked in the door. I don't know if it was the height of the ceilings and beams and lights or if it was the noise. Some gyms did not bother him though. Also, we have recently built a boathouse on our pier with a metal roof and beams. And for some reason he cries everytime we go onto the pier now. He also looks at the boathouse like he is truly afraid of it. I can't figure it out. > wondered if it was that she was in a strange place although >they took her into their bed to try to settle her down. It is not >like who is usually very happy and placid. is taking her >to the doctors tomorrow for a check-up but she does not have a >temperature or any signs of ill health. It is really difficult as > does not communicate and I think it has really frightened > and her husband Dave. >Has anyone experienced anything like this with a Charge child? >Sue worried Grandma to . > ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2000 Report Share Posted July 28, 2000 Hi Sue- WOW, I FEEL FOR YOU!!! went through a 'spell' when he was about 6 or 7 years old that lasted a year. At least 5 nights a week he would wake up a few hours after going to sleep at night screaming bloody murder. It took months for him to explain what was happening. He eventually was able to sign to us about monsters. For several years surrounding these episodes was going through a a phase of drawing the most frightening pictures of toothy three-headed creatures and a variety of other scarey critters. He was having the terrible night terrors as Tim mentioned. We never thought it would end and felt so bad for him as he had no control of these awful dreams. Just a thought, keep us posted as to what you discover. Sally (mom to , 18) >Hi Sue, > >There are so many possibilities here, I am glad you are seeking medical >advice. It is true that pain seems to be worse at night. Also, at five >years old she may be heading into a period of nightmares. My non-CHARGER >Seth (5) has a hard time with nightmares, and unless he fully awakes, he'll >continue to be upset, and it takes a lot to get him to fully wake up. > >If you only see this at night, and her behavior is pretty normal during the >day, I would lean toward the nightmare or night terror explanation. If she >tugs at her ears, or has additional episodes during the day, then I would >suspect a medical problem. > >Oh, one other possibility would be gas. Is she regular? Any diet changes? > >Good luck. Let us know what you learn. > >Tim Hartshorne, father of (11) > >Sue & Terry Barker wrote: > >> Can anyone offer advice please? >> My daughter has just had to bring (5) home from holiday >> after only 4 days as the last 3 nights has woke up screaming >> and has been inconsolable. Also in the daytime she has been most >> upset at various times but at other times has been OK. says >> she seems to have been just looking at the wall in panic and looked >> really frightened as if she was hallucinating. >> wondered if it was that she was in a strange place although >> they took her into their bed to try to settle her down. It is not >> like who is usually very happy and placid. is taking her >> to the doctors tomorrow for a check-up but she does not have a >> temperature or any signs of ill health. It is really difficult as >> does not communicate and I think it has really frightened >> and her husband Dave. >> Has anyone experienced anything like this with a Charge child? >> Sue worried Grandma to . >> >> >> >> For information about the CHARGE Syndrome >> Foundation or to become a member please >> contact marion@... or visit >> the CHARGE Syndrome Foundation web page >> at http://www.chargesyndrome.org > > > > >For information about the CHARGE Syndrome >Foundation or to become a member please >contact marion@... or visit >the CHARGE Syndrome Foundation web page >at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
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