Guest guest Posted August 19, 2008 Report Share Posted August 19, 2008 Yes my daughter does this. The one correlation that I see is that she has light colored BM's on that day. I use to think that it was from Soy but I have removed that from her diet and now I don't know why it happens but it does. Sheri From: Caroline <carrieps@...> Subject: mouth hanging open Date: Tuesday, August 19, 2008, 10:20 PM Our daughter has had this weird symptom periodically of her mouth being open and her jaw loose. This usually happens pretty constantly for one day and then will stop and won't return for another week or two. She is very regressed and non-responsive on that day. I wanted to see if others had seen this in their children. If so, have you heard any explanation? ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2008 Report Share Posted August 19, 2008 Hey - Have you seen a neurologist re this? I have heard of this, but not directly from a parent on the list. I heard of it in reading, and I cannot remember what it was called yet. If more comes to me over the next couple of days I'll get back to you. Is it like her jaw is slack? Be sure to take a video of her on a good day, then be sure to video it extensively when it happens. Sounds like the possibility of a seizure. *Don't panic*. (Yeah right, right?) I wouldn't even say that because I know it would terrify you, but the fact that it is a one-day type of occurance with cognitive and behavioral changes would suggest that. Keep in mind seizures are common with our kids, and very often can be relatively " ok " - and soooo many people have experienced a reduction or complete remission of seizures on the protocol - even severe, previously intractable seizures. It could also be something akin to migraines - different obviously, but the kind of inflammation that attacks for a day or more, makes life miserable, then vanishes until the next time. I would really guess that this is neurological - in a migraine or seizure way. There are plenty of seizures types that don't involve twitching or grand mal types. Lots of our kids have absence seizures - they seem awake and suddenly seem to daydream, be non-responsive at the time, then move on like nothing had happened. And they can't even usually be detected by EEG. That's why filming it would be helpful. Hang in there - don't be terrified ... Have you already seen a doctor before re this? I'll have to figure out the term before I can give more info. Can you provide any other observations? mouth hanging open Our daughter has had this weird symptom periodically of her mouth being open and her jaw loose. This usually happens pretty constantly for one day and then will stop and won't return for another week or two. She is very regressed and non-responsive on that day. I wanted to see if others had seen this in their children. If so, have you heard any explanation? ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2008 Report Share Posted August 19, 2008 Sheri - Is she very unresponsive during that time too? And - is she, like, completely spaced out (that's the impression I got), or will she go about normally some of the day? I was imagining her going " zombie " when this is happening ... My youngest - when he is " off " , lets his mouth hang open kind of slack jawed when he's staring at the TV, but he can snap out of it... mouth hanging open groups (DOT) com Date: Tuesday, August 19, 2008, 10:20 PM Our daughter has had this weird symptom periodically of her mouth being open and her jaw loose. This usually happens pretty constantly for one day and then will stop and won't return for another week or two. She is very regressed and non-responsive on that day. I wanted to see if others had seen this in their children. If so, have you heard any explanation? ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2008 Report Share Posted August 19, 2008 >Just another thought. For the longest time we notice our son would drop his jaw when something was physically hard for him. We always chalked it up to his very low tone and poor coordination. But what we have recently found out, his very poor posture is causing him to breathe in a not so natural position and this is part of the result of this. He always had a high rib cage like that of an infant and his muscles were never strong enough to pull the ribs down into position. Well, the internal organs therefor do not go down into a good position causing my son to be in a fight or flight breathing pattern and then totally fatigued once he can sit and just rest (regualtion). I have started to see whats called a manual therapist for respiration and she said his jaw goes into this position because he is trying in an unconscience way to keep himself regulated.. Well, I have onle see this therapist 6 times and his ribs are finally being pulled down, he does not drule, and he can actuelly move his body around pretty well with the jaw dropping open. > Our daughter has had this weird symptom periodically of her mouth being > open and her jaw loose. This usually happens pretty constantly for one > day and then will stop and won't return for another week or two. She > is very regressed and non-responsive on that day. I wanted to see if > others had seen this in their children. If so, have you heard any > explanation?? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2008 Report Share Posted August 19, 2008 , I would say she is very spaced out. She is moving around but not really doing or saying much. She does not snap out it for that day or period of time. She will close her mouth for several seconds periodically and then it will fall open again. Seems very low energy and unhappy on these days as well like she is not feeling well. A lot of screaming and biting. My husband noticed on one of these days that she had an increase in facial grimacing (not sure about the other days as I didn't pay attention to that). He described the slack jaw as looking like a panting dog. wrote: > Sheri - > Is she very unresponsive during that time too? > And - is she, like, completely spaced out (that's the > impression I got), or will she go about normally some of the day? I > was imagining her going " zombie " when this is happening ... > My youngest - when he is " off " , lets his mouth hang open kind of slack > jawed when he's staring at the TV, but he can snap out of it... > > > mouth hanging open > groups (DOT) com > Date: Tuesday, August 19, 2008, 10:20 PM > > Our daughter has had this weird symptom periodically of her mouth being > open and her jaw loose. This usually happens pretty constantly for one > day and then will stop and won't return for another week or two. She > is very regressed and non-responsive on that day. I wanted to see if > others had seen this in their children. If so, have you heard any > explanation? ? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2008 Report Share Posted August 20, 2008 She is starting into space. We can bring her out of it by telling her to close her mouth. She might catch herself in a few moments with her mouth hanging open again. I have even seen her close her mouth with her hands as if the jaw didn't want to close. I just though she was mimicking me because in the beginning I would push up on her chin to show her what I wanted. Sheri From: Caroline <carriepspobox (DOT) com> Subject: mouth hanging open groups (DOT) com Date: Tuesday, August 19, 2008, 10:20 PM Our daughter has had this weird symptom periodically of her mouth being open and her jaw loose. This usually happens pretty constantly for one day and then will stop and won't return for another week or two. She is very regressed and non-responsive on that day. I wanted to see if others had seen this in their children. If so, have you heard any explanation? ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2008 Report Share Posted August 20, 2008 Has your daughter had an EEG? My little girl has absent siezures and spaces out often and her mouth will often be open during the siezures. She can have up to 50 siezures a day when not treated with medication. It can often be over looked with children who have autism. She is now taking medication and is improving. > > From: Caroline <carriepspobox (DOT) com> > Subject: mouth hanging open > groups (DOT) com > Date: Tuesday, August 19, 2008, 10:20 PM > > Our daughter has had this weird symptom periodically of her mouth being > open and her jaw loose. This usually happens pretty constantly for one > day and then will stop and won't return for another week or two. She > is very regressed and non-responsive on that day. I wanted to see if > others had seen this in their children. If so, have you heard any > explanation? ? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2008 Report Share Posted August 20, 2008 This sounds very similar to my son Noah. His jaw would be slack and he would drool. He's been diagnosed with absence seizures and is on Zarontin, but the symptoms never went completely away until about 3 months into protocol. We've actually been able to reduce his anti-seizure med and the symptoms didn't come back. At some point, we're hoping to take him off them completely. HTH, Robyn From: Caroline <carriepspobox (DOT) com> Subject: mouth hanging open groups (DOT) com Date: Tuesday, August 19, 2008, 10:20 PM Our daughter has had this weird symptom periodically of her mouth being open and her jaw loose. This usually happens pretty constantly for one day and then will stop and won't return for another week or two. She is very regressed and non-responsive on that day. I wanted to see if others had seen this in their children. If so, have you heard any explanation? ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2008 Report Share Posted August 20, 2008 , Our daughter has had two sleep deprived short EEG's where she never fell asleep. They both came back normal but we are wondered if they just didn't capture something because they were so short. We are trying to get a longer EEG. Have you only done the short one? \heatherloganhomes wrote: > > Has your daughter had an EEG? My little girl has absent siezures and > spaces out often and her mouth will often be open during the > siezures. She can have up to 50 siezures a day when not treated with > medication. It can often be over looked with children who have > autism. She is now taking medication and is improving. > > > > > > > > From: Caroline <carriepspobox (DOT) com> > > Subject: mouth hanging open > > groups (DOT) com > > Date: Tuesday, August 19, 2008, 10:20 PM > > > > Our daughter has had this weird symptom periodically of her mouth > being > > open and her jaw loose. This usually happens pretty constantly for > one > > day and then will stop and won't return for another week or two. > She > > is very regressed and non-responsive on that day. I wanted to see > if > > others had seen this in their children. If so, have you heard any > > explanation? ? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2008 Report Share Posted August 20, 2008 , I just wanted to throw in that when some kids are really congested (stopped up noses), they might breathe through their mouths. It sounds like more than that with your daughter, but just in case, I thought I¹d mention it. I don¹t know what meds she¹s on, but if she¹s on some, is it possible that one of them is causing this behavior? Could she have a sore throat? Tonsils or adenoids swollen? Could it be an indication of low muscle tone? I hope that you can figure it out soon. In the case of low tone and/or decrease awareness in and around her mouth, it might be something that a speech therapist could help address with exercises and oral stimulation. Caroline G. From: Caroline <carrieps@...> Reply-< > Date: Wed, 20 Aug 2008 13:08:18 -0700 < > Subject: Re: Re: mouth hanging open , Our daughter has had two sleep deprived short EEG's where she never fell asleep. They both came back normal but we are wondered if they just didn't capture something because they were so short. We are trying to get a longer EEG. Have you only done the short one? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2008 Report Share Posted August 20, 2008 No she has not have an EEG. Her eyes use to roll back in her head when she was stressed. When we told her to knock it off she did. Once she did this at her regular pediatrician and I asked her if she though it could possibly be a seizure and she said no because she didn't continue after we told her to stop. I am still not convinced. Sheri > > Has your daughter had an EEG? My little girl has absent siezures and > spaces out often and her mouth will often be open during the > siezures. She can have up to 50 siezures a day when not treated with > medication. It can often be over looked with children who have > autism. She is now taking medication and is improving. > > > > > > > > From: Caroline <carriepspobox (DOT) com> > > Subject: mouth hanging open > > groups (DOT) com > > Date: Tuesday, August 19, 2008, 10:20 PM > > > > Our daughter has had this weird symptom periodically of her mouth > being > > open and her jaw loose. This usually happens pretty constantly for > one > > day and then will stop and won't return for another week or two. > She > > is very regressed and non-responsive on that day. I wanted to see > if > > others had seen this in their children. If so, have you heard any > > explanation? ? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2008 Report Share Posted August 20, 2008 - My daughter is pretty unresponsive during her seizures. We can call her name and pull her hair with no response. They only last a few seconds. Some people report them lasting up to two minutes. We did the short eeg and they gave her something to put her to sleep. It was pretty clear that her eeg was very abnormal. Some places have an in home eeg. They set the kid up in the office and then you go home and record any seizures for 24 hours. If you think that she might be having seizures you should investigate futher. It's important to get her on medication. I can only imagine someone turning out the light all day long. It must make your world very unpredictable. -- In , Sheri <eszbi5@...> wrote: > > No she has not have an EEG. Her eyes use to roll back in her head when she was stressed. When we told her to knock it off she did. Once she did this at her regular pediatrician and I asked her if she though it could possibly be a seizure and she said no because she didn't continue after we told her to stop. I am still not convinced. Sheri > > > > > > > Has your daughter had an EEG? My little girl has absent siezures and > > spaces out often and her mouth will often be open during the > > siezures. She can have up to 50 siezures a day when not treated with > > medication. It can often be over looked with children who have > > autism. She is now taking medication and is improving. > > > > > > > > > > > > > > From: <thecolemans4@ ...> > > > Subject: Re: mouth hanging open > > > groups (DOT) com <mailto:% 40groups. com> > > > Date: Tuesday, August 19, 2008, 10:34 PM > > > > > > > > > > > > > > > > > > > > > Sheri - > > > Is she very unresponsive during that time too? > > > And - is she, like, completely spaced out (that's the > > impression I got), or will she go about normally some of the day? I > > was imagining her going " zombie " when this is happening ... > > > My youngest - when he is " off " , lets his mouth hang open kind of > > slack jawed when he's staring at the TV, but he can snap out of it... > > > > > > > > > mouth hanging open > > > groups (DOT) com > > > Date: Tuesday, August 19, 2008, 10:20 PM > > > > > > Our daughter has had this weird symptom periodically of her mouth > > being > > > open and her jaw loose. This usually happens pretty constantly for > > one > > > day and then will stop and won't return for another week or two. > > She > > > is very regressed and non-responsive on that day. I wanted to see > > if > > > others had seen this in their children. If so, have you heard any > > > explanation? ? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2008 Report Share Posted August 20, 2008 Caroline, Thanks for your response. She is on the protocol so she is on those medications though I don't think it started after starting those meds. She does have low tone and decreased awareness around her mouth so that would make sense except I don't understand why it will happen only on one day in a week or so and then barely at all the rest of the time. Caroline Glover wrote: > , > > I just wanted to throw in that when some kids are really congested > (stopped > up noses), they might breathe through their mouths. It sounds like more > than that with your daughter, but just in case, I thought I¹d mention it. > > I don¹t know what meds she¹s on, but if she¹s on some, is it possible that > one of them is causing this behavior? > > Could she have a sore throat? Tonsils or adenoids swollen? > > Could it be an indication of low muscle tone? > > I hope that you can figure it out soon. > > In the case of low tone and/or decrease awareness in and around her mouth, > it might be something that a speech therapist could help address with > exercises and oral stimulation. > > Caroline G. > > From: Caroline <carrieps@... <mailto:carrieps%40pobox.com>> > Reply-< <mailto:%40>> > Date: Wed, 20 Aug 2008 13:08:18 -0700 > < <mailto:%40>> > Subject: Re: Re: mouth hanging open > > , > > Our daughter has had two sleep deprived short EEG's where she never fell > asleep. They both came back normal but we are wondered if they just > didn't capture something because they were so short. We are trying to > get a longer EEG. Have you only done the short one? > > > > Quote Link to comment Share on other sites More sharing options...
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