Repeated Bouncing/Perceptual Distortion/Night Terrors/Temp perception

[daphne]

1)My 7 year old daughter has had repeated nightly head bouncing since she was 15-18 month old. In her sleep, she lifts from the waist and slams face down into the bed. This can last from 5-15 minutes and she does it multiple times during the night. She does not appear to be awake and does not respond. Two pharmacists that we know have seen this behavior and are of the opinion that it almost has a seizure quality to it. Her doctor at 18 months said that kids neuro systems are just immature, so I assumed she would grow out of it. When she didn't by age 4, I asked about it and got a shoulder shrug. Her current doctor ( a different one) recently said he didn't know anything that could cause it. Riding in the car, she will bounce backward intensely. She is awake then. 2)She has off and on had cycles of sleepwalking since age 3 which I basically ignored (except to extra secure doors and staiways during cycles) because my brother was a notorious sleepwalker when we were kids. But in March 1999, she began nightly sleep terror incidents. She would get up 1/2-1 1/2 hours after falling asleep screaming, knocking things over, running into doors or walls, couldn't be comforted, wasn't awake, didn't remember incident in the morning. She doesn't move her limbs normally during those episodes. Her movements remind me of my autistic nephew. Her doctor said to put her to bed earlier and not let her eat or drink anything past 6:00pm. It didn't help and caused her alot of unhappiness. She was already getting 10hrs sleep and woke up an hour earlier if she fell asleep an hour earlier. She finally quit the nightly terrors in early to mid-August. Now she's up about 3 times a week with mild whimpering and after we get her to go to the toilet, she will go back to bed. We have her use the restroom before she goes to bed and does not drink an unusual amount of liquid. She doesn't awake during these episodes either. I'm afraid to go to bed before an 1 1/2 after she falls asleep, because although these episodes aren't as intense as the earlier ones, she is confused and wanders unless directed to the bathroom. 3)During the sleep terror cycle, she experienced incidents of perceiving everything as being very small, including me as she was falling asleep. This terrified her and she was afraid to go to bed. Her doctor told me that hallucinations happen when people are falling asleep and gave the same advice as problem 2, with no results. My son convinced her to remove the night light so she wouldn't see anything and not be afraid. She's afraid of the dark, but agreed because she's more afraid of seeing things small. That went away after 3 weeks. But I'm concerned because my brother tells me he has had the same problem since childhood (except he sees things as big) and he doesn't have to be falling asleep. He has had episodes after waking up while laying in bed talking to his wife. So, I'm afraid these episodes may reoccur with my daughter. 4)Since she was small, she has perceived things as being uncomfortably hot that are not. At a younger, she wouldn't take a bath unless it was ice cold and ate food stone cold. This has improved, but she still considers teps that I consider lukewarm to be uncomfortably hot. I consider all this abnormal and worrisome. The doctors just shrug. Should I pursue this and if so, with who? Sorry this is so long. She seems normal and happy when she's up and about, and is an above average student. Thank you. If nothing else, you could ease my mind.

[CCF Neuro[P] MD,RPS]

Dear Daphne:

Most of what you describe sounds like paroxysmal night time events.  Things like night terrors, sleep walking, head banging are not seizures but naturally occuring events in some children.  I would just talk to your pediatric neurologist about them.  They will not do your daughter harm.  There might be some problems with sleep walking if she gets out of the house.  I would make sure that this can't happen if she walks far.  The hallucinations might be more of a problem.  Your daughter might need a sleep study to see if she has early onset REM or not, and also her sleep cycles.  These types of hallucinations are associated with a sleep disorder in some people, called hypnagogic hallucinations.  Although in some people this is an isolated occurence.  I would just get it checked out.  Your daughter does not seem to have the other symptoms of a disorder called narcolepsy.

Sincerely,

CCF Neuro MD

[daphne]

Would the sleep study need to be done when she was in a cycle of the perceptual distortions or would it be useful done anytime? Where would you get a sleep study done? She doesn't have a pediatric neurologist since, in our area, they require a referral and our family doctor basically just blew my questions off except to tell me to not let her eat or drink after a certain time and to make her go to bed earlier.

[CCF Neuro[P] MD, RPS]

Dear Dapine:

I am not sure what to tell you.  If your primary care physician will not give you a referral then I guess you pay out of pocket or forego the test.  Except for the hallucations, the other behaviors are just paroxysmal behaviors that should go away on their own.  They are not harmful and will not damage your daughter.  What the sleep study will provide is whether your daughter has rapid onset REM which is associated with a sleep disorder and hallucations as previous described.  

Sincerely,

CCF Neuro MD

[marie]

I have a 90 year old grandmother who has the same syptoms (symptoms), inner bouncing (like she was on a bouncy ball) even when she is laying in bed.  She has problems walking straight and tends to sway. She does'nt get dizzy and nauseated so I ruled out Vertigo.  She is otherwise in very good health.  She has had catarac surgery on her eyes.  She has had this condition for 15 years.  I don't think she will grow out of it.  Please help.

[anon]

Try this...Print out the forum ...your questions and the answers. When you go to the Dr. the next time..tell him that you have been surfing the web for an answer and/information.

I have used this method before..(I choose my words carefully so as not to offend my attending physician).  Sometimes if you tell them and/or show them the printed copy..they will pursue the testing.  

I have a daughter that as an infant was delayed..had strange episodes at sleep. (Much different..and a totally different problem).  Anyway..the doctors went from it's still considered normal..to giving her sleep meds to make her sleep thru "the episodes"..etc.  We finally got some answers...but it took a lot of convincing to get our MD to refer her on to a bigger research facility..and for further testing.

Keep plugging away.  Good luck.

[daphne]

Thanks Anon. My concern wasn't with insurance paying for it. It was with the fact that I know that the neurologist's office's here won't let a patient make an appointment. They require your family doctor's office to do it. So, I do need a strategy to get him to listen.

[CCF Neuro[P] MD, RPS]

Thanks for the information.

CCF Neuro MD

[kass]

Any chance you can change family doctors??  Find someone more willing to make referals??  Or maybe even call the insurance company and talk with them about it....occasionally you can find someone there to listen to you. If your concerned about this you need to find some way to have it looked into. Might even be worth making a bit of a stink in your family doctors office in order to convince him of the need. I am sending my best Mother from H*ll vibes your way!!!

BIG hugs,
Kass

[CCF Neuro[P] MD, RPS]

Dear Kass:

We really don't like mothers from H***.  But, I can understand about getting good medical care for your loved ones.  For every door that is closed, there is an open window somewhere (too bad it is often the bathroom window letting out the stink of the office).  Best of luck.

Sincerely,

CCF Neuro MD