Three year old granddaughter having a hard time sleeping. Wakes up screaming. Just diagnosed with Chiari and Pendred syndrome. We see the neurosurgeon in March.
I think i replied to the wrong post, sorry im easily confused this this time of day. Also i would suggest a warm bath every night followed by lavendar and or chamomile lotion, the warm water will relax the muscles and the aromotherapy from lotion will help relax her. Also rubbing the lotion in will give her a lil massage. That with a really soft blanket and a good pillow should help some. Hope it helps. :)
Thanks Nykki. I'll take all the help I can get. Carol
Nykki said:
Hi Carol,
I know it must be rough for you and her mom. i have five so know how it feels when you don't want your babies to be in pain. Here is the problem. She is just so young that there isn't much sleep aid medication to help her. I am not sure if somethng like the sleepytime herbal tea can even be used for children (please ask her doctor about that). My daughter who has Juvenile Rheumatoid Arthritis takes a muscle relaxer everynight which helps her go to sleep. If she doesn't take it, she can't go to sleep. With her other illness, it can frightening, when you suddenly can't hear anymore. That could be scaring her and giving her night terrors. If so, that could be adding a psychological component to medical situations.
I could be wayyyyyy off base. This is just my two cents. Hang in there!!!!!
Take care,
Nykki
Rebecca,
We have an appt. with Dr. Holly Gilmer in Michigan. I will relay your post to my daughter. Thanks so much for all your input.
Carol
Rebecca said:
Ahh. I see your new thread now. I posted on your other one. Sorry for the initial confusion of trying to post a topic. :)
Welcome to the site.
Sleep...for a person diagnosed with Chiari it can be difficult to find the right sleep combination. I really miss a good nights sleep and I can certainly sympathize. I love sleep, but at the same time - I hate it. The wrong position really can cause a lot of pain.
Have you tried letting her sleep elevated slightly, 4-6 inches? Sometimes the pressure in our heads feel worse when we are lying flat.
When she sits, try to have her sit with something that has a high back with plenty of support to help keep the muscles relaxed during the day. It might help her relax at night.
I think some people do good with thick, but really soft pillows. I still haven't found a pillow that is perfect for me, but I know a lot of people with Chiari find a specific type of pillow they really like.
Maybe have a cooling layer of some sort on her pillow?
Has she been tested for sleep apnea? If she is not getting the proper oxygen, she could be wake up suddenly with a splitting headache. I believe there is a lot of research that shows a high trend for sleep apnea in children with Chiari.
What kind of routine does she have prior to bed time? I would try to get her on a routine that is as calming as possible prior to bed. Maybe sitting during a favorite cartoon with a warm compress on her neck, etc. I know that would be pretty hard to do for a 3 year old. I think for those of us that are older, we tend to have a strict bedtime routine.
Hopefully others will come around with better suggestions. I hope she finds some sleeping relief prior to March. That is such a long way away.
The neurosurgeon she is scheduled to see, is this a surgeon with pediatric Chiari experience? This is very important. Have you checked out the doctor list at the top of the page to see if there is a doctor one of our members here has seen near by you? Sometimes just finding help for someone with Chiari is very hard to do. What kind of research have you done on Chiair? It helps to know as much about Chiari as possible. That way you know when the doctor you are seeing is up to date on Chiari diagnosis and treatment. Most are not.
Thanks Allura. I appreciate your replying to my post. Will pass on info to my daughter. Carol
Allura said:
I think i replied to the wrong post, sorry im easily confused this this time of day. Also i would suggest a warm bath every night followed by lavendar and or chamomile lotion, the warm water will relax the muscles and the aromotherapy from lotion will help relax her. Also rubbing the lotion in will give her a lil massage. That with a really soft blanket and a good pillow should help some. Hope it helps. :)
Carol, so sorry to hear of such a tiny friend dealing with these symptoms. I just want second the advice about getting a sleep study. Apnea can startle a person awake, and for a tiny the screaming would make sense- not saying that is the cause, of course I don’t know, but apnea should be ruled out asap- if severe it can be dangerous. Prayers out to your granddaughter. I’m glad you have answeres I’m sure there has been a lot of wondering and worry. Please keep us up to date with her.
Jenn 
Mandy,
Thanks for your reply. As far as I know she does not have an enlarged goiter. No hearing at all in right ear. Born that way. Does not noticeably wheeze or snore at night. Belly seems fine. I will send your answer to my daughter along with the article. Really appreciate all your info. It is so reassuring to have all of you out there.
Carol
Mandy said:
Carol, Dr. Gilmer has wonderful reviews, and is highly regarded by many patients. SO glad you've found her :)
I agree with Jenn, getting checked for sleep apnea is a priority. Especially with the Pendred diagnosis, does she have a goiter? Enlarged thyroid could be putting extra pressure on a relaxed trachea at night.
How much hearing loss does she have?
Does she wheeze or snore at night?
Frequent sore throat or difficult swallowing?
When she wakes up screaming, does she grab her head, as if she is in pain?
Complain of belly pain, which could be nausea from vestibular disturbances, related to the Pendred?
If she is having large pauses in her breathing or gasping while sleeping, then a sleep study is a priority. Sleep apnea in children with Chiari has been diagnosed as the cause of death in several children who passed away in their sleep in the last 10 years. Although unlikely, it's good to rule it out as a problem for your grand daughter.
Here is a good article describing sleep disturbances in children with Chiari: http://www.medscape.com/viewarticle/458614
Please let us know how the appointment goes.
Best wishes,
Mandy
Thank you for your reply. We can use all the prayers we can get. I'm so glad all of you are out.
Carol
jcdemar said:
Carol, so sorry to hear of such a tiny friend dealing with these symptoms. I just want second the advice about getting a sleep study. Apnea can startle a person awake, and for a tiny the screaming would make sense- not saying that is the cause, of course I don't know, but apnea should be ruled out asap- if severe it can be dangerous. Prayers out to your granddaughter. I'm glad you have answeres I'm sure there has been a lot of wondering and worry. Please keep us up to date with her.
Jenn :)