Sleep Apnea and Seizures

Quetta - posted on 01/09/2013

Glad I ran across this site. My beautiful 10 month old daughter started having seizures at four weeks. She takes phenobarbital and keepra for her seizures.She also has sleep apnea. An a frontal closing premature. They recommended surgery for removal of adenoids and tonsils when she's older. Good luck to all

Patty - posted on 03/11/2011

Good luck with it all Michele! I will be prayingfor your family.

Michelle - posted on 03/10/2011

Hey Michele, Yeah! Almost big day! I hope this resolves a lot of issues. My son was inpaitent, because we live so far away from a good hospital, and I prefer to stay afterwards, thankfully the Dr's dont have a problem with that. and like Denise said, it wasnt as bad as I thought, of course he was sore, but we gave him pain meds everytime it was due for a couple days to try and keep him as comfy, (and because he cant tell me when hes hurtin) I didnt want him to be in so much pain and then the pain meds dont work, he dont cry a lot, so with him its hard to tell. And because he cant have pop cycles and all the fun stuff a lot of cold wash cloths. Ill be thinking about you all!! Good Luck, I know its very hard on us all when our little ones have surgery, but he should do great! Hes young, and he should heal up pretty quick.
Im calling tomarrow, to see the ENT and schedual and appt to get mine out! But my little guy did great, and he gets his streingth from his momma, so Im hoping I do as well! lol! Good Luck!!! :)

Denise - posted on 03/10/2011

I think the worst part of it all was hearing her scream for mommy when they woke her up in the back but it wasnt long for them to get her to me so she calmed down quickly. I pray it fixes everything but she was dx with BRE so she may have more in the future..its a waiting game. Dr said this could have triggered the big ones she has had though so we pray... she isnt on meds yet unless she has another.

Michele - posted on 03/10/2011

Thanks so much, Denise! I truly appreciate your comment "Wasn't as bad as I thought......" I so hope I say the same thing! :) I hope you daughter feels better soon!

Denise - posted on 03/10/2011

My daughter just had both out last Monday (2/28/11) and I beleive she would have been fully recovered by now but she got a virus on top of trying to heal from that so I dont know if she is complaining of her sore throat bc of the cold or bc of the surgery...she is slowly getting better though. Wasnt as bad as I thought and we were outpatient..home the same day! Good luck ok

Michele - posted on 03/10/2011

Hello Girls! Tomorrow is the big day for my son! He is scheduled to have his surgery on an out-patient basis. Those of you with children who had tonsil/adenoidectomies, was your child out-patient, or admitted? And also, what was the recovery time your child experienced? I'm becoming very anxious about the surgery. I have complete faith in his ENT, and the hospital where it is being performed, but yet I still can't seem to not panic! Ugh! Please let me know how your kid's made out. Thanks again for ALL your support and kind words. Michele

Michelle - posted on 02/27/2011

Wow, not too much longer then :) My son's was kept over night, per my request, because of the seizures and I lived an hour and a half away from that hosp, if something happended the hosp that was where I lived wouldnt know how to deal with him. (sad, a hospital full of Dr's and nurses and not 1 of them smart enough to treat a child!) Hophley they put him on the call in list, and will get called in sooner! Good luck! :) Im so happy there is a date atleast set!

Michele - posted on 02/27/2011

Thank you SOOOO much for asking! Unfortunately, he is still struggling. But simply because we are still waiting to have the surgery. Because of his epilepsy (and also because he his lungs are filled with cysts), his doctor thought it best to perform his surgery in a hospital as opposed to an out-patient surgical center. And since he only is at the hospital every other week, the first appt we could get for the surgery is March 11th. I cannot wait for that day to come. I don't know when the last time was my son or I got a full night's sleep! thanks again for asking. I will post back once the surgery is performed.

Michelle - posted on 02/26/2011

Hey Michele, I was just wondering how the little one is? Have you had surgery yet? I hope all is well! Take Care

Michele - posted on 02/14/2011

I will certainly clue you all in! I can't tell each of you how much I appreciated all the kind, encouraging, helpful, words, thoughts and prayers!

Patty - posted on 02/13/2011

Michele - thanks for sharing what happened with your son and the ENT. I hope that all goes well for you and your son. I will keep you and your family in my prayers...hopefully the surgery will help. Keep us posted on what is going on. I wish you the best.

Amreeceroo - posted on 02/12/2011

My daughter was diagnosed with epilepsy when she was 2. She had two different kinds of seizures, grand mal seizures and drop seizures. We took her to a homeopath after visiting numerous neurologists and amazingly enough, she hasn't had a seizure for a year! I would HIGHLY recommend anyone and everyone find a qualified homeopath and give them a try. It has saved my daughter from years of horrible medications with all the side effects you are probably all ready aware of.

Michele - posted on 02/12/2011

Oh Elisha, that must have been so awful for you to watch! I'm so happy to hear your son's seizures have lessened in severity. I know too well what a beautiful color blue can be until it shows up on your baby. Unfortunately, I too have experienced it with my son. I hope you neither of us will have to see that again. Thank you for the well wishes. My son's breakthroughs often happen when he has a cold, etc. as well. His surgery is scheduled for the 11th of next month. Hopefully, it will be with excellent results. Thanks again for your kind words.

Elisha - posted on 02/12/2011

Hi...My son was diagnosed with sleep apnea @ 1, he had his first seaizure @ 18mths. He also has break through seizures when he gets a bug i.e. cold, sore throat..etc He is on Keppra, Trileptal, frissium, Clonazepam and Endep10. He used to turn blue when he had seizures but after a double adnoidectomy, 2 sets of grommets and a tonsilectomy, he no-longer turns blue. He still has break through seizures but they appear to be less life threatening. We are crossing fingers this last. It appeared to get better once his tonsils were removed the blueness certainly disappeared...Good luck

SuzAnn - posted on 02/09/2011

Michele, my son has had adhd and two seizure disorders since he was 3yrs. old. We have had him on tegretol and adderall. He is 14 now. last year his doctor changed him to Keppra. He got break thru seizures within days and had emotional issues. He would wake up choking in the night. I immediatly took him back to dr. and had him back on tegretol. He could have just not been able to take Keppra but it was enough for me to stick with the old meds. Also hope all works out with th ent.

Bonnie - posted on 02/09/2011

you are in our thoughts and prayers also as you travel that road i know so well. God Bless!

Michele - posted on 02/09/2011

Maria, I so hope you find answers once the sleep study is done.

Bonnie, Thanks so much for the encouraging words! We rec'd the ok from the pulmonologist this afternoon, so I will now call the ENT tomorrow to schedule the surgery. I'm sorry to hear Dawson's seizures have returned. I hope and pray you will find him some relief! Thanks again for your input!

Bonnie - posted on 02/09/2011

My son had similar issues with seizures and sleep disorders. He was seizure free for three years following his tonsil/adnoidectomy. He just recently resumed seizure activity and is being treated again. I would strongly recommend surgery, it helps. I don't know if the sleep apnea was a trigger or a contributing factor to his seizures by making his body tired or starving it of oxygen, but I do know it has helped Dawson a great deal.

Maria - posted on 02/09/2011

Our son diagnosed at 8 with epilepsy also takes broken breaths at night, tosses and turns. His early morning seizures usually begin with a gasp, as if he is holding his breath and trying to catch a breath. Explained this to his neuro and he can't tell us if it is a symptom or an effect of the epilepsy. Scheduled a sleep study to see if we can do something besides melatonin to help him rest. I hope you find the answers you need to help your son. Blessings.

Nicole - posted on 02/09/2011

Michele,

Your welcome. I remember sometimes laying by her when she was a baby and having my hand on her and to this day she will still do it..She's take either really shallow breaths were you can't feel or so or she stops breathing So I do know your feeling and where your coming from. Hope that you got is scheduled this morning though

Nicole

Christine - posted on 02/09/2011

My son had a sleep study that diagnosed mild obstructive sleep apnea. We did not repeat it after the tonsills and adenoids came out I can just see he will stop breathing for abit and then take a big deep breath again. which tends to wake him many times in the night snd then he is tired and grumpy the next day.

Michele - posted on 02/09/2011

Please keep us posted, Karen. It's so hard being the Mom and not having control of the situation. I know how helpless you must feel. I hope you find some answers on Friday. Best of luck to you and your son!

Karen - posted on 02/09/2011

Our son appears to have nightmares and there has also been many instances where he wakes up crying. However he does not acknowledge us or any kind of external stimuli as it appears he is in a trance. I wondered about this and was going to ask on Friday. Our son also has so many abnormal fears all related to nighttime - ghosts, knocking on walls, or other strange noises / fears that we wondered it there was something else going on which we were also going to bring up on Friday. All of this has started in the last couple of months.

Michele - posted on 02/09/2011

good luck, Karen! My son used to wake up crying in the middle of the night. He would sit straight up in his bed and point at the window and just cry, but never acknowledge us. My husband and I thought he was having nightmares, but looking back, we think he may have been having some form of seizures. Now he experiences and "aura" before his seizures so we usually know they are coming in the next few minutes. I'm not sure if his seizures and his apnea are related, but it is very coincidental that when he does have a seizure, it is usually within about an hour of going to sleep. This just happens to be about the same time his apnea kicks into high gear. I will be thrilled if all the surgery does is alleviate his apnea. But I'm still hoping (in the back of my mind and deep in my heart), that it will miraculously have an impact on his seizures as well. Good luck with you son. I will let everybody know once the surgery is scheduled, and the outcome as well.

Karen - posted on 02/09/2011

Our son has had several ear, nose, throat infections for which he has had 3 sets of tubes. On the last surgery (3rd set of tubes, the adenoid was also removed). However, he continued to snow loudly so the ENT was watching the tonsils. Since then my son has suffered 4 grand mal seizures (febrible kind) and was diagnosed with epilepsy due to seizure activity in his sleep. During his sleep he is jerking frequently, waking up - though he appears in a trance and does not acknowledge you, and is physically acitive (such as if he were dreaming about running or something). He takes Keppra and still snores very loudly so we have always wondered about the possibility of sleep spnea which runs in the family. However, this post really caught my attention. Keep me posted on all of ya'lls progress and you gave me much needed food for thought as we prepare for Friday's appointment with the neurologist.

Michele - posted on 02/09/2011

Thanks, Christine! I do know there are two types of sleep apnea. The first is obstructive, which is usually cured with removal of the adenoids and tonsils. The other (less common, I believe) is related to the brain actually "forgetting" to tell the lungs to breathe. Has your son had a sleep study to formally diagnose? If he still suffers from apnea, have you considered a cpap for him at night? I wish you lots of luck and hope the med change will help with the seizures.

Christine - posted on 02/09/2011

My son is 5 yrs of AGE and was diagnosed with epilepsy at 1 and put on medicine. At 4 years of age he was diagnosed with sleep apnea and he had his tonsils and adenoids out. He doesn't get as many sinusinfections but not really thinking it has helped with the sleep apnea. he recently had a medication change due to a bunch of seizures.

Michele - posted on 02/09/2011

Yah know, I'm not a doctor. But I happen to know several kids who were not born "normal" and have since been diagnosed on the spectrum. (My son spent 3 months in the NICU when he was first born, so bonds were made with other moms and I am still in touch with a few of them today.) When my son was younger, I had concerns of autism because he did not speak. (I was lovingly referred by him as "Uh" until he was almost 3.) I did quite a bit of reasearch at that time. What I learned was that signs of autism don't usually appear until the child is about 18 months and then regression is noted. It makes no difference if the kid was born "normal" or not. The big key is the regression. Does your pediatrician agree with the neuro's statement? I really wish you lived next door. I have so many days that I beat myself up because of the challenges my son faces. I know I'm his mom for a reason, but some days, having another mom share a smile with and remind me of that could be so helpful! Please know I am pulling for you and I hope you find answers soon.

Christina - posted on 02/09/2011

I asked her neurologist just a couple weeks ago about her being autistic, because I have noticed a lot of things she does sound like she is. He said that children with autism are born completely fine and go "down hill" from there. He said that obviously isn't her because she was not born normal. However doesnt mean she cant display the same signs. She has been diagnosed with OCD and epilepsy. But that is about it.
Thank you so much Michele!! You are a true friend! Hugs back

Michele - posted on 02/09/2011

Thanks, Nicole. Let's hope the surgery works for both our kids! I haven't scheduled his yet, but that is what I will be working on today. Can't happen soon enough. Watching a kid with sleep apnea is terrifying in my eye!

And Christina, my heart just breaks for you. A have a friend who's son is a friend of my son's. He too would not speak or play with others. He often would just hang in a corner by himself. He just turned 7 and is now finally coming out of his shell. (Not there yet, but progressing.) He was diagnosed with PDD. Has your daughter been identified as being on the autism spectrum? I know what it's like when you want answers and just can't seem to find them. I know how painful it is to watch through a mother's eyes. But know you are not alone. I wish I could reach out and hug you and tell you I'm here for you. I'm not a super religious person, but I do believe in the power of prayer and I will keep you and your daughter in mine. Hugs! Michele

Christina - posted on 02/08/2011

Michele....My daughter is in the preschool right now (after the early intervention program) she just had her evaluation last week and seems not to be doing any better with people. She still doesn't play with other children and walks around and doesn't seem to know her place...like she is lost. I am hopeful of a turn around!!! I hate doing these tests on her because she is terrified!!!! I feel like I am the only one that is doing this to her. Thank you again for being ther for me! I feel SOOO alone in all of this!

Nicole - posted on 02/08/2011

My daughter has E and she was sent for a sleep study because she don't sleep well still at night and was all over and falling out of her bed at times. So her Nero sent her for a sleep study. She had it at the begining of Dec. I heard back right before chirstmas about what the sleep study had said. I was shocked at getting it back so fast. I was told she had mild sleep apena. They wanted us to see an ENT witch we did at the begining of this month. She is going to have her adinedo's(sp) and tonsosils(sp) taken out. She's going in the 24th of this month. I don't know if this will help or not and you have proble already seen the ENT, but I do hope this has help a little.

Nicole
dylan (07/02/99 developmentally delayed, sever adhd,odd, gerd, very picky eater, mr, ld, speech and more)
phoebe (06/04/04 speech, complex partial epilepsy into generalized seizures)

Michele - posted on 02/08/2011

Wow, that's a tough one. My son was the same way until he was about her age. Just after his 3rd b-day, he started a developmental preschool (the transition period after Early Intervention and before Kindergarten). He had an amazing turn around once he started school. Beforehand, strangers couldn't even look at him without him bursting into tears. Now he's a social butterfly! Best of luck with your daughter. I know how hard it can be when you feel you just don't have control. But know you were chosen to be her mother for a reason. Have faith in yourself and she will too!

Christina - posted on 02/08/2011

She has serious problems around people she doesn't know! It is like torturing her to have that test done. I am in the process of setting one up for her for the next month or so. They are going to sedate her so that might make it a little easier for her. I know you are not supposed to be sedated for an EEG but in her case that is the ONLY way! She would freek out with the 1st touch of anybody! I will let you know what happens. Thank you again!

Michele - posted on 02/08/2011

Has your daughter had a sleep eeg? This might give you some answers. They also sometimes do video eegs. Those are done in the hospital over several days to monitor 24 hours a day/night for seizure activity.
My son clearly has apnea. I video taped his sleeping and showed his ENT. It's so obvious with him. He breathes heavy and then completely stops for easily 10 to 12 seconds. Then he gasps, take a few heavy, deep breaths, then stops again. He also is restless and lets out a "moan" every now and then.

Christina - posted on 02/08/2011

I am going through the same thing at the moment. My daughter is 3 and she has seizures and they want to test her for sleep apnea. She also is on Keppra. I am unsure what I am going to do at this time because she doesn't really *snore* she moves her legs in violent jerks, moans and goes back to sleep. I am very curious if what i am noticing is actually small short seizures? I will make sure I get back to you on this topic! Thank you SO much for posting this! I don't feel so alone now :)

Michele - posted on 02/08/2011

We saw the ENT this afternoon. Confirmed the has sleep apnea and huge tonsils! We are now in the process of working out the best schedule for tonsil and adenoid removal. My son also has had all his seizures within about an hour of sleep (also usually about the time his apnea really kicks in.) Woudl be so nice if this surgery clears his snoring AND his seizures! Will keep you all updated. Thanks again to EVERY ONE for your thoughts, prayers and well wishes!

Denise - posted on 02/08/2011

My daughter was just dx with mild sleep apnea and we are sure hoping they do something to help her sleep better. She also has had szs in her sleep so could these be related?? The doctor thought it was a possibility but we see the ped neuro next week to discuss both conditions. I have heard from a lady I know that after her daughter had her tonsils removed, her seizures stopped all toghether. Who knows...good luck

Michelle - posted on 02/07/2011

Not a problem, I like to help when I can, or atleast share what Iv been thro and sometimes that can help to. Good Luck! Hope everything goes well tomarrow!

Michele - posted on 02/07/2011

Thanks so much for your input, Michelle!

Michelle - posted on 02/07/2011

My son has seizures and sleep apnea. He had his tonsiles and adenoids out in Aug of 10', he dont snore as much now, and if he does its a lot quiter than he was, I believe it also helped his sleep apna, but havnt had a sleep study yet for offical results. But he dont wake up in the middle of the night gasping for air, and he dont stop breathing (as much) while hes sleeping. How ever his seizures have not decreased, but theres is a lot of other things that it has made better, and his throat dont seem to bother him as much as before. My son is also on Keppra, and takes pheonabarbatol as well.

Michele - posted on 02/07/2011

Thanks, Patty. I'll be sure to post back again after we see the ENT.

Patty - posted on 02/07/2011

Hi...I cant really answer your question but I just wanted you to know that you are not alone. My son was recently diagnosed with epilepsy and has been having break through seizures as well. The pediatrician said we will need to be testing him soon for sleep apnea because of the way he breathes at night. I hope you get the answers you are looking for. Good luck with everything!