Its not behavioral.... I don't think...

Anna - posted on 04/19/2009 ( 10 moms have responded )

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I have a 10 1/2 month old who screams and screams every few hours throughout the night. His doctor say it may be night terrors, but then I was told he was too young for that. Then I thought teething and now that I witnessed his facial expression first hand I am not sure....
He wakes suddenly screaming like he is scared or in pain and when I pick him up it still takes him a few minutes to calm down and realize he is OK... However this has been going on for months and the other night I was just so tired we put him in bed with us and it continued but I was able to see his face. I have never seen a baby look like they just saw a ghost He just looked so scared and then when it happened again he looked like he was in so much pain... I have no idea what to do because now I am being told it may be behavioral which I am not buying because he is a very happy, content, relaxed, go with the flow baby.... AND.... we used to be able to put him in his crib for nap time and bedtime awake with no problems and he would just fall asleep when he was ready..... So I am just really confused.... Can anyone help me or offer suggestion... I am so tired and open for any suggestions.... Thank you all

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Carolyn - posted on 04/26/2009

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Quoting Anna:

Brooke..... Thank you for your words of wisdom..... I think I do want another opinion and sleep!!! :O)

Kate.... Do you have experience with seizures? When I wrote this post I left out all his little medical issues... My son does and has had acid reflux since birth and we are in the process of going for a second opinion to see a neurologist 1. because he has a cyst in the back of his head (internally) and 2. because he has staring episodes (all his EEG's came back normal)... So needless to say my little man has alot going on... I guess it is IRONIC that you made those two suggestions not knowing me, but it once again puts things in perspective that SOMETHING is going on with my little boy.... Thank you and I will keep you posted!!

I just wanted to thank both of you girls for responding to me... I know I am tired but at least I know I am not nuts... Well at least for the most part.... ;o)


Hi Anna,



 



I do have a child with seizures. She's almost three now, and she was diagnosed with a relatively uncommon seizure disorder called Infantile Spasms when she was 7 months old. She was also diagnosed with Autism Spectrum Disorder at 25 months old. I was sort of thinking the same things as the first two.



My daughter, unmedicated, also has screaming episodes in the middle of the night. She takes hours to fall asleep, and will wake every 1.5-2 hours, scream and writhe as if in pain for about an hour or so, then fall back asleep, exhausted. I say unmedicated because in addition to her regular anti-seizure medication (currently, valproic acid and nitrazipam), she also get 1/2 of a 0.1 mg tab of clonidin to help her sleep. We're currently waiting for a sleep study (scheduled for July 23) to see what's going on in her brain and to finally get to the bottom of these episodes. With the medication, she still wakes up occasionally, but generally won't scream, will just have trouble falling back asleep.



If your child has a cyst, you obviously already have a neurologist or neurosurgeon. Make sure they know about this episode. Also, try to capture the staring episodes on video (a digital camera with video capabilities is a worthwhile investment for this if you don't already own one) to show the neurologist if you haven't already done so. Some kids only have an intermittently abnormal EEG and may require a 24-hour study to capture the epileptic activity. You should also try to note the postictal activity (the period immediately following the spell). It will vary from child to child, but when my daughter was having complex partials and absence-type seizures, we would notice that she would just carry on with her activities unaware that she had "paused". That might be a clue as to whether or not your child is actually having a seizure or not. They can also be confused or disorientated. Those spells generally didn't bother her unless you moved her during her "phased out" period (i.e. moved her from an unsafe position), I guess because then she was disorientated because from her perspective she suddenly moved positions without her knowledge.



Take heart, it's an extremely difficult position to be in. All I can say is sleep as often as you can, nap when you can, and trade off with a partner when you can. You might even want to get a pair of earplugs for those nights when someone else is up with him so you can sleep a bit. I wish I could tell you it will have a happy ending, but seeing how I haven't gotten to the end myself, I can't quite yet. :)



Good luck!

Anita - posted on 04/26/2009

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We had some problems with our son when he was first born...he made really weird noises when he was sleeping. They were so loud that I couldn't even sleep in the same room with him at times. We took a video to show our pediatrician because it was hard to describe. She looked at the video with another colleague in the office and that really helped us get the ball rolling to a better diagnosis. He was diagnosed with acid reflux and after a week of Zantac, the noises stopped. If you can, I would definitely suggest a video of his face and crying to help your doctor understand the issue. A sleep log might also. I know you are so tired but sometimes docs need hard evidence to help them help you. I hope it gets figured out soon...good luck.

Anna - posted on 04/26/2009

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Hi Jennifer,
Well I took your advice last night and decided to try and give my son a bottle when he woke up at 3am... (which is actually pretty late for him.... He usually starts around 10pm.... But we had a busy few days) Anyway.... Not the point... I gave him a bottle and wanted to see what happened after it... Well he only drank a little and then watched the shadows of the fan until he fell back asleep which took about 15 minutes... So I am going with my original feeling that this is NOT behavioral.... And no his crib was never elevated.... He has always been a belly sleeper since he was born.. I know we are not suppose to let them sleep on their bellies but he must have gotten comfy in the NICU sleeping on his belly and I spent months awake watching him sleep on his belly to make sure he was ok... He would not sleep or cry if he was on his back.... Thank you for all you input and I will keep you and the rest of the girls updated on whats going on with my little man....
Thank you all for caring!!!!!!

Jennifer - posted on 04/23/2009

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My oldest son had night terrors and my MD recommended to figure out the pattern to his night terrors. Once you find the pattern, go in and wake him up before the night terror would happen. This will disrupt the pattern after a couple of nights. He also tt me about the fact that my kids could be hungry. If they wake, eat and go back to sleep then they are hungry. If they wake, eat and want to play, that is behavioral. I hate to ask this, but is the head of his bed elevated in any way? That might help with the reflux...

you are the mommy. Don't let the md's nonchalance about your child make you doubt yourself. I'd agree with the second opinion and believe you are going in the right directions with the neurologist.

Anna - posted on 04/19/2009

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Once again Thank you ladies.... Drew went to sleep around 8pm (thats late for him we had company) and I just came back down stairs from one of his night things.... And so it starts... Because it usually happens within an hour and a half to 2 hours after he goes to bed.... Maybe tonight will be different.... Keep your fingers crossed.... However my mom was here today and made me go take a nap so I can get through the night....
Hugs to my new mom friends... I will definitely keep you two ladies posted on what goes on... Thank you again for your support!!!! You have no idea how much I appreciate you both... :)

Kate CP - posted on 04/19/2009

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I don't personally have experience with seizures but it was actually one of the first things I thought of when I read your post. A lot of times when a kid has seizures they are totally disoriented and scared and sometimes are in pain. There is some speculation that the baby in this video is actually having a seizure:


I hope everything goes okay and I'm wishing you the best of luck on this! *hugs* It's tough seeing your kiddo unhappy. :(

Brooke - posted on 04/19/2009

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Oh, Anna. Definately get a second opinion. Your doctor should count all this into determining a diagnosis for your precious son. I wouldn't stop nagging him/her until you got some solid answers and tests done....God Bless you and your family. Hoping tonight is a better night for your little guy ( and you and hubby also )

Anna - posted on 04/19/2009

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Brooke..... Thank you for your words of wisdom..... I think I do want another opinion and sleep!!! :O)

Kate.... Do you have experience with seizures? When I wrote this post I left out all his little medical issues... My son does and has had acid reflux since birth and we are in the process of going for a second opinion to see a neurologist 1. because he has a cyst in the back of his head (internally) and 2. because he has staring episodes (all his EEG's came back normal)... So needless to say my little man has alot going on... I guess it is IRONIC that you made those two suggestions not knowing me, but it once again puts things in perspective that SOMETHING is going on with my little boy.... Thank you and I will keep you posted!!

I just wanted to thank both of you girls for responding to me... I know I am tired but at least I know I am not nuts... Well at least for the most part.... ;o)

Kate CP - posted on 04/19/2009

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He may actually BE in pain. I would ask the doctor about a sleep study. He could have reflux or (and I don't mean to scare you but it is a possibility) he could be having seizures. If the doctor won't do a sleep study or listen to you I would get a second opinion. Good luck and let us know!

Brooke - posted on 04/19/2009

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Our daughter did this several times but she was older....like around 2. She really was having night terrors. I agree that it probably isn't behavioral because of his age. I would possibly get a second opinion. Could it be something different he's eating or being exposed to? I don't know but I feel for you and your precious son. Just be as comforting as possible to him during these "episodes"....I hope it all works out for you.

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