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Ds6 FLIPPED out last night due to a new med (hallucinations/rage) vent


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I had to come and share/vent what happened last night because my eyes are still swollen, my head is pounding and my heart is HEAVY with guilt/frustration/sadness.

 

Boo (ds6) went to see a sleep Dr. last month. He has a long list of dx but the biggest one is Fetal Alcohol Spectrum Disorder. He is currently taking Seroquel and Clonidine for his rage (possible bipolar or mood disorder). We were supposed to start Lamictal but I haven't yet due to some hesitation on my part combined with another new med his sleep Dr. (dev. ped) prescribed last week (he's seen him twice now. First was consultation a month ago, then he had a sleep study, then we went back last week for the results and that's when he prescribed the pill that caused all hell to break loose last night).

Boo has sleep apnea and periodic limb movement disorder. Boo also has MASSIVE anxiety and cannot sleep unless he's next to me :( Dr. thinks we need to start a better night time routine but due to his high anxiety, he thought prescribing him something to help him get to sleep easy would be a good "transition" for him while we are establishing a new bedtime routine. It was supposed to be temporary (2 weeks). The med is Ambien. He explained that it's not prescribed to children but there are some studies at Stanford right now with good results for children with sleep disorders.

 

I was hesitant to try it but 1. I want Boo to start feeling safe in his own bed and 2. My poor dh has been sleeping on the couch for years :(

 

So I gave him his first (and last!) dose last night and within 20 minutes, he started staring at his hands and pointing at me and DH. It was as if he couldn't talk or form thoughts. Then after about 10 minutes of that, he started getting agitated. He tried to sit up but he could barely do it. Then he started getting out of bed but we had to hold him because he would fall or run into a wall :( Then the rage started. He didn't know why he felt so weird. He wanted to go outside but of course we wouldn't let him. DH guarded the door and Boo just started going BALLISTIC. He punched, kicked, bit (almost broke dh's thumb). He literally would not stop. We kept trying to restrain him but we've never been able to restrain him well because it FREAKS him out (Reptilian brain kicks in). Because of the FASD, he has brain damage and one area that is severely affected is his ability to self regulate. He was in a state of rage and it's something we work very hard to avoid because it's impossible to get him down from it :(

 

This went on until 3am!!! I wound up in a ball on the bathroom floor at one point, just sobbing. All of the kids woke up (or were still up) and were trying to comfort all of us, but by this time, I was literally losing my mind. I HATED the fact that Boo was so out of control. I HATED the fact that I couldn't HELP him. I feel like I caused it by giving him that stupid med!!!

 

I wanted to call 911 at one point because I was fearful of how out of control he was and how hurt we were getting (dh and me). He would scream and hit and kick and bite....then the next minute, he would SOB.....then he would be ok for a minute and agree to lay down .....then POW...he was up screaming and hitting me. I finally was able to get him to calm down around 3am. We laid down in my bed and he did his "rocking" that helps him to fall asleep.

 

I called the Dr. this morning and he of course said to discontinue. The nurse said she never heard of such a reaction. I explained about Boo and his complicated dx. The sleep Dr. says he's like a bowl of tangled spaghetti that needs to be unraveled.

 

Anyway, if you've gotten this far, thanks for reading. I am feeling so beaten down mentally. I am fearful of his future. My biggest fear is him being hospitalized because I think it would do more harm at this point due to his anxiety. I just wish I had the answers. I was praying non stop last night that God would just HEAL his brain :(

 

Thanks again.....just needed to spew a bit :(

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I'm supposed to be all pro-pharma for the site where I work, but I think hypnotics (eg: Ambien, et al) are the Devil's spawn. I don't know who invented them, but I think those drugs are incredibly dangerous. And I don't say that about anything.

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Sorry he had such a terrible reaction. We had a bad reaction to one med that caused my daughter to hallucinate and become suicidal/homicidal at age 5. NOT FUN.

 

Have you tried anything like Melatonin to help with the sleep? Our neurologist, psychiatrist and endo. all said it was safe for MY kids---check though with your doctors about Boo.

 

If his anxiety is so high, honestly I think hitting the bipolar hard with the proper meds might really cut down on the anxiety for him. That worked great here.

 

Can Clonidine increase anxiety? I know we tried it here and it didn't work but I can't remember exactly why.

 

Hope you get some answers soon. I still occ. have 13dd and/or 15dd on our bedroom floor.

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Thank you all again. I appreciate the support. Boo is sleeping next to me tonight and while it's not ideal, it's a lot better than last night ;)

 

As far as Melatonin, I'm not sure. I take it and it works great for me :) I'll ask his Dr. about it. The thing is, he takes his clonidine at night which usually gets him to sleep within an hour or so. Sometimes he powers through it but most of the time it's effective. (It just wouldn't be effective if I were trying to get him to do something he wasn't used to).

 

Ottakee, the Clonidine didn't increase his anxiety (thankfully). The SSRI's and the stimulants did though so we steer clear from them. I'm hoping this new Dr. (while I'm not thrilled with his Ambien experiment) will be able to get us on a better path. I am nervous about starting the lamictal now too but I guess we won't know until we start.

Thanks again for the help :)

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I am nervous about starting the lamictal now too but I guess we won't know until we start.

Thanks again for the help :)

 

Lamictal is pretty much universally stimulating at doses beneath 25mg, but that is usually counteracted with the use of a very low dose benzo. And the stimulating effect disappears as you slowly move above 25mg to a therapeutic dose.

 

Thought you should know before you try it and think that it simply won't work. It is/has been a miracle drug for many people (:: raises hand ::)

 

 

a

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:grouphug:

 

My son also has severe anxiety and sleep issues as a side effect of his neurological condition. He takes melatonin, but I'm not sure if it actually does anything for him. The melatonin alone does not help him sleep, but our thinking is that maybe it'll help his body learn to regulate sleep cycles in the long term.

 

Two years ago during a hospital stay, our neurologist gave us Zanaflex, which is a muscle relaxant normally used for patients with MS. He's been on it for a couple of years now (in conjunction with his other meds), and we've actually halved his original dose with continuing good results.

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I'm supposed to be all pro-pharma for the site where I work, but I think hypnotics (eg: Ambien, et al) are the Devil's spawn. I don't know who invented them, but I think those drugs are incredibly dangerous. And I don't say that about anything.

:iagree::iagree::iagree::iagree:I can't agree enough.

 

OMG, you poor, poor thing, I cannot even imagine the horror that last night was.

 

I have an adult friend who was on Ambien for a while and it almost destroyed his family. He would lay carpet 'in his sleep', fix cars, cook, and the last straw was when he stopped a car on the road and tried to get in it.

 

He was brought up to the psych ward and once his wife told them everything, ...well, it was sad that this happens to so many people.

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