Jump to content
ACN Latitudes Forums
  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

Sign in to follow this  
Wilma Jenks

What have you tried for severe OCD?

Recommended Posts

I am seeing her distorted, foggy symptoms go away, but her OCD got severe at night time. Nothing puts her to sleep. She is up til 3am some nights. Tried melationin, seroquel(makes her really mean and confused) clonodine (doesn't work). Celexa makes her super wild, Luvox makes her uninhibited, etc... what have you tried for severe OCD that worked?

Share this post


Link to post
Share on other sites

Hi, Wilma:

 

This wasn't for OCD, but for our ds's extreme insomnia. He was pulling all-nighters all the time, which made all other symptoms worse due to constant exhaustion. Anyway, our DAN doc at that time prescribed desyrel: it's an antidepressant used "off-label" for insomnia. It did help stabilize our son's sleep cycle. Over time, though, we had to keep upping the dose and side effects became more pronounced, so we discontinued.

 

For our ds, all other psych meds were disastrous, made things worse. Traditional sleep meds (ambien, sonata) were equally bad, causing hallucinations and not helping him get to or stay asleep. For whatever reason, desyrel did help for a while.

 

Big caution, though: in children, meds like desyrel can be dis-inhibitory and can lead to suicidal thoughts. After a later "exorcist syndrome" exacerbation when our son's OCD / insomnia were worse than ever, we tried the desyrel again - sure enough, triggered suicidal thoughts. We stopped after one night.

 

Praying you find sleep and relief soon. Hang in there!

Share this post


Link to post
Share on other sites

Two things we use are massage and talking. For both my kids, I'll rub or massage their backs while we talk. We do a lot of our ERP/CBT therapy at bedtime. We talk about anxiety and ways to control your thoughts to reduce the anxiety. We practice breathing, I remind them to tense each part of their bodies, then they visualize shooting the fears out of their bodies when the release the tense muscle. We do this with a night light or hallway light on. The low light helps them relax and the human touch really seems to help. It also gives us a better bond for the upcoming day when behaviors test our relationship.

Share this post


Link to post
Share on other sites

Thanks. Perhaps down the road, massage may work, but she is way beyond any massage at this point. It is too severe. Scott wants to try her on something called Rilutek for OCD, but I was wondering what others have tried. Thanks so much.

Share this post


Link to post
Share on other sites

HI,

For severe OCD, start the Inositrol, go low in dosage and slowly

work your way upward. My son asks for it when he starts the hand

washing cycle, says it helps him.

Try the baking soda or epsom salt baths at night, throw in about

2 cups per tub full should do it.

Have you tried the olive leaf extract, etc. route?

 

Hopefully, you are seeing results of resent infection, or exposure

to strep and will clear on its own as immune system clears and heals

itself in time.

 

Keep us updated and good luck.

I think all the families are experiencing increase in symptoms as the winter

drags on, but will get better soon...spring is on the way, sunshine and

healings.

 

Carole

Share this post


Link to post
Share on other sites

Inositol seemed to make my child really hyper in the past, but perhaps after her clostridia was attended to, this won't happen. I will give it another try. Thanks so much. I can't get her into the bath. One of her phobias. Taking magnesium in the past has made her run in circles, so I can't go that route. Ugh!

Share this post


Link to post
Share on other sites

Wilma, I just wanted to pass on information that I received from my son's neurology consult this morning. She ordered some labs just to rule out other non-PANDAS stuff that could contribute. She wants my son's ceruloplasmin level tested. This is an indicator for Wilson's Disease. This involves the accumulation of copper in the brain, and can cause psychiatric issues. Something maybe to think about and ask your doc to test? Often in this disorder, the liver is involved. I don't think I remember anything in your posts regarding this in your daughter.

 

Just something else to rule out.

 

 

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×
×
  • Create New...