Wilma Jenks

Nancy-How is your girl doing today?

I have not tried Olive Leaf Extract. Is that good for OCD?

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!

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.

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?

Has anyone ever tried this medicine for the OCD?

Quite the contrary. The honest replies from this group makes me feel more focused and driven. I want your honesty and appreciate it. Thanks. She is still sick sick sick, but her weird psychotic thoughts are better, and she is able to talk to me now without pretending she is an animal or something. Sounds like clostridia can cause lots of pschosis. I have a long road in front of me, but at least there may be some hope now. The psch. meds ALL made her worse. Nothing helped.

I posted a couple of weeks ago, in a panic about my child. She is so sick and her symptoms are super bizarre. After the well intentioned replies I got, I thought I should leave this group, but after reading post from many months back and learning about the symptoms that some of your children have too. I believe that I am not alone. Some of the very odd symptoms that some of these children have are very close to my girls. I have tried a dozen meds, prescribed by the pdoc., and my child is not getting better. Actually worse. Her Cam kinase is 166.... she shows high levels of clostridia and who knows what other infections. I am going to stick with this group, if you don't mind, since I think that it is the only group that may be able to help. Although she is still very sick and her OCD is at its worse, I do see one improvement, thanks to Scott Smith, and that is that she is able to hold a conversation now and tell me what is wrong. Before he treated her for clostridia, she was not able to communitcate. This is the closest that I have come to seeing a real child inside. I am hoping that I can see some more healing. Thanks for being a great group of very concerned parents.

We are not sure that it is pure PANDAS yet. I am testing her for Lymes as soon I can.

I am researching the IVIG and considering it. I am told by one doctor that it is quite safe and told by another that the plasma exchange is much safer. With the IVIG, they are giving you other peoples blood, but with the plasma exchange, there cleaning your "own" blood. It would seem to me, that using your own blood is safer.

Does culturelle a liquid and is it hard to get into your child. My girl is very diffucult and hates the taste of most things. Does it come in pill form?

does she also get the racing thoughts were she has to tell you every thought that pops into her head?

... and he had no OCD, when he was up that late?

Anyones child pull all nighters becasue of OCD???

Do probiotics are essential, right? If you can tolerate them.

I know some people have said their symptoms have worsened on some abx. Did the worsening ultimately go away???

I want to try motrin for inflammation. How much should I give. She is 11.

how much motrin do you give your child? mine is 11.

great to hear. thanks

Have people seen the OCD get really bad with abx. and then get better. I see the confusion and fogginess a bit better during the day, but the OCD got really really really bad at night.

I ran my girl to the E.R. 3 x's in her life for severe pain over her right eye. Afterwards she vomits. It always seems to be after milk too, but lately it is happening when I try new meds. It happened when she started probiotics, and when I started her on Vanco.

How long does die-off from Diflucan usually last? Thanks.

She has been seeing a psychiatrist(the 3rd one) and has been on a dozen meds. that make her worse. The psychiatrist gave her blessing to look into PANDAS, because they are open minded and they are having a hard time getting this child relief! I appreciate you response, thanks. I sound like an idiot on here, I know... but not many people around to vent too. It's just very hard, as you all know!!!