T_Anna

DS is on Valtrex and it is helping combat his Coxsackie. But I see many here are treating with Acyclovir. Any input which is more effective? TIA, T.Anna

Having a stressful day and could use some inspiring stories. Any teens that survived Severe OCD after probably suffering from PANDAS for years and years? DS is 15 and stuck at home since January 24, 2013. He is doing microscopicly better and we are now focusing with some success (at least as far as titers go) on Coxsackie, Strep and MycoP. We are awaiting results of Dr. Cunnigham's test, an appointment with NYU's neurological team, etc. But in the meantime.... Anyone have a link to some inspiring stories? Only finding the typical stories of first exacerbation+antibiotics=all OK. Sorry if I sound bitter. Thanks in advance, T.Anna DS15

We have had a similar experience. The SSRI may have helped a teeny tiny bit with the OCD, but not enough to pull DS out of the severe excerbation and lately we have seen an improvement in his moods and hyperness. That said, it would be GREAT, if there was something that helped with the OCD and anxiety in general. Right now we are focusing on treating the PANDAS and hoping that will resolve the majority of issues we have. T.Anna DS15

How far are you from Tampa? It might be worth trying to see Dr. Tanya Murphy at University of Southern Florida. I agree with Rowingmom. This is hard enough to treat, find someone who already understands. T.Anna

I found that this article really helped me deal with some naysayers...especially in the medical community. http://thewalrus.ca/a-feverish-debate/ Edited to add a signature: T.Anna DS15

Welcome to the PANDAS board. You may want to jump over to the PANS/PANDAS board where there is a lot of relevant information. http://www.latitudes.org/forums/index.php?showforum=17 I have sent you a PM (personal message) as well. T.Anna DS15

We sent DS's blood a few weeks ago and I was wondering if anyone else has sent in samples since the lab opened on April 22, 2013?? Anyone receive results back yet? Thanks in advance, T.Anna DS15

LLM, I really appreciate your information. DS was on D3, but the numbers were creeping up but still super low. DS doesn't go outside and is mostly sleeping during daylight, So even his brief excursions on the balcony don't help. Dr.T gave me the suggestion about the 1/week for 8 weeks and we discussed the risk of toxicity. It seemed worth a shot, since we can monitor with more frequent blood tests. DS has had an issue with night/day reversal for a long time. It has just gotten worse...he used to fall asleep at 4 and now he can't until 6 or even 8am. And now, it finally bothers him that he cannot fall asleep. It might also be that now he has more energy and is a bit stir-crazy (although too OCD to go outside or shower/change). As for constipation, it is completely how he controls his body. It's the only place he still needs to fight the OCD (everywhere else he just avoids it), so he puts it off until certain days...and then spends a minimum of 3 hours there with 2 boxes of Kleenex. We drew blood on Thursday so I hope to have the vitamin d levels as well as thyroid and everything else. This week has been a far cry from last week at least. We didn't have head banging and since Tuesday night, no crying or rages. Maybe that corner is getting closer (almost off the Luvox too, just down to 50mg and then 25 mg on Monday for a few days). Thanks again, I always enjoy re-thinking our treatment. And often brings these up as my "suggestions" to the doctor. Thanks as always, T.Anna

He seems much better tonight and eating proper food. He hasn't been to the bathroom since Tuesday so he may be building up to go tonight (he tends to eat more before he goes). I stopped giving him the magnesium around the time of NAC, don't remember why. I will try it again. OT: but just in case I was getting bored, my daughter came home with lice this week...ughh! So we've been busy, DS is happy that they don't like dirty hair. LLM, his Vitamin D is extremely low, we are supplementing with a prescription vitamin D at 50,000, once a week. He's happy because the pill looks like the ones in the movie The Matrix. Thanks as always, T.Anna

DS15 still cannot fall asleep at night until 7-9am and then he can sleep all day. He told me that his heart starts racing whenever he tries falling asleep. Any advice?? He no longer self harms and is generally better than earlier this week. I tried the Lempn Balm, but he didn't take it ("it looks weird"). Thanks in advance, T.Anna DS15 Edited to add: That it wouldn't be horrible if he didn't wake me at 4:30am each morning to sit with him and calm him to go to sleep (this used to work). Now I sit there and fall asleep and have him wake me again because he's anxious or just "hang with him" until I need to wake everyone for school.

Sending Prayers!!!!!! T.Anna

4Nikki, thanks for the prayers!! Nurse from Apex (contacted by LabCorp) came yesterday to draw blood and was gone with 15 minutes - I love these nurses. T.Anna DS15

My Brother, Father and Grandfather, all are IEs. I remember when we were first concerned about DS's speech I picked up two books by Thomas Sowell "Late Talking Children" and "The Einstein Syndrome" where he studies the connection between science heavy families and developmental delays. Now I wonder how much of that is also PANDAS. T.Anna

Thanks, I hope it is a herx. Doctor T wants to do another blood draw, thinks it's too severe a reaction to be turning back pages, Luvox reduction, etc. I haven't tried Dr.Fallon, no one from Columbia has ever mentioned his name. I will ask about him. Has anyone ever dealt with ID doctors at Stony Brook? Irony is that I thought we were improving until all craziness broke out last night. T.Anna

I come from a long line if engineers (brother, father, grandfather) and am terrible at math. DS15 was a great math student until this year, when he suddenly started struggling. I guess it can be a chicken and egg scenario. Arr PANDAS kids good at math or are kids who are good at math more likely to get PANDAS? T.Anna

4Nikki, I feel your agony. He finally came out half an hour ago (19 hours, ties his own record). Btw, we no longer have locks on any bathrooms because DH broke the door in December or January when DS wouldnt answer. When he came out he was Dr.Jackyl (the calm one), but with a huge blister on his lower lip. I decided to add back the anti viral until I can ask the dr tomorrow. All if a sudden he is accepting suggestions, even ate something when I mentioned his stomach needed something to feed off of, and was probably acidic from no food for 48 hour or so. This is getting so tiring and you feel so isolated. It's not like an emergency where getting him to a hospital will be helpful. T.Anna DS15

Since Wednesday (500 mg am & pm). He had been on it for days in Decrmber too (not sure how much though). T.Anna

Having a TERRIBLE day/night!! DS15 has regressed to behavior we havent seen since January! He has been stuck in the bathroom since 6:30am this morning. We tried to talk him out and he just started screaming and yelling "leave me alone!" Now he is crying so hard. What on earth is wrong? This morning I was excited that he went to the bathroom on a new day (not just Wednesday nights and Saturday evenings). I thought maybe something new, means less OCD, but it was wishful thinking. What do we do now? This is awful, my 12 year old is going to sleep at my parents, I'm lying in bed with my 10 year old daughter and the noise machine running. Can this be turning back the pages? Is it the tittering down of Luvox? I'm not sure how this will end. I would give him Lexapro, but he said he won't take pills while he is in the bathroom. He hasn't taken any pills all day. This is really a nightmare and I thought we were doing better!!! Saturday was really good. T.Anna DS15

Ds15 is on Biaxin for Mycoplasma? He is on 1000mg a day. How much are others taking? T.Anna DS15

Has anyone received results yet? Anyone know if the labs survived all the tornadoes?? T.Anna DS15

We are fighting Mycoplasma. DS is on Biaxin. T.Anna DS15

He is taking 1600mcg in the am and 1600mcg in the pm. T.Anna

She has a good point, will an incident like this make the medical community accept the possibility that psychiatric behavior is triggered by illness? Unfortunately, I feel that the story has already died down...for good or bad : / T.Anna

He also had Coxsackie at the time and probably Strep titers were still high. In January after being on Biaxin his Myco had gone down. I think we weren't careful enough to make sure we eradicated all the infections in our rush to "fix" DS. We are still trudging through and we have kept all our gains, despite their insignificance on the bigger picture : / Still waiting for Cunnigham tests results too. T. Anna

Which brand Lemon Balm do you use and how much? I found a few on Amazon with too good to be true reviews. New Chapter Lemon Balm Force -- 30 Softgels Nature's Way Melissa/Lemon Balm Other Brands? When do you give it? Thinking of trying it after DS15 cycles off Luvox. DS15, will only take things in pills. T.Anna