PANDASmcnuggetsw/fry/coke

Our dd has been 100% CF and GF for over 6 months. She wants to remain off those things,but has not helped severe OCD. Hope things go much better for you!

Thanks everybody. We will probably do more bloodwork to make sure there is no lurking myco-p. Just feel we are at a big fork in the road...do we go to Fla.for the Storch/Murphy program or PEX???? THANKS

We are past the two year mark, since the sudden onset of PANS. Daughter has had two IVIGs and still not doing well. We are thinking of PEX and wondering where it is done and how does it compare to IVIG? We are in the midwest and don't know of any facility that does it here. THANKS!

Funny, Thanks ladies!

We did at the one year mark, so that was about a year ago. Her brother showed a prior myco infection and so did hubby, but the numbers had come down. Maybe since this is going on over two years now, we should have a blood testing party eh? I'll bring the dog, our 4 goats, 3 sheep, 70 hens and 200 broiler chickens. Wooowee.

Is there something in the way of a natural supplement that our daughter's can take the day before thier period? Just one day before her period, the PANS symptoms skyrocket with additional weepiness and despair. The OCD gets even more intense and ability to rationally discuss things goes out the window..... Mind you she is on several natural supps now just for the OCD, N-AC, inositol, St.Johns Wort, L-Theanine and L-glutamine (all with doc's approval). So I don't want to overdo it, but this PMS thing seems like a competely different beast. THANKS!!

Thanks Dedee. We had the lyme testing through Igenex and had their head Dr. and two others say no lyme. I have an order for stool testing, very expensive, but to check for yeast overgrowth. Our naturopath said that can cause OCD like symptoms....

Thanks everyone, and LLM is ERP a type of CBT then? a subset of it? We just had a frustraing round with a therapist. I went in spelling out we were there for her to learn CBT and this was expressed several times and acknowledged. Turns out this was not being taught at all! Thankfully we didn't spend too much time there, but we are starting over. Hers is the intrusive thought type and ERP scares even me b/c of the nature of this OCD.:-( THANKS!

hmmm.. are you saying minnocin when you say mino? She has been on so many different ABX but I don't think those two were ever taken. Her numbers were very high and came down and went back up. Sorry to be vague, but I'll have to get out the paperwork as it has been a while since I looked at her bloodwork~I just have no memory of numbers! I keep wondering if this chronic severe OCD is just the yuck we are left with after two years of PANS or maybe there is still an underlying infection and the abx's just didn't kill it. It's possible. But maybe equally possible that she is stuck with chronic OCD and we may need to go the SSRI route... THANKS!

Can the bloodwork show high numbers for mycoplasma even if the teenager does not show any outward symptoms? I ask this b/c for our daughter, mycoplasma was the cause of her PANS and OCD onset and her numbers were very high. After two IVIGS and TWO YEARS of abx, she does not APPEAR to have any myco or other illness, it is just this extreme, severe and debilitating OCD. We took her off abx for the first time in two years, b/c hey they were not exactly helping and we are still trying to figure out the game plan. I hate to get more bloodwork, but wondered if she could still have myco without showing it one bit. THANKS!

No I haven't. Any good brand reccomendations? THANKS!

Thanks everybody...I think I will definetly halve it to 25 mg. and I'm waiting to hear if her naturopath will monitor her until we get to the psych. He is an M.D. too and knows we have to wait three more weeks to see him. I'm just very concerened that she has been feeling the burden of the severe OCD for too long. Interestingly, she had a B12 shot a couple of days ago and was doing VERY well that eve. Wish we could do that evey day! We might do it once a week, but I still think there is not enough staying power in it for her. Unless there is a cumulative build up effect. Does anyone know if B12 shots do that or do the effects just wear off? THANKS! :-)

Thanks ladies and interesting that the Clomipramine is such a help. My understanding is that it is Anafranil, an SRI vs. an SSRI. (I think) A book I have says it is generally not tried first b/c of side effects, but after failed trials with two or more SSRIs, it is one to try b/c it is in a different class. This Luvox we have at 50mg. is actually prescribed by a PANDAS doc, so now I'm wondering whether it should be halved at all . She is a tall girl and at 143, I wonder if halving it is the way to go. What I mean is that he is not the typical psych that does not understand the PANDAS issues, but is very very aware..... Any more thoughts? And thanks for sharing pow pow. I'm glad that bad episode resolved. :-)

I'm one of those that hasn't been here since last year or so and wish I could be happier to be back. :-( DD is 14 now and after two IVIGs I just don't think we would consider a third. We have an Rx for Luvox at 50mg. and I'm seriously thinking of cutting it in half and starting her on it. We can't get in to the local psych for 3 more weeks for a whole new eval. Up til now, her docs have been far away of course except for one wonderful local naturopath. My qestion is at 143 punds (she is 5'7") Would cutting it in half to 25 mg. be along the lines of what Murphy would reccomend? And the activation I have read of, this is TEMPORARY if it occurs, right? We have never tried SSRIs, I know ymmv, but quite gun shy here. THANKS!

Thanks everybody for your replies. It is giving me much to ponder. She is on Augmentim 1,000 mg b.i.d. So a very high dose and this has been since the beginning of October. She has been on various ABXs continuously for almost a year and a half, except for one week to clear for the Igenex test. Usually, her dosing has been pretty high. And as far as her strep numbers being low, yes I meant the ASO / DNASE B. They were <20 and <70 recently which is a climb from her previous sub zero numbers. We are visiting a naturopath tomorrow. Kimballot, the sinus issue still haunts me. I need to get that checked out too. I am still determined! Hoping we can all slay the dragon and enjoy a meal together one day of....:-) PANDAS McNuggets w/fry/coke

Thanks Nancy, I'll look for those studies. She is 5'8" and 145 pounds so taller than some adult females! May I ask which SSRI your son is on? Thanks again.

I forgot to mention that her Cam K scores ( Univ of Oklahioma study) showed her to be in the upper range of PANDAS.

Hi families, We have been gone from the forum here for a while as we watched and waited to see how our daughter, 13 would respond to her second IVIG. Now, exhausted, we are at a fork in the road and I'm looking for input from you seasoned parents on which direction to go. She was diagnosed by Dr K with PANDAS in the spring of 2010. 5 months later, she had her first IVIG and she seemed to get to the 70% level. At 7 months, it went downhill and she said she needed another. (she was right) Interestingly, one doctor says that at 7 months the effectiveness of IVIG may start to wear off b/c its shelf life in the body diminishes at that point. She had her second IVIG in July of this year a bit over 8 months after the first one. We are now 3 months post her second IVIG and things have not improved like they did with the first one. In fact things got pretty scary just three weeks ago. She was seen by Dr. Chugani who didn't rule out PANDAS, but wanted her to see a psychiatrist (a very renown one) to rule out "regular OCD." Two days ago we saw him and his office for an entire day. He would not rule out PANDAS either, but said "regardless of the cause, the treatment is the same"....SSRIs and CBT. I have a very hard time agreeing with this. If the cause is different, i.e her severe OCD is infection/autoimmune related v.s. non-infection or autoimmune related, the roads of treatment DO seem to be very different!! I do NOT care or need to be convinced which diagnosis she has, I just want her correctly diagnosed and I want her to stop suffering. So I have been wracking my brain and talking with her about the onset and the course of her illness to determine if it is possible this is regular OCD. She is pretty open about discussing this stuff with me. She remembers a brief episode when she was 5. We saw nothing unusual in her at all this time in terms of OCD, not a blip. She did have some very severe gastrointestinal illnesses requiring hospitalization though in her pre-school years. Then at age 10, she had a major and sudden confessing episode about everything in the world she thought she ever did wrong and began excessive handwashing. This was the first time hubby and I ever even considered and looked into OCD. We don't remember her being sick then. The episode lasted a few months then seemed to completely disappear. At 12, she had the Hep A vaccine (due to adopted brothers coming home from Africa) and then came down with severe mycoplasma and then WHAMMO an extremely sudden and severe onset of OCD, kind of like the exorcist syndrome that I could pinpoint the day and the hour when it seemed like a switch was flipped. She also had many of the "textbook" PANDAS symptoms, the frequent urination, the deer in the headlights look, the handwriting regression and decrease in math skills and separation anxiety. That exacerbation lasted at least a month, but she has never returned to baseline since then, despite the steroid burst, the ABXs and two IVIGs, she now has chronic and severe OCD. Through bloodwork, her myco numbers were high and now have come down, her strep numbers were always below zero (WIERD) and now have climbed. They are now in the normal vs. subnormal range, but we are checking them today b/c the climbing numbers may be significant for her since they were so low before. She has tested negative for lymes through Igenex. We are rechecking her thyroid. I'd consider PEX if I thought that was the right thing for her. She has seen a lot of improvement taking N-AC. Does anyone here take higher doses of this? She is on 600 mg daily, and she thinks this is a help, but it only gets her to 50%. SSRIs? It is scary to think of trying that when I have read that they may activate in kids with PANDAS. If you have gone this far, thank you. Please share any input on the forum or privately. If we have been on the PANDAS path erroneously I want to determine that and get on the right path. If we are correct in having been on this PANDAS path, I don't know what to do next! Thank you, PANDAS McNuggets w/fry/coke

Thanks so much everybody! We also have heard there is a large aquarium, which might be a soothing experience. I forgot to mention, that the night before last when we were coming home from a trip and getting out of the car, her 7 year old brother accidentally bonked her in the nose HARD with his noggin' and yes.....her nose is BROKEN!!! As if she has not been through enough....:-( PANDAS McNuggets w/fry/coke

DD 12 is going for her first and hopefully last IVIG near Chicago this week. Any ideas on one or two fun things for me to take her to? I haven't been to Chicago in a looong time. Thank you, PANDAS McNuggets w/fry/coke

Thanks Y'all. Gave it twice. It did not help, and may have made things worse. Best so far has been Valerian Root.

Thanks everybody for replying. I held off of giving it to her, so she has not had it at all yet, but will hang on to it just in case. Bought some l-theanine, a natual amino acid today and she seemed moderately helped by that and a repeated dose of Motin. She is 117 pounds and the dose was to be half of .25, so that would make it .12, pretty low I think. PANDAS McNuggets w/fry/coke

Does anyone have any experience with their children taking xanax? Our dd is getting much worse suddenly and her first IVIG is two weeks away. She is begging for something and I DO have an rx for xanax in her name, but I'm afraid to give it to her. All she has done so far is the abx, steroid and herbal supps. A Google search showed folks talking about xanax making things worse, suicide risk and seizures when getting off xanax. She is suffering and wants something so badly and I don't know what to do here..... Thank you! PANDAS McNuggets w/fry/coke

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