colleendonny

Hi Lisa, Here is what Dr. T says on FB: Rosario Trifiletti: If your child has PANDAS, there are very frequent problems with certain SSRI's, especially at low doses BAD - Zoloft, Prozac, Paxil - especially true at low doses. At low doses, these SSRI's have a "Ritalin-like" stimulant effect and often make children with PANDAS "manic". Usually good - Celexa, Effexor Best - Luvox .... this is my go to SSRI if one absolutely MUST be used - Also remember SSRI's typically take 2-4 weeks to work Dr. T Good luck!

has anyone had any luck with Dr. B's office in obtaining lab results without paying for a phone consult? I would like ours to be faxed to us, but they haven't and they haven't answered my email. We don't go back until June 20th and I would hate to wait that long. If you have managed to get yours, I would love to hear how!

We use the Skin so Soft Bug Guard Plus IR3535 Insect repellant mousterizing lotion and the IR3535 pump spray for evening.

AtALoss: I sent you a PM. You can find it in the blue box in the upper right hand corner

I had a great time too!

For my DD, it was the last to leave. Actually they are not totally gone... I recommend CBT.

I say exposed because thats how Dr. B described it to me. It wasn't and IgG or IgM, but there were antibodies detected.

I just thought of this. I told DD I would bring her to the nail salon today. Is this okay for PANDAS kids? Could the smells cause any exacerbations? She is still on treatment dosage of Augmentin.

Our pedi actually tested hee today for Lyme after what has been going on with the seizure like episodes. Now she has a fever of unknown origin that was as high as 104 last night. He is testing through Imugen. We won't have the results for about 1 week. I still haven't got my results yet.

I can't really help you interpret, but wanted to chime in that my DD5 was also exposed to RMSF. From what I hear it isn't very common.

Oh man, hopefully its just a fluke. Hang in there. My DD can get pretty nasty to me, but I think its just the age and also being around some sassy girls at Pre-K.

This ear infection is.back in full force! It was pretty clear yesterday. Brought her in at 4:45 and her temp was 102. She had to get a shot of rocephin. And will get another tomorrow amd saturday. I gave her motrin a 1/2 hour who and tepid bath and her temp was 104.1. I'm going to retemp her soon amd hope it goes down. Otherwise we will be at the ER again

Ok she now has a temp of 102 even with Advil. She is on abx now for an ear infection, which is pretty much already healed. Can this be related you think? Or maybe she picked up a virus from being in the hospital for 2 days?

Thanks Nancy, I added her into our appt. With Dr. B for the end of June and will bring her along to Kayleighs LLMD appt at the end of the.month. You don't think her blood work could be misinterpreted because of her age? Her pedi said babies will not be tested for Hep C until 18 months because of the antinodies...

Oops, Just see Dr. T did test for Lyme. Not sure who he used, or if he tested for co- infections, but it's just another thing to look into. How is your DD? Is she on abx?

Hmm, yes ours our similar but DD has a positive IgG for ehrlichiosis. I don't think Dr. T tests for Lyme and co-infections, does he? If your DD hasn't been tested, I suggest you do so through IgeneX. It could be her trigger... There have been parents here whose kids have gotten PANDAS/ PANS/ PITAND from viral infections and vaccinations. Did she recently get a vax? Did Dr. T advise you on no more vax? Where do you live?

I have a few questions that I am looking for some help on. My DD5 (PANDAS) had a few indeterminates for Lyme through IgeneX. She also has a positive IgG for ehrlichiosis and is being treated by a PANDAS doctor and an LLMD. LLMD also started her on A-bart. But my questions are about my other kids. We just had my DS2 tested by Dr. B for possible PANDAS, and Lyme and CO. We will most likely test him for just Lyme also through IgeneX. He had a known tick bite last September. I never treated him for it. (If only I knew then what I do now!) Questionable symptoms I see in him are sensitivity to light and seldomly dilated pupils. ( He was sensitive to light before the tick bite). Brought him to the eye doctor and everything was normal. He has awful emotional libality, (which could be typical 2 year old behavior). When DD5 had sudden onset back in October, I did notice some separation anxiety from him at night, although not extreme. But again, separation anxiety in a 2 year old can also be normal. A few weeks ago he strated to stutter. He never had a stutter before. He also gets frequent bellyaches and his belly is often hard and descended. We are seeing a GI specialist next week and Dr. B is testing him for Celiacs. We should hopefully get his results back soon from Dr. B. Now I also have a DD 10 months. Back in December she had her 6 month checkup. She had all of her vax prior and I walked in the office that day planning to refuse any vax. But me pedi talked me into getting the PCV13. Afew weeks later she started to shake her head from side to side as if saying no. I brought her to the pedi and he thought it was nothing. But we did a 1/2 hour partially asleep EEG. It was normal. She was also cutting a few teeth at the time and I read some babies shake their head from the pain. A month after she was sitting in her high chair and I looked over and her eyes were glazed and she was doing a slow blink while her head was slowly bobbing. It looked as if she were trying to keep herself conscious. The episode lasted about 2 minutes with a period of about 10 minutes of slight confusion afterwads. We took an ambulance to the hospital and there were no more episodes there. Met with a neurologist a few weeks later and there was no EEG ordered and said to call if anything happened again. On Easter and the day after I noticed 2 more episodes of the same activity but only lasting less that 15 seconds. So I called to make a follow up, but it isn't until June. Anyway, Saturday night, at dinner in her high chair, she did another episode that lasted 10 seconds and another quick one right after. Then again 4 more times when we got home. It was 6 episodes within 2 1/2 hours. So I called Childrens Boston and they said to bring her in. We stayed overnight Saturday and Sunday. She had an EEG moniter on her from 11am Saturday until 2pm Sunday. There were no abnormalities. She also started the head shaking, after stopping for a while, a few weeks back with an ear infection. She did a quick episode where her eyes and head went down (a little different than the episodes on Sat night) and still, the EEG showed no abnormalities. And after watching her closely the past two day I see her sometimes with a blink that lasts longer than it should and sometimes her head dropping. So, now I am wondering if she could have Lyme..or maybe PANDAS? I had Dr. B test me for Lyme and TBI's last week and haven't received any results yet. I will probably test myself for Lyme through IgeneX as well. I have no strange symptoms whatsoever though...but I guess stranger things have happened. I will have my husband checked by Dr. B as well at our next appt. in June and maybe through IgeneX. So my questions are: Is my 10 month old too young to check for Lyme and Co? Would she still have my antibodies? I am still nursing very frequently, so I am guessing she definitely has my antibodies. Do you all think Lyme can be transmitted through semen? I think some suggest it, but others don't think it is... My husband has Raynaud's, where your hand and feet lose circulation, especially in the cold. Thanks for your ideas.

Hi I don't have much answers for you as we are basically in the same boat. DD5 doesnt show any sign of strep in either ASO or DnaseB. Her IgG's are all normal, weith a few on the low end of normal. Her vitamin D is also on the very low end of normal. Just wanted to say I relate with PANDAS and no sign of strep. Have you tested through IgeneX for Lyme an Co? Do you see a PANDAS specialist?

Nope, she wasn't on meds for her initial episode. It's baffling, but I will definitely pursue this. Is she too young to check for Lyme and Co, mycoplasma, ASO etc....? Would she still have my antibodies? And she is still nursing, a lot... Would this make a difference in her blood tests?

I wonder if Dr. B will give her blood tests for Lyme and Co, plus other infections. I believe there IS a reason for what is happening with her. She is on abx now (Cefdinir) for an ear infection, and I am noticing the episodes now more than ever. So strange. I'll have to mention this to LLMD at the end of the month. Thanks for the insight, ladies.

Nancy- What did your DD's seizures look like? The hospital said it was behavioral or stimming. I find it so hard to believe. You can't snap her out of them when it happens. And sometimes they are so quick, it can stop before I have try to call her attention. And I'm wondering how often it happens when I don't always have my eyes on her.

Her EEG showed no abnormalities. I do think something is going on. I knew I shouldn't have given her that PCV13 vax. I went in that day telling my pedi no vax, and he talked me into it saying she already had 2 of these and no reaction. Figures, there was hardly anything I noticed at the hospital, but I did notice this morning her kind of dropping her head, but she snaps out of it within a few seconds. We have a supportive pedi now, so we are no longer getting anyone vaccinated. I got the pertissus vax in the hospital and I still nurse her. I had Dr. B check me for Lyme last week and.we don't see him again until June. I think I will do a phone consult. I wish things were easier for all of our kids I'm just really having a hard time coping with all this stress lately. I think I will bring Lucy along to our next Dr. B visit. And I will give her a throat culture Wednesday when I go to our pedi's. Thanks everyone.

I should be there

I am at the hospital with my DD10 months old for possible seizure episodes. She is still hooked up on the EEG. Basically her first episode was in Feb. It was about 1 month after a PCV13 vax. Before the 1st episode she started doing a head shaking, like as if saying no. Had an EEG for that, was normal. Her 1st episode lasted about 2 minutes. Her eyes glazed over amd she was blinking and her head was falling gently. She was confused for about 10 minutes after. Never had a follow up EEG. She had a small episode on Easter and two the next day. Looked the same but lasted about 10 seconds. Then Saturday night it happened 6 times in less than 3 hours... She has been on an EEG since Sunday morning. No episodes until this morning where she had one that lasted a few.seconds. Wonderig if this could be an early sign of PANDAS.... Any thoughts?

That conference looks like it will be very interesting. I wish I could attend! Is it open to the public? As for dinner, I should be there as long as things are going okay with my little one. We are still in the hospital.