adkmom

Thanks much! I'll pass the info. along to her.

Wendy, We have twins as well. Did both your kids contract Lyme? My other son has never shown any signs of Lyme, so never tested.

Havent' found the Lyme doc yet. Someone in Albany would be best. Am trying to figure out how to handle it diplomatically with Dr. B. We see him in 3 weeks. And I too would prefer to see the 2 docs for a while. (how was Dr. B with you seeing a LLMD as well?) Just feeling TERRIBLE that I let my poor little guy get this thing!!! All of this from a stupid bug. He also had Mycplasma pneum. at one point and I never knew it. Anyone else ever feel guilty??? We try so hard to protect them from things and along comes this. Where was that darn bug spray!!!!!!!

Hey Laure, Do you work with Both Dr. B and a Lyme specialist...even if the treatment is the same? Any idea with how long it can take to see improvements for Lyme? thanks. darlene

Hi everyone, If anyone could please help clarify. I'm sooo confused with the whole new Lyme diagnosis (ds4 also has Pandas). How do you know how long someone has had Lyme? Can the Igenex test tell you somehow? How do you know what "stage" they are in? My ds4 has neuropsychiatric symptoms but they could also be Pandas, not Lyme, I think? (ie: aggression, oppositional behavior, fear/anxiety). I'm getting soo confused with Lyme vs. Pandas and what symptoms belong to each. Would appreciate any clarification or help. thank you!

Hi everyone, Trying to help a struggling mom in Louisiana. Anyone know of a Pandas doc down there? Thanks. darlene

Thanks ladies. SFMom - Laure said you were a great resource for her, so I'm sure I'll be picking your brain Dr. B has started him initially on Zithro., 200 mg daily. Stopping Omnicef for the time being. Never heard anything about cyst busters! got a lot to learn. (which I'm sure this forum will help me with) PS Ladies - My doc husband is amazed at the amount of knowledge on these boards. Moms rule ....(well maybe sometimes with Pandas kids. adkmom

Lisa, So sorry to hear everything you're going through! We've been there with the screaming at bedtime...although I'd have to admit not for an hour at a time. You must be exhausted. My DS4 diagnosed with Pandas and just found out he was positive for Lyme. He had a steroid taper and we saw improvement and Dr. B didn't think we'd get a positive Lyme result but we did. We're hoping now that with a Lyme treatment as well, we'll see his aggression diminish. You don't yet have all the tests in, so hang in there. I wouldn't hold back though. Call the doctors, even Dr. B and let them know what's happening. They should be able to prescribe something fairly mild for him to sleep. I know every day can seem like an eternity. We're all with you. Hang in and have hope. adkmom

Can anyone tell me if there is a way to tell how long your child has had Lyme? My DS4 diagnosed Pandas, just found out positive for Lyme. (i dont' have Igenex results in front of me yet) The Dr. office didn't give specifics. (about bands and such) He'll be on Omnicef and Zithro. Is that typical treatment? Many thanks. didn't think I'd be in so many forums!!! But glad we're all here for eachother! adkmom

So, we have a positive for Lyme disease! Dr. B was "shocked" with the results, since my DS4 responded so positively to steroid taper. (His tic decreased substantially) and I guess typically with Lyme, a steroid will make a tic worse? if I've got that correct. Anyways, it explains why he has daily fatigue and is still fairly aggressive. So switching to Zithro. from Omnicef. But I'm now at a total loss with Lyme. I still don't have my understanding of PANDAS and now have to figure out the whole Lyme Disease issue. Any help? How do you know if your child actually has PANDAS, and not just Lyme? Would they not have any OCD and PANDAS specific symptoms? What should I expect with treatment? Do most go to Lyme specialists? I don't know how long he's had the Lyme, how does that impact treatment? Any input would be helpful. adkmom PS - We had 1 GLORIOUS day and then slipped back to the moody, irritable aggressive patterns.

Hi Dedee, Yeah, Dr. B had said the flu mist was the worst thing I could have done for him...but didn't know what we were dealing with at the time. Sorry to here your child had a similar reaction. I never would have thought it would trigger anything and my little guy too could hold it together in school and then come home and was horrible! eventually though it got so bad that he just didn't want to separate and go to schoo. It all just snowballed over the course of a month. Good luck.

Thanks ladies. It also gives you (or at least me) a peace of mind because I'd catch myself wondering if this was from poor parenting and not disciplining enough and then asking all the time ...is this how it's suppose to be? I had no comparisons. His behavior symptoms started first and slowly with adhd, then odd and then after a flu mist, full flown exacerbation with strep and tics and mild ocd and all the behaviors taken way over the top with rage and aggression. Anyways, I'm prepared for the next round Just thankful to get a breathe and at least know this isn't all in my head. A disorder does exist. We did nothing different, no extra timeouts or punishments. His "awakening" was clearly due to meds. thanks for listening (reading:)

thanks for the replies. Seeing Dr. B in 2 days and waiting for the Igenex results. I know there's still this "thing" present and I'm trying to prepare for downward spirals and not get too excited. But I had nothing to compare my 4 1/2 year olds behavior with. I honestly could tell what normal should be. I thought we'd be dealing with strictly opposition adhd behavior. Now, at least, I have a comparison and can see what a child should be like...even a toddler. Now I understand what so many have talked about. He truly awoke a different child...like coming out of a coma. It just kills me to imagine the number of kids who aren't diagnosed with this. Uhhhh! When you see the difference, it's incredible. How could anyone think this doesn't exist!!???

For everyone who's dealt with Lyme, I'm wondering if my ds4 is improving on Omnicef, can he still have Lyme? (We're waiting for test results.) If he's improving, wouldn't that rule out Lyme? since he's not being treated for that? (what the typical Lyme treatment?) Thanks for your thoughts.

I had to write something because I'm in such shock right now. My ds4 has been on 10 weeks of high dose Omnicef and we're now 13 days post Prednisone (2 week taper). It's been terrible with rages, meltdowns, aggression and total inability to focus. I woke with a totally different child! He crawled into bed with me and when he woke, GENTLY touched me and said "mommy can you please wake up?" OMG!!! Previously, my mornings started with him jumping on me, yelling to "get up!", was irritated, impatient, rough, and loud. Can it be that the medicine is kicking in? I know we can spiral down again but I'm just in shock wondering if this was how he was suppose to be all along. He's been having these behaviorial issues for over year. I thought we had a ADHD with oppositional disorder child. Can't believe it could have been PANDAS all along ???? Kind of scary. Anyways...had to share. Off to Dr. B. on Wednesday.

Hi Kara, I don't have any suggestions, other than maybe the steroid (if he was taking one) is still in his system. You're way more experienced with this than I am. But just wanted to say I was thinking about you all weekend We're off to see Dr. B Wednesday.

Hi there, Don't know if this helps at all. But my ds4 is just as you describe. It's been exhausting to tire him out. At 3, we would go on a 3 mile hike and he was still full of energy, the playground, playing in the pool and onto some games ect. People would watch me and wonder how we do it. I'd have to say and I'm no expert but it is NOT normal. I think when anything with your child comes to the point where it's painful and several times i said "this is torture." something is off. He'd run to his bed at 8:30 at night and start doing flips, literally, on the mattress. When I described this recently to our pandas doc, he thought the loudness and activity level had more to do with a pandas symptom..of hyperactivity, or just needing constant stimulation. We're still just starting treatmnt, so can't say any long term improvements. But I get where you're coming from. Probably doesn't help, but you're not alone. We're hoping the treatment will help settle him. Please god!

Looked at my notes...my little guy was on 1200 per day of Augmentin.

Don't get that. DH4 is on double that...500 mg of Omnicef (unless there's a dosage difference with antibiotics) and almost as much steroid dosage. Maybe you can coax him into a higher dose and at least see if it helps?

Hawks, Confused a bit because our 4 year old (45 lbs) was put on 30 mg (only 5 less than your 14 year old)? He was on prednisone. What's the standard dose, anyone know?

We're about 8 days off of steroids. My DS4 was taking 30mg daily for 6 days and then tapered for 6 days. I guess it was a steroid burst although the dr. didn't call it that. we were using it for a possible sinus infection. Most symptoms (excepted hyperactivity, inability to focus and some aggression) got better including fears and tics. But 3 days off, symptoms started to return, slowly. don't see the tic much but some fears/anxiety although mild. We're just waiting and seeing. The dr. warned us that after the steroid is stopped, symptoms can typically resurface...just another confirmation that there's an inflammation problem (ie Pandas) Don't know if thiis helps...but you're not alone.

Info. about the pass says it doesn't allow you to go to the front of the line.? So, not sure how much it would help us. He does need the stroller because of foot and knee pain. Did they give you problems going to the front?

Glad you posted this. Amazing what info. we can share on this site! We're leaving for Disney in 1 week and I've been getting quite anxious. DS4 was only diagnosed 1 month ago (the trip was already planned) we need special precautions to keep him from picking up any viruses (on the plane primarily) but wasn't sure what to think of the Disney experience. We were there last year, before the diagnosis and we too thought it was just sensory issues he was struggling with. We limited to 3 hours a day (which gets expensive!) and had to deal with a few meltdowns but NOTHING like we've seen lately. Those meltdowns were mild. So, thanks for raising the question. I'll be looking into the pass and can share how it goes. Not sure what diagnosis to give.

Hi there. I'm relatively new to the forum as well. We diagnosed about 2 weeks (at least I think) after my DS4 major episode. He displayed mild OCD symptoms but could have been interpreted as just strange toddler behaviors (he wanted all the lights off in the house but ONLY when a movie was on; he was afraid of going in the bathroom but everywhere else in the house he was fine) Anways, the symptom that caught our attention was a tic where he was constantly touching his head. He tested positive for strep, put on antibiotics for 10 days. He had 99% improvement! I thought it was over. We lowered the antibiotic dose. Within a week, PANDAS was back stronger than previiusly. I'm not mentioning this to scare you. BUT, it became apparent that a short term antiobiotic was not an end to the disease. The symptoms seemed gone but PANDAS lingered. His brain was still inflammed. So, for this reason I personally would strongly suggest a PANDAS doc as well, who is likely to keep him on a treatment plan until his body/brain has healed completely. Hope that rambling made some sense! That said, 2 months into antibiots, my DS4 is now showing a steadier sign of improvement.

What were the symptoms that made you suspect something was not right...and how did you find out about PANDAS?