nicklemama

Sounds like PANDAS to me too. Our dr is also Dr K and he says the first 'real' PANDAS episode is often overlooked because its not as severe as the one that sends you looking and the child is young and its often thought to be a phase or not linked to strep or illness. We just saw Dr K today for DS's 3 month post IVIG follow up and he asked DS how he was sleeping, lol. He is, in fact, sleeping MUCH better, among other things that are much better.

The white skin patches you describe sounds like a fungal infection. My Dh has had this. OTC Lotrimin will take care of it.

I use the regular Florastor capsules. My DS7, 57lbs, swallows pills, so its no problem. You can take Florastor w/ abx. You will need to time the Culturelle away from abx. I've never found Florastor locally. I order it from drugstore.com

My DS had 7 months of OT for his SPD. It helped some. The thing that helped the most was the long term abx. To determine SPD, you need to have your son evaluated by an OT who is trained in SPD, if you want to seek some treatment. Around our area, there are quite a few OT clinics that treat only children and most of them have SPD and autism. SPD occurs very frequently in kids on the spectrum. The first thing I was asked was if DS was on the spectrum. Wanted to add, many insurances don't cover OT for SPD. We got it covered for 7 months, then they pulled the plug. Around the same time, he was diagnosed w/ PANDAS and started on abx. Then he didn't need the OT because the sensory issues faded away. Unless your insurance covers it, I'd just chase the PANDAS treatment.

Sensory issues are most definitely PANDAS related. Sensory Processing Disorder was the first diagnosis given to my DS. His sensory issues have mostly abated after abx and IVIG. He became a huge sensory seeker, which can be mistaken for hyperactivity. He ran into things, touched everything, smelled everything, spun on the floor, sat in our family room chairs w/ his back on the seat and his legs dangling over the back of the chair to watch tv upside down, jumped, spun, climbed high up into trees. He also became sensory defensive to loud sounds. He would cover his ears and the sound of public toilets flushing freaked him out.

I suppose it depends on the child. My DS7 swims 3-4 times a week and was on our pool's swim team this year. He spends hours at the pool when we go. He is not affected by the chlorine or anything at the pool. I'd be more inclined to think the reaction was due to bacterial exposure, but I'm certainly no expert.

I've been using Florastor twice daily for my DS7. Its Saccromyces boulliardi. He's been on abx and Florastor since Oct 2010 continuously. It was recommended by Dr T. Its been successful for my DS. There are others here who use different products that are working well for their children. My recommendation is to choose a high quality probiotic, whatever that may be. I like Florastor because you can give it at the same time as abx w/out it affecting the cultures in Florastor. S boulliardi is a good yeast rather than a good bacteria, which are in most probiotics.

We had the neuropsych testing before we knew about PANDAS. Save your money. If your child is in exacerbation, they will find things to diagnose. Our DS was given an Aspergers and mild bipolar secondary to the Aspergers diagnosis. With PANDAS treatment, he no longer meets the criteria for those. You'll be glad you used the money for treatment, instead. It cost us $3000 plus out of state travel expenses.

My DS has never had a positive strep culture or titers indicating strep. He has PANDAS. Positive cultures, etc... are not required for a PANDAS diagnosis, although it makes the diagnosis much easier. Approx, 30% of all PANDAS kids do not have positive cultures or titers.

I've been giving my DS7 0.5mgs for nearly 2yrs now. I'm not willing to spend two hours trying to help him get to sleep. I don't think its good for him and its not good for me. I hate to be so selfish but I am his main caregiver and I need my rest too, if I am to effectively deal with him during his waking hours. I spent at least 6 months of every night taking hours to get him to sleep. I cannot do that any longer. I have not seen any need for increasing the dosage, even though he is growing. I have the ok from two neurologists, his ped, his psychiatrist, two PANDAS experts, a neuropsychologist. A store clerk is not going to sway me, although I'm sure they mean well.

Augmentin is Dr K's first choice or at least it was in May. If there's allergy, then zithromax. DS7 was given treatment dose of 250mg Augmentin bid for a month post IVIG, then 250mg augmentin sid prophylactically for the next yr. The two other kids getting IVIG at the same time had penicillin allergy so they were given zithro. Don't know the dosing.

DS takes Florastor which is Saccromyces boullardi. He takes the recommended dose of one capsule 2x a day. It was recommended by Dr T. After nearly 9 months on abx, we've seen no signs of gut issues (knock on wood).

I can relate. I don't think I have a diagnosible case of PTSD but I definitely have some of the symptoms. When my DS does a behavior that seems to me like it might lead to an angry outburst (although he hasn't had one in a long time), I cringe and my anxiety goes through the roof. My heart beats fast and the feeling of panic sets in. It doesn't happen often, thankfully. I wish I had time to take care of myself. I don't feel great and I have no opportunities for exercise. When school starts I am going to get back to it. I have health issues that cropped up in the late spring and now I have to do something. I've got no one to help me w/ my DS (except my dh who has to work to pay for all this), probably like most of you.

The horrible cracked and chapped lips in my DS was due to an ocd of wiping and licking his lips. Stopped after abx was started.

Regression was a big part of my DS7's PANDAS symptoms. Most of his regressive behavior went away on abx. We found the most improvement after IVIG. OCD is more prominent in my DS during exacerbation but he did develop tics about a yr after the major episode and before his diagnosis. My DS was put on lamictal, which is primarily an antiseizure med that has mood stabilizing and anti anxiety properties. It really helped w/ anger and agression before his diagnosis but it did nothing for the regressive behaviors. I would really hesitate before going the mood stabilizing route. These psych meds don't always work well in PANDAS kids. I'd try to get to the bottom of any infection and try and get him in long term abx before I'd go the psych med route. We didn't know our DS had PANDAS when he was put on lamictal. We are currently weaning him off lamictal. Its not horrible but its certainly not been a smooth road this past week since we started the tapering.

My DS7 fits your graph 2 perfectly. Dr K found his 'potential minor exacerbation' in DS's medical records and we remember it. It happened 9 months prior to the big one. Ear infection, abx prescribed, cranky and irritible for a few months that we did not link to the ear infection but to Flonase. He had just turned 5 when he had the ear infection. 9 months later, the whopper after FluMist. Not dx'd, not treated. Resolved w/out treatment but no return to baseline. Few months later, started in again, no dx, no treatment. Fluctuations but never returned to baseline. Dx and abx started. Good results but not to baseline. IVIG, very near baseline. Residual and minor ocd left.

ESR is standard testing for inflammatory diseases like lupus, RA and other rheumatory diseases. I'm sure its tested in other inflammatory diseases as well. However, its not specific enough to use diagnostically to say, yes, you have inflammation, no doubt. Many people w/ rheumatory diseases do have elevated ESR's. Its just one signal where many have to be present for diagnosis. With the fact that not everyone who has an inflammatory disease has an elevated ESR makes it only one small part of the diagnostic picture. There are other markers used like C Reactive protein that shows inflammation. I am on of those who's blood does not show any signs of inflammation, although its clearly there. I think its likely that the inflammation from PANDAS remains in the brain, rather than circulating throughout the body. One more thought, lyme causes arthritis like symptoms and maybe the ESR is elevated in many lyme patients. I just wanted to point out that a negative result does not exclude inflammation. One other thought.....there are people who have elevated ESR's who have no known disease. Its just one small part of the big clinical picture.

I'm assuming the ESR is the erythrocyte sedimentation rate. My DS has never had one done. I wasn't aware it was used in PANDAS. I have had rheumatoid arthritis since 1997 and my sed rate has always been normal and I can assure you that I have inflammation going on.

DS was ticcing before IVIG. He had started up the blinking tic again, after having lost it and a throat clearing tic on abx. He developed a shoulder shrugging tic right after IVIG that got really bad and now its gone. Tics were not, however, DS's major PANDAS presentation. The ocd's, etc.... were very impairing. Tammy- Glad you figured out the headache was from an ear infection. Who would of guessed?!

Our experience has been mostly positive post IVIG. DS is nearly 13wks post. He had two "incidents" where he backslid quite a bit. One was when he was exposed to a child diagnosed that day w/ strep. The child had a positive rapid test in the morning and the parent saw fit to take the sick child to the swimming pool and then to the fireworks that evening where DS played w/ him both times. I gave him treatment dose abx, 500mg augmentin bid 5days, for him, age 7 57lbs now. We saw a turnaround. The other incident was when he lost two teeth in one week. We saw his symptoms increasing and we went back on treatment dose again for 5 days. He is taking 250mg augmentin sid as a prophylactic. He's doing very well. Probably 95% at this point. You guys are worrying me that the prophylactic dose is not enough. ETA- I, too, am surprised they are using amoxi.

We've got about 20 members on our MI PANDAS support board. Not all would be able to attend, of course.

I've not seen any research but my DS's first major PANDAS episode was set off by the FluMist in Oct 2009. I took a prefectly fine boy to the ped and two days later, our worst nightmare began. In hindsight, this was not his first PANDAS episode, it was just so awful it couldn't be overlooked. We and Dr K believe he had a mild presentation of PANDAS 10 months earlier when he had an ear infection that was treated w/ abx. His mild symptoms lasted a couple of months. Our DS's reaction was so bad, at the urging of a friend who's a NICU nurse, I reported it to the vax adverse event board maintained by the CDC. I think its called VAERS. Never heard a word back from them.

LOL, I'd second the motion for calling it the invisible paper!

What an ordeal you've been through. I hope the IVIG provides the relief your daughter needs. Don't expect overnight results. It takes a few weeks. I know that after such a long time, a little more time may be hard to bear. It took us a yr to get our son properly diagnosed. Today, after IVIG 12 wks ago, our son is at approx 95%. Hang in there and please update us.

Don't forget you'd attract those of us from Michigan, as well.