nicklemama

From my mother- "I never really thought anything was really wrong with him. He just seems kind of spoiled to me."

We have not seen side effects from Florastor. My DS7 has been taking Florastor since Oct when he started high dose abx. We've seen nothing but improvements. He's been taking one packet of Florastor Kids twice a day since Oct.

Hindsight: 1st episode, anger, irritibility, age 4, lasted about a week, then complete remission. Took amoxicillan for ear infection. Hindsight: 2nd episode,anger, irritibility, age 5, lasted a few months after another ear infection, complete remission, took omnicef for 10 days. 3rd episode, major exacerbation, anger, irritibility, rage, severe separation anxiety, ocd, age 5.5. No known illness, received FluMist vax. Lasted two months. Remission to about 85% of previous self. Spent a year trying to get proper diagnosis, knowing something was seriously wrong w/ him. 4th episode, major exacerbation, anger, irritibility, rage, severe separation anxiety, ocd, tics, age 6, after ear infection, treated w/ omnicef for 10 days. Did not remit until diagnosed PANDAS 8 months later. Total time undiagnosed and untreated nearly 3 yrs. Currently doing well on Augmentin 500mg 2x day.

I used the sample letter found on the pandas network and made it tailored to my DS. I sent one copy to his teacher, one to the principal and one to the resource room teacher. He was diagnosed Aspergers just before PANDAS and I was trying to get some services for him. What a joke! He's working ahead of grade level and didn't have many issues as school, so they really balked at giving him any services. He was placed in a social skills class, once a week for about 20min w/ the social worker. After we got the PANDAS diagnosis and treatment, his Aspergers behaviors went away. I had already had meetings w/ the teacher, principal and resource room teacher (who he does not know, never seen, she just handles the "case"). I sent the letter just a few weeks ago to help them understand more about PANDAS. I have not heard one word back from the school. My DS was originally put on biaxin 250mg twice a day. He took it for 60 days. Then he went to a prophylactic dose of zithromax 250mg twice a week. He was on that for a month but it was not enough and he started slipping back into PANDAS behaviors. He was put on Augmentin 500mg twice a day. He's been on Augmentin for 20 days and has 20 to go. Don't know what he'll be given then but he has returned to 90-95% of his function before PANDAS. He's doing really well. I hope that gives you some hope. We've done no diet changes. He takes probiotics 2x a day to protect his gut from the antibiotics. It was recommended by his PANDAS dr. He's on vitamin supplements because he has low ferritin levels.

My son was not ASD before PANDAS. He was diagnosed Aspergers at age 6y10m, just before his PANDAS diagnosis. The Aspergers behaviors have disappeared w/ abx treatment for PANDAS.

In my experience (w/ our ped) its better just to go to someone who understands and will treat PANDAS. As for the SPD, you may find treatment of PANDAS relieves the SPD symptoms. My DS suddenly had SPD issues in kindergarten. He was diagnosed SPD-sensory seeking in summer 2010, at age 6.5 and we had him in occupational therapy. Once he got the PANDAS diagnosis and started on abx, the SPD went away.

Welcome. I would add to this discussion that OCD is not always so apparent in young children. Our DS is your DD's age. He turned 7 in Dec and started first grade fall 2010. He's been battling PANDAS for more than a yr now, only diagnosed in Oct 2010. He has a diagnosis of intermittent explosive disorder. Looking back, his explosions occurred when we interrupted OCD's we were unaware of. He has a "just right" and cannot stop what he's doing until its just right in his mind. We took it as defiance and would insist he stop, which resulted in a blowup. He also has counting ocd, similar to your daughter. He became obsessed w/ math and counting, adding, multiplying, etc... He's got many more ocd's when he's in an exacerbation. Right now, he's been on first biaxin and now augmentin since mid Oct and he's doing pretty well. I'd say he's about 90-95% of where he was before this all started. We were able to take a family ski trip over the weekend and had a great time. He's also got a lot of Aspergerish type behaviors when in exacerbation. Loses his social skills, talks weird, talks about death/dying. Talks like a little professor, corrects everyone (adults included). We've also been told he had Aspergers back in early Oct just before PANDAS diagnosis but most of those behaviors have disappeared, as well. He's never had the math difficulties. He's the opposite. He is reading and doing math well above 1st grade level. Separation anxiety was horrible. That and the explosions were what caused us to go dr to dr looking for what was wrong w/ him for a year, not realizing he had ocd, which didn't become apparent to us until last summer.

My husband and I caught this episode in Sept and that's how we came to know our son had PANDAS. We'd been to all kinds of doctors. Not one mentioned PANDAS but they mentioned plenty of other scary things.

If I had chosen not to work w/ a dr I'd never met, my DS would still be in a major PANDAS exacerbation right now because there are no local doctors for us to work with. Our ped will not take the lead and treat but she will take the direction of Dr Trifiletti. It took one year to get help for my son, going from dr to dr, trying to figure out what was wrong with him. I had a parent on a parenting board suggest PANDAS to me and then my dh and I happened to catch the Discovery Health Channel episode about Sammy who has/had PANDAS. The longer you wait, the worse it may be for your child. I took the bull by the horns and called and emailed Dr T and now my son is being treated for PANDAS. My dh did a medical licensing board search on Dr T in the states where he did/does practice to feel better about it. I never had any qualms.

We don't qualify either. Darn.

My DS7 is able to hold it together at school. I don't know how. Right now he's doing very well on abx. When he was at his worst, he had some ocd's at school but they weren't very noticeable. His kindy teacher last year thought he was great because he was always cleaning up the room and picking up even the tiny pieces of paper off the floor. She would tell me how wonderful he was. She had no clue that was his cleaning ocd. He went his entire kindy year untreated, undiagnosed. This yr, in 1st grade, he had lost his social skills over the summer and his teacher had some concerns that he would not do group work, wanted to do things by himself. She didn't know he wanted to do things his way, the perfect way and not have someone else "mess them up". He was having trouble w/ transitions because he wanted to do things just right and finish anything he was working on. He was also being a little irritible w/ some of the kids and was playing by himself. Once we started abx, all those ocd's went away and his social skills returned. He saves the rages for home. Fortunately, abx has gotten rid of those too.

My DS7, 55lbs did not have good results w/ azith, 250mg 2x a week. He started the downhill slide. After 30 days, we threw in the towel and he's currently on 500mgs augmentin bid.

The flu mist set off my DS's PANDAS. In looking back, we see he probably had his first episode at age 4 when he had an ear infection. Next episode at age 5 with another ear infection. Both those episodes were very mild w/ irritibility and tantrums lasting a few weeks but resolved on their own and we thought it was a phase. The third times the charm. He had the Flu Mist and all ###### broke loose in our house. The rages were the worst. I can't tell you how to turn off the flu mist. DS was still undiagnosed and the 3rd episode remitted in about 2 months. Fourth episode after yet another ear infection at age 6. That episode never remitted on its own. We finally figured out he had PANDAS (on our own) and contacted Dr T. Antibiotics have returned my DS to nearly 95% of his former self and this is in the absence of any active recognizable illness/infection/what have you. He apparently has a "hidden" infection somewhere. I suspect his sinuses. He is asymptomatic for illness currently. My son has normal titers. Normal titers does not exclude a PANDAS diagnosis. Cindy

Count me in as wanting to know the name of this cream. Cindy

My DS's ferritin is low too. I am giving him a children's multi vit w/ 100% iron in it. We don't know how his iron got low. His is very low, 14ng/ml. The range of normal at the lab was 22-322. I was told not to give him milk or other dairy when he takes his multi vit w/ iron, as calcium interfers w/ iron absorption. Before we knew he had PANDAS, he did some food restrictions. Some days were hard to get him to eat and he absolutely refused most meat. That may have a part in his ferritin deficiency. Haven't redone the bloodwork yet, so I don't know if the multi vit is even helping. We see the effects of the low iron. He does not have the physical stamina he once did. Dr T told me low ferritin was seen in some w/ immune problems. Cindy

It was confirmation. DS has negative titers and no documented case of strep. His symptoms fit the PANDAS pattern and he responds well to antibiotics. Dr T did not require the test for diagnosis. It was for my peace of mind (if you can be at peace that your child has PANDAS). Cindy

I take hydroxychloroquine (Plaquenil) for RA. I've been taking it for 13 years now. No side effects for me. Milder than the other RA drugs. The drawback is its not very effective for those w/ more than a mild case of RA. Its a thought. I have an appt to see my rheumatologist next month. I plan to ask her some things. My DS was diagnosed w/ PANDAS after my last appt. Cindy

I could write your post. My DS's CamK came back in PANDAS range. His ASO and anti DNAse 2 titers are normal. He started treatment in Oct 2010 and we have seen him have improvement of about 95% after antibiotic therapy. He's still on it.

My DS had a CamK of 144. His antitubulin was high, the D1 was at the top end of normal. When I looked at the chart provided by Dr C, 145 seems to be the middle of the PANDAS range. She has since come out w/ newer "levels" of CamK and DS is in the "lower PANDAS range from 135-155" and I'm quoting that range directly from the parent letter she sent out w/ the results. I received my results just last week. Cindy

I have RA. In order to take the injectible drugs for RA, a patient must have had trials on the less expensive, older, milder, less side effect drugs and found them to be ineffective. My insurance requires this and most rheumotologists won't start you out right away on the injectibles. The injectibles, like Enbrel, have some serious potential side effects. They lower your immunity, so that you more easily catch all sorts of virus and bacteria. You should not be around anyone who has had a live virus vax while on them. They also have an increased risk of lymphoma. Cindy

I was just talking to Dr T about this on Monday. My DS has one high anti neuronal antibody (anti tubulin). His CamK is 144. Dr T said they don't know what high anti-neuronal antibodies means, at this point. His blood was drawn 30 days into biaxin and he was doing really well, w/ most of his symptoms in remission. He has normal titers. Don't know if any of this makes any difference or not. I'm not sure if the experts even know.

Interesting. We are in the "other" category because my DS has never had a throat culture for strep. We don't know if its strep or something else. His titers are normal. We have a suspicion that he has strep in his sinuses but cannot prove that at the moment. We are going to have his pneumococcal titers checked to see if he's got immune issues. His IgG's are all normal, except subclass 4, which is high. Dr T said its due to allergies. Cindy

They were very prompt in early Nov but I contacted her lab assistant Kathy Alvarez. Kathy-Alvarez@ouhsc.edu 405-271-2133 It was reported on this board that they are not sending out test kits until the end of the month. They were 100+ tests behind at the end of Nov. and weren't accepting any more until they got caught up. Cindy

Wow, congrats!!!!!! DS7 needs me to be next to him every night while he goes to sleep. Not even melatonin will knock him out if I'm not lying next to him. He gets in our bed in the middle of the night, every night. No IVIG here, just abx. I'll live vicariously through all those who have reclaimed their beds!

I don't see a connection in my DS. My DS has had sleep issues since he was 4.5. He's been on Florastor Kids 2x day for nearly 3 months and I don't see any abating of his sleep issues. We give him melatonin to get to sleep and he still gets in our bed during the night. One of his worst PANDAS symptoms is/was extreme separation anxiety and I think that's why he gets in our bed. Its better w/ therapy and abx for PANDAS but it has not totally gone away. Cindy