Kayanne

That is probably something that you would need to discuss with her. I really think she treats each case individually. In my dd's case, this was the first recognizable episode, and she was very healthy prior to ithis happening to her so I think our case was not very complicated...so we have only gone to her one time so far. ~good luck Karen

Very Happy for you...I hope it continues!

Also, if you only do a phone consult, you still need to find a local dr. who is willing to follow her recommendations. She can't actually write a prescription for someone who is not her patient.

Side effects for our daughter were minimal. The first two weeks when she was on the higher doses, she had more temper tantrums...but her behavior was going there prior to starting the prednisone. She had a couple of pimples on her face. She did gain weight, but she was losing weight prior to starting it because she was refusing to eat...so I think it was a good side effect. Dr. Beth Latimer 301-530-9200 Dr K. can be reached through www.webpediatrics.com Dr. Latimer is the one treating my daughter, and we have been very happy with her!

I'm glad that everyone seems to be on the mend. Can you clarify if you meant that you would do a steroid burst if he gets sick or if he has PANDAS issues? My DH and I were discussing this just this morning...where to draw the line.

Her office will bill your insurance for you as an "out of network" provider, so you may get some reimbursment from your insurance company...still waiting for ours though. We saw her on June 5th, and last night we had a phone consult with her...each time I was left feeling that she is a great doctor who really cares...don't hesitate to contact her.

I have always refused the flu shots...emotionally I hate agreeing to give my kids shots. However, mainly I have always tried to take the approach that I will not interfear with my kids immune system more than is necessary. I believe the truth about vaccines is somewhere between the two ends of the debate, and I have kept up with all four of my children's immunizations because if most children are recieving the vaccines, when will my kids get exposed--and some of these viruses can be more dangerous if you contract them as adults. Prior to dealing with PANDAS, my family has been healthy, and I didn't feel that we fell into the "at risk" group for complications from the flu. See to me, I kind of see getting colds and flu, playing in the dirt and such as the way our bodies are supposed to build resistance...I just think so many people have been led to believe that getting sick is bad...I see it as a natural part of life. I won't even give my kids tylenol or motrin when they have a fever (unless it is very high or they are not tolerating it well) because that is part of the immune response that your body launches to fight infection. I am troubled that the defination of "at risk" poeple has risen dramatically, and I question the motivations behind the recommendations. I just don't buy into the hype. However, now that we are aware of PANDAS, I do think I need to take a closer look at how best to protect my family, but I'm still going to pass on the flu shots/mist.

Steroids supress the immune response and address inflammatory issues...both of which are believed to be issues with RF, SC and PANDAS. PANDAS and SC are related or may even be the same just on different ends of the spectrum. My Daughter had her first recognizable PANDAS episode this spring...she responded very well to prednisone. Best of luck Karen

This past spring was nuts for strep in my house: I had it 3 times, PANDAS daughter had it 4 times, two other children 3 times, DH and infant one time. Dr, Latimer stressed to me that I should clean with bleach...I diluted some with water in a spray bottle and sprayed all the bathroom fixtures. I also began using bleach with all of my kitchen towels, bath towels, and whites. Another thing that Dr. Latimer said was that strep needs tissue to survive, but I really don't know how long outside the body it can live. Prior to that I always cleaned with clorox wipes, and they do not have bleach on them. As far as strep A and strep B being similar, I really can't speak to that. But there was a thread about strep being in probiotics, my DH googled it, and from what he told me is that the term streptococcus really just refers to the shape of the bacteria.

I haven't had a lot of tests done on my daughter either... When we put her on the prednisone, I think she healed in reverse. Meaning that the newest behaviors were the first to dissappear and the earliest ones that we noticed were the last to be resolved. I guess since this is considered to be inflammation in the Basal Ganglia, it makes sense that as the swelling goes down, the child's behavior "rewinds" For us, I felt she was better when she was able to answer yes or no questions, and make simple decisions again because that was the first PANDAS behavior that we were aware of.

We have a phone consult with Dr. Latimer this week. My daughter is still on 100mg of azith daily. Every family has to weigh the risks vs. benefits of any medication or treatment. In our daughter's case, she seemed to be getting worse, and Dr. Latimer felt the prednisone was the way to go--we relied heavliy on her judgement. Also, we didn't want to wait for treatment, and prednisone was something that we could try right away.

When we saw Dr. Latimer in June, she believed that we were early enough in this that we may not need to consider PEX or IVIG. She specifically told us, "You are not there yet." She did, however, tell us that if our daughter was not at 100% or very near there by the end of the month-long course of prednisone that these procedures are something we should be considering. We ended up extending her pred for an additional 2 weeks...right now she is essentially at 100%. For me priority is to prevent future strep because she told us that if our daughter gets another infection, she will very likely have another episode. She also said the same for IVIG and PEX...so the impression that I have is that there is no "cure" per say...this is just something that needs to be managed. The longer term antibiotics are for prophylaxis to prevent future strep.

Yes. Her last dose was July 18--she was about 98% improved By the first week in August she began to draw, write, and work on her puzzles again. Essentially bringing her completely back to us. She started school last Monday, and I have heard nothing but positive feedback from teachers and admininstration. Her only lingering issues are so minor that someone outside the family wouldn't pick up on them...minor potty issue, some minor germ issues, and some minor isssues with being rigid on rules.

Just some ideas that I am throwing out: Maybe the recovery is like a sawtooth--as mom md described the recovery from PEX--ya know, two steps forward, one step back... Azithromycin is anti-inflammatory, so hopefully it is addressing any brain inflammation...and when you're talking about the brain, I believe you need to consider that the details of symptoms and recovery are going to unique in every case. Maybe you are seeing symptoms of yeast overgrowth...this thread might be helpful: http://www.latitudes.org/forums/index.php?showtopic=4748

Sorry your family is going through this too.... You probably already know this, but prednisone can effect the Cunningham Blood test results. My daughter seemed to be more belligerent on the steroids for the first couple of weeks...but hearing voices is scary, I totally can understand why you stopped them! She was on prednisone for six weeks, and we too saw improvement for a few weeks after stopping them. I'm glad you've been in touch with other PANDAS families in your area....I would be lost without this forum and everyone's support. Best of Luck Karen

My daughter's case is one in which there was not a sudden and dramatic onset. She just started to have trouble making decisions, was crying a lot (especially in the bathroom), and was telling on herself a lot....and it was about a week or two of this that we started to get frustrated with her, and it wasn't until her teacher approached us about the changes that we really beagn to address what was going on. In the past, we had seen her tell on herself, and have crying fits...so some her behavior was not new....we just hadn't seen it in a while. We cannot specifically pinpoint when her behavior changes started, but it was around the end of March/beginning of April. Her teacher last year felt there was a distinct difference when she returned from Easter break. Truthfully, I had considered her case mild when I read a lot of the stories here, but now I know that her gradual worsening added to that perception. When she finally began to really improve after being on prednisone for nearly four weeks...she came alive again.....and it was then that we realized just how far gone she really was. We became used to her not speaking, and interacting, and when she seemed to have a dramatic overnight improvement, was when it really hit me how bad she was.... We have a family history of anxiety, panic disorder, OCD....so her behaviors at first seemed to line up with OCD...Thank God her ped. had heard of a link between strep and OCD....because truthfully, we wouldn't have questioned an OCD diagnosis. My daughter has only been treated with antibiotics and prednisone.....no SSRI's.

Awesome news...we also had a good first week!

That is exactly what happened to my dd...that is what I meant by "devolved" because it seemed to get less and less pronounced and then just dissappeared.

Quick recap: DD6 was on 5 different antibiotics from March to May because of strep...her OCD and ADD started end of March or the beginning of April. When I found this forum at the end of May, her ADD seemed to morph into Autism and she was getting worse. God Bless you all!!!....because of your advice and Diana's (almost) insistance that I take her to see Dr. Latimer, our Daughter received treatment. She was on prednisone from June 6 to July 18, and is still taking 100mg of Azith daily as a prophylactic. We have a phone consult scheduled with Dr. Latimer next week, and I am hoping to back down to penicillian as a prophylactic. She is now fully returned to us--she still has a mild potty issue, and some very, very minor OCD that I now recognize because of going through this...honestly, most people would not even see it. School started on Monday, and everyone is amazed at her turn around. Her last quarter of kindergarten was awful...they couldn't even assess where she was at at all. Prior to her episode she was an excellent student. The reading specialist assessed her yesterday...up to a reading & writing level for the end of first grade, and she did wonderfully...I cried for a half hour after I got that news! So now here is where my brain has been: Do I go ahead and try to push for the immunological tests, the Cunningham blood test, basline ASO and Anti-Dnase titers? We are definately setting her up with a nutritionist because prednisone can deplete some minerals...and we don't want to just start giving them to her without any direction. We all know the stress of multiple doctors appointments and dealing with blood work...I want to do the absolute best for her...Is it trying to get these answers now, waiting for another episode (I hope like #$@@ that never happens) before I pursue these tests, or is it best not to subject her to all of this while she is doing well? Also, could any of these test results be helpful in general to all of our PANDAS kids? I know the decision is ultimately mine and my DH's, but I would love to hear everyone's two cents. Thank you, ~Karen

Not really related to PANDAS but....my niece and nephew were not good sleepers, and it took a few years to discover that they were dealing with acid reflux....so maybe there could be another underlying medical condition.

My dd6 first presented with obsessive thoughts that were holding her back, ADD that kind of evolved into Autistic behavior, she coughed a lot into the crook of her arm after a while....not sure if it was a germ thing or a tic...the coughing devolved and disappeared after a few weeks on the prednisone.

Dr. Beth Latimer in Betheseda MD....is an excelllent doctor who really "gets" this syndrome. She has helped us and several other families on this forum. I also think Dr. Cathrine D. Nicolaides is in Marlton NJ...she is one of the doctors who treated Beth Maloney's son....her book "Saving Sammy" is about to be released in a couple of weeks.

If you are willing to travel, then I wouldn't hesitate to see Dr. Latimer...however, it may not even be necessary if your ped. is willing to do what it takes. IMHO there are three things that need to be addressed with PANDAS: 1) The infection must be cleared...or kept at bay if clearing it is not possible. 2) Brain inflammation should be addressed---steroids, PEX, IVIG to bring a child back as close as possible to baseline. 3) Prophylactic antibiotics should be used to prevent future strep. Good Luck. ~Karen

I'm surprised about the steroid withdrawl too because it happened 9 nine days after the last dose....however, I'm not qualified to even make such a judgement on that. What I've read about steroid withdrawl is that it is more likely to happen with higher doses for a shorter time or for smaller doses over a longer time period...but I couldn't find anything about how long after the last dose you might see the symptoms of it. But do you think it is just her slipping back into PANDAS behavior...from what I understand about Dr. K's protocol...a slip back is expected because he is only using the steroid as a diagnostic tool, not a treatment? So many things can exercerbate a child's behavior like Vickie wrote...you seem to doing the best that you can as parents to advocate for your dd...I hope you are soon out of this crisis

Great Job! Maybe we should all start to send him our stories....