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MPatti

Need Advice - Recent PANDAS Diagnosis

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Hi,

 

I am hoping to get some advice/insight as I am new to this. My 5 year old son was diagnosed with PANDAS a week ago. To give some background - on January 10, 2014 he went for his 5 year well visit at the pediatrician - he was given the MMR, chicken pox vaccine and Flu Mist. The next day he started exhibiting a motor tic - constantly. I knew something wasn't right as he has never had any tics before. Two weeks later (January 24) we were seen by his pediatrician who ran a lot of different blood tests. Results came back the following week and I was told everything was normal except for the strep screen. Pediatrician offered antibiotics - which I started him on (Augmentin). After doing countless hours of Internet research, and learning more and more about Pandas, I wanted him to be seen by an expert in this. I was able to get him in to see Dr. Latimer in Bethesda, MD a week ago Friday. She diagnosed him with PANDAS and prescribed Augmentin (1200 mg/day for 30 days) and Orapred (20 mg a day for 7 days, 10 mg a day for 7 days and 10 mg every other day for a week).

 

He has been on the Augmentin for 10 days (including days he took it as per the pediatrician's instructions) and the Orapred for 8 days. I am seeing absolutely no improvement in him. He tics at least 5 times per minute. I am scared the medicine is not ever going to work.

 

Does it usually take this long before any improvement is seen? Is there something else we should be doing? We are scheduled to see Dr. Latimer again on February 27.

 

Any advice would be greatly appreciated. It breaks my heart to see him like this.

 

Meredith

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Hi--Good for you that you were able to get in and see Dr L so quickly, and to start potential treatment within weeks of the onset. That, hopefully will be a most effective step to have taken!

There is a good chance that you are seeing PANDAS, from what you are describing certainly makes one understand Dr L's diagnosis.

 

I can share with you our own experience with our very first steroid burst for our d. When I asked Dr K ...HOW would I know if the steroid burst was working -- His reply was that we would see an obvious and dramatic improvement. I asked him what "obvious and dramatic" meant, he relied I would know if it happened!

 

He also indicated that it could be up to 6 to 8 weeks after starting the steroid burst, but we may see a change sooner.

 

Give it time. The brain takes time to heal.

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First, nothing will change until you are sure the strep is truly cleared. My son's first exacerbation with Pandas took 3 rounds of abx to clear step. You need to wait 2 days after abx, test, and if he is still positive, more abx. That being said, even if he shows negative, you have to remember that this is a antibody/brain inflammation issue. It will take time for the brain to calm down, and the immune system to realize that there is no more strep in his body. That can take time. Most likely, even if you clear strep with first round of abx. you will need to do more until you see cessation of symptoms. The abx not only kills infection, but it also serves as an anitinmflamatory, and also tells the immune system to stop. Which is what needs to happen. My guess is that it will take at least 30 days before you see improvement on abx.

 

Best regards,

Q

Edited by qannie47

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The good news is it appears your son was diagnosed quickly. The bad news is it takes time. The good news is, for those kids who are quickly diagnosed, they seem to recover better. My son's PANDAS began after a flumist when he was 5. I know you'd like these horrible tics to go away now. Reality is, it takes time to heal the brain and recuperate. Every child is different in their recovery. Have faith and a little patience. You will get there. Your son is in very good hands with dr Latimer.

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For full transparency I am in the pro vaccine camp, however those three are all live vaccines. For my younger daughter I now get live vaccines spaced out and will never get flu must, we now get the killed shot. Could you ask her to try another abx like zith? Or maybe rifampin and zith if he doesn't seem to respond to augmentin? We never had tics but did see abatement of symptoms with abx in less than 10 days. Hang in there, he will get better?

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Thank you so much to everyone who has replied to my post and offered their advice/insight! I really appreciate it. If anyone else has anything else to add, I would love to hear it. Again, thanks.

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Just wanted to mention our experience was similar....

 

Older DS received MMR, had a strep related illness and virus all in three week period at 5 years of age. He woke up a different child, was diagnosed right away with PANDAS and is now 9 years old. Like others have mentioned healing does take time. The assault to his immune system of MMR/Strep/Virus was his trigger however he had multiple chronic infections that we were unaware of at the time inclusive of gestational Lyme (passed from me to him while pregnant). He would more accurately be diagnosed with PANS (term that came about after his original diagnoses) but no longer suffers from ongoing TICs or OCD. He still has minor issues related to chronic Lyme but suspect he will live a very normal life.

 

You are in good hands to get the initial necessary help you need. They do get better once you unravel all the specific issues for your child.

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Thanks for your reply. So glad to hear your son is doing so well - definitely gives me hope! How did you figure out that your son had multiple chronic infections? Blood tests through pediatrician or Dr. Latimer? Sorry for all the questions - all this is new to me and I just want to make sure I am doing everything I can for my son.

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Our PANS daughter also suffered from multiple chronic infections. Her first motor ticcing episodes were triggered by the MMR vaccine, undiagnosed insect bite and strep at the age of 7. Her decline was not sudden however, and did take about a month to fully develop.

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Hello--

 

I can concur that it takes time. Our son was diagnosed by Dr. Latimer last May and received IVIG in early June. She warned us that it might take as long as 6 months for the IVIG to take effect. He has been on Augmentin since May and will continue it through the school year. His primary symptom was OCD and attachment anxiety. We couldn't take him to school because of his panic attacks. So we chilled last Summer after the treatment, and then to help him with re-entry to school in the Fall we started him on a low dose of an SSRI. We were reluctant but felt we needed to help him any way we could, and school is the best place for a 7 year old. It worked. The first few months were challenging, but I think the combination of the SSRI helping him build his confidence by making it through each school day, and the 6 months it took for the IVIG to kick in, led to him being able to go to school all day, alone, happily starting in December.

 

Every child is different, but I can attest to the truth in that it takes time. Although dealing with Dr. Latimer can be frustrating, I believe in her judgement.

 

Hope this helps. Don't stop looking and trying. All the best to you--

 

OBDad

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I will add our experience and my advice for what it's worth. My daughter also had her first explosion of symptoms immediately after the flu mist. She is my 3rd PANS child so I knew what it was immediately. I had know idea that the flu mist would cause a PANS flare however. I only wish I had somone like Dr. L to see as quickly as you did.

 

In regards to the medication and symptoms......Our experience with steriods is that they are very helpful with Neurologic symptoms in regards to anxiety, OCD symptoms, separation anxiety, raging, etc during a flare. However, when it comes to tics the steriods actually make them worse. Once the steroids stop, the tics will actually decrease and many times stop all together, but during the days of taking the steroid the tics will be heightened. We have found a "sweet spot" if you will in dosing where she can tolerate the steroids and it doesn't make her tics too bad but will still improve neurologic symptoms. I'm a Nurse, so I am really bad about playing around with dosing. I think you will find that once you start the decline on the steroids the tics will certainly improve if not stop all together. Best of luck.

 

Dedee

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Hello--

 

I can concur that it takes time. Our son was diagnosed by Dr. Latimer last May and received IVIG in early June. She warned us that it might take as long as 6 months for the IVIG to take effect. He has been on Augmentin since May and will continue it through the school year. His primary symptom was OCD and attachment anxiety. We couldn't take him to school because of his panic attacks. So we chilled last Summer after the treatment, and then to help him with re-entry to school in the Fall we started him on a low dose of an SSRI. We were reluctant but felt we needed to help him any way we could, and school is the best place for a 7 year old. It worked. The first few months were challenging, but I think the combination of the SSRI helping him build his confidence by making it through each school day, and the 6 months it took for the IVIG to kick in, led to him being able to go to school all day, alone, happily starting in December.

 

Every child is different, but I can attest to the truth in that it takes time. Although dealing with Dr. Latimer can be frustrating, I believe in her judgement.

 

Hope this helps. Don't stop looking and trying. All the best to you--

 

OBDad

Excellent post- on all fronts!

So glad to read this hopeful, positive post.

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Thanks again for all of the feedback - I really appreciate it! I will talk to Dr. Latimer about changing his antibiotic. Is there anything else I should be doing right now? I feel so helpless doing nothing except constantly watching my son to see if there is any change in him. Are there other tests I should be pursuing right now? Anything else I should be doing? I want to be as proactive as possible.

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My daughter had severe motor tics and chorea/choreiform movements.

We were unable to use Augmentin as she is severely allergic to it.

 

When she was on a prednisone burst, the improvement was pretty quick, within about 36 hours, but you could see her begin to improve almost immediately. We also used clindamycin, and valium at night. She always responds well to Zithromax too.

 

Ultimately, we did T&As on both kids, and she also got plasmapharesis, which resolved almost all of her issues.

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