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hawks

Many PANDAS treatment questions

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Relatively new to this forum. Quick and dirty description of ds14 condition/progression. October of 2008 had a strep infection which was treated with abx. OCD symptoms started shortly after. Another strep infection occured again in January of 2009 which was also treated with abx. OCD/hyperactive symptoms continued through the end of the school year in 2009. Talked to ped doctor about OCD issue, potentially related to PANDAS, he knew nothing about PANDAS and thought the OCD issues might be related to puberty/transitioning to middle school. Switched him to a small private school for the fall '09/spring '10 year (7th grade) and seen significant improvements. Switched him back to public school for 8th grade and had no major issues for the first three months until late october/early november. Some symptoms started to return during wrestling season (his OCD issues are mainly germ/contamination). He had a flumist on Nov. 11th which is about the time things started spiraling out of control. We went from a fully functional, very active (normally fearless) 14 year old (hunting/fishing/baseball/basketball/football/wrestling) to currently a isolated, withdrawn (not going to school/wont leave the couch/bed - his safe area) very inactive 14 year old in a matter of two months.

 

We visited our ped in mid December and at this point he said that he was aware of PANDAS and was willing to help any way possible but did not how to treat. We mentioned we had an appt with Dr. K. and he was supportive of that and ordered the necessary blood work. At this time he was put on 250 mg/daily of Azith. and Lexapro (we discontinued the Lexapro after about a week, seemed to worsen the OCD). We have recently had a consult with Dr. K which resulted in the start (today)of a steroid burst (35 mg/daily of prednisone for 5 days) followed by an observation period of 21 days. We feel somewhat better now that we have some direction, but as our son deteriorates daily and we read more of these forums, many questions arise.

Any help/thoughts would be appreciated. Questions are as follows:

 

1.) Should we request a higher dose of abx? 250 mg/daily seems light compared to what we've read.

2.) Is Azith. the correct abx?

3.) Seems to be a lot of discussion about coinfections. Should we have him tested for Lymes? or anything else for that matter? This was disregared as a non-factor (seems to be a pattern from what we have read here)

4.) Had a hard time understanding Dr. K.'s analysis of the results of his blood work. His ANTISTREPTOLYSIN O TITER was 295 ( Normal levels are <250). This was explained as a quick snapshot of ? didnt fully understand his explanation. His Antistrep-O Titer was 302 (Mayo normal levels were 0-640). His Anti-D-Nase B Titer was 331 (Mayo normal levels were 0-375). Dr. K. focused on the latter two tests as being elevated and the reason for his determination that we are probably dealing with PANDAS, even though the levels were within Mayo's normal range. Can anyone help explaining why this might be?

5.) He seems to be leaning towards prescribing an IVIG treatment in lieu of long term abx (both wife and I have read "Saving Sammy"). There seems to be quite a bit of discussion on this, sounds like every child is different, hard to discern what direction to take if the diagnosis is confirmed. Any thoughts?

 

My wife and I would like to thank Dr. K. for all his work with PANDAS kids and dont want it to seem like we are doubting his protocal but weve only met the man once and we just want to make sure that we give our son the best treatment possible. Processing alot of info right now.

 

Any thoughts/advice/answers would be greatly appreciated.

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We had 3 hdIVIGs via Dr. K and absolutely love him for giving us our son back post sudden on-set after strep trigger in June of 2009. Our son was able to achieve many 100% days with PANDAS treatment and higher dose antibiotics (the antibiotic regimen was not typical protocol for Dr. K). However, our son had one remaining physical symptom that was very concerning last June of blood in his stool and we still had no answers for our younger twins symptoms, elevated CAM Kinase and abnormal labs. When we pursued PANDAS treatment we had no idea that Lyme/co-infections could present similar to PANDAS and did not know to investigate these chronic infections.

 

In June of last year we made an appointment with an LLMD because we were not prepared to put our son under and have him scooped for blood in stool. The blood had been present for 7 weeks. What we found out was our son had an unresolved parasite in his intestinal track and the bleeding stopped within 48 hours of correct antibiotic protocol. Shortly thereafter we found him positive for LD via DNA testing. Our son's Igenex results were band 41 positive only when we tested him which tested antibody response only. We have since discovered I am positive for LD and all three of our children have LD/co-infections.

 

Currently, we have no OCD or TICs present in any of our children (our older son is one year post his last hdIVIG treatment). All of our children do have some lingering LD issues that are more physical related so we continue to treat.

 

IF I HAD KNOWN BETTER and IF I COULD DO it all over again. I would have seen an LLMD first to figure out all the potential causes for the failed immune response. LLMDs are very versed in investigating for bacteria (Strep, Mycoplasma, LD, co-infections), parasites (Babesia, Bartonella, Giadia, etc), viruses (typically do an extensive viral panel), molds, environmental toxins, allergen's, etc. They are also very versed in antibiotic protocol and combo'd antibiotics.

 

If in the end of investigation there was no co-infections, I would absolutely treat for PANDAS. Many children with LD and co-infections inclusive of strep are recovering without the use of hdIVIG. Some children that have LD have benefited from the hdIVIG and for some it has not been helpful.

 

So, to make the long story short... you could potentially save yourself the need for more aggressive treatment if LD/co-infections are the source of your child's issues.

Edited by SF Mom

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Welcome to the forum. I am sorry about your circumstances. I have two PANDAS children and another who wavers but doesnt need treatment. My oldest is pretty much stabilized after having his tonsils removed and has been on antibiotics for two years. My daughter is 7 and has just started this journey. I related to your story about the flu mist. She was already showing symptoms of PANDAS and I gave her the flu mist in November and she has gone down hill significantly since then. It all started with 48 hours of the mist. I could have kicked myself. You would think I would know better after haveing one PANDAS child.

 

About the IVIG. I wouldn't hesitate a minute. I am trying to get in and get my dd's labs done and try to get enough information to show a definite PANDAS diagnosis and if I can find a provider who is willing we will move forward with IVIG. Of course, I also think it never hurts to cover your bases and while you are doing labs, you should test for every possible diagnosis that fits the symptoms. So we do plan on testing for Lyme even though I really believe she is PANDAS. I just feel it is my responsibility as a parent to be positive of what I am doing before moving forward with something like IVIG. I really want to jump on this while she is young, so we will take the lab results (what ever they are), and seek treatment for what ever they indicate. I just hope it is clear cut. Sometimes you get really ambiguous results that leave you looking more to symptoms for diagnosis. That muddies up the water a bit.

 

Good luck with your son. I hope you find resolution in what ever road you choose. It is awesome that you are working so hard to be his advocate. He is lucky to have you as his parent.

 

Dedee

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Hawks --

 

Welcome, though sorry you're dealing with a sick child.

 

My DS is nearly 14, and though we now suspect his PANDAS dates back to potentially the age of 3, with his first real exacerbation occurring at 7, he "hit the wall" with OCD, separation anxiety, general anxiety and emotional lability in May 2009. It took us until November 2009 to more or less self-determine PANDAS (thanks to "Saving Sammy" and high results on strep titer tests) and begin antibiotic treatment. As you've noted, every child and every situation is different, and PANDAS/PITANDS may have any number of infectious triggers, so the fact that your child's strep titer tests are not elevated outside the range does not necessarily mean that he doesn't, indeed, have PANDAS/PITANDS.

 

We, too, saw Dr. K. (May 2010) and have high regard for his experience in the field; however, like you, some of the responses we received from him did not mesh with our "field experience" of the disorder and the efficacy of various treatment options in the months with regard to our son between identifying PANDAS and reaching out to Dr. K. He does believe solidly in IVIG as the treatment protocol of choice, but we had had very positive results with antibiotics, beginning in November 2009, so we were decidedly reluctant to undertake IVIG at that juncture. We still haven't undertaken it, and we're one of a handful of families here who have seen remarkable gains in terms of recovery via a combination of antibiotics, supplements and therapy without either plasmapheresis or IVIG. Is recovery speedy? Not in our case, no. But it is palpable nonetheless.

 

Dr. K. also gave us a prednisone trial prescription which we filled but have never used. On some level in our case, it didn't seem necessary; we had the behaviors, the titers and the improvement on antibiotics to support a PANDAS diagnosis. In your case, however, without positive titers, I can see why you might want to try something else for confirmation. You could try the Cunningham test, and/or the prednisone trial can more or less confirm if your son's behaviors are the result of inflammation. From what I've read, though, kids whose PITANDS is actually Lyme-related can experience a worsening of behaviors when given steroids, so if your DS neither remains stable nor improves, that might be a sign that considering another agent such as Lyme would be worthwhile.

 

As for whether or not azith is the correct abx for your son, unfortunately, like with a lot of other things regarding PANDAS, the jury is out. It works great for some kids, it seems, and less great for others. Our success story has come by virtue of Augmentin XR in the "Saving Sammy" dosage: 2,000 mg. per day, to begin with, for just over a year. We were led to try this response by the very similarities that have led me to respond to your post: Sammy and our DS and yours were all roughly in the same age bracket with the illness struck, Sammy and our DS were both "math prodigies" before the PANDAS struck, Sammy, our DS (and presumably yours, from your post) had a heavy tendency toward OCD behaviors.

 

Trouble is, at this juncture, nobody seems to know for sure how much age, developmental stage, behavior set, heredity, etc. play into the efficacy of each treatment option, so we're all left to learn from one another and, to some extent, experiment -- cautiously and as prudently as possible, but experiment nonetheless -- on our own kids in the meantime. Much luck and support to you on this journey, and hold onto the knowledge that there IS an answer that will help your kid. It's just the trick of finding it!

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I can totally understand your hesitancy to jump in to IVIG. The decision is not made lightly. To complicate matters, the response to various treatments, well.......varies. You'll find children who could not stay stable on antibiotics or just could not make enough improvement and went on to IVIG, plasmapheresis, or exchange. Others seem to be able to maintain on various doses of antibiotics.

 

My DS7 had PANDAS for at least a year before diagnosis and treatment. His primary symptoms were severe separation anxiety and irritibility, anger, rage. He also had ocd's. They were many and varied but did not interfere too much w/ daily living, although I think they contributed to his anger/rage, especially when we unknowingly interrupted them. He lost his social skills. Became w/drawn, wouldn't play w/ friends. Had lots of fears. He developed tics a few weeks before diagnosis and treatment.

 

He was placed on an antibiotic, biaxin, for 60 days. We have seen nearly complete remission of symptoms. He is a little ocd'ish but its pretty mild and still has some separation anxiety. Everything else has disappeared. He is currently on a prophylactic dose of azithromycin 2x a week. He's been on it for about a month and seems to be holding his own.

 

For every child here who might have a similar response to antibiotics, you'll find many more parents here who'll say no way that would have done anything for my child.

 

My advice is to go w/ your gut and see how it goes. If the abx wasn't working, you can believe we'd have already jumped on the IVIG boat and paid for it somehow. My son and our family couldn't go on living like that.

 

Cindy

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To those that responded, we thank you. The first day on the steroid burst was rough, OCD symptoms seemed to be enhanced, kind of anticipated that might happen. We will keep you posted on his progress.

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Relatively new to this forum. Quick and dirty description of ds14 condition/progression. October of 2008 had a strep infection which was treated with abx. OCD symptoms started shortly after. Another strep infection occured again in January of 2009 which was also treated with abx. OCD/hyperactive symptoms continued through the end of the school year in 2009. Talked to ped doctor about OCD issue, potentially related to PANDAS, he knew nothing about PANDAS and thought the OCD issues might be related to puberty/transitioning to middle school. Switched him to a small private school for the fall '09/spring '10 year (7th grade) and seen significant improvements. Switched him back to public school for 8th grade and had no major issues for the first three months until late october/early november. Some symptoms started to return during wrestling season (his OCD issues are mainly germ/contamination). He had a flumist on Nov. 11th which is about the time things started spiraling out of control. We went from a fully functional, very active (normally fearless) 14 year old (hunting/fishing/baseball/basketball/football/wrestling) to currently a isolated, withdrawn (not going to school/wont leave the couch/bed - his safe area) very inactive 14 year old in a matter of two months.

 

We visited our ped in mid December and at this point he said that he was aware of PANDAS and was willing to help any way possible but did not how to treat. We mentioned we had an appt with Dr. K. and he was supportive of that and ordered the necessary blood work. At this time he was put on 250 mg/daily of Azith. and Lexapro (we discontinued the Lexapro after about a week, seemed to worsen the OCD). We have recently had a consult with Dr. K which resulted in the start (today)of a steroid burst (35 mg/daily of prednisone for 5 days) followed by an observation period of 21 days. We feel somewhat better now that we have some direction, but as our son deteriorates daily and we read more of these forums, many questions arise.

Any help/thoughts would be appreciated. Questions are as follows:

 

1.) Should we request a higher dose of abx? 250 mg/daily seems light compared to what we've read.

2.) Is Azith. the correct abx?

3.) Seems to be a lot of discussion about coinfections. Should we have him tested for Lymes? or anything else for that matter? This was disregared as a non-factor (seems to be a pattern from what we have read here)

4.) Had a hard time understanding Dr. K.'s analysis of the results of his blood work. His ANTISTREPTOLYSIN O TITER was 295 ( Normal levels are <250). This was explained as a quick snapshot of ? didnt fully understand his explanation. His Antistrep-O Titer was 302 (Mayo normal levels were 0-640). His Anti-D-Nase B Titer was 331 (Mayo normal levels were 0-375). Dr. K. focused on the latter two tests as being elevated and the reason for his determination that we are probably dealing with PANDAS, even though the levels were within Mayo's normal range. Can anyone help explaining why this might be?

5.) He seems to be leaning towards prescribing an IVIG treatment in lieu of long term abx (both wife and I have read "Saving Sammy"). There seems to be quite a bit of discussion on this, sounds like every child is different, hard to discern what direction to take if the diagnosis is confirmed. Any thoughts?

 

My wife and I would like to thank Dr. K. for all his work with PANDAS kids and dont want it to seem like we are doubting his protocal but weve only met the man once and we just want to make sure that we give our son the best treatment possible. Processing alot of info right now.

 

Any thoughts/advice/answers would be greatly appreciated.

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I am an "old timer" I haven't posted for along time but someone sent me an IM so I thought I would check in. My son had PANDAS in Jan 2007 and it took at least 2 years for his symptoms to subside. He still has some residual OCD which I treat with Luvox and it seems to help. WE did supplements, tried different medications, HBOT (we bought one) IVIG (3 times) anything that was anti-inflamatory. Finally (it was a slow process) he started coming back. I think every kid is different and not one thing is the magic cure. I think it was a combo of everything we did. We still have the HBOT and we went in faithfully for 2 hours a day for a year. Now we have not used it in a year and I am wondering if I should keep it or sell it? I always worry if he gets strep again that the symptoms will flare up and we will be back in it. Good Luck and hang in there! Sarah

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We are on day 7 of the 5 day steroid burst/21 day observation. DS14 OCD/anxiety is off the chart, far worse than it has ever been. Is this normal? Should we start leaning in a different direction or continue to be patient and observe.

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At this point, if you feel you can hold on for another week, I would observe - but also document. If you're comfortable with words, write your observations down. Another useful tool is to pick the top 5 symptoms and every day, give those 5 symptoms a rating (10 being the worst, 1 being good). So if rages are bad, they'd get a 7 for the day. If no rages that day, a 0.

 

You can put this into excel and then make a graph of symptoms over time. On the chart, you can type or write in the treatment or illness that was going on at the time. This helps show trends, effectiveness etc.

 

As for whether to pursue other tests, opinions...you'll get a variety of opinions here. We all have so many different experiences. No one size fits all answers. For now, I'd educate myself on other triggers (lyme, yeast, celiacs, others?) and their treatments. One or two will probably feel like a better fit than the others. Look into those treatments and know your options.

 

It's tempting to look for only one answer. You just want the nightmare to end - NOW. Unfortunately, sometimes you have to peel away and give different treatments time to play out. You don't wait indefinitely, but I'd use this evaluation period as a time to plan ahead without doing anything different treatment wise.

 

I've thought about SF Mom's comment that to do it all over again, she'd have started with a Lyme Literate Doctor (LLMD). We started with Pandas doctors who helped, and then also sought help from an LLMD, who helped even more. I wondered if we could've saved ourselves a lot of time and money by starting there. But my daughter is also showing signs of "something" and our LLMD is just as baffled by her as the Pandas doctors were baffled by my son when he didn't respond as well to treatments as they expected. So I don't know that any one type of doctor has all the answers. I think they each contribute to helping peel away layers of complex illnesses. That they fail to sometimes get you to the finish line just means they weren't on the last leg of the relay team.

 

It's a new and I'm sure frustrating way to look at doctors and diseases. I remember thinking Pandas alone was way too confusing and surreal. Now we tell you to consider other odd diseases too? So take it slow. Be as methodical as you can. Digest our advice and consider our opinions. But don't be married to any one diagnosis or any single treatment. Use your own gut and your son's reactions to chart the course that's best for you.

 

And please keep us posted. We all learn (and argue and cry) together.

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So I don't know that any one type of doctor has all the answers. I think they each contribute to helping peel away layers of complex illnesses. That they fail to sometimes get you to the finish line just means they weren't on the last leg of the relay team.

 

It's a new and I'm sure frustrating way to look at doctors and diseases. I remember thinking Pandas alone was way too confusing and surreal. Now we tell you to consider other odd diseases too? So take it slow. Be as methodical as you can. Digest our advice and consider our opinions. But don't be married to any one diagnosis or any single treatment. Use your own gut and your son's reactions to chart the course that's best for you.

 

And please keep us posted. We all learn (and argue and cry) together.

 

LLM - very well said. I think we all have / need different people on our relay team.. but I really do not think that one runner could go the distance with most of our kids. Sometimes we need to re-think the line up, but we are the coaches and we will get there.

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Hawks-

 

Iowadawn here. Sorry I lost you on the phone the other day! This was pretty much our reaction and timeline for the steroid burst. Any gains happened during the burst, not after & then he got worse. I don't have really much advice b/c our journey has been so full of twists and turns.

 

Dawn

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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?

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Hawks, what antibiotic is your child on now? How long on antibiotic before steroid was started?

 

How much does your child weigh? Seems like too low dose of azithromycin for a child that age. I would double check that. If your child is NOT on antibiotic presently, it may have been too early to stop it. 30 days for acute infections.

Edited by Phasmid

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