Where do we go from here?

[bws]

I am posting this for my dear cousin who is struggling with a Pandas son. bws

 

Hi

My DS 17 has been diagnosed with Pandas 7 months ago by Dr. Schulman.

He has been having trouble since age 11. Has had numerous strep as a child, and a low immune system anyway. He always caught every bug around.

At age 11 we realized that this child is depressed,OCD, spaced out, not concentrating on his studies etc etc. (You all know the typical pandas symptoms....)He was then diagnosed with Asperger syndrome, and we treated accordingly with therapies for social skills and OCD. He was put onto many psychiatric drugs. Unfortunately, they did not help, and only aggravated everything. We tried herbal supplement which did do some good, but not enough. This struggle went on for about 4 years.

Unfortunately, at age 15 he was diagnosed with Type 1 diabetes. Thus started a new journey. We felt that herbs and insulin might not mix, and DS was so overwhelmed with all this that we discontinued it.

 

Last spring was the final straw. DS was not functioning at all. Could not step out of the house, crying all day, did not got to school. At this time, when I was praying to G-D to help my dear cousin's daughter was dx with Pandas and she immediately called me. I realized that this might be our problem.

 

I saw Dr. Schulman and she gave DS high dose of Azithromycin. It immediately worked and slowly all of his issues were disappearing The situation was so great, that I felt comfortable sending him to college out of town. He is doing very well there and we were all happy.

 

Here's my story:

He came home for holiday/winter break last week and one Day 1 he was wonderful. Day 2 saw a regression, and Day 3 was quite bad. Since he has been on rx for 7 months now, we went to check his liver function and strep levels. Liver function is fine but his strep levels stayed the same and AntiDnase B actually went up!

May '11 Aso 547

Dnase B 362

December'11 ASO 543

Dnase B 468

The above tests were done on day 3 after a 2 hour wait at a busy doctors office with many sick kids around.

DS knows he was not acting appropriately and immediately took advil. After a while, he came over to me and apologized. He is back in school and feeling a better now.

 

I am at loss. I do not feel comfortable keeping him on high dose abx for too much longer. It is working on the symptoms but obviously not on the blood. Could a two hour exposure cause his DNASE B to go up so high? Could it be someone in my house? What to do, we obviously cannot keep him in a bubble?

I will be calling Dr. Schulman, but I feel we need to move on. WHAT? IVIG?(I am a little scared of this.) Homeopathy? anything else? Anybody familiar with a real Pandas doctor close to NYC? Is there a way, to get all symptoms resolved?

 

He has been so sick for so long we need to get him out of this. Anybody with any information, please help.

 

Thanks.

[Dedee]

I think in many situations you need to go by symptoms. It may not have been your house at all but just coincidence that he was there. My oldest son is 16 and has been on antibiotics since he was 11. He does not have tonsils but he has never had a completely normal ASO or AntiDnase B. Even when we switched him from amoxicillin to full dose Zith for 3 months his titers actually went up by 200 points. His current titers are higher than your sons but Dr. Murphy said not to worry as long as his symptoms are stable. I know you said he had a couple of bad days, but you were able to get that under control so that is a good sign. Numbers are highly individualized......some PANDAS kids have horrible symptoms with completely normal titers. Your son has probably been exposed to someone (who knows where or who) and his body reacted but this should pass. If he needs antibiotics for a while longer, then so be it. With this disease you can only worry about now and try not to get really hung up on the future. He will grow out of this and my guess is sooner than later. Try to stay positive and I agree that consulting with your doctor is always a wise idea. Best of luck.....

 

Dedee

[peglem]

If the zith is successful at treating symptoms, why do you want him off of it? The ASO and antiDnase titers are indicators of an immune response to strep, but they are not the antibodies that are responsible for PANDAS symptoms, so lowering those will not change symptoms. Titers can rise from exposure alone- but not overnight.

 

In my opinion, if he gets symptom resolution w/ abx alone- stay the course, and save the big guns for if abx fails to help.

[bws]

If the zith is successful at treating symptoms, why do you want him off of it?

 

I feel that is not safe to have a child on ABx forever, or perhaps he will develop a resistance to drugs? I dunno, I just don't feel too comfortable with the situation. What would indicate that he is getting better, in blood?

[peglem]

If the zith is successful at treating symptoms, why do you want him off of it?

 

I feel that is not safe to have a child on ABx forever, or perhaps he will develop a resistance to drugs? I dunno, I just don't feel too comfortable with the situation. What would indicate that he is getting better, in blood?

I don't know. We just look for symptom resolution, but my kid is one that has not ever had elevated ASO or Dnase. Her immune system is messed up though, and it looks as though we have multiple autoimmune reactions going on. My daughter is on long term zith prophylaxis and gets IVIG every 3 weeks. When she still has an episode, we switch up the abx and add prednisone. I guess its all relative, but if I could get symptom resolution w/ abx alone, I'd be happy with that.

 

In your cousins case, I wonder if the diabetes or blood sugar management has an impact on immune function. He's definitely dealing with an extra variable there.

[AmySLP]

There are many medical conditions that requir long term abc...we are protecting the brain with pandas when out kids remit with abx. I have to keep Telling myself that too. It is my pediatrician who needs to remind me of this every few months, when I 'm questioning that my daughter has done this for nearly 3 yrs & wondering if we should take a break. Every time we do,her symptoms return worse than before and take longer to remit.

[KaraM]

I recommend that you see Dr. Bouboulis. He is located in Darien, CT. He also has a Stamford, CT office that he is at one day a week. He will do a complete work up on your child to determine what is going on with his immune system.

 

My dd9 has been on antibiotics for almost two years now. In addition to Zith, which she started for PANDAS treatment, she is also on Bactrim and, on the weekends, Tindamax as well. These are to treat Lyme and Bartonella, which, with the help of Dr. B., we discovered a year after the PANDAS diagnosis.

 

The biggest worry with such high levels of antibiotics is damage to the gut. That can be prevented with good probitiotics.

 

My understanding about antibiotic resistant strains of bacteria is that they are created when you under treat an infection, not over treat it. (I, however, am not a doctor or scientist, so you may want to confirm that).

 

I am posting this for my dear cousin who is struggling with a Pandas son. bws

 

Hi

My DS 17 has been diagnosed with Pandas 7 months ago by Dr. Schulman.

He has been having trouble since age 11. Has had numerous strep as a child, and a low immune system anyway. He always caught every bug around.

At age 11 we realized that this child is depressed,OCD, spaced out, not concentrating on his studies etc etc. (You all know the typical pandas symptoms....)He was then diagnosed with Asperger syndrome, and we treated accordingly with therapies for social skills and OCD. He was put onto many psychiatric drugs. Unfortunately, they did not help, and only aggravated everything. We tried herbal supplement which did do some good, but not enough. This struggle went on for about 4 years.

Unfortunately, at age 15 he was diagnosed with Type 1 diabetes. Thus started a new journey. We felt that herbs and insulin might not mix, and DS was so overwhelmed with all this that we discontinued it.

 

Last spring was the final straw. DS was not functioning at all. Could not step out of the house, crying all day, did not got to school. At this time, when I was praying to G-D to help my dear cousin's daughter was dx with Pandas and she immediately called me. I realized that this might be our problem.

 

I saw Dr. Schulman and she gave DS high dose of Azithromycin. It immediately worked and slowly all of his issues were disappearing The situation was so great, that I felt comfortable sending him to college out of town. He is doing very well there and we were all happy.

 

Here's my story:

He came home for holiday/winter break last week and one Day 1 he was wonderful. Day 2 saw a regression, and Day 3 was quite bad. Since he has been on rx for 7 months now, we went to check his liver function and strep levels. Liver function is fine but his strep levels stayed the same and AntiDnase B actually went up!

May '11 Aso 547

Dnase B 362

December'11 ASO 543

Dnase B 468

The above tests were done on day 3 after a 2 hour wait at a busy doctors office with many sick kids around.

DS knows he was not acting appropriately and immediately took advil. After a while, he came over to me and apologized. He is back in school and feeling a better now.

 

I am at loss. I do not feel comfortable keeping him on high dose abx for too much longer. It is working on the symptoms but obviously not on the blood. Could a two hour exposure cause his DNASE B to go up so high? Could it be someone in my house? What to do, we obviously cannot keep him in a bubble?

I will be calling Dr. Schulman, but I feel we need to move on. WHAT? IVIG?(I am a little scared of this.) Homeopathy? anything else? Anybody familiar with a real Pandas doctor close to NYC? Is there a way, to get all symptoms resolved?

 

He has been so sick for so long we need to get him out of this. Anybody with any information, please help.

 

Thanks.

Edited December 30, 2011 by KaraM

[thereishope]

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Edited September 30, 2019 by Vickie

[smartyjones]

I am posting this for my dear cousin who is struggling with a Pandas son. bws

 

Here's my story:

He came home for holiday/winter break last week and one Day 1 he was wonderful. Day 2 saw a regression, and Day 3 was quite bad. Thanks.

 

 

i don't have any insight into the blood levels etc. i did just want to throw out. . . i definitely believe there is/may be/can be a very real role that stress plays as a trigger. although i have not heard it lately, dr l(yale) discussed this at the OCDF convention 18 mths ago.

 

yes -- coming home is a good thing but may also involve uncertainty, expectations, change in schedule, etc. etc. not to mention general stress of college, grades, social. . .

we just expereinced what i believe to be a stress-induced exacerbation with ds7. we did see a good response to motrin therapy, which i think basically pulled him out of it.

 

i'd be curious to hear dr shulman's thoughts on the role of stress. . .

 

hopefully he is doing better through the break!

[norcalmom]

Stress can play a big role. You actually NEED to have away for the Auto-antigens to cross the BBB - they are too big to fit in "normal" healthy people. The theory is that the BBB is compromised in some way as well as high amounts of auto-antibodies.

 

In the mice studies they did - the ones where they they give genetically engineered mice strep and then transfer the antibodies and the mice "catch OCD " by anit-body transfer alone (this is VERY short hand) - they NEED to give the mice something to open the BBB - otherwise the experiment does not work. They give the mice the equivalent of epinepherine - stress hormone - which is known to open the BBB.

 

I think we all need to be looking at things that can cause problems with the BBB. Mainly, chronic infection. Low level chronic infection can do the two thing neccessary to cause pandas - it messes up you immune system - and - it opens the BBB.

 

Strep may have become chronic for you child, or he may have an underlying infection that is making it more difficult for his immune system to clear the strep. Regardless, I'd fear that more than what the anitbiotics might do. It sounds like a change is needed regardless. Maybe the herbal route would be more suited to your style, although I've read it is less effective.

 

Also, the anitbiotics have other properties - you may only be seeing the result of the fact that some are anit-inflamatory, and some have immune - modulating effects. Perhaps the anti-biotic you are using is NOT fighting the infection any more, perhaps you are seeing an improvement because of these other effects.

 

Have you any test results for monocytes, sed rate, and importantly IgG and subclasses? If your child's IgG, IgM, or any subclasses are slowly falling, then you have an indication that his immune system is failing to not just deal with this infection, but with ANY infection.

 

The anitbiotics just help your child clear the infection, their immune system still has to be fairly heathy to do that. We have to also build up their immne systems, and reduce inflammation too.

 

I'm not crazy about all the pills either. Heck, I don't even like taking or giving vitamins to my kids because I believe they best get those from their diet. But, here I am. FINALLY willing after almost 3 years of high does Azith (which worked fairly well on pandas symtoms, expecially in the beginning) to switch antibiotics and give about twice as much, and after much testing I think we have more targeted antibitoics for what my child has. And I'v also added in a bunch of "support" in terms of herbal immune boosters, anti-inflamatory supplements and vitamins, and things seem to be doing well on the new regime. DS just got the cold everyone had, and he did not exacerbate at all (well, he was a little more irritable- but that was it) . No tics, insomnia, seperationa anxiety, nightmares, looking into the sun or bedwetting. First time in years - even after the two high does IVIGs (which I would do again in a heartbeat), he would still have an exacerbation if he caught a cold - albeit much shorter ( a week or less) and less intense -(maybe 3-5 symptoms that i could see vs 7 or so in full blown exacerbation).

 

We are by no means there yet. So, this is just my opinion, based on our experience. I wish you the best with your decision, and would second the people above that you should consult with a pandas specialist to fully explore what is going on with your child's immune system.

[tpotter]

Before making any decisions, I would discuss with Dr. Schulman. She has treated many PANDAS kids and I would consider her a reliable and trustworthy doctor. I think you are in good hands and I would express your concerns and have an open conversation with her.

 

Even if you do not want your son to stay on long term antibiotics, perhaps it would be best at the moment to continue them. Perhaps not indefintely, but longer than the "normal" script given to a person that does not have PANDAS. What I am saying, is for now, concentrate on getting him back to the baseline you know, then after a comfortable buffer of having him there. then decide if you wish to discontinue antibiotics.

 

 

Dr. Schulman has treated many PANDAS, kids, and I have heard nothing but good things about her. That being said, I don't think it would hurt to get a 2nd opiinion, and as KaraM said, Dr. B, is very close to NYC, and can do a full immunological workup. Since PANS is an autoimmune disorder, it really doesn't hurt to have an immunological workup (and he takes insurance Also, many of the people on this forum do use more than one doctor to treat our kids, because there frequently is more than one thing going on. I finally felt more relaxed when we added more docs to our team (we have peds neuro, immuno, LLMD, DAN, and regular peds. Honestly, I think we needed this.