Questions for doctor

[purple66p]

I'm new to the idea of my son having PANDAS. He has been being treated for bipolar and OCD for 6 years. We have recently changed from a psychiatrist to a biomedical doctor because he wasn't really getting any better with psyc drugs. The doc is at Neurosensory Center of Austin and is the one who proposed PANDAS as a possibility. We saw him ~6 weeks ago. A rundown:

1. He did the strep titers and they were higher than the upper range, but not by much. My son has never had a strep infection that we know of. However, he has had problems with one ear for years that his pediatrician never could figure out how to get rid of--blamed it on allergies.

2. He started antibiotics 4 weeks ago, a type of Tetracycline.

3. He also started "methylation support" supplements. (Methyl Folate, Methyl B12, B6, Vit. D) He seemed to start sleeping better immediately after starting these.

4. No great changes in behavior (still yelling, temper tantrums, mostly in the evening), tics, or obsessions.

 

Questions I have for the doc:

1. Why not the standard antibiotics for PANDAS?

2. I was a strep carrier as a kid. Should I and the rest of the family be tested? (Side note: I had step throat not long before my son's symptoms started.)

3. Should he start prophylactic antibiotics?

4. Can we try a steroid burst? (As I understand it, this should be 5 days + taper.)

 

Are there other questions or ideas that I should propose? Thanks for sharing your experience.

CJ

[peglem]

I'm new to the idea of my son having PANDAS. He has been being treated for bipolar and OCD for 6 years. We have recently changed from a psychiatrist to a biomedical doctor because he wasn't really getting any better with psyc drugs. The doc is at Neurosensory Center of Austin and is the one who proposed PANDAS as a possibility. We saw him ~6 weeks ago. A rundown:

1. He did the strep titers and they were higher than the upper range, but not by much. My son has never had a strep infection that we know of. However, he has had problems with one ear for years that his pediatrician never could figure out how to get rid of--blamed it on allergies.

2. He started antibiotics 4 weeks ago, a type of Tetracycline.

3. He also started "methylation support" supplements. (Methyl Folate, Methyl B12, B6, Vit. D) He seemed to start sleeping better immediately after starting these.

4. No great changes in behavior (still yelling, temper tantrums, mostly in the evening), tics, or obsessions.

 

Questions I have for the doc:

1. Why not the standard antibiotics for PANDAS?

2. I was a strep carrier as a kid. Should I and the rest of the family be tested? (Side note: I had step throat not long before my son's symptoms started.)

3. Should he start prophylactic antibiotics?

4. Can we try a steroid burst? (As I understand it, this should be 5 days + taper.)

 

Are there other questions or ideas that I should propose? Thanks for sharing your experience.

CJ

On #4, I believe a 5 day steroid treatment does not require tapering off. The taper is done w/ the longer treatment (over a 30 day period?)

 

I'm interested, too, in this doctor's use of tetracycline as the first treatment. Keep us posted, please.

[thereishope]

Ear infections can be caused by strep or perhaps he had a hidden sinus infection that cased problems in his ears. Sinus infections canbe caused by strep too. Even if the doctor says no to other family members being tested, do so anyway. PANDAS kids can react to just being exposed to strep and you want to try to prevent reinfection if you can. And a strep carrier can infect someone (some doctors will say they cannot). How is your son and the tetracycline? I had a reaction to it when I was teen. Most people can take it no problem, but do watch for side effects.If you don't see any improvemnt on that antibiotic, I'd try to get it switched. A lot of people have had success with Augmentin and Zithromax. Some have also had the most success with Omnicef, Keflex. Some do improve on basic amox and pen, but not the majority. You can also start him on a probiotic to be taken spaced out from the antibiotic and Omega 3's.

 

Is he currently on psych meds? Some PANDAS kids do not react well to them and they should be used with caution. If your son does in fact have allergies, keep them in check. Allergies can worsen PANDAS symptoms as well. What allergy med does he take?

Edited August 3, 2010 by Vickie

[Tenacity]

Hello, purple66p (a.k.a. CJ)!

 

I've had my eye out for folks like you! My son, who was suddenly stricken by a bunch of horrible symptoms just shy of his eighth birthday, was, like yours, diagnosed with bipolar disorder, and treated with Lithium.

 

I hope to learn more about your story down the line -- and perhaps to tell you more about ours. Of course, no two cases are identical.

 

But I do have a little advice now, for what it might be worth. Your new doctor is quite right to check the anti-strep titers and observe how they change over time. However, be aware that this, in and of itself, cannot rule PANDAS/PITAND in or out. And it's much more likely to serve as a helpful diagnostic clue when the disease process has just begun. You really need an expert to look at the whole -- and in your case, very long -- clinical story. It's possible that strep precipitated your son's illness, but that after so many years, the out-of-whack anti-neuronal antibodies have taken on a life of their own, flaring up in response to things other than strep. It's also possible that a germ other than strep started the whole autoimmune disease process in the first place. Thorough exploration and evaluation of the presence and absence of various symptoms, and the overall course of illness are currently more essential to diagnosis of this disease category than any blood tests.

 

Lithium can be a life-saver, if what you have is really bipolar disorder. But it can do harm, if what you have is really a post-infectious neuropsychatric autoimmune disease. Not only is it of no help in restoring health to the immune/autoimmune system, but it can be toxic to neurons, it compromises kidney function, and has been known, on occasion, to trigger autoimmune disease. Some of its side effects even resemble PANDAS/PITAND symptoms and may worsen or mask them -- e.g. clumsiness, and urinary frequency. Ironically, when my son finally got his PANDAS/PITAND diagnosis and we abruptly took him off the Lithium, some of his worst psychiatric symptoms actually subsided....

 

Dr. S. sounds great -- but I recommend working with him to connect with one of the PANDAS/PITAND experts, so you can be confident in your process of differential diagnosis.

 

Good Luck!

 

Tenacity

Edited August 4, 2010 by Tenacity

[purple66p]

Hi everyone, and thanks for the responses. Here's an update:

We saw the partner of the previous doctor, and this guy seems to be fairly aggressive.

1. New antibiotic, amoxicillin, 30 days, 500 mg 2x/day

2. Add antivirals, Acyclovir now for 4 weeks; Amantadine starting in 3 weeks for 4 additional weeks (one is for DNA viruses and one is for RNA viruses)

3. Add hydrocortisone, 10 mg in the am, 3 weeks

4. Continue with B-12, methyl folate, B6, D. Add more vitamin D (5000 iu)(His D3 levels were EXTREMELY low despite playing outdoors all the time!)

5. No change is psyc meds (Abilify and Lithium) I don't think he had an adverse reaction to these when we started them years ago, but any good effects were only temporary. I think it might be prudent to stay on them for a while longer and doc didn't mention changing at this point. He did mention that lithium is an anti-viral. We have lowered dose on both of these over the last 4 months. He had a really, really bad reaction to eliminating Abilify a few years ago.

6. No new testing at this time--we'll do that again in 2 months.

7. Oxytocin for mood regulation. Has anyone tried this? I figure it's harmless and worth a try. I'll let ya'll know how it works.

8. Diflucan for yeast after antibiotics are finished. I also have him eating a couple of probiotic yogurts a day, and probiotic capsules when I can talk him into it. Kid is rattling with all the pills!

 

I also have an appt with a neurologist in mid-Oct. It took me 6 months to get an appointment! My understanding is that this guy is open to PANDAS. Hopefully he won't be mad about me going ahead and starting treatment with another doctor.

 

Whew! My husband and daughter had all kinds of questions for me AFTER I got home. Of course, I hadn't asked them all...they should have gotten them to me earlier or come along. My daughter especially wanted to know exactly when he would be better (as if the doc could predict that at this point.) She's living at home and starting at Univ. of Texas in the fall and wants some peace and quiet to study!

[EAMom]

Hopefully this doc will be willing to try high dose Augmentin XR or Azithromycin if the Amoxcillin doesn't help. Amoxcillin didn't do much for us.

 

I would also rec. getting family members (at least) throat cultured. You don't need the specialist to do this. Just have your reg. doc do it. (Even if you need to "fudge" a little and say strep has been going around and you have a sore throat etc. etc.)

Edited August 7, 2010 by EAMom

[EAMom]

PS. here is an article on Amoxicillin failure in strep throat. http://www.entrepreneur.com/tradejournals/article/169459644.html

[purple66p]

Thanks for the article! I'm at a loss & don't know what I should do...Do I keep trying the amoxicilliln for 30 days, wait another 30 days for an appointment, then push for the azith?? I can't say if we've had any changes in the last week--maybe fewer temper explosions and slightly reduced tics but that might be the hydrocortisone or oxytocin. We started so may new things at once!

I think I was overly optimistic about recovery once the problem is identified! From reading all these post, it looks like it will be a long road, but I do feel much more hopeful than when we were told that he has bipolar disorder and would have to take psyc meds for the rest of his life.