Please help a newbie?

[KaraD]

Hello all,

 

My psych-doc suspected PANDAS in my ds(4). After reading, it seems that he fits the profile. The doc ordered strep titres that came back positive last Thursday (but just barely ASO 200 and DnaseB 1:60 with reference ranges of normal as <200 and <1:60 respectively). As far as I knew, ds(4) had never had a strep infection. Although my older ds(12) does get one about twice a year.

 

On the Dnase, what is the ratio? I called LabCorp but they said they didn't know and could only transfer a doctor to the lab. . .

 

I have received the kit to do the Cunningham test.

 

I was looking at trying a 5 day steroid blast to confirm dx, but then I read that steroids shut down the immune system. . .so should I do abx first?

 

Does PANDAS cause pragmatic and expressive language issues? Is there any correlation with metal toxicity?

 

How often should we do titres?

 

If the lyme titres were negative, are we good, or are they like the PANDAS titres and a rule-in, not a rule-out?

 

Is "potty talk" a PANDAS symptom?

 

Do we "clear sibs" by swabs and then abx as well, or run titres on them, too?

 

Ds(4) has dx of PDD-NOS, ADHD, and OCD, but dr says that it may all be PANDAS and his food intolerances. Any thoughts? We got dx of gluten and casein intolerance in October, and removed egg and baker's yeast in November from IgG food panel results. Seems plausible that the reaction to gluten opened his BBB and created the perfect opportunity for PANDAS. . .

 

Dd(9) recently tested reactive to gluten and has the most OCD traits that I recognize. . .how common is it common for sibs to have PANDAS? DD(9) looks pretty NT, though. Thoughts? Run the titres and Cunningham on her, too?

 

Finally, is there anyway I can link this to my email to receive responses there?

 

Thanks for your patience.

 

Kara

[airial95]

Welcome - we're sorry you had to find us here, but this is a great forum for advice and input.

 

First off- if you click "Watch this topic" at the top of the forum, anytime someone posts to this thread, it will notify you via the email address you used to register for the forum.

 

I'm not an expert on all of the various blood numbers, as my son (3 1/2) has always had annoyingly normal blood results and was dx with just clinical presentation. We've run blood on my son 2x in a year, including once after a positive swab and titres were still normal, so I'll have to refer you to one of the other parents on here for advice on that, and Lyme too since we're just classic PANDAS.

 

As for language issues and potty talk, yes, those are absolutely symptoms of PANDAS. Many parents report that their children also regress verbally to "baby talk", etc. During my son's worst exacerbation, he became practically non-verbal. The potty talk we still haven't conquered yet...but we're working on it!!

 

You son may have had a strep infection, but never presented with classic symptoms. My son's PANDAS was triggered by an impetigo infection (which we saw), but the other 3 times he has gotten strep since, he did not even spike a fever, his only symptoms were behavior related, and since we knew what we were dealing with, we were able to get him in and get swabbed.

 

I would absolutely have not only your other children, but the entire family, tested for strep. If the rabid swab comes back negative, ask for the 72-hour culture to be sure. If you suspect that someone in the family may be a carrier, then you may want to run titres, but there are varying opinions on if that's necessary or not. It also depends on how critical your son is at the moment.

 

You don't mention how your son is doing now? Is he in crisis or "manageable" (a relative term I know). That may help you decide if a steroid burst is the direction you want to go or not. We have not done steroids as of yet - we started with abx, and found significant improvement within 10 days. We're at about 80% back to normal right now (although he just had a strep infection about a month ago), and have only done straight abx.

 

One thing to note, it may take a trial of several different abx to find the right fit, not all children respond to abx the same way.

 

Be thankful that you have a doctor who is familiar with PANDAS and willing to try treatment, that can be a long journey for many parents. My son was dx at around 26 months, and his symptoms at the time matched the dx that your son was originally given (with the addition of ODD), however, my dr suggested treatment for PANDAS first, since he had an impetigo infection about 6 months prior, and behavior challenges started shortly thereafter (which we thought were the "terrible twos").

 

It sounds like you're on the right track, hope some of this information helps!!

[MichaelTampa]

I'll answer just the lyme part of your question. A negative lyme titers test will not rule out lyme by any stretch. The standard testing is very unreliable. There are better tests, which will be less unreliable but still unreliable.

 

For more information on lyme and ideas regarding how to pursue/consider whether lyme is an issue for your son, probably better to post a question on the lyme forum of this group of forums.

 

Michael

[KaraD]

Thank Airial and Michael.

 

He is "manageable" at the moment. He is very emotionally sensitive, has trouble with transitions and "no," and can't follow instructions very well. At the moment, his mouth is pretty bad, but he is functioning. I'm noticing more expressive language issues and some regression over the past few weeks. My friends and his therapists have commented on it as well. His modulation is almost as bad as it was when we started dietary intervention, and it had improved a lot. He even asked me, "Mom, why am I breaking everything again?"

 

Is lyme infection concurrent enough with PANDAS to warrant investigation of both, or since I'm pretty convinced he looks like PANDAS should I just focus there?

 

We were planning a provoked chelation challenge (DMSP) for Wednesday, but now I'm unsure if I should put it off or proceed. . .

 

Thanks again for your time,

 

Kara

[dcmom]

Kara-

 

I am not sure what a provoked chelation challenge is... but I might put it off.

 

I have two pandas daughters diagnosed two years ago. It is VERY common for families to have more than one child with pandas. I do not have much time right now, but I will give you my advice- take what you want...

 

I think it is imperative that you go to a pandas doc. There are a handful in the country, if you let us know where you are we can suggest. That being said, they all have different protocols, so you need take charge.

 

You should read all of the studies and links at the top of the forum. One of the best is the most recent "A way forward" by Leckman, Murphy and others.

 

Definitely work with a doctor to rule out any current infections: strep, mycoplasma, sinus, lyme, etc.

 

That being said, pandas is thought to be an autoimmune disorder, so there doesn't need to be infection once it is triggered for symptoms to continue.

 

In my experience, pandas kids are very sensitive, especially when symptomatic (even at a low level), that is why I have a concern about the chelation challenge.

 

My suggestion (of course I am not a doc, and no replacement for a good pandas doc), would be to do a month of daily treatment dose antibiotic (augmentin or zithromax), while you are waiting on test results. As long as the tests look reasonably normal, if you don't see enough improvement with antibiotics, I would add a one month steroid taper (while continuing on antibiotics). Many times, healing comes slowly, and a bit sawtooth or bumpy- so it is important to look at weekly trends, rather than days.

 

All of the symptoms you described can be from pandas. It is great that you have your son in therapy, however, in my experience, medical intervention can make the therapy MUCH easier.

[KaraD]

Thank you, DCMom!

 

I am in Arkansas. I would love some references for who to see. I am not opposed to travel if necessary.

 

My son is in OT for SID and Speech for feeding and Pragmatics. Many of his behaviors are making more sense now in the context of PANDAS. I don't think any of my docs have much experience in the infectious medicine realm. I will have to work on that.

 

I think you may have a point about the chelation challenge. It is an IV infusion of DMSP and then a urine catch to check for excretion of heavy metals. There are some side effects, though. That's why I wondered if there was a correlation between heavy metals and PANDAS or not?

 

Thanks again,

 

Kara

[LNN]

I think you may have a point about the chelation challenge. It is an IV infusion of DMSP and then a urine catch to check for excretion of heavy metals. There are some side effects, though. That's why I wondered if there was a correlation between heavy metals and PANDAS or not?

 

Thanks again,

 

Kara

Kara,

It sounds like you do a lot of homework and are very proactive in chasing things down! I think with your borderline strep titers and list of symptoms, it makes sense to consider Pandas. But you may want to re-check titers periodically (maybe in two months, then again 4 months later?) just to establish a history and baseline. It's the movement of the numbers, more than the numeric value, that are most telling.

 

My only advice would be to keep an open mind. I found out the hard way that Pandas symptoms and "lyme" symptoms can be very similar. (lyme meaning a variety of tick-borne illnesses). This is a polarizing subject and like Michael, I'd suggest you post a similar list of questions on the lyme forum. I'm not aware of heavy metals being associated with Pandas, but you come across the topic fairly often in the lyme literature as well as autism literature.

 

Celiacs and yeast can also contribute to many behaviors you'll see listed for Pandas and lyme. So there's a slew of things to sift thru. There may be mutliple issues at play. But you'll find good info on this forum in terms of tests and also good advice on coping with behaviors, such as CBT and ERP therapies.

 

The one thing I'm not clear on from your posts - is your son currently on antibiotics, and did you see any change if/when he was on them?

[mama2alex]

Hi Kara,

 

Welcome to the forum! It does sounds like your son may have infection-triggered OCD and other issues. Now the hard part is determining what those infections are and whether he is still infected. I would recommend seeing a Lyme-literate doctor to rule out Lyme and other tick-borne infections. Even if you don't remember a tick bite, it could still be an issue. And you can't rule it out with the current tests, you need an expert to make a clinical diagnosis. LLMD's are also familiar with strep and other infections that can cause behavioral/psychological symptoms.

 

We went down the PANDAS/strep route for over a year before seeing an LLMD. My son tested positive for Bartonella, an infection that can cause many of the same neuro-psychiatric symptoms as an autoimmune reaction to strep. To further complicate things, he also has PANDAS - he always worsens with strep and other infections. He also has chronic viruses and possibly heavy metals that didn't come out with chelation.

 

My point is, all these things can go together, so you need to look at all of them. Each infection can disregulate the immune symptoms, making it more susceptible to all the others.

 

I think its better to wait until you know if there are current infections before trying steroids. These suppress the immune system, so aren't the best thing for a kid whose trying to battle a chronic infection.

 

I'm a little concerned that your doctor was planning to do IV-DMPS on a 4 year old. I had mercury poisoning and was diagnosed when my son was 3. I did IV-DMPS, but although we suspected he had heavy metals, they wouldn't do it on him, even to test. They did transdermal DMPS, oral DMSA and the Yasko protocol, which is all supplements and actually was the most effective.

 

Good luck moving forward! It sounds like you are very on top of things already!!

[KaraD]

Hi LLM and Mama2Alex,

 

No, ds has never been on antibiotics. In his life. Period. I have a feeling that, that is about to change for him ) We just got the titres back last Thursday, so I'm only working on my fourth day of research.

 

I have NO IDEA about all these other infections yet. If someone wants to point me in the right direction for which tests, it would be most helpful.

 

We live with ticks all the time ) We have horses and dogs. The free range chickens eat some of the ticks, but every year we get plenty. Lyme is definitely in the range of possibility with us. Regular Lyme titres were negative. What else should I run? How did you find out your son had Bartonella? Stool analysis?

 

I put the chelation challenge off to talk about PANDAS. I asked them to run a Porphyrins Urine Heavy Metals test instead, and they were fine with it. We are already gluten free (and casein and egg and baker's yeast by IgG) and we've been doing the yeast protocol; so I feel like I have a pretty good handle on behaviors from yeast and gluten infractions. We're also running and OAT tomorrow. PANDAS seems to explain the rest (unless it's some other bug that looks like PANDAS). PANDAS also makes sense because I know my older son is very strep prone.

 

So where do I find a Lyme literate doctor? Do I need to find an infectious disease person?

 

I looked at his throat today, and I bet his infection is still current. He has striations and puss eruptions, but says his throat doesn't hurt. He and my older son both have monster tonsils. He has real issues with hyposensitivity to pain and also with reflux. I think his throat is in chronic pain so he doesn't even recognize it anymore. After we put him on Nexium for the reflux, he was able to articulate to me that it hurts every time he swallows, but the Nexium helped a lot with that.

 

Right now my plan is:

1) Tomorrow I have a phone consult with Scott Smith at Dr. Neubrander's office.

2) I also have throat cultures scheduled for the whole family, and I ordered his with sensitivities.

3) On Wednesday we draw blood for the Cunningham and run the two unrelated (if there is such a thing ) urine tests. I hope the DAN! might have some idea how to work up tests for other bacterial sensitivities.

4) Next I will probably start a course of antibiotics (whatever the sensitivity comes up with).

5) Then maybe a steroid burst to confirm reaction? I wanted to start with the burst, but I figure I should treat an active infection first.

6) and at some point Methyl b-12 shots to clean out the dopamine receptors in the basalganglia

 

What am I missing?

 

Thanks again so much for your input.

 

Kara

[KaraD]

HA! This smiley face things works differently than my computer. Sorry for the weird interjections!

 

Kara