Need Advice - At a Crossroads

[Erin3]

Hi everyone,

 

I do not post very often but I read most posts and want to thank everyone for sharing their ups and downs. Has definitely given me direction since October when my son was diagnosed PANDAS. Long story short, (don't we all say that? ) my son was diagnosed by Dr. B last October. Responded well to ABX and Steroid burst in December. Was at 90% or so until April. Something happened in April, we don't know what, that triggered most symptoms to return. We switched abx twice since then with no change.

 

AT our last appointment Dr. B suggested we test with Igenix for Lyme. Haven't gone for the test yet as right now funds are tight. I believe in Lyme and really think it's quite possible for ds to have it. I was bitten numerous times as a child, my kids are exposed to ticks quite a lot as my parents live on Eastern Long Island and we are in Western Long Island. I honestly don't remember him ever being bit by a tick, but you never know. I know how controversial Lyme is but to me, it's a real thing. My younger brother was diagnosed in the mid-80's before it was widely known.

 

My dilemma is this. In speaking with my pediatrician, whom I really trust and respect and originally suggested PANDAS, suggested that maybe ds has a chemical imbalance. That I should take ds to a neuropsych. I gave her the argument that OCD/Rages/Anxiety wouldn't magically dissapear with abx if it wasn't caused by an infection. She agreed but mentioned that it could just be coincidental. Should I continue to go down the Lyme path? Should I take him off the abx he is currently on since there has been zero change since switching mid-June? Would a DAN! doctor help?

 

I would love to hear other opinions from moms (and dads) who have been there.

 

Thanks!

[MomWithOCDSon]

Hi Erin --

 

I can certainly relate to your dilemma. This is all convoluted stuff, and it is really difficult to draw ANY straight lines for some of us in terms of cause and effect, especially the further down the line you get. It's one thing when your kid had a strep infection a week ago, and then wakes up one morning with tics; you treat with antibiotics and the tics go away. Everybody agrees your kid has PANDAS, and now he's "cured."

 

But what about the next exacerbation in which you didn't detect a strep infection, or even a tic bite or a virus? Is it still PANDAS? And what if you try abx again and they don't seem to have the positive effect they once did? Does that mean it's not PANDAS?

 

Been there, done that. But, with all due respect to your doctor, I don't buy the "coincidence" theory. It's too convenient and it falls back on some aging psych positioning that basically says that OCD and anxiety can "just happen" to some people. That it has no definable origin, beyond this "chemical imbalance." Maybe your DS and mine DO have "chemical imbalances," but why? Where and when did it begin? Can it be corrected as organically as it was begun, without resorting to "heavy hitting" psych drugs that too many psychs tend to rely upon? Someone needs to be asking THOSE questions, in my opinion.

 

I'm sorry the antibiotics don't seem to be assisting anymore; perhaps you need to change it up and try a different class of abx? You definitely should follow through with the lyme testing, too, given your location and other indications. Since Igenex is so expensive, have you considered (or maybe already had) a simpler, less expensive Western Blot? I understand it may not have the sensitivity of the Igenex, but if lyme really is at issue, isn't it possible your DS would show up positive even on the WB?

 

The effectiveness of abx have waxed and waned with respect to my DS, also, over time; at first they made a remarkable impact. Now it's more subtle, but it's definitely still there; we take him off, and his behaviors ramp up again. Many doctors would say it defies logic, but experientially, it's undeniable.

 

As for the "chemical imbalance" part of the equation, I'm guessing your doc is suspecting serotonin or dopamine or both, maybe? What many of us are finding is actually further down toward the "roots" of the PANDAS behavioral tree is glutamate. You've probably seen LOTS of posts here recently along those lines. I'm almost fully convinced that my son's response to Augmentin is about its glutamate-modulating characteristics even more so than its anti-strep protection. Supplements like NAC and B12 also support glutamate modulation and may help your DS while you figure out the rest of the puzzle.

 

But, in short, I wouldn't surrender the PANDAS route. We walked the psych-only route for almost 7 years ourselves, chasing after a "regular OCD" diagnosis but not being able to get a handle on it and manage it until we found PANDAS and ongoing antibiotic therapy.

 

If your insurance covers it, I suppose you have nothing to lose in going to a neuropsych. You might even hit a rare one who gets PANDAS and/or is willing to investigate causation beyond "he's just got some imbalance." A DAN! doctor may well help you, also, but, in my experience, few of them accept insurance and they're not inexpensive.

 

Hang in there and reach out to Dr. B. for some other options in terms of abx while you look into lyme, etc.

[MichaelTampa]

I don't buy the coincidence stuff either. I do think the lyme testing is in order. Neuropsych testing, I hear can be in the $1,000+ range, but if you find a good one you might learn some things and find even more evidence of neurological issues. The neuropsych people are not all as stupid as the psychiatrists are, since it is in their nature to be testing and finding things out, whereas the psychiatrists are simply prescribers.

[cynditk]

I would do all the testing. Is DR.B suggesting IVIG at all? Why or why not? Did you try high dose prophylactic antibiotics?

 

We will be getting tested for Lyme as well soon.

 

Also what about mycoplasma?

 

There are supplements you can use to help with decreasing anxiety and rages-they won't help immediately but do help over time. GABA, melatonin, things that reduce glutamate.

 

We do everything-antibiotics, IVIG for immune deficiency, supplements, homeopathy.

[thereishope]

To rule other things out, have you tested family members for strep to make sure exposure isn't playing a role? Also, how about allergies? I ask since April is the beginnning of seasonal allergies for some people.

[3boysmom]

I totally agree with Nancy, (momwithocdson) we went the SSRI route and became worse. I would test for Lyme and other coinfections first because you could waste alot of time going down the wrong path and many PANDAS kids get worse on SSRI. If you have exaughsted all of the medical reasons and testing then you could try the SSRI's - no harm done to his health for waiting to begin SSRIs. Rule out the PANDAS / PITANDS / Lyme (medical) route first. You know you will always wonder if he has some type of untreated infection and play the "what if game".

 

This is an expensive journey...I get it (we have 3 boys that we ran all of the tests for) Prayers for your family

[LNN]

When we contacted a neuropsych, it was a $2000 deposit and she scheduled 4 months out. It was also possible the final bill would have exceeded the deposit. When we saw our first Pandas doc, we were advised to save the money. All it would do was evaluate the impact of the disease. it wouldn't tell us what was or wasn't going to be residual.

 

On the other hand, the Igenex basic panel cost us @$200 up front, but then we submitted our claim to insurance and were reimbursed about 60%. So $2,000 vs. $80.

 

You do not have to do more than the basic Igenex panel for starters. If results make you inclined to check for co-infections, you can use Specialty Labs, which accepts insurance. But it's rare to have a co-infection without also having lyme. So the basic panel is a good first, relatively affordable step.

[Erin3]

I would do all the testing. Is DR.B suggesting IVIG at all? Why or why not? Did you try high dose prophylactic antibiotics?

 

We will be getting tested for Lyme as well soon.

 

Also what about mycoplasma?

 

There are supplements you can use to help with decreasing anxiety and rages-they won't help immediately but do help over time. GABA, melatonin, things that reduce glutamate.

 

We do everything-antibiotics, IVIG for immune deficiency, supplements, homeopathy.

 

Dr. B felt that DS was a mild case of PANDAS and that since the abx had been working, he didn't feel that IVIG was warranted. We started with Augmentin, which helped a little bit, then he had a big excacerbation in December and we switched to Zithromax and a steroid burst which got him to 90-95%. In April is when things went downhill again and we tried Augmentin again with no change and now we are on Omnicef, again not seeing a change.

 

I am going to try additional supplements after reading about glutamate. I'm just so confused!

[Erin3]

Hi Erin --

 

I can certainly relate to your dilemma. This is all convoluted stuff, and it is really difficult to draw ANY straight lines for some of us in terms of cause and effect, especially the further down the line you get. It's one thing when your kid had a strep infection a week ago, and then wakes up one morning with tics; you treat with antibiotics and the tics go away. Everybody agrees your kid has PANDAS, and now he's "cured."

 

But what about the next exacerbation in which you didn't detect a strep infection, or even a tic bite or a virus? Is it still PANDAS? And what if you try abx again and they don't seem to have the positive effect they once did? Does that mean it's not PANDAS?

 

Been there, done that. But, with all due respect to your doctor, I don't buy the "coincidence" theory. It's too convenient and it falls back on some aging psych positioning that basically says that OCD and anxiety can "just happen" to some people. That it has no definable origin, beyond this "chemical imbalance." Maybe your DS and mine DO have "chemical imbalances," but why? Where and when did it begin? Can it be corrected as organically as it was begun, without resorting to "heavy hitting" psych drugs that too many psychs tend to rely upon? Someone needs to be asking THOSE questions, in my opinion.

 

I'm sorry the antibiotics don't seem to be assisting anymore; perhaps you need to change it up and try a different class of abx? You definitely should follow through with the lyme testing, too, given your location and other indications. Since Igenex is so expensive, have you considered (or maybe already had) a simpler, less expensive Western Blot? I understand it may not have the sensitivity of the Igenex, but if lyme really is at issue, isn't it possible your DS would show up positive even on the WB?

 

The effectiveness of abx have waxed and waned with respect to my DS, also, over time; at first they made a remarkable impact. Now it's more subtle, but it's definitely still there; we take him off, and his behaviors ramp up again. Many doctors would say it defies logic, but experientially, it's undeniable.

 

As for the "chemical imbalance" part of the equation, I'm guessing your doc is suspecting serotonin or dopamine or both, maybe? What many of us are finding is actually further down toward the "roots" of the PANDAS behavioral tree is glutamate. You've probably seen LOTS of posts here recently along those lines. I'm almost fully convinced that my son's response to Augmentin is about its glutamate-modulating characteristics even more so than its anti-strep protection. Supplements like NAC and B12 also support glutamate modulation and may help your DS while you figure out the rest of the puzzle.

 

But, in short, I wouldn't surrender the PANDAS route. We walked the psych-only route for almost 7 years ourselves, chasing after a "regular OCD" diagnosis but not being able to get a handle on it and manage it until we found PANDAS and ongoing antibiotic therapy.

 

If your insurance covers it, I suppose you have nothing to lose in going to a neuropsych. You might even hit a rare one who gets PANDAS and/or is willing to investigate causation beyond "he's just got some imbalance." A DAN! doctor may well help you, also, but, in my experience, few of them accept insurance and they're not inexpensive.

 

Hang in there and reach out to Dr. B. for some other options in terms of abx while you look into lyme, etc.

 

Nancy - thanks so much for your reply. It makes me feel like a sane person when I hear other moms (and dads!) going through the same thing.

 

We did test for mycoplasma and both times he was negative. He does not show any titers for S. Pneumoniae either. We also did the Lyme WB through Quest and the only thing that was reactive IGG was band 41, which I know half the population will test positive for that band.

 

I did find a DAN! that accepts my insurance through their allergy part of their practice. I may just go and get his opinion. I find myself hesitant to even say the word PANDAS to some doctors after seeing a really nasty neurologist (whom I paid out of pocket) for earlier in the year!

[Erin3]

Just wanted to say thanks for all of the support!

[Erin3]

To rule other things out, have you tested family members for strep to make sure exposure isn't playing a role? Also, how about allergies? I ask since April is the beginnning of seasonal allergies for some people.

 

Hi Vickie - we haven't tested everyone yet. Dr. B asked about this last appointment but didn't recommend testing everyone. DS has had chronic sinus infections up until we started the abx, but tested negative for the allergy panel Dr. B ran. I'm thinking of doing more allergy testing with him.

[bws]

We did the neuropsych route too and paid close to $3000. Add the car rentals and babysitting and it is over that number. And we were disappointed. I don't buy the chemical imbalance either. Pandas just explained everything, and for us abx worked.

[kimballot]

 

Hi Vickie - we haven't tested everyone yet. Dr. B asked about this last appointment but didn't recommend testing everyone. DS has had chronic sinus infections up until we started the abx, but tested negative for the allergy panel Dr. B ran. I'm thinking of doing more allergy testing with him.

 

My son has a lifelong history of PANDAS with chronic sinusitis. Have you been to a good ENT? We also see Dr. B and he is an excellent member of the sinusitis team for us!

 

We spent 7 years wondering why my son had uncontrollable behavior with every sinus flare up - only to be told by MULTIPLE doctors that it was coincidence. Then we spent 6 years making 3 visits to a local neurologist who was supposed to know about PANDAS only to be told time and again that the sudden-onset of OCD and tics with respiratory infections or sinus flare ups was coincidence, and my son needed CBT (CBT is great - but he also needed to get rid of the infections). We finally ended up with Dr. B who found a huge cyst in my son's sinuses that had been there for a year or more.... and all the CBT in the world was not going to remove that... That was last year and we have spent the last 12 months trying to undo al the damage that this chronic infection caused to his immune system.

 

Regarding lyme - you might want to see if there is a lyme literate doctor in your area who takes your insurance or who will give you the paperwork to send to insurance. LLMDs base the lyme diagnosis on the clinical presentation - not just the test results, as the tests are limited. My son has not tested positive for lyme per se, but has done VERY WELL on the antibiotics and supplements the lyme doctor has recommended.... we are still trying to figure out if there is some sort of coinfection there that the tests are not picking up.

 

If you haven't read it yet - the PANDAS article by Dr. Murphy and colleagues last year is an excellent summary and clearly identifies the link between sinus infection and other illnesses and PANDAS exacerbations. http://www.njcts.org/docs/ImmunobiologyofTDandPANDAS.pdf

 

Best wishes as you make your way through the PANDAS trails!

[airial95]

I know that psychiatrisits are usually the ones recommending SSRI's, etc... which don't work on PANDAS kids. However, remember that Dr. Murphy is a neuropsych - the same one who wrote the article mentioned above. She's one of the PANDAS experts and sees our son.

 

Just like some of us have had terrible experieinces with neurologists who aren't believers, some of the PANDAS experts (Dr. L. I believe) are neurologists.

 

I've even heard of some psychiatrisits being the ones who have sent parents down the PANDAS path.

 

Before you dismiss an entire dicipline of medicine as being not worth the time or $$$, I would interview the doctor, find out what they know and what their opinions on PANDAS are. That can be just as important as what type of medicine they practice.