Doctor not willing to do titers

[Wickedmaineah]

We had to take our son back into the doctor this afternoon due to the sudden increase in symptoms. The obsessions, fears, etc are frustrating but the most frustrating is seeing the dramatic decrease in his ability to draw. He drew beautiful pictures just a week ago, very dramatic real life drawings. Now he is drawing like a 2 year old. (he is 10). Should the doctor 3 different drawings so that they could see the difference. They were also amazed at how bad the most recent one was. Also his joy and strong desire to draw is gone. Doctor did a rapid strep, came back negative and said there is nothing else they can do. I asked for titers to be done but they said they were not needed because he didnt have strep. Has anyone else had issues with the doctor's like this? I dont know how to get them to look at the numbers.

[lfran]

Can you shop around for another MD who would order it? Or...if you get a lab form from labcorp or quest and just ask your doctor to sign it? Or...there are websites where you can order tests through them and have their doctor sign it -- privatemdlabs.com is one, I know there are others. They charge abt $200 for DNASE and $45 for ASO --- no MD needed. Pricey, but at least you have your info if you want it. Or inundate your doc with with papers, Saving Sammy, etc.

 

We had to take our son back into the doctor this afternoon due to the sudden increase in symptoms. The obsessions, fears, etc are frustrating but the most frustrating is seeing the dramatic decrease in his ability to draw. He drew beautiful pictures just a week ago, very dramatic real life drawings. Now he is drawing like a 2 year old. (he is 10). Should the doctor 3 different

drawings so that they could see the difference. They were also amazed at how bad the most recent one was. Also his joy and strong desire to draw is gone. Doctor did a rapid strep, came back negative and said there is nothing else they can do. I asked for titers to be done but they said they were not needed because he didnt have strep. Has anyone else had issues with the doctor's like this? I dont know how to get them to look at the numbers.

[kimballot]

I am sad to hear this but I am not going to mince words here - you really need to get your child to a doctor who understands PANDAS.

 

I was given the same information about strep throat and ignored my son's PANDAS for six years. Last year he was miserable and his only symptoms were PANDAS symptoms (poor concentration and attention in school, joint pain, fatigue, OCD, mild tics). The local docs said "no strep throat = no PANDAS - put him on an SSRI". I knew it was PANDAS and got him to a PANDAS doc who did the labs and found lots of signs of infection and he now had immune deficiencies that he did not have 4 years prior. The doc then did a sinus CT scan (my son had a history of severe chronic sinusitis) and found a cyst that was so large it was eroding his sinus bone. They estimated it had been there for a year or more. I was sick that I did not find this sooner. He had surgery for the cyst, but his immune system is still recovering from that PANDAS attack.

 

If you are seeing symptoms, you need to find someone to do the blood work. It does not have to be strep throat. ANY infection can trigger this. Look for signs of strep, mycoplasma, and lyme in the blood and look for signs of sinus infections and even allergies.

 

This article is relatively recent and has authors who have been both "for" and "against" PANDAS in the past. They came together and agreed on the information in here - including the fact that strep throat is only one trigger of PANDAS/PITAND. http://www.partnerstx.org/Resources/TS/ImmunobiologyofTDandPANDAS.pdf

 

Best wishes to you.

Edited June 13, 2011 by kimballot

[nicklemama]

Hate to be an echo, but you are going to have to find a PANDAS doctor. If I had waited for my DS to have a positive rapid test, I'd still be waiting and I can't even imagine how much worse he'd be than he was nearly 2yrs ago when all this started. He was horribly bad then.

[tpotter]

Find another doctor. We changed 3 times until we finally found someone who was open.

 

Then, about 3 weeks ago, we partially changed again (we'll keep the one for regular stuff, because he's closer to our house, but anything PANDAS/Lyme related, we are using a DAN doctor who just happens to be a family practice physician, because the closer one is just not comfortable treating PANDAS/Lyme

 

I told the doctor in the ER 2 weeks ago, who insisted my DS did not have strep, because his rapid strep was negative, that there are plenty of other places in the body where strep can be hiding (like virutally everywhere)...not just the throat, and that the rapid strep ONLY tests the throat. She didn't know what to respond (I got my titers.)

 

You have to be very very persistent, or change doctors.

[Tamistwins]

We had to take our son back into the doctor this afternoon due to the sudden increase in symptoms. The obsessions, fears, etc are frustrating but the most frustrating is seeing the dramatic decrease in his ability to draw. He drew beautiful pictures just a week ago, very dramatic real life drawings. Now he is drawing like a 2 year old. (he is 10). Should the doctor 3 different drawings so that they could see the difference. They were also amazed at how bad the most recent one was. Also his joy and strong desire to draw is gone. Doctor did a rapid strep, came back negative and said there is nothing else they can do. I asked for titers to be done but they said they were not needed because he didnt have strep. Has anyone else had issues with the doctor's like this? I dont know how to get them to look at the numbers.

'Hi,

Where do you live? Regular doctors don't believe the titers will show evidence of anything except a past infection. My son had elevated mycoplasma titers and an infectious doctor said it means nothing, he looks fine Oh really!!!!! Anyway is it possible for you to get a script for blood draw from one of the PANDAS specialists. They could do a phone consult if too far. I'm sure people on the board could offer suggestions to you through private P.m. Your doctor isn't willing to do a trial of antibiotics to see if symptoms improve? I know how closed minded so many are. I'm sorry I know this must be stressful and frustrating for you. Fortunately you have found this forum and there are many caring people that you can confide in and who will not dismiss your fears.

 

Good luck!

[problemsolver]

I'm glad to see all the replies, but I have to chime in as a dad new to this group:

Many of you have been on this list a while. All of us newbies don't know all of this stuff.

We can learn it, but it'll take time that would be better spent helping our kids.

To that end, if any of you have a complete list of potential tests to start with,

(and reason for doing each along with it would be very helpful, too), that would help

get things going. Is there one saved anywhere on this website?

For me, I have a prescription to get a CBC, CMP, ASO and AntiDNAse Ab (which I understand should read

AntiDNAse B so that I get a strep test instead of a lupus test).

It sounds like this is just the tip of the iceberg.

What other tests are mission critical that I can ask my doctor to write a scrip for?

What I know is that my son also showed 1:320 for HHV-6. I don't know how high this is,

as I haven't been able to learn that from anyone. I'm sure someone out there knows this already,

but I'm still hunting for the answer, and although lots of people read the post, no one

replies. It's frustrating.

Another thing...please don't presume we all know how to use the Messenger and the other stuff.

For example, if I haven't replied to your message to me, I may not have found it yet.

 

Thanks for listening

Dave

[Wickedmaineah]

I am calling the doctor today and demanding an order for tests. If they refuse, I will also be calling the PANDAS doctor.

I agree a list of helpful tests would be good for us newbie's to have as this all untraveled roads for us.

Someone mentioned joint pain as a symptom. My son has had issues with joint pain for 5 years. They put him through every sort of scan and test thinking JRI, but no definate diagnosis. I was shocked to see that it could be a symptom of PANDAS.

Our youngest daughter is very sick with a cold, cough, congestion. Could PANDAS react to another virus? I am mostly seeing strep virus.

Thanks,

Christina

[kimballot]

Another thing...please don't presume we all know how to use the Messenger and the other stuff.

For example, if I haven't replied to your message to me, I may not have found it yet.

 

Thanks for listening

Dave

 

Dave - Well, now that explains why you are asking for a list of tests and did not respond the PM I sent you! I sent you a list of tests a little while back. Go to the upper right corner of your screen and click on the arrow next to your screen name- then click on messages.

 

Whenever you have new messages they will also show up in the little number next to your name, and you can click on that. If the number says 0 then you have no new messages.

 

Let me know if you have questions about what each test is for.

 

Welcome!

[LNN]

Someone mentioned joint pain as a symptom. My son has had issues with joint pain for 5 years. They put him through every sort of scan and test thinking JRI, but no definate diagnosis. I was shocked to see that it could be a symptom of PANDAS.

Our youngest daughter is very sick with a cold, cough, congestion. Could PANDAS react to another virus? I am mostly seeing strep virus.

Thanks,

Christina

 

Joint pain is also a big symptom of lyme. My son has both lyme/bartonella and Pandas and there's a lot of overlap in symptoms. As you go down this path, it's important to test for a number of infectious triggers, not just strep. It can get complicated.

 

As for your daughter, viruses can also trigger PITANDS and autoimmune responses, tho bacterial infections are more commonly discussed. Antibiotics won't do anything for a viral infection. Strep is a bacteria, as are lyme and mycoplasma.

[tpotter]

Ditto to LLM.

 

I only ended up going down the Lyme path, because we were struggling to get treatment for DS's from the PANDAS docs she already had (mostly due to fighting insurance to pay.) The one thing I could control was going ahead and getting tested for Lyme, as several people on the forum had started to warn about. Well, lo and behold, DH came back 100% positive on the Quest WB (and that certainly matched his symptoms of terrible non-responsive RA that came on suddenly.) Everyone else came back "almost positive" except my 15 yo son who only had one band positive (I now know there are many reasons for that.) I had also been battling Mycopl. pneum for several years (unknown until that time), which can be a co-infection of Lyme.

 

I went ahead and got the appt with a LLMD, and we all started tx. We finally got approval for IVIG, so I started that, too, figuring that they also have PANDAS, and we need to treat the immunol. part. I'm not at all sorry we have done this, because I think it has taken the edge off things, and I have seen excellent results.

 

BUT, our LLMD kept saying he was certain my DS15 had at least Bartonella (a co-infection of Lyme), because of his unique stretch marks, but they weren' responding to anything.

 

Fast forward to about 1 month ago. DS15 started having terrible symptoms related to too many oral abx (follow my posts from about 1 month ago on Lyme.)

 

I fought for, and then got him started on IV abx. The stretch marks have significantly faded, AND erlichiosis actually came back positive on Igenex (we finally did it). Another forum member told me that his symptoms of elevateed liver enzymes, enlarged spleen and low WBC are symptoms of babeosis (another co-infection). Sure enough, when I looked it up, those specific symptoms are listed (very unique symptoms.)

 

I spoke with the LLMD, and he totally agreed (we're continuing the IV abx, but treating for all the above.)

 

I don't know if it was originally Lyme, strep that was triggered by an already weak immune system (both my kids have had repeated bouts over the years with strep, and my DS15 started with his symtpoms immediately following a sinus infection in the ethmoid sinuses or what triggered what. There's no question in my mind now, though, that we are dealing with Lyme in addition to PANDAS.

 

I also know that I had strep constantly as a child, and I remember pulling a tick off my head when I was about 15 that was fully engorged, and had been there for at least 2 weeks.

 

What started what, I don't know. I do know it doesn't matter. I think it's all related, and I would highly recommend testing for Lyme, and keep in mind that many times Lyme does NOT show up positive (even on Igenex), but that you have to look at the symptoms, and find a good LLMD who really knows all this stuff. If the child has bartonella, it can cause other co-infections to come back negative until the bartonella is treated.

 

BTW, another forum member suggested I test for C-difficil, H-pylori and several other things, and my dS18 just came back positive for c-difficil.

 

I would urge the newbies to get on this very fast, and look at everything, and be open to everything. As an immunological disorder, these kids are open to getting everything. It's harder to get it all under control as they are older, as it all starts snowballing on itself.

[SSS]

I'm glad to see all the replies, but I have to chime in as a dad new to this group:

Many of you have been on this list a while. All of us newbies don't know all of this stuff.

We can learn it, but it'll take time that would be better spent helping our kids.

To that end, if any of you have a complete list of potential tests to start with,

(and reason for doing each along with it would be very helpful, too), that would help

get things going. Is there one saved anywhere on this website?

For me, I have a prescription to get a CBC, CMP, ASO and AntiDNAse Ab (which I understand should read

AntiDNAse B so that I get a strep test instead of a lupus test).

It sounds like this is just the tip of the iceberg.

What other tests are mission critical that I can ask my doctor to write a scrip for?

What I know is that my son also showed 1:320 for HHV-6. I don't know how high this is,

as I haven't been able to learn that from anyone. I'm sure someone out there knows this already,

but I'm still hunting for the answer, and although lots of people read the post, no one

replies. It's frustrating.

Another thing...please don't presume we all know how to use the Messenger and the other stuff.

For example, if I haven't replied to your message to me, I may not have found it yet.

 

Thanks for listening

Dave

 

Hi Dave, and Welcome--

I just wanted to add: it does take some time to gather this knowledge, but I found it really helpful to:

Read old threads. I would go to the top of the page, and select old page numbers, and scan through some old posts. Yes, this does take some time, but I learned a great deal doing this- I would stay up at night for a few extra hours.

Also, Autism One conference 2010 had some excellent pandas Dr.'s giving lectures- if you google it, you can buy the 1 hour DVD's.

The search engine on this board is a mystery to me, it never seems to work. So, I use google, and end my question with 'pandas' and it will bring up this board and older posts related to my question.

And lastly, phone consults with some pandas experts (Dr.'s) were helpful to me--

There is also a pandas/autism yahoo group.

HTH.

[Ozimum]

Hi Dave,

If you haven't yet found them yet...there are two pinned threads at the top of the PANDAS and PITAND forum topics page - one for abbreviations, and the other (the top most thread) is labelled - Helpful Threads for PANDAS.

Also, the search engine might be a bit slow but is actually really useful.

Edited June 14, 2011 by Ozimum

[Wickedmaineah]

We have our first appointment with the PANDAS doctor on July 11th. I will spend the time before then gathering all of his old records and creating a timeline of his symptoms for her. I will also spend time learning through all of you and complying a list of tests, questions, and information to make this a very productive appointment.

I also bought the book "Saving Sammy" today. I can't wait to start it!

Christina

[EAMom]

Antibiotics won't do anything for a viral infection. Strep is a bacteria, as are lyme and mycoplasma.

 

An antibiotic won't help fight off a viral infection per se *BUT* since some antibiotics are anti-inflammatory (eg. Azithromycin) and others may also act as glutamate blockers (eg. Augmentin)I believe they still may help dampen viral triggered exacerbations of OCD/pandas/pitands.

 

I should also add that sometimes strep "hides out" in a non-cultureable location (eg sinuses), so it may be hard to say for sure that someone really doesn't have a bacterial infection that is contributing to symptoms.

 

Wicked M...here's a thread on glutamate blockers. http://www.latitudes.org/forums/index.php?showtopic=13711

Some glutamate blockers are OTC (huperzine A, NAC) so you could try that without a rx.

Edited June 14, 2011 by EAMom