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Loren

yet another doctor's appt. (3rd one and counting)

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Okay, People....

 

So today is another day.

I have a 5:30 appointment with another pediatrician for Tyler. I explained the problem over the phone and said I would be coming in for a 'prescription' for blood work. This is the pediatrician that Ty has had since he was a baby. The nurse said that they are unfamiliar with Pandas, so I printed out 4 different articles and highlighted all of the necessary information for them.

 

WHO WOULD HAVE THOUGHT IT WAS SO HARD TO GET BLOOD WORK ORDERED??????

 

OMG!! This is just bizarre. I am frustrated. (or could you not tell??? lol). Really. This whole thing is insane. I am not saying my child HAS pandas. Really. I just want to RULE IT OUT. JUST RULE IT OUT!!! If it is pandas, it may be more treatable than T.S. or just a tic disorder. And you know, there is probably a small chance it is pandas......but still!!!! Why do I have to go to 3 doctors (or more if this one won't agree) just to get a simple blood test?????

 

This is just such bulls***.

 

On another note, I did order the mag calm today, and some mag pills, 300 mg. Tyler left for school today without taking his multivitamin....grrrrrrr.

Although he did finally take an epsom bath last night ...... yay!!!

 

Tyler is ticing a lot less than last week, though. The tics come, probably about every 15 or 20 minutes, vs. every single minute like before. And he is doing the head shake less....... he does the 'shove the shirt under each arm pit' more. I prefer that over the head shake. It is less noticeable to others, I think.

 

Well, thanks for letting me vent. I feel better now. And yes, I was definitely 'shouting' in those capitalizations, above. Jeeez. Who would have thought my life would be like this one week later? (week and a half, now, and counting). I should start a journal, since I am probably at the beginning of something that is going to last a long, long, l o n g time.

 

Loren

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Loren,

 

I'm glad your mad about this, I think that is good. You will get results, where as all I did was mopped the bathroom floor with my tears. We did the PANDAS tests too for the same reason, RULE IT OUT!! I knew my husband hat TS by that time, so in the back of my mind I knew it was in the genes. I didn't care I wanted the test done anyway. Our ped. looked at me funny, but didn't say, no to the tests.

 

You keep going girl,

C.P.

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Loren,

 

I hesitate to even send this message, because I am not the best one to advise you on this, but......

 

I'm a little confused as to whether you want your Dr. to do the ASO and antiDNASE test today.

 

Do you remember this from a post on your thread

 

When my daughter was first diagnosed we took her to the NIMH (National Institute of Mental Health) where we met with Dr. Susan Swedo who is considered one of the top experts on PANDAS. She instructed us to insist whenever they do a throat culture for strep on my daughter that it be grown out for a full 72 hrs. Normally they grow the cultures out anywhere from 24-48 hrs. She said that for some reason in children with PANDAS it can take a full 72 hrs
.

 

This is my understanding, and I may be wrong

 

The blood test will show, if there are elevated strep antibodies, but if there is an active infection, they will just treat it with an antibiotic anyway, and say it's normal for the things the blood work tests for, to be elevated at this point anyway.

 

These markers or antibodies, are supposed to fall, after the active infection is cleared, but don't in the case of PANDAS. You may be better off, to only pay for a 72 hour strep culture, at this point. If you see improvement with antibiotic treatment (assuming the culture is positive), but the symptoms reoccur after the course is finished, then you may want the blood work done, to see what the titer levels are. I hope someone will recommend how long to wait in between, as I really don't know.

 

Come on PANDAS mama's....we need some advice here!

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We are all having a fun day, aren't we?!

 

Loren, I don't know how far you are from a big city, but if you are somewhere near New York City or Philli, I think you can pick any doctor you want to go to. I would look in the yellow pages for an Infectious Disease doctor and call to ask if they know what you are referring to. My doctor gave us the name of one and we just went there. I think being in a major city helps, so just try to find one on your own. Your regular docs may not be up on this stuff and will probably give you the run around. I think you mentioned your insurance not being too good, but you could probably save running around by doing some phone calling around first. Good Luck.

 

Faith

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Loren,

 

I agree that making a call would be better. Why don't you call this pediatrician and request a phone call back before going in for an appt. When the pediatrician calls back, find out if they would be willing to complete the blood work. Maybe you don't even need to make an appt. as maybe they will just have your son come in for the blood draw or write a prescription to take to a lab. Get a guarantee that they will do the blood work before going in and hold them to it.

 

Also I don't know what your health insurance coverage is for lab tests, but if it's not good maybe you should check into the difference in cost of going through Direct Labs. www.directlabs.com I know the PANDAS test aren't listed on the tests offered list, but if you call them they are often able to get specific tests which aren't listed. They just may have to call the lab and get a price.

 

Carolyn

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Loren,

 

I hesitate to even send this message, because I am not the best one to advise you on this, but......

 

I'm a little confused as to whether you want your Dr. to do the ASO and antiDNASE test today.

 

Do you remember this from a post on your thread

 

When my daughter was first diagnosed we took her to the NIMH (National Institute of Mental Health) where we met with Dr. Susan Swedo who is considered one of the top experts on PANDAS. She instructed us to insist whenever they do a throat culture for strep on my daughter that it be grown out for a full 72 hrs. Normally they grow the cultures out anywhere from 24-48 hrs. She said that for some reason in children with PANDAS it can take a full 72 hrs
.

 

This is my understanding, and I may be wrong

 

The blood test will show, if there are elevated strep antibodies, but if there is an active infection, they will just treat it with an antibiotic anyway, and say it's normal for the things the blood work tests for, to be elevated at this point anyway.

 

These markers or antibodies, are supposed to fall, after the active infection is cleared, but don't in the case of PANDAS. You may be better off, to only pay for a 72 hour strep culture, at this point. If you see improvement with antibiotic treatment (assuming the culture is positive), but the symptoms reoccur after the course is finished, then you may want the blood work done, to see what the titer levels are. I hope someone will recommend how long to wait in between, as I really don't know.

 

Come on PANDAS mama's....we need some advice here!

 

Kim,

 

The other doctor checked his throat and said that he didn't have strep. I am thinking the PANDAS only b/c he was complaining of a sore throat six weeks ago. I was boggled down with work and kinda/sorta blew him off ~~blush~~. Who woulda thunk it????

 

I seriously don't think it is PANDAS, but girlfriend ~ if I'm gonna undergo the next 10 years of my life dealing with this, how many times would I look back and wonder if I didn't rule it out??? I need that in order to sleep at night. Which, by the way, I'm still not doing......

 

Loren

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Loren,

 

I agree that making a call would be better. Why don't you call this pediatrician and request a phone call back before going in for an appt. When the pediatrician calls back, find out if they would be willing to complete the blood work. Maybe you don't even need to make an appt. as maybe they will just have your son come in for the blood draw or write a prescription to take to a lab. Get a guarantee that they will do the blood work before going in and hold them to it.

 

Also I don't know what your health insurance coverage is for lab tests, but if it's not good maybe you should check into the difference in cost of going through Direct Labs. www.directlabs.com I know the PANDAS test aren't listed on the tests offered list, but if you call them they are often able to get specific tests which aren't listed. They just may have to call the lab and get a price.

 

Carolyn

 

Hey Carolyn,

 

I did call. I talked with the nurse since the doc wasn't in yet. She already warned me that they may not decide to do the blood work. I am banking on the fact that my doctor is an extremely warm, kind-hearted doctor. I've used her for the past 12 years. I have all of my information that I printed out, and I've spent half the day thinking about what I will say to her.

 

I don't understand why the doctors don't want to get the blood done? Why? She doesn't do blood there, she would write me a script for the lab. Why not do that if you can rule something out?

 

Is this an oddball test? Do the labs know how to do them? What's the problem, cupcake? Do you know? I surely don't. I'm sure I will after this is all over though..... :mellow::wacko:

 

Keep your fingers crossed for SOMETHING.

 

Oh, and I take back the post where I said Ty's tics have slowed. He must've had at least 4 in the 30 seconds he was home from school today. Could the fact that he didn't take that multivitamin this morning have an impact so soon?

 

Loren

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Loren,

 

I totally agree, that ruling PANDAS in or out, is a good idea.

 

The other doctor checked his throat and said that he didn't have strep

 

This was his opinion based on just looking at his throat right? Not a 72 hour strep culture?

 

Again, I may be wrong, but I think most parents that have discovered PANDAS, initially have a positive culture.

The blood work that you are requesting would only be significant, if there is a negative culture. If there is an active infection, you would expect the levels to be elevated. If you have a negative culture, now, and the titers in blood work are elevated, then I guess, it would be significant. If you keep the appt. I'm thinking you should request the 72 hour cultured strep test. Whether you have the blood work done at this same appt. or not, is something I wish one of our PANDAS Mom's would comment on. I just wouldn't want you to have to pay for the test again, in the event that there is currently an active infection.

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Loren,

My thoughts are that you should go ahead and do the cultures and the titers both today. You may or may not get a positive culture. Even if it is a negative throat culture there can still be strept other places in the body causing elevated titers and believe me you will never get a doctor to draw titers after a negative throat culture. I have read about PANDAS patients having strept in the adnoids, ears, rectum, gut, and many other places. The average doctor however seems ignorant to the way that PANDAS can present and how it should be treated. Get it all now and then go from there with the results. I feel your frustration, and believe me, I have been there, done that and have the scars to show it. You are not alone. Dig in your heels....

 

Dedee

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Loren,

My thoughts are that you should go ahead and do the cultures and the titers both today. You may or may not get a positive culture. Even if it is a negative throat culture there can still be strept other places in the body causing elevated titers and believe me you will never get a doctor to draw titers after a negative throat culture. I have read about PANDAS patients having strept in the adnoids, ears, rectum, gut, and many other places. The average doctor however seems ignorant to the way that PANDAS can present and how it should be treated. Get it all now and then go from there with the results. I feel your frustration, and believe me, I have been there, done that and have the scars to show it. You are not alone. Dig in your heels....

 

Dedee

 

From what I have read and my Neurologist confirmed, titers can remain even after the step infection is gone. He said they usually do not go down before 30 days. He also confirmed that the throat swab is a poor test and the blood test is a must. My son still ticks but less frequently and he was strep positive early March. He stopped the Azith on Friday and it should still be in his system another week so we will have another test on Friday to see if the strep is gone and take a titer count. I am very curious to see what happens. I sometimes think I expect an improvement too soon when many articles say it can take weeks to see real improvements and symptoms to go away.

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Hi Loren,

 

I hope the appt. went well.

 

I don't know why some doctors don't want the tests done. I've went into my nurse practictioner after calling on the phone to see if they could test hormone levels for the breakout I've had on my face. She said they could and to make an appt. When I went in she said didn't even know which ones to test and sent me home with a topical antibiotic sample & a prescription (Not what I went in for and I considered it such a wasted appt.). So maybe it's that many have no clue what ASO titers are along with many other tests we ask for.

 

My natural doctors will order any test I request. Labs that specifically do blood draws are very good at it and shouldn't have any problems.

 

Not taking his multi-vitamin could have contributed to the increased tics today. For me supplements make a huge difference in the amount of ticing. I can tell when I skip them.

 

Carolyn

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I'mmmmm baaccckkkkkkkk.

 

I cried on the way home........ from relief!!! Yay! It's a different, better-kind-of-cry. I LIKE THAT CRY!!!

 

I have my script in hand for the blood work. I can't believe that a little, dinky pediatrician from a teeny, tiny town (Bridesburg, Phila., PA) knew MORE than the hoity-toity- $230-a-visit neurologist. She said she just got back from a presentation on PANDAS at the Children Hospital of Philadelphia. Phew! Imagine my relief!

 

Anyway, my hubby is coming home early to take Ty to do the blood work tomorrow. Ty will cry from a mosquito bite, much less.....blood work. In fact, a few months ago I hit him over the head with a limp piece of celery and he collapsed on the floor, crying. Oh, the drama from a 12 year old!

 

So is this correct? If Tyler tests positive for PANDAS, then we start a round of antibiotics and take it from there.

 

If he tests negative for PANDAS, then I need to assume that he has Tourette's or a tic disorder. If that's the case, I should focus primarily on his diet and nutritional supplements.

 

Is this right?

 

Oh, btw, the doc gave me a script w/ enough refills for a years worth of Ambien. Yay! You're gonna see the butterfly flying above my head like in the commercials (or is that Lunesta????) Either way, no more restless nights for moi'.

 

Well, it's time for vision therapy with my other son. A mother's job is never done.....

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Loren,

I am so glad that you are able to get the titers done. Here is a little info on them:

 

The anti-streptococcal antibody titer determines whether there is immunologic evidence of a previous strep. infection. Two different strep. tests are commercially available: the antistrepolysin O (ASO),which rises 3-6 weeks after a strep. infection, and the antistreptococcal DNAase B (AntiDNAse-B) titer, which rises 6-8 weeks after a strep. infection.

An elevated anti-strep. titer (such as ASO or AntiDNAse-B) means the child has had a strep. infection sometime within the past few months, and his body created antibodies to fight the strep. bacteria. Some children create lots of antibodies and have very high titers (up to 2,000), while others have more modest elevations.Some children have "positive" antibody titers for many months after a single infection.

It would still be beneficial to do the throat cultur for 72 hr. b/c it can take up to three weeks to see a rise in antibodies, so your son's titers could possibly come back not elevated yet. I know that no one wants to use antibiotics if not necessary, but in the case of possible PANDAS, given that your son's symptoms came on quickly, and knowing that if it is strep related you will see noticeable improvement in a few days on antibiotics, I feel (and my different doctors all agreed when we were in this same exact spot with our daughter) it is completely warranted to just do a course of antibiotics. Over the past 5 yrs. when my daughter has a big flare up of tics/OCD behaviors and tests negative for strep, we have given her a course of antibiotics and the tics/OCD start to diminish over 2-3 days (sometimes there is even a huge decrease in symptoms after two doses). This tells me she has strep, but it must be elsewhere in her body. If you do go the route of antibiotics, I would just suggest not letting them give your son Amoxicillin or penicillin, b/c they have high failure rates with strep (up to 25% failure rates). Azithromycin is good and also cephalosporins are good. Hang in there!

Colleen

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Loren,

I am so glad that you are able to get the titers done. Here is a little info on them:

 

The anti-streptococcal antibody titer determines whether there is immunologic evidence of a previous strep. infection. Two different strep. tests are commercially available: the antistrepolysin O (ASO),which rises 3-6 weeks after a strep. infection, and the antistreptococcal DNAase B (AntiDNAse-:mellow: titer, which rises 6-8 weeks after a strep. infection.

An elevated anti-strep. titer (such as ASO or AntiDNAse-:wacko: means the child has had a strep. infection sometime within the past few months, and his body created antibodies to fight the strep. bacteria. Some children create lots of antibodies and have very high titers (up to 2,000), while others have more modest elevations.Some children have "positive" antibody titers for many months after a single infection.

It would still be beneficial to do the throat cultur for 72 hr. b/c it can take up to three weeks to see a rise in antibodies, so your son's titers could possibly come back not elevated yet. I know that no one wants to use antibiotics if not necessary, but in the case of possible PANDAS, given that your son's symptoms came on quickly, and knowing that if it is strep related you will see noticeable improvement in a few days on antibiotics, I feel (and my different doctors all agreed when we were in this same exact spot with our daughter) it is completely warranted to just do a course of antibiotics. Over the past 5 yrs. when my daughter has a big flare up of tics/OCD behaviors and tests negative for strep, we have given her a course of antibiotics and the tics/OCD start to diminish over 2-3 days (sometimes there is even a huge decrease in symptoms after two doses). This tells me she has strep, but it must be elsewhere in her body. If you do go the route of antibiotics, I would just suggest not letting them give your son Amoxicillin or penicillin, b/c they have high failure rates with strep (up to 25% failure rates). Azithromycin is good and also cephalosporins are good. Hang in there!

Colleen\

 

 

Colleen,

 

That is great information. That is exactly what I was wondering. Thank you!

Unfortunately, that doctor doesn't even have strep throat culture tests in her office (remember? Rinky dinky doc) and the more modern doc I took Ty to last week refused to do it after just looking in his mouth. Well, in all fairness to him, he did ask me if Tyler had had a fever. I had said, "no." So the doc said that he couldn't have had strep then.

 

Which makes me think of another question. Do all of the kids who have PANDAS actually have a fever? If so, wouldn't we have been more likely to notice the strep and get it taken care of? Hmmmmm.

 

Loren

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Loren,

It is so unfortunate for our children that SO many doctors give out incorrect information. It is quite common for children with PANDAS to have very atypical symptoms of strep. In the past 5 1/2 years my daughter has tested positive (throat culuture) at least 40-50 times and in ALL of those instances she only had a fever a handful of times. The "typical" symptoms of strep are fever, sore throat, red throat with or without pus, headache, and stomach pains. When my daughter was very young she had more fevers and the occasional sore throat when she had strep. I learned over time to go by her increases in tics/OCD behaviors as a red flag that she has strep and not to go by her physical symptoms (or lack of). I can not tell you how many drs. and nurse practitioners have looked at my daughters throat and said "Oh, her throat isn't even red and she has no fever". It was at my insistence that they do a throat culture and to their surprise it would come back positive. We are now with a practice with two drs. and a nurse practitioner who know our situation very well and they know that if I say she probably has strep we do a 72 hr. culture no matter what her symptoms are. If the culture comes back negative, but she is still experiencing a big increase of tics, we do a course of antibiotics and 9 out of 10 times she greatly improves.

The most frustating thing for me in the past 5 1/2 years (besides watching my daughter struggle with this illness) has been the INCREDIBLE LACK of knowledge regarding PANDAS and the number of doctors who don't even know it exists. It has been in medical literature since 1985 and I feel it is unacceptable for a physician (especially pediatricians and neurologists) to not be educated on this illness. I live in Charlottesville, VA where the University of Virginia is located and I know for a fact that they are teaching about PANDAS at UVA's medical school. I just don't know if they really teaching or just "mention" it.

Just keep hanging in there, read as much as you can to educate yourself on the illness and insist that a throat culture be performed. If his tics are strep related he needs to start antibiotics. Could you call the first doctor back and tell him you have found out more PANDAS information and have been advised to do a throat culture? The doctors at NIMH are very willing to speak with a physician regarding possible PANDAS. Over the years I have directly contacted them and my doctors have also. Here is their contact info:

Susan E. Swedo, MD, Chief

10 Center Drive MSC 1255

Building 10, Room 4N208

Bethesda, MD 20892

(301) 496-5323

FAX: (301) 402-8497

 

Good luck!!

Colleen

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