Non-believing neurologist

[Keri]

I'm new to this forum. My 8-year-old son developed a sudden onset tic disorder on March 18th, which has persisted since. He typically has 15-20 motor tics every minute. He also was diagnosed as having Group A Strep via throat culture with heavy growth, although his titer levels came back within the normal range.

 

We went to see a neurologist due to the fact that the tics were not improving and he had shown a decline in his handwriting/fine motor skills as reported by his teacher at school. In no uncertain terms, the neurologist basically admitted that he didn't believe that PANDAS was a certifiable diagnosis and didn't think there was a connection between Strep A and the symptoms exhibited by children during exacerbations. The neurologist diagnosed him with an abnormal movement disorder and was getting ready to pull out his pad to write a script for a dopamine inhibiter to help address the tics, but I'm not ready to drug him up given that the doctor couldn't even give me a diagnosis. I'm a firm believer that drugs often mask symptoms but don't actually address the problem. Medication certainly has its place, but not in this situation, I don't believe.

 

My pediatrician was actually very helpful with information about PANDAS. I think that he feels there's a positive connection, but won't come right out and say for sure that he has PANDAS. My feeling is that he's looking for another doctor to confirm his suspicions, but I don't think it would matter how severe OCD/tic symptoms were in addition to every conceivable connection there is....this doctor will never diagnose PANDAS.

 

So, my question is, where do I go from here? I believe that my son has PANDAS, even though his symptoms aren't as severe as some. I don't want it to get to the point where other kids are teasing him for something he can't control.

[Buster]

Hold on. You had a positive throat culture -- go treat it. Given the tic symptoms as well, ask your doctor to extend the antibiotic to 30 days. If your child is still culture positive and your doctor wants a paper see if they'll emm type the strain. If you get a chance to nudge your pediatrician on medication, go for Augmentin or Azithromycin -- both shown to be quite clinically effective against GABHS.

 

The titers are not meaningful unless taken at specific time intervals from the colonization of strep. Take a look at the FAQ here:

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Regards,

 

Buster

 

 

I'm new to this forum. My 8-year-old son developed a sudden onset tic disorder on March 18th, which has persisted since. He typically has 15-20 motor tics every minute. He also was diagnosed as having Group A Strep via throat culture with heavy growth, although his titer levels came back within the normal range.

 

We went to see a neurologist due to the fact that the tics were not improving and he had shown a decline in his handwriting/fine motor skills as reported by his teacher at school. In no uncertain terms, the neurologist basically admitted that he didn't believe that PANDAS was a certifiable diagnosis and didn't think there was a connection between Strep A and the symptoms exhibited by children during exacerbations. The neurologist diagnosed him with an abnormal movement disorder and was getting ready to pull out his pad to write a script for a dopamine inhibiter to help address the tics, but I'm not ready to drug him up given that the doctor couldn't even give me a diagnosis. I'm a firm believer that drugs often mask symptoms but don't actually address the problem. Medication certainly has its place, but not in this situation, I don't believe.

 

My pediatrician was actually very helpful with information about PANDAS. I think that he feels there's a positive connection, but won't come right out and say for sure that he has PANDAS. My feeling is that he's looking for another doctor to confirm his suspicions, but I don't think it would matter how severe OCD/tic symptoms were in addition to every conceivable connection there is....this doctor will never diagnose PANDAS.

 

So, my question is, where do I go from here? I believe that my son has PANDAS, even though his symptoms aren't as severe as some. I don't want it to get to the point where other kids are teasing him for something he can't control.

Edited April 8, 2010 by Buster

[MomWithOCDSon]

If you cannot get help from this doctor, then you find another. This site and others pertaining to PANDAS are full of practioner lists for doctors who not only treat PANDAS, but also those who specialize in it. Your child has the, forgive the phrase, "perfect symptom set," so any informed doctor WILL treat. Like Buster said, at a minimum, the strep with a positive culture should be considered treatable by any pediatrician in the country, though it might initially net you only a 10-day prescription for antibiotics. But you can push for more.

 

In short, don't take "No" for an answer. Your sons symptoms are saying "Yes"!

[3boysmom]

If you cannot get help from this doctor, then you find another. This site and others pertaining to PANDAS are full of practioner lists for doctors who not only treat PANDAS, but also those who specialize in it. Your child has the, forgive the phrase, "perfect symptom set," so any informed doctor WILL treat. Like Buster said, at a minimum, the strep with a positive culture should be considered treatable by any pediatrician in the country, though it might initially net you only a 10-day prescription for antibiotics. But you can push for more.

 

In short, don't take "No" for an answer. Your sons symptoms are saying "Yes"!

 

 

I think many of us have had an uncomfortable disagreement with a neurologist/psyciatrist. Told us that their line of thinking is "you can't "Catch" mental illnesses" We left his office and kept seeking answers! Augmenton XR is what is working as of now. Crossing my fingers while praying.

[thereishope]

Welcome. Sudden onset with a positive throat swab. And doctors still doubt this. Can I scream now?

 

I'm assuming he was put on antibiotics for the + throat swab? Which one and for how long? Let's see March 18...what is that...about 3 weeks ago? Have you seen any improvement at all?

 

Here are some useful links that are good for newcomers to read. They may answer a lot of questions or lead you to ask new ones...

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

 

PANDAS Flowchart (good for trying to figure out the diagnosis)

http://www.latitudes.org/forums/index.php?...ic=6688&hl=

 

Also, I suggest visiting www.pandasnetwork.org. There is a wealth of info there. And don't feel shy about informing your ped about the website or supplying him with printouts.

 

One more thing....as for getting the actual diagnosis, that is important but you may be able to start treating PANDAS by getting him the appropriate antibiotics in a timely manner. So, if your doctor is willing to do the antibiotics (even without an actual diagnosis yet) that is great.

 

Finally, it's time to bring everyone into the doctor and make sure no one else in the house has strep (even if they have no symptoms).

[Phasmid]

So glad you stood up for your child. I have very ill feelings towards docs who do nothing but pull out the prescription pad for antipsych. meds.

 

 

 

I'm new to this forum. My 8-year-old son developed a sudden onset tic disorder on March 18th, which has persisted since. He typically has 15-20 motor tics every minute. He also was diagnosed as having Group A Strep via throat culture with heavy growth, although his titer levels came back within the normal range.

 

We went to see a neurologist due to the fact that the tics were not improving and he had shown a decline in his handwriting/fine motor skills as reported by his teacher at school. In no uncertain terms, the neurologist basically admitted that he didn't believe that PANDAS was a certifiable diagnosis and didn't think there was a connection between Strep A and the symptoms exhibited by children during exacerbations. The neurologist diagnosed him with an abnormal movement disorder and was getting ready to pull out his pad to write a script for a dopamine inhibiter to help address the tics, but I'm not ready to drug him up given that the doctor couldn't even give me a diagnosis. I'm a firm believer that drugs often mask symptoms but don't actually address the problem. Medication certainly has its place, but not in this situation, I don't believe.

 

My pediatrician was actually very helpful with information about PANDAS. I think that he feels there's a positive connection, but won't come right out and say for sure that he has PANDAS. My feeling is that he's looking for another doctor to confirm his suspicions, but I don't think it would matter how severe OCD/tic symptoms were in addition to every conceivable connection there is....this doctor will never diagnose PANDAS.

 

So, my question is, where do I go from here? I believe that my son has PANDAS, even though his symptoms aren't as severe as some. I don't want it to get to the point where other kids are teasing him for something he can't control.

[forjpj]

I agree find another neurologist who treats it! Classic symptoms!! Good luck Keri!! You know your child best!!

 

Is it just me or are more parents coming here quicker? I find comfort in that...especially since my son was not a sudden-onset and probably falls into the "chronic" pandas category. He is 10 yrs old now, and had his first (and only) positive strep at 2. If more people had been aware of PANDAS then maybe we wouldn't have gotten to this point! It is wonderful to know that all our efforts of getting out this information are paying off!!

 

Once again...Good luck Keri!!

[T_Mom]

Follow Buster's sound advice and then see if you can track a response to treatment --

 

Response to treatment is often the precursor to a diagnosis of "Pandas" or at least to more antibiotics!

[EAMom]

He also was diagnosed as having Group A Strep via throat culture with heavy growth, although his titer levels came back within the normal range.

 

Hi Keri,

I am assuming your child was giving some sort of antibiotic to treat this infection? Which one, what dose, and how long a course? How much does your son weigh?

 

If has already been off of antibiotics for at least a week or two, it would be interesting to repeat the culture and see if it is still positive (if you test too soon, you could get a false negative). Either way, I would ask your ped (as Buster recommended) to extend the course of abs to at least 30 days. I would also rec. picking something stronger than Amoxcillin, esp. if that is what you got initially to treat the heavy growth of GABHS. Here is an article on amoxcillin failure in strep throat. http://www.entrepreneur.com/tradejournals/.../169459644.html Augmentin and Azithromycin are popular antibiotics on this forum.

 

If a month of full-strength Azith. (either 250mg or 500mg/day depending on your child's weight) doesn't help the tics, I would try Augmentin (or vice versa).

 

Also, where do you live? Maybe someone can rec. a doc.

 

I would also strongly urge you to have all household contacts (siblings, parents) throat cultured to check for carriers who might be contributing to your son's symptoms.

 

Did you change toothbrushes/toothpaste a few days in to the abs? I would also not let children share toothpaste. Give each one their own tube.

 

Tics can be one of the hardest PANDAS symptoms to get under control with just antibiotics...so even if you don't see a big decrease on symptoms with just abs, I wouldn't completely discount PANDAS. For now, you might also add on Advil to see if that helps. For us, tics was also the symptom which takes the longest to go away (may not be true for all kids). Mood usually improves first, then OCD, then tics (sometimes taking 6+ weeks).

 

I would also consider getting the "Cunningham blood test" ($400 but it is tax-deductable as a donation).

 

Good luck and keep us posted!

 

btw...are you familiar with Lauren Johnson's story? http://today.msnbc.msn.com/id/35814608 Her "sneeze" was a tic and took several months of treatment (Azith, Augmentin, steroids, and finally IVIG) to eliminate her tics. So, just b/c your child's tics don't go away with 10 days of amoxicillin, doesn't mean it's now PANDAS!

Edited April 8, 2010 by EAMom

[Joan Pandas Mom]

PLEASE find a PANDAS doc ASAP. I listened to the "naysayers" for 6 years. Now my son is 15 1/2 and IVIG might not work for him due to his age. I've decided the "naysayers" can all go to ######! Your son sounds like classic PANDAS to me and there is help out there for him. Good luck with everything.