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Advice on when to seek specialist


cdklyn

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My daughter (4 years old) began displaying tics in early December of 2011. Arms extending (moving as if pretending to be a bird) hands fingers spread apart, and at times her legs replicate the same movement at the same time. She looked at times as if she were doing a spread eagle in a stationary and sometimes moving position. We noticed these seemed to occur more often over the Christmas break. She was also sniffing things often, especially new items. We decided to take her to her pediatrician, but before doing so I googled 'tics.' As I read the various articles, I began to see strep show up, then PANDAS. As i read the symptoms, I began to think back to all of her recent strep infections, we are aware of (dating back to September 2011) one infection causing her to have reactive arthirtis to the strep. I also began to think back to various smaller tics she's had over the last 2 years, eye, throat clearing, mouth, all that lasted only a month or less then disappeared. I was convinced it was PANDAS, but of course wanted the pediatricians opionion. He listened to our concerns, asked us a list of questions, and did a strep test that came back positive (though she had no symptoms). He at that time agreed with us and diagnosed her with PANDAS. He called a ped. neurologist to consult and informed us that he would call us back once he spoke with the neuro. The same date we were shceduled to have her tonsils removed to decrease the vulnerability to strep. Surgery will be at the end of this month.

 

The next night, the pediatrician called and said he consulted the neurologist. This Dr. did not believe PANDAS is a true medical condition and believed instead that our daughter likely has Tourette's triggered by strep. When I asked if he believed it was PANDAS, my pedicatrician stated he just didn't know at this time, let's get her tonsils out, then see what happens over the next 2-3 years???

 

Needless to say, waiting that long to further investigate was disturbing to me so rather than wait 2-3 years to see if things get worse, i'm researching a Dr. i can consult that has knowledge of and will see my daughter. I'm not sure how severe the symptoms must be to diagnose. Any advice if my case sounds serious enough to contact Dr. who specializes in PANDAS??

 

Thank you!

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Where do you live? Hopefully someone her can help you with a doc.

 

I would suggest that you RUN to a pandas doc.

 

Firstly, re the T&A surgery, most pandas docs would put your child on more extended antibiotics than "normal". A few of us have seen our kids have flare ups due to the T&A surgery.

 

Secondly, some kids have worsening episodes, esp if untreated- however mild your case, I would want a doc already on board if, god forbid, you need them in the future.

 

Also, for the record, I am finding with my kids that the more immediate and aggressive we react to flare ups, the shorter term they are.

 

Good luck.

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dcmom is right - some kids do flare with the T&A.

 

Our son had wonderful results from it - but he was on abx leading up to the surgery, given a high dose IV antibiotic and then on high dose Augmentin for 30 days after the surgery.

 

I would INSIST your ENT provide IV antibiotics and post op abx at a minimum.

 

Our ENT said that it used to be standard protocol to do IV abx during the surgery, but it's not anymore, but for PANDAS kids he wouldn't do it any other way.

 

As for when to see the specialist - NOW! The sooner the better, you may have to travel, and it may take some time to get in with one, so the sooner you start that search the better.

 

There is a great list pinned at the top of the forums, and depending on where in the country you are, lots of folks on here can point you in the right direction.

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When or if your child,( hopfully never) gets to a place when you decide you really need to seek a specialist, then you may need to wait for an appointment. You do not want to get in that position! The experiences on this forum seem to be, the earlier caught and aggressivly treated, controlled and monitored, the better chance for full recovery.and less extream & expersive treatment.

 

Blessings

Linda

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ditto DCMom

 

Also, your neurologist is confused. (And P.MOm is right, "tourettes" triggered by strep = PANDAS)

 

According to the DSM definiton of tourettes "the symptoms are not due to medications or drugs and are not related to another medical condition".

 

So, if the tics are caused by an autoimmune rxn triggered by a strep infection, well, in my mind, that is "another medical condition" so what your daughter has can NOT be called tourettes. Along the same lines, tics caused by Sydenham Chorea (sp?, also a sequelae to strep infection), would not be considered TS.

 

re T/A: Dr. Tanya Murphy (PANDAS specialist in FL) actually is anti-T/A b/c she has seen kids (note: I'm not sure if these where mainly kids who didn't get antibiotics during/after sx?) whose PANDAS gets a lot worse post surgery. (She discussed this at her presentation at the IOCDF conference in San Diego this year). I also agree with others about antibiotics being really critical during sx (and after) to prevent a big flare.

 

Also, be aware that lots of kids still get strep after T/A.

Edited by EAMom
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We see Dr. Bouboulis in CT. He is great! But there is a website www.PANDASresources.com, I believe is the site, there should be a list of providers.. hope this helps. I know many doctors that treat PANDAS, have a long waiting list, so get right on it and call a few. If I am correct, many don't take insurance either... But Dr. B does take some.

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I'd see someone specifically for PANDAS. I would not wait. Things can get worse w/out treatment. I believe there are a couple of doctors in your area who are familiar w/ PANDAS. I'd start there before traveling a long way. There is a pinned thread that lists PANDAS treating doctors by state.

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Where do you live? Hopefully someone her can help you with a doc.

 

I would suggest that you RUN to a pandas doc.

 

Firstly, re the T&A surgery, most pandas docs would put your child on more extended antibiotics than "normal". A few of us have seen our kids have flare ups due to the T&A surgery.

 

Secondly, some kids have worsening episodes, esp if untreated- however mild your case, I would want a doc already on board if, god forbid, you need them in the future.

 

Also, for the record, I am finding with my kids that the more immediate and aggressive we react to flare ups, the shorter term they are.

 

Good luck.

 

Thank you so much for the advice. I feel so relieved and reassured by all of the reponses and advice...a Godsend really.

 

We live in North Texas, approximately 2 hours north of Dallas, we're willing to travel obviously. Anyone have recommendations for the Texas or Oklahoma area? If not TX or OK, we're willing to travel anywhere really. Just want some credible information from a professional...

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I really can't add anything more to the good advice that you have already received. Just wanted to emphasize what others have said about getting on antibiotics prior to the T&A and remain on them after the surgery for several weeks. For us the T&A gave great improvement to our oldest son but he was on Augmentin for three weeks prior and nearly a month after. If I were you I wouldn't let this week end without an appointment with a specialist. The longer this goes on the worse the symptoms and the harder it is to treat. Go to one of the "Big Dogs" and get the help you need without wasting your time with the others. Best of luck...

 

Dedee

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dcmom is right - some kids do flare with the T&A.

 

Our son had wonderful results from it - but he was on abx leading up to the surgery, given a high dose IV antibiotic and then on high dose Augmentin for 30 days after the surgery.

 

I would INSIST your ENT provide IV antibiotics and post op abx at a minimum.

 

Our ENT said that it used to be standard protocol to do IV abx during the surgery, but it's not anymore, but for PANDAS kids he wouldn't do it any other way.

 

As for when to see the specialist - NOW! The sooner the better, you may have to travel, and it may take some time to get in with one, so the sooner you start that search the better.

 

There is a great list pinned at the top of the forums, and depending on where in the country you are, lots of folks on here can point you in the right direction.

 

 

Thank you so much for the information. Will definately talk to ENT about abx during and after surgery. She's currently on cephalexin hoping to clear up current strep infection prior to surgery...we'll see next week if it's clear...

 

I tried to find the list of Drs. at the top of the forum page and i'm having trouble locating the link...?

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