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Hi, we see the doc at Northeast Neurology and also Dr. O'Connor. Northeast is great but SUPER busy and hard to get appt's. I highly recommend Dr. O'Connor at this point in our progress.

 

HUGS! I know Dr. Nelson is helping a lot here. That is not good news!

 

Susan

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Hi, we see the doc at Northeast Neurology and also Dr. O'Connor. Northeast is great but SUPER busy and hard to get appt's. I highly recommend Dr. O'Connor at this point in our progress.

 

HUGS! I know Dr. Nelson is helping a lot here. That is not good news!

 

Susan

 

Thanks Susan...good to know you use them...can you PM me Dr. O'Connor's phone number and info...I will definitely go down that route also...

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Lisa, I am so sorry. Ironically, we too have recently had an increase in tics. Our son had 2 separate sore throats that both tested neg for strep, but tics came on soon after. He was on 10 days of abx, and they subsided while on abx, then now have begun to return. I pray so much that your Alex is able to get the strep out of his body soon and that you will find a good neurologist who respects you and the diagnosis. I am so saddened to hear about what you're going through. You will get through this. Remember that we are always here in the forum for you. I hope you have good news soon. How is Alex taking it all? Is he aware of the flare up?

LMAMA

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Lisa, I am so sorry. Ironically, we too have recently had an increase in tics. Our son had 2 separate sore throats that both tested neg for strep, but tics came on soon after. He was on 10 days of abx, and they subsided while on abx, then now have begun to return. I pray so much that your Alex is able to get the strep out of his body soon and that you will find a good neurologist who respects you and the diagnosis. I am so saddened to hear about what you're going through. You will get through this. Remember that we are always here in the forum for you. I hope you have good news soon. How is Alex taking it all? Is he aware of the flare up?

LMAMA

 

 

Thank you so much for the kind words...this being our second go round...and "knowing" what is going on...as well as knowing all of you are here...makes a world of difference...

 

Alex is aware he is 'wiggling' again...we talked about it and I explained everything as to why it happens, 'some kids get strep and get a really bad sore throat...but when you get strep, you get these wiggles', I explained the difference between the two doctors he goes to...one for the 'strep' and one for the 'wiggles'...and told him all he needs to to is just needs to tell me if the 'counting' or 'even' stuff starts happening again...he's a really smart kid and I felt him knowing would thwart any anxiety, I'll carry the anxiety...he needs to just be a kid...and luckily...he is still unphased...when he's alone and home I notice he will relax and his fingers wiggles are more pronounced...and when he's around a lot of people...like when I drop him off at school...he will try and control it more...which is good...he's using the tools the psychologist gave him...we had to walk a fine line...awareness vs. self-consciousness...I don't want his to be ashamed...but he needs to be prepared to respond if and when someone 'notices'...so far so good...

 

we go back to the ped this afternoon for the strep recheck...

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How are you guys? We are ok. Very mild tics right now. On a second 10 day rx of antibiotics. I think that the way that you talk with Alex about his symptoms is great. My son is almost 6 and he doesn't know about it yet, but I will certainly follow your lead on how to explain it. The "wiggles' is a great way to put it, and I think you are doing a great job helping him to understand what he's going through. It must be a HUGE help for him to know that mommy is there and is helping him carry the load. I hope he's doing better. :-)

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After months symptm free, last week Alex starting ticking again...he had had a swollen gland a week prior that had gone away with a increase of antibiotics and motrin at the suggestion of our neurologist...then woke up one morning with a fever, glassy eyes, headache, runny nose...brought him to the pediatrician to find it was strep...

 

obviously this means he has grown a resistance to the prophalactic Omnicef...Pediatrician gave him 10 days of Cleocin which is not penicillian based...we are on day 6 with drastic reduction in tics...

 

Now here's the BAD news...my neurologist is moving in two weeks...to Nebraska...I'm in NC...and the other neurologist in the practice will not take my son's case because she 'does NOT treat PANDAS'...and my ped is only cooperating at this point because I had a neurologist make an actual diagnosis who is handling most of his care...I am waiting on a phone call back for a possible referral to another neurologist in the area who DOES treat PANDAS...but the nurse did not sound hopeful...I have a new Rx for Azith to carry us through June...but what if he develops a resisitance to that in the meantime...and then after June...then what?

 

How exactly does a neurologist NOT take a case from her partner...when she knows my son in smack in the middle of another episode...as she had to help us out last week when my Dr. was out of town...I was told today that was a one time thing...

 

I don't know right now if I want to scream or cry...

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Dear Lisa,

This other neurologist should be sued for malpractice. Has he/she read the hypocratic oath (sp). I almost wish that everyone on the forum could write him/her a letter expressing our shock that they would not agree to treat a child and a family dealing with a crisis. I'm not exaggerating right? When our kids have a backslide/episode everything as we know it falls apart.

 

It really would not help for us to write letters because even if that dr. agreed to treat your son. You would not want them to anyway unless they believed in the diagnosis and studied successful treatments.

 

Have you tried to find a D.A.N. (Defeat Autism Now) doctor in your area? I go to one even though my son does not have autism. Many autistic kids have PANDAS from what this doctor told me. Even though the DAN dr. I see is not very knowledgeable about PANDAS he is willing to do the antibiotics and I am set up to have appt. with an immunologist and Dr. K in Chicago via phone consult.

 

Just a thought, the DAN docs seem to really look at the whole picture and look outside the box.

 

My heart goes out to you...

 

 

 

 

quote name='Lisa1971' date='Oct 13 2009, 01:46 PM' post='40924']

After months symptm free, last week Alex starting ticking again...he had had a swollen gland a week prior that had gone away with a increase of antibiotics and motrin at the suggestion of our neurologist...then woke up one morning with a fever, glassy eyes, headache, runny nose...brought him to the pediatrician to find it was strep...

 

obviously this means he has grown a resistance to the prophalactic Omnicef...Pediatrician gave him 10 days of Cleocin which is not penicillian based...we are on day 6 with drastic reduction in tics...

 

Now here's the BAD news...my neurologist is moving in two weeks...to Nebraska...I'm in NC...and the other neurologist in the practice will not take my son's case because she 'does NOT treat PANDAS'...and my ped is only cooperating at this point because I had a neurologist make an actual diagnosis who is handling most of his care...I am waiting on a phone call back for a possible referral to another neurologist in the area who DOES treat PANDAS...but the nurse did not sound hopeful...I have a new Rx for Azith to carry us through June...but what if he develops a resisitance to that in the meantime...and then after June...then what?

 

How exactly does a neurologist NOT take a case from her partner...when she knows my son in smack in the middle of another episode...as she had to help us out last week when my Dr. was out of town...I was told today that was a one time thing...

 

I don't know right now if I want to scream or cry...

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Where in NC are you? I can send you some names in the Charlotte area.

She is in Charlotte too - it's Dr. Nelson that is leaving for Nebraska. We took Meg's prescription out to May before he left, but we may also have issues locally - we'll see. If she has a immune deficiency, I think we'll be ok, but if not, our network has broken down a little. We are on the hunt again now. My understanding is that his partner is willing to treat "symptoms" of PANDAS, but is not a believer in antibiotic/IVIG treatment. (So SSRI for OCD, etc).

 

He refered us to NorthEast in Concord & I will try to get an appt there. I called ahead & the front would only tell me that they treat each case specifically, and that they usually start with supplements. So, I'm going to go interview them, but I am not confident as to whether this will be a solution for us or not. I may also just start looking for pediatricians and see if they will consult with Latimer and at least be the antibiotic/steriod side of the puzzle, as that is our main treatment at this point.

 

I remember, Claire, that you also mentioned Dr. James Lee? Would you recommend him at this point? Thanks - Susan

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Where in NC are you? I can send you some names in the Charlotte area.

She is in Charlotte too - it's Dr. Nelson that is leaving for Nebraska. We took Meg's prescription out to May before he left, but we may also have issues locally - we'll see. If she has a immune deficiency, I think we'll be ok, but if not, our network has broken down a little. We are on the hunt again now. My understanding is that his partner is willing to treat "symptoms" of PANDAS, but is not a believer in antibiotic/IVIG treatment. (So SSRI for OCD, etc).

 

He refered us to NorthEast in Concord & I will try to get an appt there. I called ahead & the front would only tell me that they treat each case specifically, and that they usually start with supplements. So, I'm going to go interview them, but I am not confident as to whether this will be a solution for us or not. I may also just start looking for pediatricians and see if they will consult with Latimer and at least be the antibiotic/steriod side of the puzzle, as that is our main treatment at this point.

 

I remember, Claire, that you also mentioned Dr. James Lee? Would you recommend him at this point? Thanks - Susan

 

Dr Nelson recommended NorthEast to us too...waiting on the referral paperwork to go through...I was told by Tina, Dr. Nelson's nurse that his partner Dr. Wallace does not treat PANDAS period...she flat out refused to take Alex's case...we have an Rx of Azith to last us through June (which is when we had previously decided to test taking him off them completely)...my pediatrician is still being a jerk about the whole thing so we are now on the hunt for a new one of those also...

 

On a positive note...Alex's latest episode seems to be on the decline...and never progressed past shoulder and hand wiggles...

 

I am wondering, though...if Dr. Nelson is going to be replaced...and if so if we can get lucky enough they get another PANDAS neuro...all my doctors are in the Presbyterian network...and Northeast is CMC...which is slowing down the process....luckily both are covered by my insurance...

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My understanding is that his partner is willing to treat "symptoms" of PANDAS, but is not a believer in antibiotic/IVIG treatment. (So SSRI for OCD, etc).

 

It puzzles me that docs seem to think "treating the symptoms" (as if that actually works) but ignoring the underlying auto-immune problem is an acceptable way to treat PANDAS. I just don't get it.

 

If you had any other disease.....for example a treatable yet cancerous brain tumor in a child, that was causing, for example, seizures...would a doc say, "I just want to treat the symptoms, let's leave the tumor alone, no radiation or surgery for your child...we'll just try to control the seizures with these pills--??" You would think he was crazy...yet docs do this to PANDAS kids all the time!!

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My understanding is that his partner is willing to treat "symptoms" of PANDAS, but is not a believer in antibiotic/IVIG treatment. (So SSRI for OCD, etc).

 

You should ask these docs, "What studies have been done to show that symptomatic treament of PANDAS children, without addressing the underlying cause of the symptoms, is safe and effective?" ....b/c ha ha there are no studies!! On the other hand there are studies to show that abs/Azith/PEX. are safe/effective treaments for PANDAS...

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I actually like that question - I will use it. I said something similar to our therapist. Combine that with long-term anti-biotic use for acne, and that's a question!

 

But I just can't waste time with doctors that are FIRMLY "against" PANDAS treatment. I'll spend any amount of time helping to educate an interested doctor. Whatever they need! Heck, I'll wash their windows if that will help them have time to read the studies. But I just can't beat my head against the wall. It's kind of a war plan - I bet I will have to interview 10 docs to replace this one - so no time to waste!

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My understanding is that his partner is willing to treat "symptoms" of PANDAS, but is not a believer in antibiotic/IVIG treatment. (So SSRI for OCD, etc).

 

It puzzles me that docs seem to think "treating the symptoms" (as if that actually works) but ignoring the underlying auto-immune problem is an acceptable way to treat PANDAS. I just don't get it.

 

If you had any other disease.....for example a treatable yet cancerous brain tumor in a child, that was causing, for example, seizures...would a doc say, "I just want to treat the symptoms, let's leave the tumor alone, no radiation or surgery for your child...we'll just try to control the seizures with these pills--??" You would think he was crazy...yet docs do this to PANDAS kids all the time!!

 

 

Here's my word of the day...."OPTIONAL"...as apparently when it comes to PANDAS the medical community has decided...it is optional whether or not to believe it exists, optional whether or not to treat a patient with it, optional as to what the best course of treatment is, optional as to whether or not to treat the underlying cause, optional as to what the underlying cause actual is, optional as to whether insurance will cover said treatments.....and apparently when it comes to their hippocratic oath...and doing what is in the best interest of the patient...turning their back on a sick child...is also an option...

 

sorry...I've had my fill of ignorant doctors and incompetent administrators for the week...

 

--Lisa

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