Frustrating Visit!

[missionmom]

Well, met a brick wall yesterday. Literally, a human brick wall. I went to DS21's neurology appt yesterday (keep in mind he had a full blown grand mal ....old language....seizure last summer that was chalked up to an aberrant medication reaction), armed with tests so far and our concerns. After asking why all his symptomology hadn't been shared before, DS son he and we didn't realize there was any connection between these odd symptoms - and no one ever asked! He proceeded to tell us that PANDAS/PANS etc was "theoretical" and generally not accepted. He also explained that DS tics (head jerking, nose wrinkling, mouth stretching, etc) weren't that bad as he's seen people who have to kiss the floor with every step they take. All he could offer was meds for the tics.

 

I was so frustrated. First, I handed him a copy of Swedo's PANS/PANDAS description (thank you to poster) and he made a copy (okay, give him that). I informed him that the med said it may cause seizures in people with a low thresh-hold for seizures (who knew). Also, for all the symptoms you read here, that DS has and has had coming and going for 15 years, you offer him a med aimed at one of them? !!! He said he really couldn't help any more than that. He was dismissive, condescending, and actually checking his watch after 20 of the 60 minutes we were supposed to have. Is anyone else out there tired of a doctor thinking they know your child better than you after 15 to 20 minutes with a rubber hammer?

 

Thanks for letting me vent. Rheumatologist today, any advice, input would be welcomed. I know most of you have already been here.

[dcmom]

My advice would be not to waste your time, to go see a pandas specialist. Many her have wasted time, money and emotional energy on doctors not willing to treat pandas. I think the best route is to work backwards if you want to find someone local to you. See a pandas doc for testing, diagnosis, and treatment plan. Once you have positive response to treatment, you can then walk into a local (open minded) specialist armed with test results, diagnosis, and positive response to treatment- you are more likely to get some help then.

 

Sorry- I know this is blunt

[LaurenK]

Where do you live? We live by NYC and haven't had any problems, all neurologist have been very open minded and treated aggressively with immmunosuppressants.

[LaurenK]

Where do you live? We live by NYC and haven't had any problems, all neurologist have been very open minded and treated aggressively with immmunosuppressants. Our local ped on the other hand is a piece of work.

Edited February 28, 2012 by LaurenK

[PowPow]

Follow dcmoms advice. Get to a pandas doc.

 

I imagine you might get a bad response- especially being that your son is 21.

That is great that LaurenK has had good response, maybe if you are near NYC you can get some names from her

 

I would go to a pandas doc. Sorry it was so frustrating.

 

We have seen a great rheumatologist/integrative med/ LLMD who might be able to help you (if you happen to live near Northern Virginia;)

[nevergiveup]

Because of ur sons seizures, I recommend u see a pandas expert who is also a neurologist, Dr Latimer in bethesda maryland, would have the background to handle both. What city r u in, if u r in cincinnati I could recommend a rheumatologist who may be able to help.

[T_Mom]

I am so sorry -- what an incredibly frustrating day! I can relate, having seen multiple doctors for about a year before FINALLY finding one that knew how to treat PANS/PANDAS. A normal, mainstream doctor even!

Save yourself the time, and money! Go to the list of doctors that others have used that know about PANDAS and get your child there--it is the only way to get help. (Can you tell I have given up trying to educate or "convince" the doctors we see personally--forget it, your child deserves to be treated.)

[peglem]

Well, I live out here in AZ, have had one consult w/ a PANDAS expert (Dr.L in Bethesda), but have managed to sort of patch together a network of local physician's to treat my child. If I lived closer to an expert, it would be more feasible to see one on a regular basis. The one trip we did take, because of the severity of my child's issues, made it clear that we just could not do that on any kind of a regular basis. So, while the ideal would be to just go to a PANDAS expert, that is not always a real option.

 

Here's how I've handled appointments with new specialists when I am unsure what their PANDAS stance is: I never say PANDAS or attempt to educate them about it. I tell them my child's history, what behaviors/symptoms I see triggered by strep (or whatever illness). I explain what treatments we've done and what effect they've had on symptoms. Then I ask for their expert opinions/advice. Sometimes I get some good ideas that I'd never thought of before suggestions for testing to investigate, sometimes they bring up PANDAS as a possibility, and sometimes I get a pretty good indication that this is not someone who will be helpful to us. We are very lucky to have a primary care physician for our daughter who is a great advocate for her w/ specialists and chooses very carefully who she gets referred to.

[tpotter]

Well, met a brick wall yesterday. Literally, a human brick wall. I went to DS21's neurology appt yesterday (keep in mind he had a full blown grand mal ....old language....seizure last summer that was chalked up to an aberrant medication reaction), armed with tests so far and our concerns. After asking why all his symptomology hadn't been shared before, DS son he and we didn't realize there was any connection between these odd symptoms - and no one ever asked! He proceeded to tell us that PANDAS/PANS etc was "theoretical" and generally not accepted. He also explained that DS tics (head jerking, nose wrinkling, mouth stretching, etc) weren't that bad as he's seen people who have to kiss the floor with every step they take. All he could offer was meds for the tics.

 

I was so frustrated. First, I handed him a copy of Swedo's PANS/PANDAS description (thank you to poster) and he made a copy (okay, give him that). I informed him that the med said it may cause seizures in people with a low thresh-hold for seizures (who knew). Also, for all the symptoms you read here, that DS has and has had coming and going for 15 years, you offer him a med aimed at one of them? !!! He said he really couldn't help any more than that. He was dismissive, condescending, and actually checking his watch after 20 of the 60 minutes we were supposed to have. Is anyone else out there tired of a doctor thinking they know your child better than you after 15 to 20 minutes with a rubber hammer?

 

Thanks for letting me vent. Rheumatologist today, any advice, input would be welcomed. I know most of you have already been here.

 

 

Since your ds is having seizures, I would recommend that you see either one of the neurologists that LaurenK has found or Dr. L, since she is a neurologist, and one of the top PANS docs! Please don't waste your time with the docs in your area.

[mkur]

So Sorry - don't waste your time and money trying to change these dr's minds. You have to follow your gut.

[Mayzoo]

Every visit with our kiddos neurologist is frustrating, but I am learning to not let it get to me. We only see him to keep a neuro-ophthalmology doc accessible at our Scottish Rite Hospital. If we don't stay current with a primary in neurology, she cannot keep seeing the eye doc .

 

Her neurologist at SRH has always stated that every symptom she exhibits is strictly behavioural . When she screams in pain for days on end until exhaustion overtakes her after about 6-8 hours of screaming, this is also behavioural in his opinion. DD has confirmed diagnoses by this neuro of Arnold Chiari Malformation, syringiomylia, arachnoid cyst, autism and torticollis....yet no matter her symptom....it is behavioural. Of course, we do not rely on this doc for actual care, we go elsewhere. I gather he feels her symptoms are behaviours she could control, but since I allow them, she does not control herself. In other words, he thinks it is bad parenting.

 

I have not even broached the subject of PANDAS with him yet since when I took her in for an eval recently (and naive me, I presented him with all her symptoms hoping for some actual help), again all her symptoms were behavioural according to him. I only later read up on PANDAS on my own. His office only knows of her strep infection incidentally since the MRI he ordered had to be canceled twice due to the strep.

 

You are not alone with the frustration with neuros. All I can say is good luck, and I hope you can find a doc that will listen to you.

[mkur]

So Sorry - don't waste your time and money trying to change these dr's minds. You have to follow your gut.

[missionmom]

Near SF CA, any suggestions?

[missionmom]

Well, I live out here in AZ, have had one consult w/ a PANDAS expert (Dr.L in Bethesda), but have managed to sort of patch together a network of local physician's to treat my child. If I lived closer to an expert, it would be more feasible to see one on a regular basis. The one trip we did take, because of the severity of my child's issues, made it clear that we just could not do that on any kind of a regular basis. So, while the ideal would be to just go to a PANDAS expert, that is not always a real option.

 

Here's how I've handled appointments with new specialists when I am unsure what their PANDAS stance is: I never say PANDAS or attempt to educate them about it. I tell them my child's history, what behaviors/symptoms I see triggered by strep (or whatever illness). I explain what treatments we've done and what effect they've had on symptoms. Then I ask for their expert opinions/advice. Sometimes I get some good ideas that I'd never thought of before suggestions for testing to investigate, sometimes they bring up PANDAS as a possibility, and sometimes I get a pretty good indication that this is not someone who will be helpful to us. We are very lucky to have a primary care physician for our daughter who is a great advocate for her w/ specialists and chooses very carefully who she gets referred to.

Good advice

[EAMom]

Near SF CA, any suggestions?

 

Here's from the helpful doc list (I added some edits and comments):

Dr. Brock Bernsten

3838 California St.

San Francisco, CA

Phone: (415) 666-1860

 

Our Pediatrician, was willing to listen and support whatever recommendations immunologist made including open IVIG order if required. Willing to do additional research but not very familiar with PANDAS

 

 

Frederick A. Lloyd, M.D.

Palo Alto Center

795 El Camino Real

Palo Alto, California 94301

Phone: (650) 853-2992

 

Has several PANDAs patients, knows Margo Thienemann, listens well, responsive, will provide antibiotics in conjunction with other Dr. recommendation, open to IVIG prescription if recommended by another Dr.

 

 

Sean McGhee

Pediatric Immun. & Infectious Disease

300 Pasteur Dr

CCSR 2115B

Stanford, CA 94305-5164

(650) 498-4189

 

 

Margo Thienemann MD

900 Welch Road

Suite 207

Palo Alto CA 94304

Phone mail: 650 324 3241

 

Dr. Thienemann (child psychiatrist) is one of the docs who was involved on the PANS paper. She has many PANDAS patients. She's our main "pandas doc". We've had IVIG through Dr. McGhee. If you are already diagnosed through Dr. Theinmann that is helpful.

 

I would also recommend contacting SFMom...she may have additional recommendations. I know she sees a Lyme doc who does a really good job of looking for infectious triggers.

 

Also, AmyJoy is North of SF, she's in the medical field....I believe she works at a place where they can do IVIGs.

 

Also, contact Diana Pohlman at PANDASnetwork.org --she is Bay Area and may have additional recommendations.