the latest and not so greatest

[saidie10]

So, i spent all day on the phone and fax yesterday. Hoped we would get in to see Immunologist at TX Childrens. Sent three page fax to his Nurse for him to review, spent twenty minutes on the phone registering them in order to get an appointment and the kicker at the end, "our next available new patient appt is on April 11, 2011!" LMAO! then the nice phone center operator said now let me have your email address so we can send you reminders of your appt date and time. LMAO. then the nice phone center operator said i will also send a link for directions and parking information and valet parking is about $16.00 but it might be higher next year." LMAO again.

 

The nicest thing after all of this was though that the doctor personally called me right after he read the fax. So, the man who's waiting list is a year for a new patient appt. can call a worried mom and express his sympathy and concern and i can't even get my son's current Neurologist to call me back. UNFREAKING BELIEVABLE. Saddest part of the day though is this man was so wonderful and talked with me for while, but he can't help the boys. His hands are tied he said. He said that Hospital guidelines dictate he goes by the NIMH and APA guidelines for treating "PANDAS". They only treat the neurological symptoms (OCS and tics with proper medication). We talked for a while and I could tell he wished he could help us. Oh well. Glad I will get a reminder so I can cancel my appointment next year! Guess we will definitely have better luck with someone in private practice who has a little more flexibility to think outside the box.

 

We do have an appt scheduled with the first Neurologist we saw for my oldest over a year ago on May 25th. I will be calling them today to make sure they don't bother calling in a referral for the TX Children's to try and get me in faster. I will also make sure that the Doctor does and is willing to treat with Antibiotic if necessary before going to that appt.

 

So going to Pedi today to see what she thinks. I believe these are my options. WWYD?

 

1. See Pedi and/or Immunologist in Dallas who based on my information are seeing and treating PANDAS

2. Phone consult with Dr. K or Dr. B or Dr. L. (Dr. T has yet to return my email or phone message)

3. Wait and see what this other Neurologist does

 

Any advice appreciated.

[thereishope]

The doctor whose hands are tied, if you have a way to contact him, you could ask if he knows of any colleagues in near by states that treat. Otherwise, is it at all possible for you to travel?

 

When can you get into the immunologist (not the 2011 one).

 

I had a similar expericne when trying to find a psychologist. we were on the "Emergency waiting list' and it still took 5 months to get in.

[CandKRich]

.

Edited August 12, 2013 by CandKRich

[Iowadawn]

Saidie10-

 

What does LMAO mean?? HA. Only a minute to respond. We were out to see Dr. K a month ago for our son's second IVIG. In one point in our conversation when we were discussing what to do about our denial of appeal to BCBS he responded that in Jan of this year he sat down with Dr. Swedo at the NIH. He said to tell the insurance co. that the protocol he is using to treat PANDAS is accepted by the NIH now. I think until the July 18 meeting with the bigtime naysayers (who aren't really naysayers now. Just trying to save face at this meeting IMHO) not a whole lot will change. I asked him again to make sure I heard him correctly about what to tell the insurance co., and he said that was correct. We used it, along with some other things he told us to include, handed all this off to a benefit person at DH work and 24hr later we had approval + approval for any additional treatments through Oct. PM me if you need anything. BTW-our boy is back in school after a semester away. We are steadily seeing improvement. Pretty bumpy week 2-3, but we are moving in the right direction.

[sf_mom]

I too heard similar from Dr. K in Feb. I believe he had just returned from NIMH at that time. He working very hard on a couple of things.

 

* Publishing his case history so more Dr.'s become accepting

* Helping to create guidelines for NIMH IVIG trail for PANDAs

* Clinical presentation of PANDAS and potential treatment protocol so more Dr.'s are treating

* Ultimately, working towards it being approved for insurance purposes so more children can be treated

 

-Wendy

[sf_mom]

I would definitely consult with a PANDAS specialist. If Dr. T is not returning your calls try another Dr.

 

-Wendy

[britneymag]

saidie10,

 

Did you ever call Dr. Stewart and Dr. Taylor's office? I know they have a wait but it is not a year form now. That is crazy!!! They treat the cause and not the symptoms. Dr. Stewart is even going to be speaking at the Autism one conference so they are well versed in Pandas and Autism both.

 

Melanie

[Fixit]

I am very happy with Scott SMith in Melbourne FL

......i startd with a very good consulted with doc k,,then was helped by doc T....and i was wavering between Doc B and Scott for more avenues before i jump to ivig..

as per Stephanie2 and laurajohnsonsmom information...i felt for now it would do me well to get someone as close as possible....Scott does do ivig...we are not there just yet...

I tell people i am working with 3 doctors all across the country as i may go back to any and all and would never cross a knowledgeable caring doc off my list.....and Doc b may get a vist also..who knows....especially with ds allergy problems....he may be next on my hit parade....

[Doug]

Call dr K

ASAP!!!!

He will get it done

Tracie

[saidie10]

Thanks guys for all the responses. Well pedi appt went as we thought. She would love to help but because of exactly what I said below and what was in the parents article published recently, there is a standard of care to follow and because of the American Pediatrics Association and the NIMH, etc. etc. etc. she is not even willing to consult with a specialist in PANDAS who is willing to try the treatments. SO, we are off on another road. We do have an appt. scheduled for both boys with a Neurologist in Houston on May 25th. Hopefully I will be able to confirm before I go that he is an "outside of the box" thinker. I also have calls and faxes out to an Immunologist in Dallas along with an Infectious Disease Doctor, and to Dr. Stewart in Austin as well. Thank you guys so much for the contacts. I plan on sending my 3 page overview to Dr. K on Monday and we are seriously thinking about at least a phone consult and going from there.

 

Been a long exhausting week but DS5 is MUCH better today thank goodness.

 

So, i spent all day on the phone and fax yesterday. Hoped we would get in to see Immunologist at TX Childrens. Sent three page fax to his Nurse for him to review, spent twenty minutes on the phone registering them in order to get an appointment and the kicker at the end, "our next available new patient appt is on April 11, 2011!" LMAO! then the nice phone center operator said now let me have your email address so we can send you reminders of your appt date and time. LMAO. then the nice phone center operator said i will also send a link for directions and parking information and valet parking is about $16.00 but it might be higher next year." LMAO again.

 

The nicest thing after all of this was though that the doctor personally called me right after he read the fax. So, the man who's waiting list is a year for a new patient appt. can call a worried mom and express his sympathy and concern and i can't even get my son's current Neurologist to call me back. UNFREAKING BELIEVABLE. Saddest part of the day though is this man was so wonderful and talked with me for while, but he can't help the boys. His hands are tied he said. He said that Hospital guidelines dictate he goes by the NIMH and APA guidelines for treating "PANDAS". They only treat the neurological symptoms (OCS and tics with proper medication). We talked for a while and I could tell he wished he could help us. Oh well. Glad I will get a reminder so I can cancel my appointment next year! Guess we will definitely have better luck with someone in private practice who has a little more flexibility to think outside the box.

 

We do have an appt scheduled with the first Neurologist we saw for my oldest over a year ago on May 25th. I will be calling them today to make sure they don't bother calling in a referral for the TX Children's to try and get me in faster. I will also make sure that the Doctor does and is willing to treat with Antibiotic if necessary before going to that appt.

 

So going to Pedi today to see what she thinks. I believe these are my options. WWYD?

 

1. See Pedi and/or Immunologist in Dallas who based on my information are seeing and treating PANDAS

2. Phone consult with Dr. K or Dr. B or Dr. L. (Dr. T has yet to return my email or phone message)

3. Wait and see what this other Neurologist does

 

Any advice appreciated.

[poetmom]

We see Dr Mazade in Fort Worth and I really like him....

[saidie10]

Hey! I do have a call in with him along with sending him a synopsis of the boys. Does he think outside the box or just treat symptoms? Will he prescribe antibiotics? Thanks and what can we expect if and when we get in to see him?

 

We see Dr Mazade in Fort Worth and I really like him....

[trggirl]

Hi, We had a similar experience with Neurology at Texas Children's in Houston although the people we met with were not particularly nice. They acted like I was crazy. They were aware of the studies, they just didn't buy off on them. They knew all the controversy surrounding them. It was a very frustrating experience. After 3 different doctors in the Houston area, we flew to see Dr. Latimer.

 

Please keep us updated if you find doctors that are good in Houston and Texas. At the moment, I have given up.

[poetmom]

Dr Mazade has my ds on abx now. He was adamant in the beginning my ds remain on full dose a while long and then be on prophylactic abx although I initially had fears about long term abx at the time.

He seems to clearly understand the cause/effect of strep in PANDAS as well as any of us do and does not in anyway question the validity of such a diagnosis.

 

He does seem to have a pretty strict definition of PANDAS criteria. He has said he sees lots of kids whose parents are unhappy with a "not PANDAS" diagnosis, but felt their kids were clearly OCD, Tourette's, Autistic, etc. He NEVER ONCE questioned whether my son was PANDAS. I'm not sure I could agree or disagree with a diagnosis of "not PANDAS" in another child as I'm neither a medical professional nor am I confident I could intimately understand quite the dynamics of someone else's story to make that call...but that has been the only negative criticism I've personally heard of him, for what it's worth.

[tpotter]

I totally feel for you. Had an even worse experience at CHOP (Children's Hospital of Philadelphia). When my DS was hospitalized last year (admitted via ambulance as a transfer from local hospital for 4 days with Syd. Chorea, Scarlet Fever, 104 degree temp, and suspected ARF.) I told them he was already diagnosed with PANDAS. Neurologist told me it was "voodoo!" I called all the other neurologists...they refer only to psych. Went to immunol. there (after being told that they DO tx PANDAS.) Left there in tears (obviously they don't.)

 

Personally, I wouldn't spend time with Dr. T. (my personal opinion based on experience...and it is all I will say online.)

 

1) If you have Pedi and Immunol. in Dallas who are seeing and treating PANDAS, I would go there (if they wait time is fast.)

 

2) Phone consult with Dr. K. would be good if you have someone locally who will follow his directions (he will consult with your dr. afterwards, and tell him what tests, meds, etc. to do.)

 

3) I don't know if Dr. B. can do anything more for you than Dr. K. (only because I haven't seen him...but have heard wonderful things about him.)

 

4) Dr. L. is fantastic, and can do PEX if she thinks it is warranted (only person I know who will do it.) Personally, I prefer PEX to IVIG, but again...my personal opinion.