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Help! I just don't understand


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I need help!!!

I just don't get how doctors can be so clueless on how to treat Pandas. I live in a small town and the doctor that my grandson sees is two hours from me, and this doctor only sees my grandson every 6 months. He saw him July 9 of this year, Corbin was doing OK that day.

Two days later he was jerking so bad he could not hold his spoon. I called the doctors office to tell him what was going on. They told me the doctor was on vacation and just go on and up his meds.

This has been going on for two years now. I just got off the phone with a doctor from CRS.

She said if my grandson gets strep this year, and starts jerking out of his skin. That no medication will stop him from jerking.

"WHAT" I hung up on her.........She has to be wrong about this........Please someone help me out on this one.

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I feel badly for you and no one has responded. Here is a list of DAN doctors in Arizona. Don't know if any of them can help but you should try at any rate. Call and ask them if they can help with PANDAS.

 

 

 

Geoffrey Radoff, M.D., M.D.H.

Alternative Medical Care of AZ

2525 West Greenway Rd., Ste. 210

Phoenix, AZ 85023

ph: 702-755-6475

fax: 602-993-0207

Cindy Schneider, M.D.

Center for Autism Research and Education

4045 E. Union Hills Drive, Suite 116

Phoenix, AZ 85085

ph: 602-277-2273

fax: 602-277-2283

Alan K. Ketover, M.D., M.D.H.

The Valley Clinic

10595 N. Tatum Blvd., Ste. E-146

Paradise Valley, AZ 85253

ph: 602-381-0800

fax: 602-381-0054

Matthew Baral, N.D.

Southwest Naturopathic Medical Center

8010 E. McDowell Rd., Ste. 111

Scottsdale, AZ 85257

ph: 480-970-0000

Jessica Tran, ND

8010 E. McDowell Rd., Ste. 111

Scottsdale, AZ 85257

ph: 480-970-0000

fax: 480-970-0003

Eli Ber, NMD

10752 N. 89th Place B213

Scottsdale, AZ 85260

ph: 480-634-6172

fax: 480-634-6975

Martha M. Grout, M.D., MD(H)

Arizona Center for Advanced Medicine

9328 E. Raintree Drive

Scottsdale, AZ 85260

ph: 480-240-2600

fax: 480-240-2601

Joel Morgan, NMD

Pediatric Solutions Medical Center

633 E. Ray Rd., Suite 110

Gilbert, AZ 85296

ph: 480-632-0757

fax: 480-619-6393

Maureen Schwehr, N.D.

621 N. 6th Ave.

Tucson, AZ 85705

ph: 520-623-1033

fax: 820-742-3846

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Did anyone ever mention the possibilty of PANDAS to you prior to that phone call?

 

How are your grandson's tics at the moment? Like the previous post said, try to find a doctor familiar with PANDAS. Also, until then, if your grandson's tics get very bad again, either drive that long way to have him seen in person (they may actually think you're exaggerating over the phone) and demand a strep test culture. Granted, as other will say, it doesn't always come out + even with PANDAS, but it is a start in trying to figure out if there's a connection. Also, if they are off the charts, if it's okay to take with his other meds, give him a regular dose of Ibruprofen, give it an hour, and see if it helps at all. But first, make sure it's ok to combine w/ other meds. If needed, call a pharmacist and ask if it's ok to take w/ existing meds.

 

Finally, does he have any other "symptoms" or odd behaviors when the tics are bad?

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Hi Judy,

I am really, really sorry for your grandson and for you--It breaks my heart to hear this.

The only thing that has helped us is long term antibiotics and a steroid burst.

We have not gone to the next step of IVIG or PEX--yet, but we may well need to.

 

There is a thread where people have listed doctors who were helpful that they have actually seen, it is under the "Helpful Threads" at the top of the PANDAS forum, perhaps there is someone on there that is not too far away from you--these are generated by parents.

 

It seems very odd that the doctor would say that if he is exposed to strep his ticcing will take off and that there is nothing that can help him...seems so contradictory.

 

You are right to be concerned and also to not give up.

Keep going.

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Just wanted to say HUGS and good luck. You have gotten good advice so far. I know that the search for a doctor is a hard one almost everywhere and especially in a small town. We use a Dan! doctor and that has been our best bet so far.

 

Susan

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Hi Judy,

 

Sorry to hear you are having such a hard time finding help for your Grandson. I'm wondering what type of Doctor you have taken him to and if they have done any blood work on him other than the ASO & Dnase?

 

I would suggest trying an Immunologist is you haven't already. In the last month or so, we have discovered a lot of these kids have immune systems that aren't functioning correctly. You should check into having the following blood work done:

 

IGG & IGG Subclasses

IGM

IGA

Pneumococcal Titers Test

Diptheria Titers Test

Tetanus titers Test

 

Go to this website and you can search for one in your area: www.jmfworld.com or you can call the Immune Deficiency Foundation at 800-296-4433

 

Sam

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Judy, what medication is your grandson currently on? and what dose (how much does he weigh)?

 

From reading your old post 2/2008 he sounds likes PANDAS. Is he on prophylactic Azith? advil? Has he ever had a steroid burst?

 

Also, some find it helpful to make a video of their kids tics/movements to show a doctor...if the tics are not always present (or not always severe).

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I feel badly for you and no one has responded. Here is a list of DAN doctors in Arizona. Don't know if any of them can help but you should try at any rate. Call and ask them if they can help with PANDAS.

 

 

 

Geoffrey Radoff, M.D., M.D.H.

Alternative Medical Care of AZ

2525 West Greenway Rd., Ste. 210

Phoenix, AZ 85023

ph: 702-755-6475

fax: 602-993-0207

Cindy Schneider, M.D.

Center for Autism Research and Education

4045 E. Union Hills Drive, Suite 116

Phoenix, AZ 85085

ph: 602-277-2273

fax: 602-277-2283

Alan K. Ketover, M.D., M.D.H.

The Valley Clinic

10595 N. Tatum Blvd., Ste. E-146

Paradise Valley, AZ 85253

ph: 602-381-0800

fax: 602-381-0054

Matthew Baral, N.D.

Southwest Naturopathic Medical Center

8010 E. McDowell Rd., Ste. 111

Scottsdale, AZ 85257

ph: 480-970-0000

Jessica Tran, ND

8010 E. McDowell Rd., Ste. 111

Scottsdale, AZ 85257

ph: 480-970-0000

fax: 480-970-0003

Eli Ber, NMD

10752 N. 89th Place B213

Scottsdale, AZ 85260

ph: 480-634-6172

fax: 480-634-6975

Martha M. Grout, M.D., MD(H)

Arizona Center for Advanced Medicine

9328 E. Raintree Drive

Scottsdale, AZ 85260

ph: 480-240-2600

fax: 480-240-2601

Joel Morgan, NMD

Pediatric Solutions Medical Center

633 E. Ray Rd., Suite 110

Gilbert, AZ 85296

ph: 480-632-0757

fax: 480-619-6393

Maureen Schwehr, N.D.

621 N. 6th Ave.

Tucson, AZ 85705

ph: 520-623-1033

fax: 820-742-3846

 

Thank you so much for this list, I am crying right now..just reading the replys..I can't tell you how much all of you have helped..

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Hi Judy,

 

Sorry to hear you are having such a hard time finding help for your Grandson. I'm wondering what type of Doctor you have taken him to and if they have done any blood work on him other than the ASO & Dnase?

 

I would suggest trying an Immunologist is you haven't already. In the last month or so, we have discovered a lot of these kids have immune systems that aren't functioning correctly. You should check into having the following blood work done:

 

IGG & IGG Subclasses

IGM

IGA

Pneumococcal Titers Test

Diptheria Titers Test

Tetanus titers Test

 

Go to this website and you can search for one in your area: www.jmfworld.com or you can call the Immune Deficiency Foundation at 800-296-4433

 

Sam

Sam, Thank you for this phone number I'm going to get on the phone right now!

Corbins doctors don't seem to know anything about PANDAS, I know they are trying but they just don't have the info to help Corbin.

Thank you...I'm still trying, To get use to useing this Forum I don't know if I'm useing it right when I reply.

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Did anyone ever mention the possibilty of PANDAS to you prior to that phone call?

 

How are your grandson's tics at the moment? Like the previous post said, try to find a doctor familiar with PANDAS. Also, until then, if your grandson's tics get very bad again, either drive that long way to have him seen in person (they may actually think you're exaggerating over the phone) and demand a strep test culture. Granted, as other will say, it doesn't always come out + even with PANDAS, but it is a start in trying to figure out if there's a connection. Also, if they are off the charts, if it's okay to take with his other meds, give him a regular dose of Ibruprofen, give it an hour, and see if it helps at all. But first, make sure it's ok to combine w/ other meds. If needed, call a pharmacist and ask if it's ok to take w/ existing meds.

 

Finally, does he have any other "symptoms" or odd behaviors when the tics are bad?

Hi Vickie,

Thank you for your input! I will try the Ibruprofen I think that will help with the pain. Corbin can jerk so hard..it hurts his neck.

They did up his Clonidine from 3mg to 4mg four days ago, by phone. It it slow the jerking for one day..they came back today..I'm callilng his doctor today to let him know.

I just don't think it is a good idea to up meds by phone.

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Judy, what medication is your grandson currently on? and what dose (how much does he weigh)?

 

From reading your old post 2/2008 he sounds likes PANDAS. Is he on prophylactic Azith? advil? Has he ever had a steroid burst?

 

Also, some find it helpful to make a video of their kids tics/movements to show a doctor...if the tics are not always present (or not always severe).

 

 

Good Morning,

Thank you so much for replying to my post, Corbin is taking Clonidine 1mg 4 times a day. They just upped the meds by phone 4 days ago..Corbin was taking 1 at night and now he is taking 2. It did help the jerking for a day..it came back today..my heart just broke for him..he had said " Look no Jerking" last night..

I'm calling his doctor today, right now..!

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Hi Judy...

 

You should definitely make sure he has a throat culture (do the 72 hour culture if the rapid is negative) right away (before starting antibiotics). If he is postive, that is more evidence for the PANDAS diagnosis.

 

I don't know much about clonidine...but what I do know is that if your grandson is PANDAS he needs to be on antibiotics. Most on this forum find Azithromycin to be the most helpful, but others are on augmentin, keflex, etc. How much does he weigh? I would recommend a 1 mo. trial of Azithromycin even if the throat culture is negative. Sometimes strep hides out in the sinuses where it isn't easily cultured. I would also add on and Advil (motrin, ibuprofen) trial since many pandas parents find that also helps symptoms.

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Judy, got your PM but I can't reply to you for some reason so I wanted to reply here, hope that is OK...

 

It stands for Defeat Autism Now! DAN! They have specific protocol that they follow for autism but from what I have found, it touches what we deal with with PANDAS kids since many of the conditions or symptoms are similar. If you search on Defeat Autism Now or Dan! Doctors, you will probably get a lot of good reading on the internet.

 

Our Dan! doc has us on all types of natural supplements to support the girls systems and calm them down, etc.

 

Good luck to you !!

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