Went to UC Irvine Immunologist Today, We need to move to East Coast

[momtocole1]

I took my son to see Dr. Sudhir Gupta, Immunologist at UC Irvine in So. Cal. I don't know why I felt so defeated. I already knew that he was not well educated on PANDAS.

 

On my son's bloodwork he had negative strep titers and his Anti-Dnase B was normal.

 

The doctor said that he is concerned that those are the indicators of PANDAS.

 

I told him all about Dr. Cummingham's test and that my son's Cam Kinase II was at 165. He looked at me as if I were a martian. Again, I should not have been surprised by this.

 

He has only treated a couple of children with PANDAS with IVIG.

 

The biggest problem is that I did not have my son's IgG numbers from the lab. They did not get enough blood, so they could not run them.

 

Now I have to take him to the lab for the third time.

 

Dr. Gupta said, "Well, there has only been one study on PANDAS and Dr. Swedo isn't really doing anything with PANDAS anymore. I tried to show him the JNI article on the CAM II and he just glazed over again.

 

I just burst into tears, I put my hand on his arm and said, can't you please help my son. He is so pale, he has huge dark circles under his eyes. He keeps getting impetigo sores on his mouth and he has severe OCD.

 

He said, that I should get the blood work done and he would see us in 2 1/2 weeks.

 

We have a phone consult with Dr. K. on November 17th and I'm sure that will be really insightful, but in the meantime, I feel like we need to move to the East coast. The doctors there are so much more open and well educated on PANDAS.

 

He also said that Blue Shield of California is the very worst at covering IVIG, which really sent me downhill.

 

I just wish that money was no object and that my son was not so full of anxiety and I could just get on a plane with him and fly to Chicago or Maryland to see Dr. K or Dr. Lattimer.

 

Sorry, just venting.

 

I don't even know what to show him when I go back, but I am going to create an arsonal of information. Diana Pohlman is going to help me put a "book" together for little Mr. Dr. Gupta to educate him on PANDAS. Lots of Luck, right... Sorry so negative, I'm just so sad.

 

My son was doing so well on the high dose augmentin and ever since his dental work last week, he has been backsliding quickly.

 

Thanks for listening/reading...

 

If anyone has anything for my arsonal, please let me know...

 

Judy...

[P_Mom]

Judy....since you need to do blood work again....ask them to do an Epstein Barr virus panel. My older son was so pale with dark circles/fatigue one year...coupled with an increase of symptoms....turns out he was battling a current Epstein Barr infection. Just a thought since you are getting the draw anyway......

 

Kelly

[dabel]

I took my son to see Dr. Sudhir Gupta, Immunologist at UC Irvine in So. Cal. I don't know why I felt so defeated. I already knew that he was not well educated on PANDAS.

 

On my son's bloodwork he had negative strep titers and his Anti-Dnase B was normal.

 

The doctor said that he is concerned that those are the indicators of PANDAS.

 

I told him all about Dr. Cummingham's test and that my son's Cam Kinase II was at 165. He looked at me as if I were a martian. Again, I should not have been surprised by this.

 

He has only treated a couple of children with PANDAS with IVIG.

 

The biggest problem is that I did not have my son's IgG numbers from the lab. They did not get enough blood, so they could not run them.

 

Now I have to take him to the lab for the third time.

 

Dr. Gupta said, "Well, there has only been one study on PANDAS and Dr. Swedo isn't really doing anything with PANDAS anymore. I tried to show him the JNI article on the CAM II and he just glazed over again.

 

I just burst into tears, I put my hand on his arm and said, can't you please help my son. He is so pale, he has huge dark circles under his eyes. He keeps getting impetigo sores on his mouth and he has severe OCD.

 

He said, that I should get the blood work done and he would see us in 2 1/2 weeks.

 

We have a phone consult with Dr. K. on November 17th and I'm sure that will be really insightful, but in the meantime, I feel like we need to move to the East coast. The doctors there are so much more open and well educated on PANDAS.

 

He also said that Blue Shield of California is the very worst at covering IVIG, which really sent me downhill.

 

I just wish that money was no object and that my son was not so full of anxiety and I could just get on a plane with him and fly to Chicago or Maryland to see Dr. K or Dr. Lattimer.

 

Sorry, just venting.

 

I don't even know what to show him when I go back, but I am going to create an arsonal of information. Diana Pohlman is going to help me put a "book" together for little Mr. Dr. Gupta to educate him on PANDAS. Lots of Luck, right... Sorry so negative, I'm just so sad.

 

My son was doing so well on the high dose augmentin and ever since his dental work last week, he has been backsliding quickly.

 

Thanks for listening/reading...

 

If anyone has anything for my arsonal, please let me know...

 

Judy...

 

Hey Judy!!

 

I am so sorry to hear that you had a rough day. I think about you daily! Hopefully you and Diana can put something together for this guy and you will swing him your way and get the treatment your little guy needs. I am always here to chat if you need me. Hang in there - I know it's rough!

 

DeAnn

[peglem]

Oh, Judy, I'm so sorry it turned out this way. It sounds like he is just misinformed by the NIMH. Sure wish they would add new studies/information to that site.

But, I think you're going to be well prepared for next time, though. When we saw the Rheumy on Monday-the same one we saw 2 years ago, so I knew he was misinformed. I told him we wanted to revisit the PANDAS issue in light of current research and did tell him that the NIMH sight was outdated, having only information gleaned from the pioneer work.

The Cunningham studies (the ones she gave you with your test results) had been sent ahead w/ my daughters records from the pediatrician. The CamK numbers are meaningless to docs w/o knowledge of the research behind the study. He had looked at them, but only very quickly- I briefly explained my understanding (thank-you, Buster) of their significance, told him my pediatrician had spoken with Dr. Cunningham on the phone and invited him to give her a call- he said he would.

I brought with me to the appointment:

The mouse model paper- http://www.sarnet.org/doc/PANDAS_Mol_Psychiatry_2009.pdf which has very good evidence that PANDAS is indeed autoimmune.

 

And these 2 on treatment with PEX, IVIG:

http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf

http://www.turkpsikiyatri.com/en/default.a...icle&id=592

 

He said he needed time to look over the studies. So he ordered some blood work (yes, those darn ASO/AntiDnase titers. ) and we'll talk more about it in 2 weeks.

 

I suggest that you send the the information that Diana gives you before your next appointment, to give the doc a chance to look it over before hand...Its a lot of info, and it would be nice to spend the appointment discussing it instead of watching him read it! Also, try to avoid giving anecdotal info, like say, a discussion from this board...docs tend to discount that sort of thing. (don't want that crazyinternetmom label!)

 

Good Luck (why do I want to call you sweetie?) and please keep us updated!

[EAMom]

Oh my gosh...how frustrating

 

Blockhead docs!

 

Didn't SF mom have blue cross (blue shield?).

 

Is it too late for you to change insurance for 2010? United health care (PPO) might be good.

[sf_mom]

I do have Anthem: Blue Cross of CA PPO and it appears they covered some of the expense for Dr. K. Dr. fees they covered $1,800 of the $2,400 charged plus OBCS 'still figuring it out' and large % of the cost of IVIG medication. Unfortunately, our deductable was high at $5,000 so a lot got credited towards that for the first IVIG. Definitely, keep pursuing Dr. K.

 

Perhaps a steroid burst with Augmentin would help. Also keep exploring Epstein's Barr.... perhaps you could have your Pediatrician write the lab request to bring back to Dr. Gupta in 2 weeks.

[momofgirls]

I know that is frustrating but maybe you could arrange for either Dr K or Dr Cunningham to speak with your doctor. They can explain why the strep titers are often low. Also have him run tests for pneum strep titers to see if there is any sort of deficiency. That may help with insurance when building your case. Since you have a consult scheduled with Dr K I am sure he would be willing to consult Gupta. Also cunningham is willing to speak with doctors. Don't give up and good luck.

[Stephanie2]

Judy, check out this thread that I started a couple of weeks ago. I had great success with a practice in Melbourne, FL and I believe that they have a practice in California. See the thread and the doctor's website:

 

http://www.latitudes.org/forums/index.php?...p;hl=stephanie2

 

www.icdrc.org

 

Best of luck!

Stephanie

 

 

 

 

 

I took my son to see Dr. Sudhir Gupta, Immunologist at UC Irvine in So. Cal. I don't know why I felt so defeated. I already knew that he was not well educated on PANDAS.

 

On my son's bloodwork he had negative strep titers and his Anti-Dnase B was normal.

 

The doctor said that he is concerned that those are the indicators of PANDAS.

 

I told him all about Dr. Cummingham's test and that my son's Cam Kinase II was at 165. He looked at me as if I were a martian. Again, I should not have been surprised by this.

 

He has only treated a couple of children with PANDAS with IVIG.

 

The biggest problem is that I did not have my son's IgG numbers from the lab. They did not get enough blood, so they could not run them.

 

Now I have to take him to the lab for the third time.

 

Dr. Gupta said, "Well, there has only been one study on PANDAS and Dr. Swedo isn't really doing anything with PANDAS anymore. I tried to show him the JNI article on the CAM II and he just glazed over again.

 

I just burst into tears, I put my hand on his arm and said, can't you please help my son. He is so pale, he has huge dark circles under his eyes. He keeps getting impetigo sores on his mouth and he has severe OCD.

 

He said, that I should get the blood work done and he would see us in 2 1/2 weeks.

 

We have a phone consult with Dr. K. on November 17th and I'm sure that will be really insightful, but in the meantime, I feel like we need to move to the East coast. The doctors there are so much more open and well educated on PANDAS.

 

He also said that Blue Shield of California is the very worst at covering IVIG, which really sent me downhill.

 

I just wish that money was no object and that my son was not so full of anxiety and I could just get on a plane with him and fly to Chicago or Maryland to see Dr. K or Dr. Lattimer.

 

Sorry, just venting.

 

I don't even know what to show him when I go back, but I am going to create an arsonal of information. Diana Pohlman is going to help me put a "book" together for little Mr. Dr. Gupta to educate him on PANDAS. Lots of Luck, right... Sorry so negative, I'm just so sad.

 

My son was doing so well on the high dose augmentin and ever since his dental work last week, he has been backsliding quickly.

 

Thanks for listening/reading...

 

If anyone has anything for my arsonal, please let me know...

 

Judy...

[EAMom]

These are from Beth Maloney's (FB page under discussions) doctor list:

CALIFORNIA

 

Thomas Lin, MD

Irvine Kids` MD

4634 Barranca Parkway

Irvine, CA 92604

Telephone: 949-681-0777

Fax: 949-654-7668

Email: autismmd@cox.net

Website: www.irvinekidsmd.com

 

 

Gerald Maguire

UC Irvine Medical Center

Bldg 3 - Rt88

Irvine, CA 92697

Phone: (714) 456-5770

Fax: (714) 456-8499

Email: gamaguir@uci.edu

[glimmer]

Hi - I haven't posted here, but I do read the messages from time to time. My son was dxed with PANDAS around 7 years ago, and back then there weren't many groups discussing it. Anyway, have you tried UCLA? In 2003 they were open to the idea, but still wanted to treat symptoms of OCD, mood. I have no idea what their level of understanding and treatment is at this point. Have you tried contacting them at all?

 

 

I took my son to see Dr. Sudhir Gupta, Immunologist at UC Irvine in So. Cal. I don't know why I felt so defeated. I already knew that he was not well educated on PANDAS.

 

On my son's bloodwork he had negative strep titers and his Anti-Dnase B was normal.

 

The doctor said that he is concerned that those are the indicators of PANDAS.

 

I told him all about Dr. Cummingham's test and that my son's Cam Kinase II was at 165. He looked at me as if I were a martian. Again, I should not have been surprised by this.

 

He has only treated a couple of children with PANDAS with IVIG.

 

The biggest problem is that I did not have my son's IgG numbers from the lab. They did not get enough blood, so they could not run them.

 

Now I have to take him to the lab for the third time.

 

Dr. Gupta said, "Well, there has only been one study on PANDAS and Dr. Swedo isn't really doing anything with PANDAS anymore. I tried to show him the JNI article on the CAM II and he just glazed over again.

 

I just burst into tears, I put my hand on his arm and said, can't you please help my son. He is so pale, he has huge dark circles under his eyes. He keeps getting impetigo sores on his mouth and he has severe OCD.

 

He said, that I should get the blood work done and he would see us in 2 1/2 weeks.

 

We have a phone consult with Dr. K. on November 17th and I'm sure that will be really insightful, but in the meantime, I feel like we need to move to the East coast. The doctors there are so much more open and well educated on PANDAS.

 

He also said that Blue Shield of California is the very worst at covering IVIG, which really sent me downhill.

 

I just wish that money was no object and that my son was not so full of anxiety and I could just get on a plane with him and fly to Chicago or Maryland to see Dr. K or Dr. Lattimer.

 

Sorry, just venting.

 

I don't even know what to show him when I go back, but I am going to create an arsonal of information. Diana Pohlman is going to help me put a "book" together for little Mr. Dr. Gupta to educate him on PANDAS. Lots of Luck, right... Sorry so negative, I'm just so sad.

 

My son was doing so well on the high dose augmentin and ever since his dental work last week, he has been backsliding quickly.

 

Thanks for listening/reading...

 

If anyone has anything for my arsonal, please let me know...

 

Judy...

[mama2alex]

We saw Dr. Stiehm, Dr. Kobayashi and Dr. Chen at the UCLA Pediatric Immunology Clinic. Dr. Stiehm said he's treated 12 PANDAS patients, but only 2 of those with IVIG (don't know what treatment he gave the others, or whether they've had any success). We are following up with him in about 1 1/2 weeks to get our Pneumovax challenge results - this will possibly give us a diagnosis of Selective Antibody Deficiency. Since we haven't gone through the entire process with him yet, it's hard to recommend. It might be worth an appointment though.

 

I also really liked Dr. Kobayashi, but he is based in Omaha, NE and only visits UCLA occasionally.

 

We are up in N. California, so we will only be following up by phone.

 

Hi - I haven't posted here, but I do read the messages from time to time. My son was dxed with PANDAS 7-8 years ago, and back then there weren't many groups discussing it. Anyway, have you tried UCLA? In 2003 they confirmed my son's PANDAS dx. They were open to the idea while still wanting to treat symptoms. I have no idea what their level of understanding and treatment is at this point. We are no longer in CA, so I can't help you with a current doctor to turn to.

 

 

 

I took my son to see Dr. Sudhir Gupta, Immunologist at UC Irvine in So. Cal. I don't know why I felt so defeated. I already knew that he was not well educated on PANDAS.

 

On my son's bloodwork he had negative strep titers and his Anti-Dnase B was normal.

 

The doctor said that he is concerned that those are the indicators of PANDAS.

 

I told him all about Dr. Cummingham's test and that my son's Cam Kinase II was at 165. He looked at me as if I were a martian. Again, I should not have been surprised by this.

 

He has only treated a couple of children with PANDAS with IVIG.

 

The biggest problem is that I did not have my son's IgG numbers from the lab. They did not get enough blood, so they could not run them.

 

Now I have to take him to the lab for the third time.

 

Dr. Gupta said, "Well, there has only been one study on PANDAS and Dr. Swedo isn't really doing anything with PANDAS anymore. I tried to show him the JNI article on the CAM II and he just glazed over again.

 

I just burst into tears, I put my hand on his arm and said, can't you please help my son. He is so pale, he has huge dark circles under his eyes. He keeps getting impetigo sores on his mouth and he has severe OCD.

 

He said, that I should get the blood work done and he would see us in 2 1/2 weeks.

 

We have a phone consult with Dr. K. on November 17th and I'm sure that will be really insightful, but in the meantime, I feel like we need to move to the East coast. The doctors there are so much more open and well educated on PANDAS.

 

He also said that Blue Shield of California is the very worst at covering IVIG, which really sent me downhill.

 

I just wish that money was no object and that my son was not so full of anxiety and I could just get on a plane with him and fly to Chicago or Maryland to see Dr. K or Dr. Lattimer.

 

Sorry, just venting.

 

I don't even know what to show him when I go back, but I am going to create an arsonal of information. Diana Pohlman is going to help me put a "book" together for little Mr. Dr. Gupta to educate him on PANDAS. Lots of Luck, right... Sorry so negative, I'm just so sad.

 

My son was doing so well on the high dose augmentin and ever since his dental work last week, he has been backsliding quickly.

 

Thanks for listening/reading...

 

If anyone has anything for my arsonal, please let me know...

 

Judy...