Update: Second and FINAL mtg with Dr. Gupta UC Irvine

[momtocole1]

I went for a follow up appt yesterday for my son with an Immuno at UC Irvine, CA. He is an immunologist.

He was very difficult to talk to. He was not willing to make any phone calls or email any of the other "PANDAS" docs on the east coast or Dr. K.

 

I was armed and ready to see him. Diana Pohlman helped me to gather information/articles to help "educate" him. It was very clear that he did not want a "crazy PANDAS mother trying to educate him".

 

He said because my son's IgG numbers were still in the normal range he was not willing to even try to submit a request to insurance for IVIG coverage.

 

I told him that Dr. Lattimer at Georgetown and Dr. Boubalis (sp) an associate of Dr. Leckman at Yale Univ. had been successful in getting IVIG covered for children that had LOW normal IgG numbers and have failed their strep pneumo vaccines.

 

My son was at the rock bottom of the normal range for IgG sublcass 1, very low normal on IgG subclass 3 and rock bottom of normal on total IgG. This meant nothing to him.

 

My son failed 5 of the 7 strep pneumo strep strains in the vaccines and was in the weak responder range for the 6th. (Because my son is 12, he was only vaccinated for 7 strep strains instead of 14 like the younger kids are now).

 

I was shocked at this doctors arrogance, and his lack of cooperation. I was really careful not to give him information about "the forum", you know that term that someone mentioned recently that I love, TMI - Too much Internet.

 

He said "there are no recent studies on PANDAS and he said Dr. Swedo isn't doing anything with PANDAS anymore". I made sure to correct him on that. He also said that because Ryan's ASO titers were negative and Anti Dnase B was normal that he did not have PANDAS. He said, "you have to have a strep infection to have PANDAS". I said, that my son had 4 positive strep throat cultures. (I had all of that documented and gave it too him at the first visit). He never even bothered to read through any of it. After he realized about the 4 positive strep throat cultures and the rapid onset of tics and then OCD he then agreed my son does have PANDAS. I am so exasperated!

 

Anyway, all in all it was a complete waste of time for me to see him.

 

All was not lost, at least he ordered IVIG and when I asked him if he would be willing to follow Dr. K.'s protocol he said no, I have my own protocol. I am concerned that the dose he wants to do it too low and also I am worried about doing it in his "infusion center".

 

I am going to pursue getting the IVIG at Children's Hospital Los Angeles, with Dr. K.'s protocol. Another Mom on the forum just had her twins get their IVIG their (they are 5) and the hospital was fantastic.

 

Other people have seen this immuno and found him to be fine. I was just so put off by his lack of understanding and empathy for my son and his complete unwillingness to educate himself with more up to date information.

 

If anyone is thinking of going to an immuno doc at UC Irvine, feel free to PM me for more detailed information.

 

 

 

Thanks,

Edited December 3, 2009 by momtocole1

[FallingApart]

OMG, I am sooooo sorry for this appt for you!!! We have had our share of these horrible appts and I know how they make you feel. I'm so sorry for you!!!!

[faith]

Judy,

sorry, I'm confused, you said it was a complete waste of time and he didn't think your son had any immuno deficiencies and was even thinking he didn't have PANDAS. but he did order the IVIG? isn't that what you wanted him to do? why would he agree to IVIG if he wasn't on board with all you talked about?

 

my feeling is that he may not want to 'get involved' with PANDAS patients at this time, so he may have been trying to send the message so more won't start making appts. with him.

 

confused,

Faith

[momtocole1]

Hi Faith,

 

I know it must seem strange that I am calling it a waste of time. I guess because after all that I did, dragging Ryan in there, getting more blood work, I am still at the same point. I need to find someone else to do the IVIG and it is still not going to be covered by insurance and I still am dealing with a this doctor that is so closed off and stubborn.

 

Yes he did order the IVIG but it is using his protocol. It would be $14,000 just for the medication do do it with him and that does not include any of the "infusion center or doctor fees" and we would not be gettting the dose that Dr. K. wants him to get.

 

So what I am concerned about is if we go through all this and it is not a high enough dose to help Ryan, especially with how severe he is then am I back at square one? I'm sure it would not hurt him to get a lower dose and in some ways I'm sure it would help him. But I feel that I have come this far and I want him to get all that he needs.

 

All Dr. K. kept saying on our phone consult was, your son is not able to function, he has started into puberty, your only option at this time is IVIG and with that, at his age you can expect a 60% to 70% recovery. It was so hard to hear that. I feel like I am running through quicksand trying to get this treatment for Ryan while he is slipping away.

 

I just don't want to put him through all this with Dr. Gupta and take a chance that he won't respond. Also, with Dr. Gupta it all seems so "back alley". He won't do it at UC Irvine, because he said it is not FDA approved for PANDAS kids. His "infusion center" is ASG Infusion Center which stands for his wifes name, his name and then Gupta. The other thing that concerns me is that a Mom that I have been talking to in Los Angeles priced out the Gamunex. She contacted many different distributors and the highest price being charged was $115 per gram. Dr. Gupta was going to charge us $135 per gram. That is $20 more per gram than the highest price found in LA, at 110 grams that is a $1200 difference.

 

When I asked him if he would be there when Ryan would get the IVIG, he said "Oh no, I don't do that". He acted insulted that I even asked.

 

My poor little boy is so sick. We have had to take every picture and mirror down in the house so that he won't see his reflection in it. He can barely even leave the house anymore, hardly will ever even shower and this doctor won't even pick up the f*&*&*&ng (excuse my french) and call Dr. Lattimer or Dr. Boubalise to see how they are getting this covered for children that have the exact same lab results as Ryan: low normal IgG numbers and a failure on the strep pneumo vaccs.

 

Before I left his office, I said, okay, forget the insurance, I want to give you these resources and information so that when there is another mother sitting in this chair you can help her child too. He said I have many other children in my practice and their IgG numbers are far lower than your sons and I can't get their IVIG's covered by insurance. He even insinuated that these other doctors that are getting it covered are just lying. Then when I called him on that he got very defensive. He also said, this is why I don't even go to those "DAN" conferences anymore because these crazy doctors are there saying these things that are not science, it is just not science.

 

So that is why I won't be going back. I will send him a letter though, in a year, when Ryan is doing better and I will tell him that we got the proper IVIG treatment that he needed and how well he is doing. I say that and I may not even waste my time. This doctors heels are dug in so deep it is no use. The scary thing is he is training other doctors.

 

Okay, I know I really went on a tangent. Does it make more sense now why I am so upset?

 

Also, I think you are right, he does not want to get involved with the whole PANDAS thing...

 

Sorry, if I went off on a tangent there.

 

Thx, Judy...

 

 

Judy,

sorry, I'm confused, you said it was a complete waste of time and he didn't think your son had any immuno deficiencies and was even thinking he didn't have PANDAS. but he did order the IVIG? isn't that what you wanted him to do? why would he agree to IVIG if he wasn't on board with all you talked about?

 

my feeling is that he may not want to 'get involved' with PANDAS patients at this time, so he may have been trying to send the message so more won't start making appts. with him.

 

confused,

Faith

[EAMom]

Hugs Judy.

 

Thanks for the post...I'm so sorry you had a bad experience. Obviously Southern CA needs a decent PANDAS doc or two.

[sf_mom]

Judy, You really need to go to Dr. K..... I'm positive he is cheaper, coded so that it can be covered by insurance, etc.

[Debbie1]

Judy,

 

That is such a terrible experience! I really feel for you right now. You will get your child better - you have to believe that you will - and when you do, you should write to that doctor and prove him wrong. You never know how many kids it will help in the future.

 

Hang in there...it can be rough.

 

Debbie

[mama2alex]

Judy,

 

I'm so sorry you had this experience! I totally get what you are saying about this doctor - it's beyond frustrating, it's sickening when somone in a position to help a sick child won't even listen. And I completely understand the quicksand feeling. I told my husband about two months into this that I felt like I was standing in the middle of a maze holding my sick child and screaming at the top of my lungs for help, and no one could even hear me.

 

In any event, you can't let this slow you down. I don't think there are any real PANDAS docs in southern CA and your son is too sick for you to try to be the pioneer down there. There's an immunologist up here in northern CA who has treated 2 (I think) kids with IVIG at Lucile Packard (Stanford). We are scheduled for 3 weeks from today thanks to him, but we also have an immune deficiency diagnosis. That said, when I sat with him and laid out all the PANDAS evidence, he agreed to do 2g/kg for the first treatment. I think he has treated a child with IVIG who did not have an immune deficiency as well. It may be worth a trip up here to see him, but he's hard to get in to see, so you'll have a wait. Also, if you do get treatment at Stanford, they have a Ronald McDonald House nearby that you could probably stay at (I think it's free). His name is Dr. Lewis and the number for an appointment is 650-497-8841.

 

If you can affort it, you would ideally go straight to Dr. K, as SFMom suggested. The doctor up here is a possiblity, but it's not guaranteed that he'll help you. I think he's just beginning to "get it" just a little bit, but I wouldn't say he's completely on board quite yet. You can PM for more info on our experience with him.

 

You will get there - don't let this guy slow you down.

 

Big hugs,

Jennifer

[momtocole1]

Hi Jennifer,

 

Thanks for the note and the encouragment. I know exactly how you feel and I liked your analogy about standing in the middle of the quicksand screaming. It reminds me of Shirley McClane in that famous movie with Debra Winger. When her daughter is sick and she is screaming out at the nurses desk that it is time for her daughers pain medication and the nurse is looking at her like she is crazy. I can't remember the name of that movie! It has Jack Nicholson in it too. I remember renting it back when I was in high school and my Mom saying, "Oh, you feel like crying today, huh?" Imagine, a time in my life when I had to rent a movie to cry, wow, what a concept. Now I will cry if my son smiles at me for 2 seconds or lets me touch him or hug him. Most days I don't even bother putting on mascara!

 

I will keep the info on Dr. Packard in my back pocket. I think we are going to be able to go to Childrens's Hosp LA to get the IVIG.

 

You are lucky you have the immune def. diagnosis for your son, I can't believe I am saying that, but you know what I mean.

 

Thx again for the note,

 

Judy....

 

Judy,

 

I'm so sorry you had this experience! I totally get what you are saying about this doctor - it's beyond frustrating, it's sickening when somone in a position to help a sick child won't even listen. And I completely understand the quicksand feeling. I told my husband about two months into this that I felt like I was standing in the middle of a maze holding my sick child and screaming at the top of my lungs for help, and no one could even hear me.

 

In any event, you can't let this slow you down. I don't think there are any real PANDAS docs in southern CA and your son is too sick for you to try to be the pioneer down there. There's an immunologist up here in northern CA who has treated 2 (I think) kids with IVIG at Lucile Packard (Stanford). We are scheduled for 3 weeks from today thanks to him, but we also have an immune deficiency diagnosis. That said, when I sat with him and laid out all the PANDAS evidence, he agreed to do 2g/kg for the first treatment. I think he has treated a child with IVIG who did not have an immune deficiency as well. It may be worth a trip up here to see him, but he's hard to get in to see, so you'll have a wait. Also, if you do get treatment at Stanford, they have a Ronald McDonald House nearby that you could probably stay at (I think it's free). His name is Dr. Lewis and the number for an appointment is 650-497-8841.

 

If you can affort it, you would ideally go straight to Dr. K, as SFMom suggested. The doctor up here is a possiblity, but it's not guaranteed that he'll help you. I think he's just beginning to "get it" just a little bit, but I wouldn't say he's completely on board quite yet. You can PM for more info on our experience with him.

 

You will get there - don't let this guy slow you down.

 

Big hugs,

Jennifer

[mama2alex]

You are lucky you have the immune def. diagnosis for your son, I can't believe I am saying that, but you know what I mean.

 

I definitely know what you mean. It just shows how far the PANDAS community has to go in terms of educating doctors that a child is considered "lucky" to have an immune deficiency diagnosis because that means they can get the treatment they need for PANDAS. It's very sad.

[matis_mom]

Hats off to you for holding your ground like you did! I probably would have either quietly taken it and then have a meltdown in the car, or I would have totally lost it right there!

 

From your second post I can see some red flags: his unwillingness to talk to other docs, the fact that YOU had to point out things he should have seen on your child's records, the fact he did not try to pursue the insurance but rather proposed doing it at his own facility under his own terms. To me that's a total conflict of interest. I wouldn't be going back to him either!

 

That's what I liked about Dr. Latimer. She understands the problem, she is willing to do what needs to be done to get it covered by insurance, the treatment is done at a respectable hospital, and she is very willing to work with other doctors. When I mentioned that our pediatrician had totally missed this she said, "You can't blame her too much, this is all pretty new." She said she'd be happy to send the pediatrician a note so they could work together, which is great so if we need prescriptions filled or hit any bumps, they can help us out (a 5 minute drive and a $10 copay sounds good to me!). There are a couple of other younger doctors in that same practice who are familiar with Pandas (although I don't they are treating, at least they are familiar with prophylactic abxs and totally understood when I brought all the kids to get tested).

Anyway, I am rambling on, my point is I am confident she puts the patient's best interest first, and that's the sign of a good doctor.

 

I'd say at any rate, if you are going to spend $14K, you may as well fly somewhere to see a doctor who is knowledgeable about PANDAS, compasionate, and hopefully can get it covered by insurance!

 

Hope you will find a way to get him treated soon!

[ShaesMom]

Judy,

 

My daughter has received four of her five IVIG infusions at our Immunologist's office (Infusion Center). The first was in the Ped's ward at our local hospital. We did not have the greatest experience at the hospital. It was very clear that the nurses did not have any experience with IVIG and could not answer any questions that we had. In fact, we had to call the Immunologist's office when she started having side effects because they were completely clueless. We never saw a doctor during the two days that she had the infusions.

 

We have never had any problems at the smaller infusion center. The nurses there are trained specifically for this procedure and do it daily. We do not have a Doctor attending to us every 15 minutes but the nurses do and if the Doctor is needed he just down the hall.

 

IMO-I would not have any concerns regarding doing the infusion at his center.

[coco]

Judy, I am so sorry for your experience...I am proud of you for hanging tough, and I would certainly take my business elsewhere! That is totally insane! I would hop on a plane and see Dr. K in a heartbeat. He was able to get roughly 80% reimbursed for us over several months, so that was worth it all by itself. You need a doctor who is a partner, not an adversary for crying out loud! Big hug to you!!

 

coco