Dr. Bouboublis

[bronxmom2]

Others have posted about Dr. Denis Bouboulis before, but I want to mention him again.

 

He is an immunologist with two offices in Connecticut, affiliated somehow with Dr. Leckman, I think. Extremely well-versed with PANDAS and a very very nice man who.... takes insurance!!!!!!!!!!!!

 

I consulted with him yesterday. My son completed PEX three weeks ago, and I am just so scared of "it" coming back....I wanted to know what could be done now to protect his immune system moving forward, etc.

 

He had a message that I did not want to hear-- that, in his opinions, the immune system's memory post-PEX will simply reproduce the bad antibodies just as it reproduces the good antibodies, since nothing has been done to change the T-Cells-- in other words, that the benefit from PEX will be temporary.

 

For this reason he believes that IVIG has a better chance of bringing permanent improvement.

 

He ordered a slew of bloodwork (including lyme) and seems willing to work to get the IVIG covered by insurance.

 

My son failed 10/14 pnuemococcal titers and has low-normal IgGs, nothing that will justify IVIG without further documentation.

 

He switched us from Zith to Augmentin (600 mg twice a day-- my son weighs almost 70 pounds) and assured me that I was correct when I feared that twice weekly Zith was not enough-- it is not.

 

I forgot to ask about IV antibiotics, which is a question I definitely wanted to raise-- I think I'll call him about it.

 

Will see us again in about a month and hopefully be ready to order the IVIG.

 

Again he is a very nice man, looked me in the eye and said he will see us all the way through.

 

He said he is open to seeing more PANDAS patients. He does not understand why more immunologists are not interested in this. Like all the good PANDAS doctors he seems deeply interested in what PANDAS represents-- a complete paradigm change in the way we see mental illness.

 

PS I am still hoping he is wrong about the PEX. My son is basically living in a bubble at this point.

 

PM me if you want his contact info.

[dcmom]

bronxmom2- thank you for posting this. Very interesting. I fear that he is right (although I like pex because I really think it got us to a true baseline) that pex is not permanent. While I am not ready to jump on IVIG- I am not ruling it out. I could easily get to CT....

 

Please keep me posted on your progress with him. I am wondering what he will use for insurance, as my dd's bloodwork (except for Cunningham's test, of course) has all been normal. Do you know what he is looking for? We already were tested for lymes.

 

You know, my gut has kind of always told me our kids need both: pex to get rid of all bad antibodies and back to true baseline, and then IVIG, maybe not monthly but a few times per year, to keep them healthy

[peglem]

Others have posted about Dr. Denis Bouboulis before, but I want to mention him again.

 

He is an immunologist with two offices in Connecticut, affiliated somehow with Dr. Leckman, I think. Extremely well-versed with PANDAS and a very very nice man who.... takes insurance!!!!!!!!!!!!

 

I consulted with him yesterday. My son completed PEX three weeks ago, and I am just so scared of "it" coming back....I wanted to know what could be done now to protect his immune system moving forward, etc.

 

He had a message that I did not want to hear-- that, in his opinions, the immune system's memory post-PEX will simply reproduce the bad antibodies just as it reproduces the good antibodies, since nothing has been done to change the T-Cells-- in other words, that the benefit from PEX will be temporary.

 

For this reason he believes that IVIG has a better chance of bringing permanent improvement.

 

He ordered a slew of bloodwork (including lyme) and seems willing to work to get the IVIG covered by insurance.

 

My son failed 10/14 pnuemococcal titers and has low-normal IgGs, nothing that will justify IVIG without further documentation.

 

He switched us from Zith to Augmentin (600 mg twice a day-- my son weighs almost 70 pounds) and assured me that I was correct when I feared that twice weekly Zith was not enough-- it is not.

 

I forgot to ask about IV antibiotics, which is a question I definitely wanted to raise-- I think I'll call him about it.

 

Will see us again in about a month and hopefully be ready to order the IVIG.

 

Again he is a very nice man, looked me in the eye and said he will see us all the way through.

 

He said he is open to seeing more PANDAS patients. He does not understand why more immunologists are not interested in this. Like all the good PANDAS doctors he seems deeply interested in what PANDAS represents-- a complete paradigm change in the way we see mental illness.

 

PS I am still hoping he is wrong about the PEX. My son is basically living in a bubble at this point.

 

PM me if you want his contact info.

So, IVIG changes Tcells? I thought it just did an immune "clean up" but the recipe for the bad antibodies would still be there. Question just popped into my head- Does the donor IgG communicate with the host immune system? I mean, do we get some new antibody memories in storage from it? Don't know if I'm asking that right....

[coco]

Hi BronxMom - We just had a progress appt with Dr. B this morning -- super nice. We are doing monthly ivig for our dd and it seems to be helping...some rough days following the treatment, but then a big upswing. He explained the PEX vs. IVIG the same way to us, that even if you do PEX, you still need to do IVIG. I did ask him about doing IV abx because that really helped my dd 2 years ago. He said that you would really need to do it daily, which is not practical, and if you only did it for one time the benefits are over very quickly. I have to admit I was not convinced of that answer and I will revisit the subject again. What if we did it for 3 days in a row?--I should have asked that. Or, I would like to add in an abx the same time we do each ivig. Sometimes there is so much information in that hour meeting that you have to digest it a bit before you figure out what steps you'd like to take next. Maybe it's just me!!! He did switch us from Zithro to Augmentin, too. However, he is cautious of keeping on the same abx over the long haul due to resistance, so he feels that 3 mos on Zithro, 3 mos on Aug, 3 mos on Omnicef, back to Zithro, etc., is the way to go. Another mom on the forum and I asked him if he could consult with Dr. Cunningham to understand the science behind the long-term abx treatment which he just did...he's getting there, it seems, which is good. Medical school brainwashed too many students to be anti-antibiotics!! He did say, "The consensus seems to be that the long-term treatment is abx." Yee Haw!

[coco]

New ivig brings new antibodies, good ones, but the old ones are still there and they have memory. The healthy ivig gets infused and they have memory. The old bad ones die off eventually and are replaced with the good ivig antibodies, which also have memory. Now there are less bad antibodies to multiply. Then you get another ivig, they introduce more good ones, the good ones get copied again, the bad ones die off, being replaced with healthy antibodies, and so on, until the immune system is functioning and regulating on its own. I hope that makes sense. That's how he explained it to us...but he was much smoother than I am!

[Debbie1]

So glad to hear of all the positive experiences with him. We have an appointment in two weeks.

[dcmom]

Coco- so he ultimately thinks IVIG is the answer to pandas. How many treatments, or for how long does he think your child will need monthly IVIG? Did your daughter have an immune deficiency?

[coco]

Yes, Dr. B believes that ivig is the best treatment right now for pandas. He will explain the whole B-cell, T-cell antibody process very well to you. We did our first ivig in with Dr. K. in August (2-day, 1.75 grams per kilo) in addition to consulting with Dr. B. We really wanted to have a local doctor we could work with for follow-up treatment and care. He is an absolute winner. After Dr. B went over all our blood work he told us our dd had SAID, Specific Antibody Immune Deficiency after failing 13 or 14 pneumo strep, tetnus, 2 of 4 Iga levels and borderline fail lymes, and he highly recommended monthly ivig. Insurance approved us for 6 treatments so far. The monthly dosage he is using for us is 1.00 grams per kilo, which he considers "high dose" versus "low dose". He also rechecked my dd's blood 6 weeks post the ivig with Dr. K. prior to beginning his treatments, just to see how fast her body was going through that much gamma. She still failed 13 of 14 pneumo streps, some a bit higher, some a bit lower, but fail nonetheless. I am glad we are proceeding with monthly treatments. Additionally he said there are many, many other streps out there that are non-testable, and that those most likely would be failed as well, so it is only smart to build up that immune system at all cost. Granted, viruses are streps evil twin, but ivig will boost the entire system.

 

Also, earlier this summer we were ready for an exorcism in my home, truly. Now, her tics, vocal and motor are about 80-90% gone. Anger, mood lability, sensory aversion is 80% better. OCD, questioning rituals are about 50-60% better. Anxiety episodes ebb and flow, and we seem to have a lot more irrational fears (i.e. afraid of a bracelet) a few days after ivig, then she pops out of it. Her cognitive ability is increased every day, we just had a school meeting this afternoon, and she is really in a good place right now. Her handwriting is amazing, almost perfect, and she had chicken scratch before...always. But not anymore!! She was mis-diagnosed with pdd-nos at age 5, but we now know it is pandas. We have a chance at rescuing her and we are not stopping.

 

I wish you the best of luck with Dr. B. He is terrific! P.S. He told me he reads the forum! Yay!

[sf_mom]

I swear Dr. B be our back up plan. So far Dr. K has been wonderful..... Dr. K was saying similar about PEX, follow-up with IVIG. Something to do with Bone Marrow modulation with IVIG. Also talked about the possibility of 'deposits' being in the Basil Ganglia which IVIG would in essence wash away.

 

-Wendy