Post Dr. B...

[beeskneesmommy]

The man has something going on here. My little boy is vastly improved with the abx protocol that he has prescribed. Could this possibly be the beginning of the end of this nightmare? After a whole year of abx, after an acute episode last fall...after 1.5 years of known PANDAS with no protocol prior to the acute episode, my kiddo is doing very well. We started the new med mix less than a week ago after seeing Dr. B on the 25th. My son has already had days that brought me joy and tears - bittersweet in seeing the emerging person that I have missed so much during these most important developmental years. Lots of tests and digging - cannot wait to get the results and worth every penny for the peace of mind of "knowing" that the Igenex results may yield. I will never stop maintaining that my son will be cured. We are getting closer every day to health, and we are so much further away from the severity of last Fall....

 

Love to you all and your beautiful children. I'll be damned if I ever lose hope for any one of them!!

 

K

[kimballot]

:D LIKE :D

[T_Mom]

Wow! that is fantastic-- can you please share what switch was used in the abx for your son and his history of abx over the past 1.5 years? Thanks for sharing--

[beeskneesmommy]

My son (just turn 4 at the time) was put on Augmentin last Sept. This helped in his symptoms improve a lot but he plateaued around Christmas. He was then put on Cefdinir last Jan. which pushed him even further forward. However, starting last April, he had a series of viruses presumably caught at preschool. Last May he bagan tp have flare ups of symptomology remeniscent of his acute episode last Fall. Dr. B warned that it may be too late and that he should have had the med mix sooner, but we are trying a 30 day protocol of Augmentin ES, BID, as well as a dose of Azith daily. I think the suspicion is that my son has another "bug" such as Myco going on now, although he is classic PANDAS:Strep historiclly, with no co-diagnopsis. I am very pleased also with the deep digging for other underlying illness that Dr. ordered thru blood work. Although my son has been treated by solid docs, this has always been a concern for me and I am glad that it is being addressed.

[eljomom]

Can you tell me what other digging dr. b is doing for underlying illnesses? Also, what does he mean by "it may be too late?" I think we might be in that category. One month of augmentin last november (after 8 months of symptoms prior) made things worse, then low doze zithromax since last december.....she is still ticcing away. But not debilitated. But "too late"---well, then what???

[momaine]

I wouldn't want to put words in anyone's mouth, but my guess would be that he meant too late for antibiotics alone to fix the problem. Maybe he would then need IVIG. I can tell you from experience, that Dr. B will not give up on any of these kids. He certainly couldn't mean too late to get well. He just doesn't think that way, in my experience.

[michiganpandas]

what is dr. b's name and where is he located?

[beeskneesmommy]

Dr. Dennis Bouboulis is located in CT and has offices in Darien and Stamford. He is a specialist in Asthma and Immunology. By "too late", he meant that the autoimmune system may be already rolling on its own like a little freight train - unable to turn itself around with abx alone. He confirmed what I already know - if just one of the 12 docs who saw my son during the first 6 months when he was diagnosed at age 2.5 had been on the ball and prescribed ongoing abx, we may have nailed this thing in its tracks. Amazingly, they all diagnosed my son with PANDAS but would not listen when I attempted to discuss the idea of treating the PANDAS rather than just the Strep each time he had a Strep:PANDAS flare-up. Thus the multiple docs - I kept going from one to the next in hope that someone would treat my kiddo!! Anyway, I digress with the anger that I cannot seem to let go of. Dr. B said that we would try the abx for 30 days. If we can't knock the PANDAS out this way, he will go for a steroid taper and ultimately to IVig. We are already prepared for IVig and my son's doc at CHOP has offered it to us. Re: tests - tons of tests for Lyme, Myco, Bartonella and more. Some were thru Quest (insurance will likely cover in part) and some were out of pocket and I sent the blood myself to Igenex. I will continue to share info as it comes in.

 

Positive thoughts your way, all!!

[kimballot]

Dr. Dennis Bouboulis is located in CT and has offices in Darien and Stamford. He is a specialist in Asthma and Immunology. By "too late", he meant that the autoimmune system may be already rolling on its own like a little freight train - unable to turn itself around with abx alone. He confirmed what I already know - if just one of the 12 docs who saw my son during the first 6 months when he was diagnosed at age 2.5 had been on the ball and prescribed ongoing abx, we may have nailed this thing in its tracks. Amazingly, they all diagnosed my son with PANDAS but would not listen when I attempted to discuss the idea of treating the PANDAS rather than just the Strep each time he had a Strep:PANDAS flare-up. Thus the multiple docs - I kept going from one to the next in hope that someone would treat my kiddo!! Anyway, I digress with the anger that I cannot seem to let go of. Dr. B said that we would try the abx for 30 days. If we can't knock the PANDAS out this way, he will go for a steroid taper and ultimately to IVig. We are already prepared for IVig and my son's doc at CHOP has offered it to us. Re: tests - tons of tests for Lyme, Myco, Bartonella and more. Some were thru Quest (insurance will likely cover in part) and some were out of pocket and I sent the blood myself to Igenex. I will continue to share info as it comes in.

 

Positive thoughts your way, all!!

 

I have the same anger you feel. Don't worry about letting it go... instead, let it motivate you to heal your son and then help others.

[beeskneesmommy]

Thanks Kim. I made a promise to myself and to the powers that be when my son was stricken so dramatically with his acute episode last Fall. I vowed that when we got thru it all I would make it my life's work to educate others and to help as many families as I can in the fight against PANDAS. I do what I can now, while still on the battle lines daily with my sweet little boy. When it is over, and it WILL be over, I will draw more organized and strategic lines of war on this illness. I also have always maintained that my son will be cured - not improved to what others decide that he and we can live with - but cured. This is what I belive for all of our children. Peace and hope and goodness to you and yours!

[momaine]

Thanks Kim. I made a promise to myself and to the powers that be when my son was stricken so dramatically with his acute episode last Fall. I vowed that when we got thru it all I would make it my life's work to educate others and to help as many families as I can in the fight against PANDAS. I do what I can now, while still on the battle lines daily with my sweet little boy. When it is over, and it WILL be over, I will draw more organized and strategic lines of war on this illness. I also have always maintained that my son will be cured - not improved to what others decide that he and we can live with - but cured. This is what I belive for all of our children. Peace and hope and goodness to you and yours!

We need a "like" button! I feel exactly the same way. I wish I lived closer to Dr. B's office as I would volunteer there and try to be supportive to the parents who are still overwhelmed. I look forward to my child's full recovery so I can work to help others. No one should have to go through this alone! I love my cyber family on this forum. Not sure what I'd do without you all.

[JAG10]

Dr. Dennis Bouboulis is located in CT and has offices in Darien and Stamford. He is a specialist in Asthma and Immunology. By "too late", he meant that the autoimmune system may be already rolling on its own like a little freight train - unable to turn itself around with abx alone. He confirmed what I already know - if just one of the 12 docs who saw my son during the first 6 months when he was diagnosed at age 2.5 had been on the ball and prescribed ongoing abx, we may have nailed this thing in its tracks. Amazingly, they all diagnosed my son with PANDAS but would not listen when I attempted to discuss the idea of treating the PANDAS rather than just the Strep each time he had a Strep:PANDAS flare-up. Thus the multiple docs - I kept going from one to the next in hope that someone would treat my kiddo!! Anyway, I digress with the anger that I cannot seem to let go of. Dr. B said that we would try the abx for 30 days. If we can't knock the PANDAS out this way, he will go for a steroid taper and ultimately to IVig. We are already prepared for IVig and my son's doc at CHOP has offered it to us. Re: tests - tons of tests for Lyme, Myco, Bartonella and more. Some were thru Quest (insurance will likely cover in part) and some were out of pocket and I sent the blood myself to Igenex. I will continue to share info as it comes in.

 

Positive thoughts your way, all!!

 

Wow! If Elia is offering IVIG, that is progress and good news for the children of the Philadelphia metro area, at least those with recent onset. I wonder if CHOP will offer ivig until completely well like Dr. B. He is committed to complete wellness.

[beeskneesmommy]

I can only say that in exhausting many efforts, we have IVig on the table for our particular situation. I want to be careful not to mislead anyone and that is why I did not mention the doc's name in this post. I think the fact that my son has no other diagnosis and is otherwise clear and healthy in all levels of functioning allows for less difficult judgement calls/choices. My son has also been observed in person multiple times over the past year as we have made trips there every couple of months at my insistence. Therfor, he has been observed looking healthy and "normal" as well as presenting with PANDAS symptoms on many different occasions for each. I cannot speak for CHOP's position regarding IVig for anyone other than ourselves....

[eljomom]

Does IVIG work if it's not "recent onset?" I thought I read somewhere from Swedo that it is most effective if used in the first episode. So I wonder where that leaves us "chronic" pans/pandas/pitand kids?

beesknees....I am curious why you saw Dr. B if your CHOP doctor was already offering IVIG? Also, who ordered all the other tests for lyme, bartonella, etc??? Sorry for all the questions....my dd7 went from chronic to really nonstop tics again in the past week, and another sibling is ticcing and some ocd...and I"m ready to die. And we are NOT clear cut strep, which makes it difficult.

[dcmom]

Beesknees-

 

while I understand the anger, don't let it consume you:

 

my daughter was diagnosed with pandas (and strep) within 2 mos of onset (age 5), she went on daily treatment antibiotics from that point on, it was not a cure

 

while I hold out hope symptoms will subside with age, I am REALLY focusing on aggressive "management" to maximize joy and quality of life....