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Saw Dr. B on Friday & hopeful...


kleek3
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Evening fellow warriors,

 

I will start by saying we have been battling for two years in April. We have certainly had our ups and downs with this journey. Our ds5 was dx by Dr. T in September of 12. This was after a semi battle with a ped that said tics were normal & a referral to a local Neurologist that said you are doing the right thing seeking out a PANDAS specialist.

 

After a botched visit to Yale seeing Dr. L that I felt was more of an interrogation on my prenatal care and ds5 NICU treatment. With 12 other Doctors/students studying me instead of our son. A Tourettes Dx was given. After consulting the forum on my fears of "doctor shopping" I followed the lead of other people on this forum and sought a 3rd opinion in Dr. T.

 

Since September 12 we have been on an unimaginable amount of abx to include - Augmentin, Cefdinir, Zithromax, a 30 day Steroid burst, Clendomyicin/Rifampin combo, Biaxin and I'm sure I'm missing something... The only med change that brought a somewhat positive change was Cefdinir/5 day steroid burst with the onset of an ear infection/croup. We noticed a subtle change, and there was a glimpse of hope. Then a viral shows up or strep is in the air and back to square one.

 

With that being said, I in no way am bashing Dr. T or discounting the endless chats he tolerated with me as I was sobbing in Wegmans parking lot or him contacting me at 4am EST while I was in Scotland. This man believed in my gut feelings, and he believed in a hope that we would find a good place that my family would be able to function in. As the year passed on, I found it more challenging to contact Dr. T as well as getting a response as to what we were to do next.

 

I will tell you we did 40K dollars worth of genetic testing, we have followed his lead from day one. I have poked and prodded my boy with needles and exams. I have fed him countless supplements for 7 months now. July - November 2013 we saw a change. We had our son back for a brief moment in time. Life was good. No one was being hurt physically on a daily basis, guards were somewhat let down. Then....virals kicked up at school, strep was floating around in our small private school. Daddy was ill and before we knew it we were in a full blown flare again.

 

The choice to see Dr. B was an easy one. I needed yet another opinion as ds5 wasnt getting better and I couldn't get an answer from Dr. T. I will do my best to share what we learned this past Friday in hopes that someone somewhere can learn from our experience....

 

1) IVIG is necessary. Ds5 has consistent low IgG levels to the point that Dr. B said this kid has no immune system.

 

2) A patient history from our drug store was one of the most shocking documents I have looked at. The amount of med changes ds5 has had is shocking. With NO significant changes. Lesson - pull your kids prescription history and trust your gut!

 

3) Labs - mycoplasma has ALWAYS been an issue for us. As it turns out, my husband has very high mycop levels since the first labs Dr. T ordered. A Z pack was called in for everyone in the house. Dr. B's opinion was that no z pack would ever kill off those numbers in my husband. He has had this since 10/12. Could he be reinfecting Ds5 without us even being aware of it?

 

4) Lyme - testing is in the works. Ds5 had a bulls eye that I thought was ring worm. Is it possible that Lyme & co infections are a part of our story? Lesson - in the beginning of our journey, a mom on this forum asked had we explored Lyme? Ah...yes... almost 2 years later.

 

5) When you know better you do better. We know more this week than last week. There is a plan to make a plan on March 6th when we return. I loved that Dr. B told Ds6 that he thinks we can help Ds5 and make life better for the family.

 

So, we are on Amox/Clav 600/5ml 2xs daily - a much heavier dose than we have ever tried. I'm noticing a kick up in his PANDAS symptoms that I'm wondering tonight could this be a herex? I will continue to have faith, I will continue to stalk posts on a regular basis. I know PANDAS isn't going away tomorrow, tonight at least I have hope!

 

KK

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We have been dealing with PANDAS for 5 years. There were some horrifyingly, gut wrenching times during which I feared that I would lose my son to this illness...and perhaps lose myself along with him. In July 2011, we sought the help of Dr. B. This was the start of our journey home. We see other specialists as well. I believe that a team approach is best as each doc brings something different to the table. Dr. B's understanding of immunology and his choice of antibiotic treatment has been right on. DS had IVig Sept. 2012 with Dr. B's recommendation, although with another specialist. My only regret is that we did not do it a year earlier. DS had 1 more IVig last May, 2013. IVig, antibiotics, and gluten free diet have brought our son fully back to us. He is 7 now, happy, healthy, socially involved, playing sports and recently had a stellar report card at school. He still has mild bumps..very occasional flares that others don't notice. These are infrequent and very manageable. He is, aside from being a little hyper and silly at times, well, normal now. I will remain hypervigilant, perhaps until I die! But i am here to tell you that our kids can get better. I credit Dr. B for his role in helping to bring our beautiful boy to us. In fact, I have my monthly teleconference with Dr. B this Friday :)

 

Keep having hope. Keep the faith. Warm healing wishes to your son and your family.

 

Kath

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Can I ask if you remember what your son's IgG levels were? A few of my ds's were low, but Dr. Murphy didn't think they were low enough for insurance to cover IVIG. And I don't even know if they were low enough to warrant IVIG. Honestly, I had no idea what they were even looking for with the IgG levels. Now from your post, I see it is a measure of the immune system??

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He started treating several PANS children in the fall of 2009. His first HD IVIG for PANDAS was in Jan 2010. There might have been a couple of children he was seeing prior for immune deficiencies but were only getting low does monthly IVIG.

 

In general, a good way to qualify for IVIG is to have "repeat" bloodwork of IgGs Subclasses showing immune deficiencies.

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4) Lyme - testing is in the works. Ds5 had a bulls eye that I thought was ring worm. Is it possible that Lyme & co infections are a part of our story? Lesson - in the beginning of our journey, a mom on this forum asked had we explored Lyme? Ah...yes... almost 2 years later.

 

 

If lyme is negative or IND, please don't assume that the coinfections (mycoplasma, bartonella, babesia, ehrlichia, RMSF) are not involved.

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We were one of his first high HD IVIG patients for PANDAS. A few before us, most not on the forum. My dd's first HD IVIG with him was in March 2010. Our first doctor appt. with him was in Sept 2009, but then my dd became so sick we couldn't get her out of the house to travel for IVIG. She had an HD IVIG prior, in June 2009 with Dr. K in Chicago.

 

Dr. B chose this crazy journey because he really cares for our children - like most PANDAS doctors we've seen. In the beginning he used to spend 1-2 hours per visit talking with us for no extra charge. At one time he even shed a tear with us (hate posting personal stuff). Now of course, he has a hard time keeping up with the increase in patients - but still glad he hasn't given up.

Edited by philamom
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4) Lyme - testing is in the works. Ds5 had a bulls eye that I thought was ring worm. Is it possible that Lyme & co infections are a part of our story? Lesson - in the beginning of our journey, a mom on this forum asked had we explored Lyme? Ah...yes... almost 2 years later.

 

 

If lyme is negative or IND, please don't assume that the coinfections (mycoplasma, bartonella, babesia, ehrlichia, RMSF) are not involved.

 

Agree. Testing stinks.

Lyme - positive through Igenex, positive through Advanced Lab Culture (received a photo of spirochetes in dd's blood sample), negative through Quest

Bartonella- negative through Igenex, positive through Quest Nicholas Lab (not regular Quest lab)

RMSF- positive through Quest

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Evening fellow warriors,

 

I will start by saying we have been battling for two years in April. We have certainly had our ups and downs with this journey. Our ds5 was dx by Dr. T in September of 12. This was after a semi battle with a ped that said tics were normal & a referral to a local Neurologist that said you are doing the right thing seeking out a PANDAS specialist.

 

After a botched visit to Yale seeing Dr. L that I felt was more of an interrogation on my prenatal care and ds5 NICU treatment. With 12 other Doctors/students studying me instead of our son. A Tourettes Dx was given. After consulting the forum on my fears of "doctor shopping" I followed the lead of other people on this forum and sought a 3rd opinion in Dr. T.

 

Since September 12 we have been on an unimaginable amount of abx to include - Augmentin, Cefdinir, Zithromax, a 30 day Steroid burst, Clendomyicin/Rifampin combo, Biaxin and I'm sure I'm missing something... The only med change that brought a somewhat positive change was Cefdinir/5 day steroid burst with the onset of an ear infection/croup. We noticed a subtle change, and there was a glimpse of hope. Then a viral shows up or strep is in the air and back to square one.

 

With that being said, I in no way am bashing Dr. T or discounting the endless chats he tolerated with me as I was sobbing in Wegmans parking lot or him contacting me at 4am EST while I was in Scotland. This man believed in my gut feelings, and he believed in a hope that we would find a good place that my family would be able to function in. As the year passed on, I found it more challenging to contact Dr. T as well as getting a response as to what we were to do next.

 

I will tell you we did 40K dollars worth of genetic testing, we have followed his lead from day one. I have poked and prodded my boy with needles and exams. I have fed him countless supplements for 7 months now. July - November 2013 we saw a change. We had our son back for a brief moment in time. Life was good. No one was being hurt physically on a daily basis, guards were somewhat let down. Then....virals kicked up at school, strep was floating around in our small private school. Daddy was ill and before we knew it we were in a full blown flare again.

 

The choice to see Dr. B was an easy one. I needed yet another opinion as ds5 wasnt getting better and I couldn't get an answer from Dr. T. I will do my best to share what we learned this past Friday in hopes that someone somewhere can learn from our experience....

 

1) IVIG is necessary. Ds5 has consistent low IgG levels to the point that Dr. B said this kid has no immune system.

 

2) A patient history from our drug store was one of the most shocking documents I have looked at. The amount of med changes ds5 has had is shocking. With NO significant changes. Lesson - pull your kids prescription history and trust your gut!

 

3) Labs - mycoplasma has ALWAYS been an issue for us. As it turns out, my husband has very high mycop levels since the first labs Dr. T ordered. A Z pack was called in for everyone in the house. Dr. B's opinion was that no z pack would ever kill off those numbers in my husband. He has had this since 10/12. Could he be reinfecting Ds5 without us even being aware of it?

 

4) Lyme - testing is in the works. Ds5 had a bulls eye that I thought was ring worm. Is it possible that Lyme & co infections are a part of our story? Lesson - in the beginning of our journey, a mom on this forum asked had we explored Lyme? Ah...yes... almost 2 years later.

 

5) When you know better you do better. We know more this week than last week. There is a plan to make a plan on March 6th when we return. I loved that Dr. B told Ds6 that he thinks we can help Ds5 and make life better for the family.

 

So, we are on Amox/Clav 600/5ml 2xs daily - a much heavier dose than we have ever tried. I'm noticing a kick up in his PANDAS symptoms that I'm wondering tonight could this be a herex? I will continue to have faith, I will continue to stalk posts on a regular basis. I know PANDAS isn't going away tomorrow, tonight at least I have hope!

 

KK

We are just beginning this journey with PANS/PANDAS, but I want you to know that I appreciate your post and will probably need to reference it again, and again in the near future. I am going to school here on this forum. THANK YOU! I have replied with our story in "Need Advice- New Here"s topic heading, if you are curious. BTW- I am especially interested in what you find out about Lyme, and your experience with this Dr. B, Not sure but Is this the Dr. that diagnosed the Sneezing Girl? Sending positive thoughts your way…

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Dr. B is great and incredibly caring. He truly cares so much about our PANS/PANDAS kids. One warning though: make the most of every appointment you have with him because it is very difficult to get a response from anyone in the office between visits - emails or phone calls. I know it is because they are overworking themselves; nonetheless, be prepared for it.

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Hi Kleek, If you live in New York and your son had a bulls-eye rash, you should assume he has Lyme. The rash itself is considered enough to diagnose, without testing. Not to mention the fact that so many kids with PANDAS/PANS turn out to have Lyme. I understand that Dr. B needs to test, but I just wanted to mention this, as the antibody testing is so horribly unreliable.

 

I'm sorry you've been through so much, but glad you have a new game plan and new hope! Hang in there.

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Thank you all for your posts. I will sleep with one eye open until my son is healed! I will dig into IgG levels and post this weekend for you flmom. We changed to the higher dose of Amox on Saturday. I'm excited to see if he wakes dry. This will be the 3rd night in a row if so. We have never had a consistent dry bed in 2 years. In hindsight, one of the first things we notice in a flare is the emptying of 3 bladders on a nightly basis when things are about to get real challenging. I will never doubt that Mom-sight ever again.

 

He has been a bit exacerbated for days 1-4 with the med change, however last night seemed to a bit slower paced. Herx? Coincidence? I make notes and pray. Could this be a positive change?

 

All my very best to this group! Thoughts and prayers for healthy babies for ALL of us.

KK

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I know you don't want to hear this but with the consistent bed wetting it could indicate a mold issue. I highly recommend the mycotoxin urine test by RealTime Labs. Most LLMDs know of the test and even perhaps secure kit prior to Dr. B visit and have him sign off while there. Often any individual with mold toxin issues will have difficulties with treatment and not make much headway on antibiotics.

 

Do you know if he has been exposed? Common to have mold issues with Chronic Lyme.

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