Whos more credible Dr k or Dr L ?

[melanie]

Having a phone consult with dr k next wed wanted to know in the world of pandas whos got more credibility.I see alot of dr latimires writings none really with dr k.Im tring to convience my dr that titers arent everything.And to do more iv Hope todays a great day for everyone .PLease

 

melanie

[sf_mom]

I don't know about Dr. Latimer but Dr. Kovacevic has been treating PANDAS for 10 years and is about to publish his findings along side Mayo Clinic and John Hopkins..... Unfortunately, he is not published yet. I found him to be very compassionate, knowledgeable....... I got the feeling he is not stopping until there is a widely accepted treatment.

[bronxmom2]

Having a phone consult with dr k next wed wanted to know in the world of pandas whos got more credibility.I see alot of dr latimires writings none really with dr k.Im tring to convience my dr that titers arent everything.And to do more iv Hope todays a great day for everyone .PLease

 

melanie

 

 

Melanie, have you had your son tested for an primary immune deficiency? I know this isn't what you want to hear, but from your experience with IVIG (effects seemed to wear off after a month) it seems like your son might need it monthly. In which case it seems like you might need an immunologist to prescribe it monthly? My understanding (could be wrong): Dr. K will probably do IVIG again, but you will have to pay out of pocket and hope for reimbursement. Dr. L might be hesitant to order it again since you have just done it, and there may be more going on than just PANDAS. Are you working with an immunologist? If you can find an PID, the ped might do more ivig for that...

[sf_mom]

I agree with BroxMom2, plus your child needs to be on a daily antibiotic to fend off any future strep infections. If I remember correctly you are still working on securing prophylactic antibiotics, correct?

[lss]

Melanie,

 

We did IVIG with Dr. K and then we did PEX with Dr. Latimer. While I think they are both knowledgeable about Pandas, Dr. K will only do IVIG, where Dr. Latimer can and will do both. Dr. K is a pediatrician, where Dr. Latimer is a neurologist and therefore can do more, ie, the longer steroid rx. Dr. Latimer is highly respected at Georgetown.

 

I do know that there are kids that Dr. Latimer has prescribed monthly IVIG after PEX because of low IGg levels. Dr. Latimer actually does not do the PEX or IVIG, she does diagnose and then the hem/onc. drs at Georgetown take over. When you have IVIG with Dr. K, he actually is present the entire time the kids have the IV in. The nurses actually administer the IVIG.

 

As for insurance, we paid out of pocket with Dr. K, as with Dr. Latimer, her office staff made sure that insurance covered our PEX, and they work with the insurance to cover the IVIG as well. It may be that they use different codes.

 

Both will take phone calls from your doctors without charge, if that is what you are looking for, to consult with them regarding your child.

 

Linda

[bronxmom2]

Wow, this board is such an incredible source of information!

This could be a case study for the revolutionary power of the internet in information-gathering.

Linda, can I ask you... was PEX more effective than IVIG for your child?

[EAMom]

Hi Linda...

did IVIG not work completely or not at all for your child? what led you to follow up with PEX? (You may have already posted this at some point!)

[lss]

We did IVIG with Dr.K at the end of May and we saw some improvements. The first 3 weeks were great, then the next 3 weeks were really bad and then things calmed down, except for the tics. They were still present, although not as bad as before. With school starting in August, we decided to make a appointment with Dr. Latimer to see what she had to say.

 

What she saw was more chorea movments, and since we had already done the Cunningham tests, based on his levels of CamKinase, 164, she recommended doing the PEX. We returned to DC in Sept for PEX.

 

On the second day of Pex I saw a major improvement in his behavior, his manners were back, tics were gone, even while he continued to play video games while doing PEX!

 

Post PEX, like Alex who posted here about his son having a return of some of the Pandas symptoms, we too have periods of absolutely no symptoms, and then there are days when we still hear some vocal tics, and have the separation anxiety. Overall, my husband thinks things are much better than before, but as he says, we want everything perfect.

 

I think with both IVIG and PEX it takes time for these kids to completely heal. I do notice that at the end of the day, when he is tired we hear the tics and see some chorea.

 

We decided to have him home schooled for this year as well, because we were concerned with the H1N1 virus and to give his system a chance to heal. We have a teacher who comes in 4 days a week for 5 hours each day.

 

A bit of history: my son who 10 yrs old started having symptoms back when he was 5 yrs old after having pneumonia and constant uri, but the symptoms stopped after a few months. At one point during this period, one doctor thought he might have cystic fibrosis, because he was constantly having sinus infections. Fast forward to 2007 when I took him in to get his varicella and Hep B shots, within 2 weeks the tics started. Even back then, the neurologist in Fl. suggested getting his ASO titers taken, when we moved to TX. I completely forgot, until school started and he got strep in Sept, Dec, March and then again in June. His titers by then were only slightly elevated. His pediatrician diagnosed him with Pandas, but will not give antibiotics. The neurologist suggested we remove his tonsils and adnoids, which we did, but again when I aked for antibiotics, was told it was not standard procedure. His chorea tics, separation anxiety, and ocd continued.

[T_Mom]

I entirely agree with you -- it does seem that it takes time for the healing process across the various treatments.

 

Did your son ever have OCD issues with this?

Is he "home schooled" by a teacher provided from your school system? (Special ed services?)

Is he on antibiotics now? If not it seems like that is something many are finding is important--

 

All the best--

[EAMom]

Yes, I'm also curious about the abs...was he on something for a while b-4 IVIG? what ab and dose? what was he on after IVIG?

[bronxmom2]

Thank you so much for answering.

 

I am also homeschooling... but I wish we could get a teacher to come 20hr/week!

 

Has your son suffered academically because of PANDAS? Mine has severe attentional problems, which is the biggest reason we are homeschooling... though giving his system a rest is another big reason. He is way ahead of his agemates in some areas, but significantly impaired in others. I just don't see how a school could meet his needs right now.

 

Did you feeling that both IVIG and PEX helped your child's OCD? You mentions that his tics are lingering, but what about the OCD?

 

Thanks!

[melanie]

Having a phone consult with dr k next wed wanted to know in the world of pandas whos got more credibility.I see alot of dr latimires writings none really with dr k.Im tring to convience my dr that titers arent everything.And to do more iv Hope todays a great day for everyone .PLease

 

melanie

 

 

Melanie, have you had your son tested for an primary immune deficiency? I know this isn't what you want to hear, but from your experience with IVIG (effects seemed to wear off after a month) it seems like your son might need it monthly. In which case it seems like you might need an immunologist to prescribe it monthly? My understanding (could be wrong): Dr. K will probably do IVIG again, but you will have to pay out of pocket and hope for reimbursement. Dr. L might be hesitant to order it again since you have just done it, and there may be more going on than just PANDAS. Are you working with an immunologist? If you can find an PID, the ped might do more ivig for that...

 

 

I do wqnt him dxes with an immune issue but how? When he was 3 or 4 he was and had iv 1x per month .So your saying if the iv wore off after 30 days its likely that he has a defiency? How do I convince the md.Yes I want to get dr k to speak to the neuro if I need to Help!!!

 

melanie

 

ps he wont do math again

[bronxmom2]

You are in NJ, right?

Why don't you go SEE Dr. Latimer instead.

She will write a script for immunological blood work, which you can take to a lab or to your regular pediatrician.

If he had a PID before.... it would make sense that he still has one now.

Do you have documentation of his earlier immune deficiency?

 

You need someone who can see the big picture--- both the PANDAS and the PID...

What about Dr. Rosario Trifiletti?

He's in NJ.

[EAMom]

You are in NJ, right?

Why don't you go SEE Dr. Latimer instead.

She will write a script for immunological blood work, which you can take to a lab or to your regular pediatrician.

If he had a PID before.... it would make sense that he still has one now.

Do you have documentation of his earlier immune deficiency?

 

You need someone who can see the big picture--- both the PANDAS and the PID...

What about Dr. Rosario Trifiletti?

He's in NJ.

 

I agree

[lss]

I entirely agree with you -- it does seem that it takes time for the healing process across the various treatments.

 

Did your son ever have OCD issues with this?

Is he "home schooled" by a teacher provided from your school system? (Special ed services?)

Is he on antibiotics now? If not it seems like that is something many are finding is important--

 

All the best--

 

TMom

 

Yes, my son did/does have ocd as one of the issues. He was in a private school, prior to being home schooled. We are doing the K12 International program now and have hired a private teacher to come in. He also has a real virtual teacher thru the K12 program. He is on antibiotics, 25 mg per day of azith and has been even before IVIG.

 

Linda