What now

[bmom]

I am wondering what to do now. Brief history: my son has likely had Pandas since around 3. He is 11 now. At 8.5 he had an episode that sent me on the Pandas path. I couldn't figure out if he was Pandas for awhile, but I am sure and a little over a year ago, he had Ivig at 10 years old. He was put on 500 mg Aug daily. This seemed to help for awhile. He contacted strep 4 months post ivig even while on aug. We upped it for awhile and then back to 500 and all was ok-not 100 percent but fine. 5 months after that he lost 2 teeth and that brought out more symptoms. The next few months were saw toothed until dr. K said to up it to 1000 mg daily. Things were still up and down. He got h1n1 in Oct which again got us back into problems. We were close to 1 year post ivig at that time and I was thinking it was really not working at that time. Dr k thought we should up his aug to 875 twice daily to see if that helped. For 2 months, we finally got some relief on that and he seemed really good although not 100- still pretty good. Prescription was done for the 875 twice daily. I called dr k yesterday to see what to do. I told him how great my son was doing on it. He said he wants to take him off antibiotics and see how he does since he had Ivig more than a year ago now. Not even a preventative! That scares me for 2 reasons 1. I am thinking dose is keeping things calm that even 1000mg could not do and 2. He got strep on preventative and now he wants him on nothing. What do you guys think. Do you think it makes sence to see how he does and go from there? I guess I am worried he will have trouble again.

[MomWithOCDSon]

I am wondering what to do now. Brief history: my son has likely had Pandas since around 3. He is 11 now. At 8.5 he had an episode that sent me on the Pandas path. I couldn't figure out if he was Pandas for awhile, but I am sure and a little over a year ago, he had Ivig at 10 years old. He was put on 500 mg Aug daily. This seemed to help for awhile. He contacted strep 4 months post ivig even while on aug. We upped it for awhile and then back to 500 and all was ok-not 100 percent but fine. 5 months after that he lost 2 teeth and that brought out more symptoms. The next few months were saw toothed until dr. K said to up it to 1000 mg daily. Things were still up and down. He got h1n1 in Oct which again got us back into problems. We were close to 1 year post ivig at that time and I was thinking it was really not working at that time. Dr k thought we should up his aug to 875 twice daily to see if that helped. For 2 months, we finally got some relief on that and he seemed really good although not 100- still pretty good. Prescription was done for the 875 twice daily. I called dr k yesterday to see what to do. I told him how great my son was doing on it. He said he wants to take him off antibiotics and see how he does since he had Ivig more than a year ago now. Not even a preventative! That scares me for 2 reasons 1. I am thinking dose is keeping things calm that even 1000mg could not do and 2. He got strep on preventative and now he wants him on nothing. What do you guys think. Do you think it makes sence to see how he does and go from there? I guess I am worried he will have trouble again.

 

Did you ask Dr. K. "What next?" if your son's troubles return in spades entirely off the abx? Do you think Dr. K. might be looking at another IVIG if that should happen?

[P_Mom]

Well..I wouldn't do it....find a doc who will keep your son on antibiotics as long as you feel comfortable. That is the reason we switched to Dr. Latimer....Dr. K wanted to take both my sons off antibiotics...at 6 and 9 years of age! No way!!!

[MomWithOCDSon]

bmom and P.mom --

 

Has Dr. K. given you his reasoning for ceasing the abx and what he would propose should there be regression by the kids once off the abx? Off-hand, I would think that wasn't a wise move, either, and it seems to run counter to what other well-known doctors in the field (Dr. L. and Dr. T.) typically recommend under the same or similar circumstances. So why the discrepant protocol?

 

Anyone else with experience with Dr. K. have a similar experience and can share his reasoning?

 

I'll admit I have a particular motive here; we're considering seeing a more specifically PANDAS-oriented doctor, and Dr. K. is, as one might say, more "geographically desirable" than most of the other PANDAS doctors noted/recommended on this forum. I have heard and read, however, that Dr. K. is very IVIG-leaning, which as one treatment option appears to be appropriate; however, if he prefers frequent or repeated IVIG to other potentially viable methods (and much less expensive ones, at that), then it might be cause for reconsideration on our part.

 

Thanks!

[thereishope]

I'm confused. I remember others saying he took their kids off abx and recently I've been reading more posts of people who have gone to him early on in illness and they finish a script w/o a proph, but I guess I never quite put it all together. I just assumed he'd keep kids on proph abx. Does he take them off to just what happens then eventually puts them back on? I'm confused.

 

Hopefully, some more past patients will post about it. Do they get their long term abx from someone else?

[Worried_Dad]

Hi, bmom:

 

Dr. K treats our son, too. In the past, he's been a firm believer that IVIG is a complete cure and that abx are only needed temporarily to guard against strep while the IVIG does its job and healing proceeds to the point where (in his opinion) the child is no longer vulnerable to strep.

 

Have to say, our son's experience was much like yours. He caught strep again twice while on the standard prophylactic dose of augmentin (500 mg daily). We lost all of the ground we had gained after IVIG round 1, and then some: his 3rd exacerbation was the worst yet. In desperation, we did 2 more rounds of IVIG with Dr. K last summer (full doses 28 days apart). Dr. K expected this to "knock out" the PANDAS, but our son had only improved about 20% after 3-4 months. We were running out of options, money, and hope.

 

Then we begged Dr. K to try the "Sammy Maloney" dose of augmentin. For our son, that appears to have been the missing ingredient. He almost immediately started shedding OCD behaviors at a rapid pace and is now probably > 70% back to baseline. We've been on the mega-dose (2000 mg daily) for about 3 months now and have seen no setbacks; not linear progress, but "stair steps up" instead of 2 forward, 1 back (or 1 forward, 2 back).

 

So far, Dr. K has been willing to write refill scripts for the high-dose augmentin, since our son isn't 100% yet. Frankly, though, if he's unwilling to continue for the "Sammy Maloney" duration (1 full year), we'll probably work with our new local DAN doc to continue. After the nightmare of the past 3 years - and the setbacks post-IVIG, even while on standard-dose augmentin prophylaxis - we are not willing to take chances.

 

Dr. K is a good guy and wants to help the kids. I just think that - until very recently, after "Saving Sammy" and experiences with some of his "recalcitrant patients" like our son - he sincerely believed that IVIG was the key and that abx were just a short-term safeguard. I noticed from other posts that he seems to be prescribing higher doses of abx more routinely now, as is Dr. L. Maybe the "expert opinions" of the major clinicians is changing?

[sf_mom]

Bmom: As you know, Dr. K is very reasonable..... Just tell him straight up you are very uncomfortable with an immediate termination of antibiotic due to history. I would recommend a treatment plan over the next year that makes you feel comfortable and propose it to him. For example: cutting the dose back to 1500 per day for 3 months to see how your son does on the lower dose. Then maybe another 3 months at 1250 per day..... if at any time you see a consistent rise (longer than 10 days) in symptoms that he agrees to re up the dose.

 

Again, he wants the best for our children.

 

-Wendy

[peglem]

I think SFmom's suggestion is good. Remember, these doctors (even though they are considered experts) are really pioneers in the field of PANDAS treatments, just like we are. They have more experience only because they have been willing to treat when others have not- but there is still much to be learned and discovered about this disorder.