Dr. K's Prophylactic Dose - any luck increasing?

[lmi1973]

Hi, I've been reading more than posting. I can't say how much this forum has helped me get through the past few months! My son, 10, was diagnosed with p.a.n.d.a.s. by Dr. K in January (no local doctors in Michigan where we are)... We are scheduled to have ivig next week. I'm worried that he will put us on 250 mg of augmenting for prophylactic and from reading other posts, not sure if this is adequate. Has anyone had any luck getting a stronger prophylactic dose for their child after ivig? My son is 80 lbs.

 

Also, I'm having a heck of a time trying to get his regular pediatrician, his ENT, and even Dr. K to recognize that he has a sinus cyst that no one has ever determined if infected or not, whether this should be removed... His pediatrician recommended getting ivig done as scheduled by Dr. K and then clearing up sinus issues afterwards. His cyst is in his right side of maxillary sinus and this same side has been noted to be swollen by ENT. But, since my son doesn't complain of headaches or loss of taste/smell, they don't feel it is necessary to remove it. I'm partly venting here, but definitely asking for some advice/thoughts as well.

 

Thanks so much,

Laura

[SarahJane]

I'm not sure about your case and the cyst...is he currently showing PANDAS symptoms. If so, then maybe it is infected with the absence of any other factors. If he's out of exacerbation, then maybe not. Seems like there's another parent here that their child had a sinus cyst---hopefully they'll chime in with thoughts.

 

But we're on 250mg of ZITHROMAX (46lbs, 7-yr-old) post IVIg. I'm sure Dr. K would dose whatever drug based on the weight. I am under the impression that he's been using zith vs. aug, but I'm not sure about that. We've been on daily for 3 months now...will be on it for a year (tho' the dosage may eventually go to every other day).

 

Good luck!

[EAMom]

Hi!

 

have you contacted Kimballot (maybe she'll post)? Her child had a sinus cyst. Dr. B. in Ct was her doc.

 

Also, I think WorriedDad lives in Michigan. He has a Lyme doc that he likes. Sometimes Lyme docs are good b/c 1) they throughly look for other infections 2) they aren't afraid of antibiotics.

[lmi1973]

Thanks for the response, I'll try to figure out how to contact Kimballot or hopefully she'll post. I really, really am debating whether or not to go ahead with the ivig or to try to get into another doctor who will find and treat the underlying infection. Maybe the cyst isn't infected, but I want to know one way or another! We seee the ENT on Tuesday (we leave Wednesday for Chicago), he had never heard of p.a.n.d.a.s. but seemed interested in it. I just can't imagine that we would get as good of results with the ivig if there is some infection in that cyst left untreated. I was reading how good Dr. Beals is in MD or D.C. and might even try calling there to see how long it would take to get a consultation/appointment.

[nicklemama]

We've got a small Yahoo group called GreatLakesPANDASSupport. We'd love to have you join. Most of us are in Michigan.

[kimballot]

Thanks for the response, I'll try to figure out how to contact Kimballot or hopefully she'll post. I really, really am debating whether or not to go ahead with the ivig or to try to get into another doctor who will find and treat the underlying infection. Maybe the cyst isn't infected, but I want to know one way or another! We seee the ENT on Tuesday (we leave Wednesday for Chicago), he had never heard of p.a.n.d.a.s. but seemed interested in it. I just can't imagine that we would get as good of results with the ivig if there is some infection in that cyst left untreated. I was reading how good Dr. Beals is in MD or D.C. and might even try calling there to see how long it would take to get a consultation/appointment.

 

Hi Laura - Welcome to the forum.

 

Yes - my son had a huge cyst (mucocele) that was the source of his last exacerbation. His was a bit different, though, because it was in the tiny ethmoid sinus by his eye and was damaging the bone. Here are some links that I had posted along the way.

 

http://www.latitudes.org/forums/index.php?showtopic=8291&st=0&p=68366&hl=mucocele&fromsearch=1entry68366

 

http://www.latitudes.org/forums/index.php?showtopic=8511&st=0&p=70352&hl=mucocele&fromsearch=1entry70352

 

http://www.latitudes.org/forums/index.php?showtopic=8648&st=0&p=71680&hl=mucocele&fromsearch=1entry71680

 

 

I do think it is important to get a good evaluation of the sinuses. That is the main source of my son's PANDAS exacerbation. If your son has a cyst he probably has other inflammation as well, and possibly allergies or immune deficiency to IGA or deficeincy in s. pneumoniae titers. I agree with you that all of these are important to know before you decide on IVIG. Also, if you are seeking insurance coverage, these pieces of information can help make a case for IVIG. In addiiton, once you have IVIG you will not be able to get titers drawn for several months as the antibody levels will reflect the IVIG and not the child's true immune function.

 

I've been reading posts on this forum for a while and I do see cases where people have gotten IVIG while there is still an underlying infection and then the IVIG cannot do its job because the body is still fighting infection (this includes lyme, sinusitis, strep, mycoplasma). I do agree that it is important to know what you are dealing with before IVIG.

 

My understanding is that most doctors would leave a sinus cyst alone if it is not infected, not blocking the flow of mucus (which can lead to infection), and not growing to the point of remolding the bone. Sinus surgery has its own set of risks, so you need to weigh that carefully. I know Dr. B really stressed to us that sinus surgery is a last resort for sinuses - but in our case it was a necessity.

 

Please send me a PM if you want more details.

 

I wish you all the best - you clearly have a good idea of where you need to go with this. Your son is very fortunate!

[Mary M]

Hi Laura Mary,

 

I'm sorry I can't speak to the sinus cyst issue however, I am in Michigan and as nicklemama offered, we'd like to welcome you to our Michigan group. PM me and I'll get you connected to the Michigan group.

 

RE: your prophy dose questions. I can only speak to my dd's med dosing but...My dd12 received IVIg from Dr K in June. He had her take 875mg augmentin twice per day for two weeks then he put her on a maintenance dose of 500mg of augmentin once per day. During periods of increased symptoms post IVIg he has returned her to 875 mg augmenting twice per day for 14 days. If symptoms relent then she returns to 500 mg once per day. She was 75 pounds at the time of IVIg, if it helps to compare our kids' weights.

 

Mary

from Michigan

[lmi1973]

Thanks so much everyone!! I will try to figure out how to PM soon. I think I joined the yahoo MI group, but haven't followed it as closely as this one (due to limited free time). We are seeing ENT on Tuesday; I just in my gut feel like the cyst is infected b.c. his right nasal passage was really, really swollen so they ordered ct scan to see why since he's not allergic to anything and found the cyst. They have never swabbed or done a biopsy, just instructed to take nasonex. Again, thank you so much - on to putting together a game plan prior to ENT and to speak more to my husband about postponing if ENT thinks infected!!!

[Worried_Dad]

Hi, Laura:

 

Yeah, we're from Michigan, too (SW side). Dr. K treated our ds as well. After 3 IVIG's weren't helping as much as expected, Dr. K did agree to increase our son's augmentin dose to the "Saving Sammy" dose (1000 mg of XR twice daily). That made a HUGE difference for us. If you have concerns, I'd definitely discuss them with Dr. K.

 

And we did recently find an excellent LLMD whom we really like. He splits his time between Detroit area and Grand Rapids, so he covers a good chunk of the state. PM me if you'd like more details on him.

 

Good luck!