plasmapheresis

[bigmighty]

Thanks. I don't believe those recommendations will fly with DS though. He has looked into but ultimately ruled out all of the various local programs.

 

He is interested in studying mechanical engineering. The closest program that's a match for him is about 2 1/2 hours away from our home. If he gets in, that will put him about 2 hrs away from his internist. Not super far in case of emergency. Also close enough for us to come and check on him fairly regularly. His biggest challenges are weight maintenance and recognizing early signs of a flare. Worst case scenario, we have to help with those things as best we can from 100 miles away. Of course, if there were a way to bring about a more lasting remission so he has a shot at more than maintenance & management, we'd love to pursue that during this school year - hence my original post.

 

For senior year, DS is taking five AP classes and two college courses, which I'm guessing is comparable to the work load freshman year in college. Yes, he will have to learn to live on his own, and there will be challenges. But he can't imagine being happy with less than a full course load or settling for a school that he doesn't feel is a good educational match. He understands that he may need to make mid-course college plan corrections if his preferred situation doesn't work out. But he does want to try living away.

[dcmom]

Big mighty- I think he should go for it. The surest way to fail is not to even try, right? I am a big believer in letting our kids live a normal life. We are heading down the college path soon. My high achieving college sophomore is starting to look at schools. She struggles with periodic episodes of debilitating OCD due to pandas. She is looking at schools within 5 hours of us. (I am hoping for closer). We will plan, have docs on call, buy tuition insurance, share 504/IEP with school, and be there for her if she gets sick. I don't think there is another option😊

[Mom23boys]

Just out of curiosity, what antibiotic is he on where he still gets strep every few months? I would spend the next few months trying to find one where he didn't have break through strep if you haven't already done so . . . And it is likely you have already tried this but what about a tumeric or other natural inflammatory supplement daily. I can understand not wanting to do the ibuprophen every day but perhaps something else. Also Dr. Latimer likes Aleve even better than ibuprofen I hear in some cases and that is much longer acting - maybe that will help him keep his appetite throughout the day so he can actually put some weight on. If it works, I may do that for a week or two periodically. . .

[bigmighty]

He was off of antibiotics entirely for 20 months, during which he got strep every 8-10 weeks. He went on Augmentin 250 once daily this summer and managed to go 100 days strep-free, but then got strep again. At the start of the summer, he briefly tried Azithro 500 once every other day but found that he could not bring himself to eat on the days he took that medication, so it was switched.

 

He is allergic to tumeric.

[dcmom]

big mighty- I missed the continued strep in your original post. Does he have tonsils? Clindamycin is the med prescribed for a strep carrier- have you tried this?

[mom24pandas]

Big Mighty-can't comment on plasmapheresis as we haven't done that, but agree with dcmom--as long as he feels ok, go for it. Some schools will actually refund tuition for medical withdrawal (depends on the school), and if he works closely with the school's disability support office, they can help with everything from preferential course selection times and accommodations in classroom to placing him in a good residence hall health-wise (A/C, no dust or mold, etc.) with a carefully chosen RA and whatever roommate situation (single, double, triple, etc) would best support him. If he has a good roommate, that may also be someone who can be an extra line of communication if he feels ok opening up about the PANDAS stuff. I had several college friends (way, way back in the day, haha!) whose parents communicated often and closely with their roommates to help monitor stuff like eating disorders and mental health. So agree it can be done, just carefully....again, sorry not to be much help about your main question but hope that you are able to get some good answers on that as well. PS-I don't know from your description if your son actually uses stuff like testing accommodations now, but absolutely make sure he puts them in place next year--much better to have and not use, than the reverse!

[bigmighty]

Not sure if DS actually qualifies as a strep carrier, since he has negative throat cultures between infections. It is definitely worth asking Dr K if clindamycin is worth trying.

 

He does have a 504 and the plan is for accommodations to continue in college along with a single dorm room. Thanks.

[Mom23boys]

Another abx possibility is the Bicilin shot. Dr. L put my boys on it. It is a once a month shot, intramuscular so it is quite painful. The benefit is that you won't have to worry about it the rest of the month, you have a continual level of abx, and it addresses strep effectively (and apparently is good for intercellular strep). If compliance could be an issue away from home (missing pills, etc.), this might be an option. They may be willing to give it at the health center as well. It must be refrigerated but he could keep it in his dorm fridge . . . just a thought!

[bigmighty]

Mom23boys - What has been the experience of your boys with respect to the Bicilin shots? Are they "working" either as a prophylactic measure or treatment? Thanks

[Mom23boys]

Hard to tell. No strep while on bicillin but no improvement either (tics main symptom). This did not improve until tonsils were out, and then improvement of all symptoms in younger child. Older still has tics, but only symptom. He is now on azith and cefdinir. I am going to do some additional blood tests to be sure we aren't missing an infection that is not strep related, even though we have a clear strep trigger. I have heard of numerous stories where Bicillin is very effective though. Used a lot in Italy.

[bigmighty]

Had phone consult w/Dr. K today. He recommended circulating immune complexes testing followed by having tonsils and adenoids removed. Then IVIG a month or more later 1.5g/kg. Sounds like a plan. Hoping insurance carrier agrees.

[ibcdbwc]

Bigmighty can I hijack your post to ask how your son manages such a challenging course load during a PANDAS flare? My DS is freshman in high school taking all honors et cetera. But during a flare, he can really fall behind. He has insomnia, memory issues and difficulty processing along with the OCD et cetera for at least 7 days before emerging. What is normally an 100 becomes about 80 if he's lucky during the flare. When not flaring he is able to handle his course work easily. I guess I'm just looking for hope - as I see these posts about kids going off to college. Any tips? Did it get easier to manage as he adjusted to high school?

Edited November 22, 2015 by ibcdbwc

[DsMom]

DS15 reacted horribly to steroids, and wanted nothing to do w/ pheresis but we forced him to in 2013. It put him into a tailspin, exacerbated everything for about 7 weeks then super little positive footsteps forward began to occur. It was a game changer for us, plus he began a valid Lyme treatment.

Good luck with your decision, take care,

ET

[bigmighty]

Bigmighty can I hijack your post to ask how your son manages such a challenging course load during a PANDAS flare? My DS is freshman in high school taking all honors et cetera. But during a flare, he can really fall behind. He has insomnia, memory issues and difficulty processing along with the OCD et cetera for at least 7 days before emerging. What is normally an 100 becomes about 80 if he's lucky during the flare. When not flaring he is able to handle his course work easily. I guess I'm just looking for hope - as I see these posts about kids going off to college. Any tips? Did it get easier to manage as he adjusted to high school?

The first year of high school was very challenging for him. It definitely has gotten easier as he progressed through. When he was a freshman, we didn't anticipate him ever being capable of taking any AP classes. The school has been exceptional. High school teachers are extremely accommodating of students who are able to self-advocate. Asking via email for reduced homework or keyboarding during tests and such always results in ongoing assistance. His teachers check in with him to see if he needs anything or if he can handle the assigned task. There definitely is hope.

[dcmom]

ibcdbwc- Does your son have an IEP? My daughter is able to take honors/AP classes in HS, but thankfully, we have an IEP that can protect her if she has a flare up. Included things like homebound tutoring, lessening of schoolwork during a flare, excused absences, etc. The law requires the school to give an appropriate education in the least restrictive environment- for us, that includes access to honors courses, etc. Of course, we had to hire an attorney to get to this point- but since we have done that the school has offered everything she needs.