Cognitive effects of PANDAS

[ejh]

For parents who have a teenage child with PANDAS that was treated, how long do you see cognitive effects? My son was diagnosed when he was 12 after an acute very serious episode, although he clearly had symptoms since he was about 1. He had a T&A and IVIG within 6 months of diagnosis, and has been on antibiotics since diagnosis. He is a different kid: the anxiety, sleep problems and restrictive eating are gone, as well as the OCD. He is now 14. He is a smart kid, but he still has clear working memory problems, and attention problems. His math skills are terrible. He has been at a very supportive Montessori so far, but he needs to go to high school next year but I am afraid he will struggle and fall through the cracks. We applied for a supportive private school but he did horribly on the test so they will probably not accept him. Do these eventually improve? Does working memory improve? Attention? Would he need more IVIG? Any other suggestions?

[MomWithOCDSon]

EJH --

 

My DS was also diagnosed at 12 and, like yours, was prior to that, an academic over-achiever. The fog and distraction and memory issues were very distressing for him, so the biggest hurdle we had was getting him to experience some incremental successes so that he didn't give up altogether and decide he was "never going to get it," etc.

 

Honestly, I would say that it was close to 4 years after dx and commencement of treatment before he was himself again, academically speaking. Sorry, as I'm sure that's not good news. But the good news is that he did, eventually, get back. In the meantime, we worked with his school and did a lot of home coaching so that he didn't fall behind, could do away with "busy work" and repetitive drills and focus, instead, on demonstrating mastery of concepts in a more efficient manner, etc. With math, he seemed to do better when he worked a problem both on paper and out loud, so one of us would sit beside him while he worked the problem and explained it out loud, step by step, to either his dad or I. And one step at a time; if he lost focus, we would gently refocus him to get to the end of that one problem. Lots of breaks and mini-rewards. With major reading assignments, meanwhile, we got permission from the school to do some of the reading TO him while he listened, and over time, we were able to switch more and more of the reading responsibility to him -- first sections out loud to one of us, trading off, but eventually complete solo, silent reading came back to him.

 

We were in a public school, so we wound up getting an IEP for some of these accommodations; additionally, that IEP gave him a resource period during the day where he could catch up on anything he'd had trouble focusing on in the main classroom, along with a case worker who got to know him and the challenges he was having at the time and coach him during the school day. She also helped run interference with any of his regular curriculum teachers who, despite being informed of his condition and the accommodations at the top of the school year, didn't always "get it" or him.

 

By the second semester of his sophomore year, he was pretty much back in the game entirely, and by his junior year, you'd never have known he'd struggled so intensely a couple of years before. I would just suggest that you do what you can to tackle it now so that a pattern of defeatist thinking, anxiety over schoolwork and then avoidance of it altogether doesn't set in and take up residency.

 

Now that he's away in college, I think a lot of the coaching he received during those tough years has served him well. Every college kid hits bumps with a tough class or a tough professor, distractions, etc., and he's no different. But at least partially because of all those really tough years, he built a tool box that he can still reach into when he needs to.

 

All the best to you!

[ejh]

MomWithOCDSon

Thank you so much. It is actually really good news for me because I am getting really worried about permanent damage. So a full recovery of academic skills and now in college is really good to hear. My son is getting very discouraged and still needs so much support, and reading what you did for your son is very helpful. I will tell him your story.

[LNN]

My son struggled with Pandas/strep/lyme/mold from the ages of 6 to 12. It took him about 2 yrs to fully recover his cognitive/academic abilities. He went from an "IQ" (using a crude standardized test) of 93 to 116 and I suspect he'd score higher if tested now. The tests showed large discrepancies between his verbal abilities and his spatial math abilities. These have narrowed as he's recovered.

 

Two things, in addition to fighting infections, really helped him academically. First, he was diagnosed with pyroluria - a zinc/B6 deficiency caused by his body produces excess pyroles, which are a waste product in the body's production of heme (blood). Pyroles bind to zinc and B6 and as your body eliminates the pyrole waste via urine, you end up peeing away zinc and B6, creating a deficiency. Taking a very high dose of zinc/B6 helped almost immediately (we use the supplement called Core by Biopure) and he will probably continue to take it well into adulthood.

 

The second supplement that helps is phosphatidylserine. He takes PS10 from Jarrow. It plays a big role in concentration and focus. Phosphaytidylserine is one of the primary ingredients in Vayarin - an ADHD medication. He only takes it during the school year and it's not habit forming.

 

I also try to remind myself - daily - that my role is to help my kids grow into healthy adults - mentally health, physically healthy, emotionally healthy. Grades are way down on my list. Life is filled with "grades" - even beyond academics. But what matters is helping my kids believe in themselves and to not focus on external judgments. If he's not ready to handle a traditional high school, there are online options, homeschooling, etc. Many ways to have a "successful" life. Sounds like your son has great support from you. Don't underestimate how important that is.

[jan251]

For what it's worth, IVIg helped my child's attention and executive function even though we are still hunting for a fix for the OCD. He's doing well in school, is very advanced in math and is set to start at a private high school in the fall. We did IVIg infusions every three weeks for several months, though I noticed the attention improvement right away even with low dose. (We paused infusions for tonsillectomy; I'm not sure what we're doing next re: high dose vs low dose, but that's a long story)

 

Each kid is so different. I would think that treating PANS/PANDAS would help - if you haven't lately, perhaps a check of the immune system is in order, e.g. IgG levels and so forth - bloodwork with an immunologist. I'd also want to retest for a bunch of infections, check strep titers, etc. to make sure nothing has been missed, basic PANS/PANDAS stuff.

 

Generally, when I think of executive function stuff, I think of methylation/B-vitamins and of course possible infection/immune system involvement. So many possible factors.

 

I'm still always trying new things. LOL supplement of the week is alpha lipoic acid - we'll see how far we get as I'm unclear on dosing.

Edited April 2, 2017 by jan251

[DreamingPanda]

Everyone is different, but for me, it was about a year and-a-half after my first IVIG and six months after T&A that I really felt like myself again and didn't notice any significant cognitive difficulties. I relapsed last year, and everything came back, but I'm doing much better now. My cognitive improvements following IVIG were like night and day. Whenever I flare now, the cognitive problems return, but a steroid burst pretty much always takes care of them. I still can't remember or recognize faces very well and have trouble telling new people apart, so I might be getting some kind of occupational therapy for this. Not sure yet. But almost certainly not more IVIG just for this one issue.

 

Unfortunately, I also still have a great deal of anxiety that makes school difficult. I'm so used to having trouble concentrating and understanding assignments, that I'm always anxious about starting any homework because it used to be so dreadful, so it all still takes me a long time, but not because of any real cognitive problems--I just anticipate them even though they're not there anymore. I'm sure there's inflammation exacerbating my anxiety, but it also feels like I truly do have purely psychological fallout from ten years of PANS, too. I think it's important to distinguish this sort of PTSD-like anxiety versus cognitive symptoms because you'll treat them very different ways.

[MC2]

This is a very helpful post. Our 10 yrs old DS is now in recovery after awful flare/diagnosis last year. He is soooo much better. But just as you all have detailed, a significant remaining symptom is cognitive struggles at school (especially reading and writing, but also anything that falls in second half of the day/when brain fatigue sets in). The main concern we have is keeping his frustration level down enough so that he doesn't get so frustrated that he refuses to go (it is struggle to get him there as it is - not due to social but all due to academic anxiety). We did some partial days at start of school year, but it is clear that there is a fine line between pushing too hard (go all day) and allowing accommodations that while nice (half day), then make him get too "out of it/too far behind" so as not to ever be able to go all day for the rest of year ("I don't know what the class is doing so I am not doing to do that at all). He does like/need the social aspect of school (thank goodness), so homeschooling really does not appeal (not to mention work would prevent that).

A few questions for you all:

1. how to really pinpoint what the problem is and thus how to support?? we keep asking for the school to help, but while they appear to do their best they are not experts on this. it is very difficult to distinguish whether it is simply cognitive fatigue or true inability to do certain academic tasks. We did neuropsych testing (high IQ but low processing speed and relatively poor working memory). But somehow that does not really seem to map well onto understanding the academic abilities/subjects of a 5th grader.

2. has anyone ever tried any of the ADHD drugs (ritalin etc) for PANDAS kids in recovery mode? On  the one hand, they are supposed to "help concentration" on the other hand, I hate to use another drug (we are on plenty: abx, plaquenil, alleve, ssri). It is just so awful watching them struggle and having anxiety about their cog deficits...

3. has anyone tried "cog med" training? It sounds good on the website but then I don't want to put son through yet more stuff if not useful.