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Sham7rock

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    Sham7rock reacted to LNN in Cognitive effects of PANDAS   
    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.
  2. Like
    Sham7rock reacted to MomWithOCDSon in Cognitive effects of PANDAS   
    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!
  3. Like
    Sham7rock reacted to LNN in Treating OCD with Minocyline   
    Yay for your oldest!!! Like yours, mine is off meds (3 yrs now) and an academic success. The kid who we once argued about holding back is an honors student and headed into HS next year, complete with obnoxious teen attitude. I used to tell people that because they're supposed to outgrow pandas, I was the only mom I knew who looked forward to having a teen. I should've known better! But at least it's normal stuff and I'm happy to turn gray over simple things.
     
    Like you, my youngest is struggling. Thankfully OCD is minimal but she's often a stunt-double for Linda Blair in the Exorcist. She's just about mastered the head spinning completely around and instead of hurling projectile vomit, she hurls insults and irrational accusations. She battled mold issues in school last year - almost landed her in the hospital twice. So she's homeschooled this year - something we never imagined doing. The issues from last year took a toll on her and in Nov. she crashed, developing a range of neurological issues. Still trying to dig out of that hole (lab results pending for a variety of things). But...with every suckish challenge, there are gifts. Homeschooling has been an awesome experience - her self-confidence has returned, she's able to move at a pace that's good for her health, and no skeptical administrators to make us feel defensive and stressed. She's developed a full range of creative interests and is considering homeschool next year, whether her health requires it or not.
     
    So I feel like I'm 80 yrs old, but at least we can both look to our first borns and know it can be done! I hope your journey starts to get easier - you so deserve it!
  4. Like
    Sham7rock got a reaction from MissionMama in PANS/PANDAS doctor in Seattle who does IVIG?   
    Hi MissionMamma - I'm still figuring out how this forum works and didnt realize you had replied. Yes I am referring to Seattle Children's Hospital. We have seen Dr. French in Psychiatry and Dr. Skoda-Smith in Immunology. Both were clear they are not PANDAS specialists. We were supposed to see Dr. Ming in neurology, but they called today and switched us to Dr.Vlcek. - no idea if he is PANDAS friendly or not. Good advice about just not mentioning PANDAS! Wow I'm blown away when there is clear literature and a PANDAS/PANS clinic at Stanford that there are not more resources at Seattle Children's. I did hear about Lauren Plawner and will explore that further ... was trying to find someone at children's because we dont have the best insurance so Children's works best for us. It appears my son may not have had a good response to his Prevnar 7 vaccination as an infant so the immunologist we saw is recommending we do a Pneumovax 23 shot to really test his immune systems ability to respond. I plan to wait till after I see Dr. Gbedawo to do this vaccination. All of what you said in your post makes so much sense from kissing frogs to falling off cliffs!! This has been a nightmare! Hoping Dr. Gbedawo will be able to help us. So far 2 months of missed school. I would love to talk with you more and will PM you my contact info. Thank you - Erin
  5. Like
    Sham7rock reacted to mama4 in Need advice on college readiness   
    Yes! This is spot on. It is so hard for these kids (and parents) to have a mystery dx. At least now we know it is PANDAS and have an explanation. It is a relief in a way. In her book Infectious Madness, Harriet Washington discusses Pandas and asks whether parents are just looking for a biological explanation for their kids' psychiatric issues (because of the stigma). She seems to conclude that that is not the case and that Pandas is real.
     
    You can see why the autism community is interested in Pandas. The encephalitic/autoimmune connection between the two is a clue. Also the fact that some kids have lost their dx for autism when treated for Pandas is very telling. I would love to see some data on this-how many kids who were dx'ed with ADHD or an autism spectrum disorders were able to lose the dx after treatment.
  6. Like
    Sham7rock reacted to makeitfromscratchmom in Seeking support and PANDAS friendly resources in Seattle   
    I am no longer in Seattle, left almost two years ago, but we went to see Dr. Amy Derksen at https://www.holistichealingarts.org/ She is very knowledgeable about PANDAS/PANS and we were with her for more than 3 years and had great success. If you want more from me just let me know. Both of my kinds have PANDAS and had very different symptoms but many of those you describe. Good luck and you will see results. I know it is hard now but we have done quite well with my two and they are now 13 and 14 and almost appear normal, although they do have their moments. Hugs from another Mama
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