My best pieces of hard-won experience after decades of figuring this o

[Lotafaith]

Thank you sooooooo much, this is what I love to read the very, very most! I love to read what has worked or what someone has learned in specifics, it really gives me at least a good starting point for some things and a good adjusting point for others!

Really, thank you I know it took a long time to write all that but I sure would love to start a thread of everyone writing something similar, I feel as if many of us could benefit, I know me and my family for sure!

 

Lotafaith

 

 

 

Tomorrow is my birthday and, instead of tackling the pile of overdue work that's waiting for me, I am sitting here reading this forum, reflecting on my years, and feeling selfish for not doing a better job of sharing my hard-won experiences of the past few decades of living with PANDAS. So I decided to sit down and write up a bit about what I consider to be the most important things I have learned about PANDAS in my decades of life with it so far. Of course, everyone is different, so your mileage may vary! This is just my personal/familial experience.

 

For those of you who don't know my history, I have posted nutshells of it a number of times before, and there's a bit of it in the vaccinations thread that I posted earlier today.

 

So here is my top-ten-or-so hard-won experience list, for what it's worth. First, I have come to consider PANDAS, at least as it manifests in my family, a disease of inflammation, and not just infection. For me/us, both inflammation and infection have needed to be controlled. I personally think it's a mistake to focus just on infection...

 

#1 - Fish oil with the right ratio of EPA/DHA, at least 7:1 - and at adequate doses. I know I sound like I must have stock in this stuff, but I say it over and over because it has been the single most important thing I've been prescribed for treatment, and believe me, over the years I've been prescribed a lot of things. I haven't read this book in a long time, but I believe it does a good job of describing the rationale: The Omega-3 Connection: The Groundbreaking Antidepression Diet and Brain Program (Andrew Stoll).

 

#2 - This may not apply to young kids so much, but at least as they get older, keep a close eye on the thyroid. My sydrome became WAY, WAY better once my thyroid was managed properly, but proper management was hard to come by at first. The trick that took a while to figure out was that my T4/T3 coupling is/was awry. Thus, in order to get my T3 to the right level for me to be clinically normal/optimal, my TSH (the usual marker in thyroid function testing) had to be titrated OUT of the normal range. I just learned recently that inflammatory cytokines interfere with T4-T3 conversion, which explains it - and which makes me think that this thyroid situation may be more general to PANDAS and related syndromes. In any case, this may not mean anything to most of you now, but if there is ever suspicion of thyroid issues (and for most psych conditions, this often is something that needs to be investigated), make sure that you get a really thorough work-up by an endocrinologist, not just a cursory check of TSH - and find someone who is not afraid to drive numbers out of the normal range if that's what it takes to make one clinically normal.

 

#3 - When you need antibiotics, go heavy and thorough. I don't think I need to tell this crowd that. There is enough talk about antibiotics on this board already. One thing that I've had experience with, though, that I don't think I've seen mentioned - watch out for antibiotic allergies. I've had antibiotic reactions that created symptoms (psych symptoms, joint problems, etc.) that made me think that the antibiotics just weren't working against the PANDAS - when actually, they were the problem.

 

#4 - Watch iron levels. Inflammation can also mess with iron levels, and low iron can contribute to feeling lousy. I've had to take iron for most of my life.

 

#5 - Take allergies seriously. Test for allergies and try to avoid allergens with air cleaners, elimination diet, etc. For me/us, that seems to help a lot to keep the overall inflammatory state down, and many in my family have mood/anxiety problems associated with allergens even in the absence of infection.

 

#6 - Watch out for hormones! Warn everyone who regularly travels within a 30-foot radius of you to watch out for your hormones, too ! Birth-control pills/treatments that have helped me: Jasmin, Norplant, anything that keeps things low and level. Those that have been a disaster: anything with phases (Triphasil?). PMS/hormonal issues very much helped by fish oil and flax. Puberty for me - a PANDAS disaster. Pregnancy - very hard in first 8 weeks, after that a breeze. Postpartum - a breeze.

 

#7 - Beware of the manicogenic/activating effects of SSRIs. Start with VERY low doses, if you must use them. For me, Prozac was the worst of them. Wellbutrin - not an SSRI - has been much less activating for me and my PANDAS relatives - it is known to be less manicogenic per the research, also. A number of us have been able to tolerate Wellbutrin over significant periods of time and it has good efficacy.

 

#8 - Exercise. Can't say enough about this. Absolutely essential. Major helper in controlling inflammation and mood. Don't think I would have made it this far had it not been for regular aerobic exercise.

 

#9 - Rescue treatments for when things have gotten bad depresssion/anxiety-wise and I've needed "uppers" - these are what have always worked for me over the years (happily, it's been a long time since I've used most of them!): SAM-e (2-3 days only, longer becomes too manicogenic); light therapy (works fantastic at controlled doses in the morning - if too much later in the day, makes sleep difficult); ground flaxseed in decent quantities; Wellbutrin; Advil; steroids. Needless to say --> appropriate treatment of infections.

 

#10 - Rescue treatments for when things have gotten bad manic-wise, lability-wise, or just plain "nutty-wise" and I've needed "downers" - Depakote, Tegretol

 

#11 - Keep on top of those teeth! Dental messes create ugly situations.

 

#12 - I believe that it is true - it does get better with age. I've always thought that I just eventually grew out of most of PANDAS by 99%, but when I reflect back on it, I have to wonder if I've just, over the years, learned how to optimize the condition via proper treatment of infections, thyroid, anemia, inflammation, allergies, etc...

 

Have a lot more I could offer, but it's time for bed!