Jump to content
ACN Latitudes Forums

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


Recommended Posts

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 :lol: ! 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!

Link to comment
Share on other sites

  • Replies 30
  • Created
  • Last Reply

Top Posters In This Topic

mom-to-2,

 

Thanks so much for your thoughts, will look into some of these things. On the EPA/DHA ratio you are discussing, I am getting like 230mg of DHA and 4mg of EPA, a ratio that is way off from what you are suggesting. Did you mean 7 EPA for every 1 DHA (suggesting I'm way way off since I have more DHA than EPA), or 7 DHA for every 1 EPA (suggesting I needing to increase EPA by about 30mg). Or maybe you're suggesting the ratio of at least 7/1, so higher is okay, and what I am doing would fit your criteria as long as you meant 7 DHA for every 1 EPA?

 

Michael

Link to comment
Share on other sites

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 :lol: ! 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!

 

Happy Birthday and thanks for sharing these helpful tips!

I have a question about the thyroid work up. At what age did you get help from the endocrinologist? I am just wondering if this is some thing for pre or post puberty? Do you have any names of docs familiar with PANDAS as I don't think I have seen any listed on the posts about doctors that people have found helpful with this disorder.

Thanks for the info.

Link to comment
Share on other sites

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 :lol: ! 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!

 

 

Perfect reading material on the morning after a very long night here. Happy birthday and thank you for offering your views, as always they are immensely helpful and motivating to this mom.

 

Gat's mom

Link to comment
Share on other sites

Happy Birthday!

 

I just want to add a little something about the birth control. If you have a teen or young adult that you decide to put on birth control to try to level out hormones, do have a serious talk with them about how any antibiotics they are on will lower the actual birth control element!

Link to comment
Share on other sites

I posted this on another thread..

 

Now his tyrosine was lower and since his Vanilmandelate and Homovanillatw were low it suggests more Tyrosine....these low levels can indicate restless leg syndrome and half of his tics are in his legs....but i'm scared to add it as concerns some have mentioned....it also says low dopamine levels, but on the camk his dopamine was high,,,if it'w measuring the right/same way(or is it like the inversion of the T4 vs TSH

Low tyrosine leads to thryoid problems which is on both side of the family...this would lead to low body temp and he was usually cold...but he last 2 months or so he's running hot and runs around the house in shorts and a tshirt

 

Kayanne replied...

Are you talking about the Cunningham blood test results? You said his dopamine was high? They were not measuring dopamine levels, but were measuring anti-neuronal antibody titers to dopamine 1 and 2 receptors (I think its the receptors)---so if those titers were high, could that mean that dopamine is low? That your son has bad anti-bodies attacking dopamine receptors?

 

any thoughts......he is not on thyroid meds....his TSH was out of range...of course the ped doc said dont worry about it

Link to comment
Share on other sites

thanks so much for this post, it has taken us a year to finally get steered in these directions and even then we were unsure whether we were on the right track thanks again. I really appreciate your insight. Please continue to post....

Lori

 

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 :mellow: ! 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!

Link to comment
Share on other sites

Just wanted to follow up to answer some questions. To those of you who sent personal messages, please excuse the fact that I am replying publicly but I've gotten the same questions more than once so it's easier to answer in one place.

 

But first, thank you for all of the birthday wishes! I have had a fantastic birthday! :(

 

I've gotten a lot of questions about the thyroid. I'm not sure when my thyroid problems actually started, but my thyroid had become officially out of the normal range by the time I was in my early 20's. I then started on a "normal" level of supplementation titrated just to get my TSH in the normal range, and that was very helpful. However, the real breakthrough came a couple of years later. There is a whole bunch of literature about "high dose" thyroid supplementation as a treatment for "rapid cycling" bipolar issues (people with abrupt mood changes), particularly for those who do not respond "normally" to the more usual meds. Given that even with "normal" thyroid levels I still appeared to be a bit hypothyroid and mood-labile, and given that by this time my psychiatrist also recognized he was dealing with inflammatory/autoimmune issues and so thyroid issues were likely, he thought I was a good candidate for trying this approach. He also found that even when my TSH and T4 were normal, my T3 wasn't quite following properly (as I mentioned before, latter this became a known result of elevated inflammatory cytokines). This started a battle with my endocrinologist, who didn't want me to go up on the thyroid dose since I had pre-existing osteoporosis (from years of bad anorexia), and bone density is supposed to be negatively affected by high levels of thyroid hormones. Eventually the psychiatrist won out and my dose of synthroid went up - and that was life-changing for me. A big bonus - my bone density actually got BETTER and back into the normal range.

 

I will write in a few minutes to answer the other questions and to expand on this more, but the kids are waiting for their bedtime kisses....

Link to comment
Share on other sites

Thank you, thank you, thank you for your post. What a wonderful thing to give all of us a gift on YOUR birthday! I can't begin to tell you how wonderful it is to read a post by someone who is living life to its fullest with PANDAS! It gives such hope to those of us with PANDAS children, knowing that they can learn to live and manage their symptoms.

Link to comment
Share on other sites

A friend (in real life) just told me to put my questions and problems out to the universe and feel confident that they would be answered if I truly believed they would be. You can say this sounds like a bunch of hooey (but what have I got to lose!?) but we did that today, DH and I and reflected on how puberty affects PANDAS kids and what else we could do, etc etc. and then I log on here tonight (which I rarely get to do anymore anyway) for whatever reason, and here is this beautiful gift of an answer waiting for me. It brought tears to my eyes. I am glad you survived. I am glad you are here to tell us that it IS possible and that things CAN be okay. I can't thank you enough for sharing this with us.

 

:(

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...