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

[momto2pandas]

Continued....

 

Anyway, I felt that I had to mention the thyroid piece because I truly don't feel that I would have recovered as fully as I have if I hadn't had that shrink who was willing to go "out of the box" in this way. And, as I mentioned, based on the science I am guessing that there are plenty of other "PANDAS" out there who would are in the same boat, possibly without knowing it. I don't mention this often out of respect for their anonymity, but I have a number of other adult relatives with this condition, and after my thyroid breakthrough, most of them also went the extra-thyroid-boost route with treatment with similar results. It's interesting to me that a couple of decades later, the science finally seems to be starting to catch up here.

 

People asked about my own kids and how I treat them. The truth is that they don't even take prophylactic antibiotics, because they don't need them, at least yet. We have applied everything that has worked for me and my other relatives with this condition to them, and I believe that it has benefitted them. For a while in December-January I was thinking I might have to start antibiotics for my ds6 since his sensory hypersensitivity and irritability were really becoming problems, but then I found out that my dh had cut the fishoil inadvertently through all of that time. When we boosted that back up, the symptoms disappeared and stayed gone even through another round of dental work, loss of 2 baby teeth, and a sick brother and father in the house. So this is what I do for them - high EPA:DHA ratio fishoils (at doses taken from the Harvard studies, not doses on the labels), Intrakid supplement, allergy control (bit of a moving target since ds6 is so allergic, but we try to stay on top of it), and exercise. Advil for ds6, on a bad day. Antibiotics when they have obvious infections.

 

My ds3 is only minimally affected. When he's actually sick, he gets OCD behaviors (moderate) and has verbal issues (slurring and stuttering) - I had figured they were pretty normal toddler things, but his pediatrician thought PANDAS so has given azithromycin (double-length of the usual course based on treating the infections) and the behaviors have gone away 100%. My ds6 has what I believe would be/could be a severe case of PANDAS had we not been on top of it - and he's the one I really fear for, for the future. Literally from the week he was born, he has had autoimmune issues. He was a VERY colicky newborn with lots of bad skin conditions, asthma (after a few months), hypersensitivites to fluorescent lights, poor weight gain, etc., and his pediatrician was sure from the beginning that it was due to food allergies. Sure enough he tested positive for milk, eggs, wheat - so sensitive that he reacted to them even in the breastmilk. We could always tell when he had eaten something he was allergic to just by his defiant, irritable, anxious behavior, even before any other symptoms showed up. By the time he was 3 we were noticing behavioral responses to infections, and he was diagnosed at 4 with PANDAS when he got strep and blew up over the course of hours with OCD and trouble with handwriting. That was the first time I had ever heard the term PANDAS - before that I just thought that I and the others in my family were "freaks". That episode was treated with an aggressive course of antibiotics, but after that we got serious about the oils, Intrakid, keeping active, etc., and since then he has only had antibiotics when he's actually gotten ill. That's not to say that we haven't had days of serious crabbiness when e.g. his best friend gets strep (which unfortunately happens constantly), and we struggle with the seams in his socks fairly regularly, but it hasn't gotten to the point - yet - where we have felt that it was worth it to be on antibiotics continuously.

 

Don't get me wrong - if either of my kids gets to the point where they need more - and I expect that (though pray otherwise) - I will jump right on it. I would not hesitate to add antibiotics or even what I feel can be helpful psych meds if they need them. If any of us got really bad, I personally would explore more potent anti-inflammatory approaches (COX-2 inhibitors or biologics like Enbrel, Kineret, etc.) before IVIG or PEX, but that's another long story...

 

As to questions about doctors who have helped, in a way it might have been a blessing that PANDAS didn't have a name back when I was working it out, because there was no "believing in it" or "not believing in it". When I needed a doctor, I called around, explained my condition, and got recommendations for doctors who would be interested in and able to work with me. None of them were "PANDAS" people, but all of them were extremely bright and knew their science well enough to think about me as an individual, not a diagnosis. Brian Fallon - head of the anxiety disorders clinic at Columbia (and specialist in Lyme and other "somatic"/medical-based psych disorders) - he was the one who took on the high-dose thyroid situation and worked through a bunch of the autoimmune stuff. I must have asked him 1,000 times if I was just crazy and he kept coming back with a firm belief that the problem was medical. Terrence Ketter, head of the Bipolar Disorders Clinic at Stanford (I had actually called him for a recommendation when I moved to CA, and he wanted "the case" for himself) - he was the one who really charted me over time and took titers, etc. to match up with symptoms. Lisa Weinstock, from Harvard, working out of Scarsdale NY - she made the connection to the use of high-dose high EPA:DHA ratio fish oils to reduce inflammation from all sources.

 

Sorry for the long and rambling post, but you asked for it, you got it!

[momto2pandas]

Thanks for all of the words of appreciation, too! I am so glad if I can spare anyone any of the trial and error I went through.

 

Perhaps I should say, as my most important piece of experience, that it's important to know that it's not just possible to be "okay", it's possible to be doing really great. My belief is that PANDAS, for most people, requires life-long "management", but the management can become so inconsequential (few bucks of drugs/supps per month) and so much part of normal life (regular vigorous exercise, treating infections) that it's not much of an issue. Once the management regime is figured out, all of the gifts that seem to come along with PANDAS get to take center stage. My adolescence involved such great suffering that for a long time afterward, I felt that no matter how great my life ever got, it could never get to the point where it would have been worth living through my childhood/teens. I am happy to say that by the time I was in my late 20's or so, life had gotten to where I had to admit that it was all worth having gotten through just to get to where I finally got. Here on my 43rd birthday, I can honestly say that I can't think of anyone I would want to trade lives with right now.

[momto2pandas]

I mean 7 EPA for every 1 DHA. I know that a lot of people take DHA, but I have found that it actually kind of messes me up to take DHA without taking a lot more EPA. Right now I take 1000 mg EPA and 50 mg DHA. Mostly I have taken 1000 mg EPA and about 140 mg DHA - I've only changed to the higher ratio because my usual supplement was out of stock. The higher ratio seems to be working fine. I know some people go up to double what I take, but I haven't needed that. I'm fairly small (115 pounds) so may need less than folks of more average size.

 

 

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

[momto2pandas]

That last piece was meant to reply to Michael Tampa's post earlier in the thread. Sorry if it seemed out of the blue.

[momto2pandas]

Just my 2 cents, but if his TSH is out of range in the context of PANDAS (or any psych condition, for that matter), I would worry about it! Is it too low, or too high?

 

 

 

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

[KeithandElizabeth]

I hope you had a wonderful birthday yesterday. Thank you for sharing all of your knowledge gained from experience. My husband, my son and I all have abnormal iron levels, abnormal thyroid levels and low vitamin D levels.

 

This has been so helpful to me and I now plan to incorporate the fish oils into all of supplement regime.

 

I notice that most of the brands do not have the 7 to 1 ratio. Do you recommend a particular fish oil brand?

 

Thanks,

 

Elizabeth

[momto2pandas]

There is a thread here that gives some names of supplements and their ratios. Of these, I and my kids have used Omegabrites and Nature's Way EfaGold, so I can vouch for those. If you click on the link right above the box with the supplements, I think there is a discussion of high EPA in ADHD.

 

http://www.adhdnews.com/forum/forum_posts.asp?TID=28263

 

 

I hope you had a wonderful birthday yesterday. Thank you for sharing all of your knowledge gained from experience. My husband, my son and I all have abnormal iron levels, abnormal thyroid levels and low vitamin D levels.

 

This has been so helpful to me and I now plan to incorporate the fish oils into all of supplement regime.

 

I notice that most of the brands do not have the 7 to 1 ratio. Do you recommend a particular fish oil brand?

 

Thanks,

 

Elizabeth

[Fixit]

Just my 2 cents, but if his TSH is out of range in the context of PANDAS (or any psych condition, for that matter), I would worry about it! Is it too low, or too high?

 

 

 

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 thyrooid meds....his TSH was out of range...of course the ped doc said dont worry about it

 

 

his Tsh is high which would mean his thyroid is too low, which may point back too his low Vanil and Homo and a need for more Tyrosine???

I have a pretty good endo for me...do you think the endo would look at the aminos too....i questioning adding synthroid vs tyrosine doing both would double down to the other side...

i guess ,is the root of the problem tyrosine or synthyroid

 

i'm going to print some of this out and see if Dr K has thoughs and take it to my/a endo too

[Fixit]

one more thought ......i didn't know i had a thyroid problem till about 2 months after he was born....I couldn't get dressed.

babies don't have thyroids, or use of it till they are 3-5 months old and use their mothers in the mean time...so 2 beings are drawing from the same thyroid,,,that is what i've read and my endo said that too

so that is why it is NOW common to have your thryoid checked during pregnancy....that is why woman are more prone to this problem and usually kicks in real good by pregnancies......i was on levoxyl with the other 2 babies and kept my thyroid in check

[momto2pandas]

I'm afraid I really don't know about tyrosine vs. synthroid, I haven't tried messing around with taking aminos instead of the med. An endo may be able to help you out there. For me, it ain't broke, so I don't try to fix it! What I can say is that I had to get my TSH out of the range (or just borderline in range) on the OTHER end (low end) before everything stabilized for me and I became clinically euthyroid.

 

 

Just my 2 cents, but if his TSH is out of range in the context of PANDAS (or any psych condition, for that matter), I would worry about it! Is it too low, or too high?

 

 

 

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 thyrooid meds....his TSH was out of range...of course the ped doc said dont worry about it

 

 

his Tsh is high which would mean his thyroid is too low, which may point back too his low Vanil and Homo and a need for more Tyrosine???

I have a pretty good endo for me...do you think the endo would look at the aminos too....i questioning adding synthroid vs tyrosine doing both would double down to the other side...

i guess ,is the root of the problem tyrosine or synthyroid

 

i'm going to print some of this out and see if Dr K has thoughs and take it to my/a endo too

[momto2pandas]

One other thing - if you do want to show any of this to Dr. K and he wants scientific references for each piece (thyroid, EPA, etc.), I have a 50-page or so Word document where I've collected all of the scientific references/abstracts behind each piece. Since medical research is my field, over the years I've researched the bejeez out of each turn of events in my own history to try to understand why things have or have not worked, and I have it all collected. Not necessarily well-organized, but assembled, at least. I would be happy to have the opportunity to share it with interested docs.

 

I'm afraid I really don't know about tyrosine vs. synthroid, I haven't tried messing around with taking aminos instead of the med. An endo may be able to help you out there. For me, it ain't broke, so I don't try to fix it! What I can say is that I had to get my TSH out of the range (or just borderline in range) on the OTHER end (low end) before everything stabilized for me and I became clinically euthyroid.

 

 

Just my 2 cents, but if his TSH is out of range in the context of PANDAS (or any psych condition, for that matter), I would worry about it! Is it too low, or too high?

 

 

 

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 thyrooid meds....his TSH was out of range...of course the ped doc said dont worry about it

 

 

his Tsh is high which would mean his thyroid is too low, which may point back too his low Vanil and Homo and a need for more Tyrosine???

I have a pretty good endo for me...do you think the endo would look at the aminos too....i questioning adding synthroid vs tyrosine doing both would double down to the other side...

i guess ,is the root of the problem tyrosine or synthyroid

 

i'm going to print some of this out and see if Dr K has thoughs and take it to my/a endo too

[Fixit]

I'm afraid I really don't know about tyrosine vs. synthroid, I haven't tried messing around with taking aminos instead of the med. An endo may be able to help you out there. For me, it ain't broke, so I don't try to fix it! What I can say is that I had to get my TSH out of the range (or just borderline in range) on the OTHER end (low end) before everything stabilized for me and I became clinically euthyroid.

 

 

So you had to get your TSH to drop to the lower side of normal??(or slightly out on the down side)(more towards the hyper thyrid)

But you didn't test out of range at all, (your thyroid isn't broke) it was just some combinatin of Lower TSH that your doc was able to with he thought would work or help?

Are you and do you still take synthroid,,(levoxyl is a form of that)?

 

 

Just read article that said the lower the TSH the better,, for heart too,,,,and they may be lowering the parameters???

[momto2pandas]

Originally my TSH was out of range on the high side (so I had low thyroid). I started taking levoxyl at doses that brought it into the mid-normal range. That was definitely very helpful, but there was another quantum leap for the better when the dose of levoxyl/synthroid was boosted further to "suppressive" doses. At that point, my TSH was out of range on the other side ("too" low). Normally, this would indicate that I was hypERthyroid, but because my TSH, T4, T3 are not quite coupled in the typical way (inflammatory cytokines interfering with T4 to T3 conversion, I believe), when my T3 was looked at directly, my T3 was actually in a good range when my TSH was out of range. Over the years my TSH has drifted to the very bottom of the normal range (some tests in, some out - I get it looked at about yearly). I have thought recently about trying to lower the dose of levoxyl given that I think I have a much better handle on overall inflammation these days than I did when I first started taking this dose 15-20 years ago, but given that things "ain't broke," it hasn't been high on my list of things to fix.

 

 

I'm afraid I really don't know about tyrosine vs. synthroid, I haven't tried messing around with taking aminos instead of the med. An endo may be able to help you out there. For me, it ain't broke, so I don't try to fix it! What I can say is that I had to get my TSH out of the range (or just borderline in range) on the OTHER end (low end) before everything stabilized for me and I became clinically euthyroid.

 

 

So you had to get your TSH to drop to the lower side of normal??(or slightly out on the down side)(more towards the hyper thyrid)

But you didn't test out of range at all, (your thyroid isn't broke) it was just some combinatin of Lower TSH that your doc was able to with he thought would work or help?

Are you and do you still take synthroid,,(levoxyl is a form of that)?

 

 

Just read article that said the lower the TSH the better,, for heart too,,,,and they may be lowering the parameters???

[Fixit]

Momto2...THAnk you so much!!!

this gives me a really good lead

i tried to start a thryroid thread awhile ago...but since i got you hook line and sinker, i figure i'd try to absorb all your knowledge

thank you!!!

[sf_mom]

Thanks for that information!!!!! Dr. K recommended FISH OIL for all of my kids and I was giving them several teaspoons of Carlson Kids..... right amount wrong ratios.

 

 

There is a thread here that gives some names of supplements and their ratios. Of these, I and my kids have used Omegabrites and Nature's Way EfaGold, so I can vouch for those. If you click on the link right above the box with the supplements, I think there is a discussion of high EPA in ADHD.

 

http://www.adhdnews.com/forum/forum_posts.asp?TID=28263

 

 

I hope you had a wonderful birthday yesterday. Thank you for sharing all of your knowledge gained from experience. My husband, my son and I all have abnormal iron levels, abnormal thyroid levels and low vitamin D levels.

 

This has been so helpful to me and I now plan to incorporate the fish oils into all of supplement regime.

 

I notice that most of the brands do not have the 7 to 1 ratio. Do you recommend a particular fish oil brand?

 

Thanks,

 

Elizabeth