More Confused than Ever!

[simplygina]

Just got back from our 2 week follow up with his doctor. I told him that the abx definitely helped and that every day he's been off of them more symptoms are returning, but his mood is definitely improved. Then he told me his tests all came back within normal range. He told me the numbers and they were at the high end of normal. This didn't really surprise me because we didn't go in because of an exacerbation, i just wanted to get the titers run and discuss the possibility of PANDAS. He does meet the criteria for the most part. Unfortunately we didn't run lyme or mycoplasma.

 

I'm always stumped at the "sudden onset" descriptor. How sudden is sudden? I noticed in December 2006 that he couldn't be around garbage, was pushing his stomach in and out and was totally obsessed with poop and pee getting into his mouth. Do I remember the day? No. I just remember the first time I realized he was bringing his garbage out of the room thinking "uh oh" and watching him more closely after that. When my mom mentioned to me a few weeks later that she thought he had germ issues I told her that I was beginning to suspect OCD. Is that sudden enough? Can I link it to a strep infection? Well he was getting it all the time around then. I can't pinpoint it to the exact infection.

 

Does it get worse with strep infections. Well it did, but he hasn't had strep throat since he had his tonsils out a year ago. But it still gets worse with lots of other things. Stress, allergies, fatigue, excitement, crappy food, any illness, certain seasons (possible allergy trigger indicator I think). I did notice the absence of symptoms during the time he was on antibiotics before and after his tonsillectomy. I also noticed he was much worse during the time his brother had strep in September. Does that count as worsening during exposure to strep? But wouldn't his titers rise then? How long do they stay elevated?

 

Did it get better with an SSRI? No. Has therapy helped? Some. I think it has helped him as a person over all. It has helped our family deal with it. It has given him some tools and given him the insight that thoughts don't have to control him. So that is helpful stuff for anyone I think. Some specific ERP approaches helped with individual issues at certain times but not generally overall.

 

So now his doctor wants to know why give him antibiotics if he isn't producing antibodies. Ummm, cause it helps? Not a very convincing answer I'm afraid.

 

He gave us another 10 days of Augmentin 875 mg 2x day, wants to see us again in 2 weeks and will talk to his favorite Infectious Diseases doctor. I asked if he would do a month but he wouldn't. He also gave me the, "let's not get too stuck on one diagnosis. let's keep our minds open", which I think means he doesn't think it is PANDAS. I told him some kids don't have elevated titers. He wanted to know how they knew it was PANDAS then. Ummm, I know there is some logic behind that but I can't exactly remember?

 

So I'm going to use Buster's charting system for this round. I'm hoping for a pretty major improvement. I'm also going to get all my research papers compiled with important info high-lighted so I can go in the next time sounding educated.

 

The thing is, my son has never gotten REALLY bad. He waxes and wanes, and his bad times aren't great, but they aren't debilitating in the sense that he can't function. He goes to school, he participates in the family, he does his school work, he has friends, he has extracurricular activities, he isn't depressed. He is really open and up front about it and so far it hasn't been a problem socially. So it isn't THAT bad. I've always treated it as an inflammation/auto-immune response anyway (seems logical when you see them deteriorate around things that tax their immune system) which is why I think it hasn't been so bad for him. But he is also pre-Jr. High where kids can be really mean. He is just starting to show signs of puberty, which I've heard will make it worse. He can be very volatile, moody, and so pissy that we definitely walk on eggshells and work around him a lot, but I wouldn't say he rages. When he gets really rotten we just tell him he needs to go to his room until he can participate according to the family rules and he does. But he is oppositional. Simple requests can cause some serious reaction if he doesn't like your tone. Plus he can be really rotten to his brother, which breaks my heart. And like so many of our kids, he's really smart, he just isn't even coming close to his potential. He gets into some trouble with one of his teachers for repeating what she says and other misunderstanding. His teacher's complain about his handwriting being pretty good sometimes and horrible sometimes. He does really well in math for awhile, then it all falls apart. During the bad times he doesn't sleep well, so I don't sleep well. It is so draining on me emotionally to worry about him and constantly be assessing where he is at and what we need to do to optimize his health. And I worry that so much immune dysfunction so early in life can't be good for his health long term. So yeah, it isn't as bad as it could be, but if I could possibly make it easier for him to function at a normal level, I want to. For him and me and the whole family. But not if it is going to make him go to a bunch of different doctors and have a bunch of tests and give him the feeling that he is defective and I think he needs to be fixed and bankrupting our family in the process.

 

So, How hard would you push if your child was doing pretty well considering how bad it ?could be?

[ShannonOtown]

I'm about to go read with the kiddos, but I feel a need to share a quick note and my experience.

 

When you read these forums you can feel guilty b/c your child is not falling off the deep end or 'that bad'. My son was the same way... he was doing good in school (but would struggle at times), had friends (but not many), mood and defiant (but reaching puberty) cautious, careful and worried (but he's intelligent and just questions things). I had an excuse for everything. I knew deep down that something was not quite right, but things were functional. How can I complain when parents on the forum are buying weight blankets??

 

Now in hindsight, after antibiotics, my son is a different child. I tell my doctor it's like the cloud is gone and the family is not walking of eggshells all the time. My sons face is bright and full of fun. It's such a 180 that you don't even realize how bad it is until it's gone. There's no arguing and I don't find myself explaining every little thing.... we're RELAXED. He's enjoying life.

 

Now days, I can handle a new tic or one bad night of going to the bathroom several times. I dread the day (if and when) the cloud returns.

 

Trust your instincts....

Shannon

[trggirl]

Oh gosh, so much of what you wrote, I am agonizing over too.

 

And the thing in our case is that we do have a bit of confirmation. We got back high cam-kinase results. But like you we did not have elevated titers so my doc is not convinced the problems are caused by strep. How can I argue with her??? And like you, I am wondering how far to push and how far to take it since my dd is also not in a debilitating state. I so hope a lot of people answer your post. I feel for you.

[MomWithOCDSon]

How hard would I push? Probably pretty hard, but you may need more data in hand, too.

 

How old is your son? Have you had any of the immune testing done?

 

I'm sure you've read here that the titers testing is not definitive; it's just an "easy" point of reference that can get things kicked off for doctors who're not familiar with PANDAS but feel they can take steps based on a test that reveals something elevated out of the "normal" range (my son's pediatrician did).

 

I think following Buster's chart and/or keeping a journal of your son's behaviors will be very helpful, especially if your doctor is a good listener. But some of the other immune testing (lots of threads here regarding specific tests) may help, as well.

 

The tricky thing may be that what you currently describe as "not REALLY bad" may get worse with time, with each new exacerbation, if untreated. Please understand, I'm not wishing that on you; it's just that this has been our experience. Our DS12 was diagnosed with OCD at 6 and we didn't find or try PANDAS treatment until his latest exacerbation (at 12) when frankly, it was find an answer or have him committed, it had gotten so bad. Prior to that, the "waxing and waning" all doctors will tell you comes with OCD territory had been mild enough and managable with the help of therapy and certain SSRI's (though not all). But this last time, his behaviors went off the charts, and none of the "conventional" OCD treatments worked any more.

 

Four months on abx, though, and he is about 85% back to his old self!

 

Just got back from our 2 week follow up with his doctor. I told him that the abx definitely helped and that every day he's been off of them more symptoms are returning, but his mood is definitely improved. Then he told me his tests all came back within normal range. He told me the numbers and they were at the high end of normal. This didn't really surprise me because we didn't go in because of an exacerbation, i just wanted to get the titers run and discuss the possibility of PANDAS. He does meet the criteria for the most part. Unfortunately we didn't run lyme or mycoplasma.

 

I'm always stumped at the "sudden onset" descriptor. How sudden is sudden? I noticed in December 2006 that he couldn't be around garbage, was pushing his stomach in and out and was totally obsessed with poop and pee getting into his mouth. Do I remember the day? No. I just remember the first time I realized he was bringing his garbage out of the room thinking "uh oh" and watching him more closely after that. When my mom mentioned to me a few weeks later that she thought he had germ issues I told her that I was beginning to suspect OCD. Is that sudden enough? Can I link it to a strep infection? Well he was getting it all the time around then. I can't pinpoint it to the exact infection.

 

Does it get worse with strep infections. Well it did, but he hasn't had strep throat since he had his tonsils out a year ago. But it still gets worse with lots of other things. Stress, allergies, fatigue, excitement, crappy food, any illness, certain seasons (possible allergy trigger indicator I think). I did notice the absence of symptoms during the time he was on antibiotics before and after his tonsillectomy. I also noticed he was much worse during the time his brother had strep in September. Does that count as worsening during exposure to strep? But wouldn't his titers rise then? How long do they stay elevated?

 

Did it get better with an SSRI? No. Has therapy helped? Some. I think it has helped him as a person over all. It has helped our family deal with it. It has given him some tools and given him the insight that thoughts don't have to control him. So that is helpful stuff for anyone I think. Some specific ERP approaches helped with individual issues at certain times but not generally overall.

 

So now his doctor wants to know why give him antibiotics if he isn't producing antibodies. Ummm, cause it helps? Not a very convincing answer I'm afraid.

 

He gave us another 10 days of Augmentin 875 mg 2x day, wants to see us again in 2 weeks and will talk to his favorite Infectious Diseases doctor. I asked if he would do a month but he wouldn't. He also gave me the, "let's not get too stuck on one diagnosis. let's keep our minds open", which I think means he doesn't think it is PANDAS. I told him some kids don't have elevated titers. He wanted to know how they knew it was PANDAS then. Ummm, I know there is some logic behind that but I can't exactly remember?

 

So I'm going to use Buster's charting system for this round. I'm hoping for a pretty major improvement. I'm also going to get all my research papers compiled with important info high-lighted so I can go in the next time sounding educated.

 

The thing is, my son has never gotten REALLY bad. He waxes and wanes, and his bad times aren't great, but they aren't debilitating in the sense that he can't function. He goes to school, he participates in the family, he does his school work, he has friends, he has extracurricular activities, he isn't depressed. He is really open and up front about it and so far it hasn't been a problem socially. So it isn't THAT bad. I've always treated it as an inflammation/auto-immune response anyway (seems logical when you see them deteriorate around things that tax their immune system) which is why I think it hasn't been so bad for him. But he is also pre-Jr. High where kids can be really mean. He is just starting to show signs of puberty, which I've heard will make it worse. He can be very volatile, moody, and so pissy that we definitely walk on eggshells and work around him a lot, but I wouldn't say he rages. When he gets really rotten we just tell him he needs to go to his room until he can participate according to the family rules and he does. But he is oppositional. Simple requests can cause some serious reaction if he doesn't like your tone. Plus he can be really rotten to his brother, which breaks my heart. And like so many of our kids, he's really smart, he just isn't even coming close to his potential. He gets into some trouble with one of his teachers for repeating what she says and other misunderstanding. His teacher's complain about his handwriting being pretty good sometimes and horrible sometimes. He does really well in math for awhile, then it all falls apart. During the bad times he doesn't sleep well, so I don't sleep well. It is so draining on me emotionally to worry about him and constantly be assessing where he is at and what we need to do to optimize his health. And I worry that so much immune dysfunction so early in life can't be good for his health long term. So yeah, it isn't as bad as it could be, but if I could possibly make it easier for him to function at a normal level, I want to. For him and me and the whole family. But not if it is going to make him go to a bunch of different doctors and have a bunch of tests and give him the feeling that he is defective and I think he needs to be fixed and bankrupting our family in the process.

 

So, How hard would you push if your child was doing pretty well considering how bad it ?could be?

[tired mom]

Just got back from our 2 week follow up with his doctor. I told him that the abx definitely helped and that every day he's been off of them more symptoms are returning, but his mood is definitely improved. Then he told me his tests all came back within normal range. He told me the numbers and they were at the high end of normal. This didn't really surprise me because we didn't go in because of an exacerbation, i just wanted to get the titers run and discuss the possibility of PANDAS. He does meet the criteria for the most part. Unfortunately we didn't run lyme or mycoplasma.

 

I'm always stumped at the "sudden onset" descriptor. How sudden is sudden? I noticed in December 2006 that he couldn't be around garbage, was pushing his stomach in and out and was totally obsessed with poop and pee getting into his mouth. Do I remember the day? No. I just remember the first time I realized he was bringing his garbage out of the room thinking "uh oh" and watching him more closely after that. When my mom mentioned to me a few weeks later that she thought he had germ issues I told her that I was beginning to suspect OCD. Is that sudden enough? Can I link it to a strep infection? Well he was getting it all the time around then. I can't pinpoint it to the exact infection.

 

Does it get worse with strep infections. Well it did, but he hasn't had strep throat since he had his tonsils out a year ago. But it still gets worse with lots of other things. Stress, allergies, fatigue, excitement, crappy food, any illness, certain seasons (possible allergy trigger indicator I think). I did notice the absence of symptoms during the time he was on antibiotics before and after his tonsillectomy. I also noticed he was much worse during the time his brother had strep in September. Does that count as worsening during exposure to strep? But wouldn't his titers rise then? How long do they stay elevated?

 

Did it get better with an SSRI? No. Has therapy helped? Some. I think it has helped him as a person over all. It has helped our family deal with it. It has given him some tools and given him the insight that thoughts don't have to control him. So that is helpful stuff for anyone I think. Some specific ERP approaches helped with individual issues at certain times but not generally overall.

 

So now his doctor wants to know why give him antibiotics if he isn't producing antibodies. Ummm, cause it helps? Not a very convincing answer I'm afraid.

 

He gave us another 10 days of Augmentin 875 mg 2x day, wants to see us again in 2 weeks and will talk to his favorite Infectious Diseases doctor. I asked if he would do a month but he wouldn't. He also gave me the, "let's not get too stuck on one diagnosis. let's keep our minds open", which I think means he doesn't think it is PANDAS. I told him some kids don't have elevated titers. He wanted to know how they knew it was PANDAS then. Ummm, I know there is some logic behind that but I can't exactly remember?

 

So I'm going to use Buster's charting system for this round. I'm hoping for a pretty major improvement. I'm also going to get all my research papers compiled with important info high-lighted so I can go in the next time sounding educated.

 

The thing is, my son has never gotten REALLY bad. He waxes and wanes, and his bad times aren't great, but they aren't debilitating in the sense that he can't function. He goes to school, he participates in the family, he does his school work, he has friends, he has extracurricular activities, he isn't depressed. He is really open and up front about it and so far it hasn't been a problem socially. So it isn't THAT bad. I've always treated it as an inflammation/auto-immune response anyway (seems logical when you see them deteriorate around things that tax their immune system) which is why I think it hasn't been so bad for him. But he is also pre-Jr. High where kids can be really mean. He is just starting to show signs of puberty, which I've heard will make it worse. He can be very volatile, moody, and so pissy that we definitely walk on eggshells and work around him a lot, but I wouldn't say he rages. When he gets really rotten we just tell him he needs to go to his room until he can participate according to the family rules and he does. But he is oppositional. Simple requests can cause some serious reaction if he doesn't like your tone. Plus he can be really rotten to his brother, which breaks my heart. And like so many of our kids, he's really smart, he just isn't even coming close to his potential. He gets into some trouble with one of his teachers for repeating what she says and other misunderstanding. His teacher's complain about his handwriting being pretty good sometimes and horrible sometimes. He does really well in math for awhile, then it all falls apart. During the bad times he doesn't sleep well, so I don't sleep well. It is so draining on me emotionally to worry about him and constantly be assessing where he is at and what we need to do to optimize his health. And I worry that so much immune dysfunction so early in life can't be good for his health long term. So yeah, it isn't as bad as it could be, but if I could possibly make it easier for him to function at a normal level, I want to. For him and me and the whole family. But not if it is going to make him go to a bunch of different doctors and have a bunch of tests and give him the feeling that he is defective and I think he needs to be fixed and bankrupting our family in the process.

 

So, How hard would you push if your child was doing pretty well considering how bad it ?could be?

it sounds like your doing a great job. Maybe keep a daily journal that may help down the line. About your question about the aso titers I can only tell you I recently read that 37% of children will not produce either elevated ASO or anti-Dnase B levels in response to a streptococcal infection.

[thereishope]

Sudden onset was obvious for my son. September 26, 2008 at around 5:00 pm. However, I didn't realize it wasn't going to leave as quickly as it came for a couple weeks. I kept convincing myself something was causing it like new school, his bday. Well, something was causing it, a non symptomatic strep infection. That reason never crossed my mind.

 

Have you done the Cunningham test?

 

 

As for the blood tests....

 

From PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

A throat culture for Group A Beta-Hemolytic streptococcus (GABHS) at time of exacerbation onset is recommended to diagnose a pharyngeal streptococcal infection [swedo2004]. If the culture is negative, a blood test may be able to test for streptococcal exotoxins. A common blood test is Anti-Streptolycin O. While this test can confirm a previous strep infection, it cannot exclude a prior infection or a diagnosis of PANDAS. This test is affected by many factors and in one study over 46% of children did not have a rising ASO titer despite having colonized strep [shet2003].

 

From PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Q: We had low ASO titers, does that rule out PANDAS?

A: No. Anti-Streptolycin O is a measure of an exotoxin of Group A Beta-Hemolytic streptococcus. Although most strains of GABHS do produce Streptolycin-O, cholesterol (particularly in the skin) can absorb this exotoxin. In one study, ASO did not rise in 46% of patients despite positive throat cultures and perfect timing for taking the ASO titer. So ASO can confirm a previous strep infection but cannot rule out strep or PANDAS.

 

Q: We had low Anti-DNAseB and ASO titers, does that rule out PANDAS?

A: Unfortunately, No. First, the tests have to be taken during the rising titer period. ASO tends to rise 1-4 weeks post infection and Anti-DNAseB tends to reach a peak at around 6-8 weeks. Even with perfect timing of titer draws, 31% of children with confirmed colonized strep did not have a rise in either ASO or Anti-DNAse B. So anti-DNaseB and ASO can confirm a previous strep infection, but cannot rule one out.

[dcmom]

simply gina-

 

I would push. Follow your mommy instincts. As a parent, you can get used to some ocd and put it off to quirky behavoir.

 

My younger dd had acute sudden onset ocd/pandas. There was no ignoring or getting used to it- she could not function in her 5 yr old life.

 

Her sister had a MUCH milder onset at the time- we didn't even attribute it to pandas, even though she also had strep when her sister did, and we were treating sister. Onset was just so mild- she functioned- maybe not even real ocd, just new worries, some new defiance, stomach aches. Eight months later, she really spiraled down into a more acute onset of ocd. She is now diagnosed with pandas.

 

What if we had her on antibiotics and a couple of steroid bursts before the downward spiral? We will never know.

 

I am not trying to scare you, and I don't really blame myself. I am just trying to say in my experience a mild sudden onset (although these onsets, even acute, snowball, as in new things are added each week, not everything happens day 1) can precede a debilitating episode.

 

If you are anywhere near one of the specialists- I would go to see them.

[Suzan]

Except for a wild day at school where there was a sudden change for my dd8 this year, we did not have sudden onset because my girls had this from such an early age that it was always there, always getting better, getting worse. I didn't know what it was though so I was not looking for anything specific. So we don't fit into the sudden onset too well. Now when they get symptoms, it ramps up, I can see it coming usually, it's not like a big BAM!

 

Also, they don't get raised titers, even with documented strep. They don't mount a good immune response to much of anything. I feel lucky that our docs aren't paying much attention to that right now. I do hope your doc will understand that not everyone who has PANDAS gets raised titers.

 

I like the idea of a daily log. I do that for my dd8 so I can remember what was going on when, how she was doing, what triggered her, etc. I refer back to it a lot and I am very glad I have it as a record of her progress.

 

Good luck to you. I think you are doing great, even with your questions you are asking yourself. Although he is not really bad now, you don't want him to get really bad in the future so protecting him now will benefit you later.

 

Susan

[simplygina]

Thanks everybody! It really helps to know that other families have dealt with this and there really isn't a clear cut PANDAS case to go off of. I do worry that we've been lucky so far and that the next time could be the big one.

 

We have had a few periods where the "cloud" seems to have lifted and he is such a funny, witty, charming boy. I guess we've been dealing with this long enough that I forget that I'm not dealing with the "real" him most of the time. Heartbreaking when I think about it.

 

I do think it is PANDAS. The fact that the abx pre and post tonsillectomy gave us 6 weeks of normalcy says something to me. And the exposure to his brother's strep in September brought on a whole slew of new tics we hadn't seen before. By Christmas most of them were gone except for a few of his more persistent ones. Also, the last few times he had strep he was asymptomatic. I just thought his voice sounded "streppy". His brother has also been asymptomatic both times he's been dx for strep. He too just sounded "streppy". I imagine that there have been a number of times I've missed it. In the past I've been a very "wait and see" parent, giving things a few days to see if it resolved itself. Now I'm wondering if some of our bad times were strep and I missed it. This past round also came with many improvements to the tics, the OCD and to his mood.

 

I was hoping his pediatrician would be willing to give us the abx, there would be improvement and that would be confirmation enough. I should have known it wouldn't be that easy.

 

I would like to run more tests. I'd like to at least know his lyme and mycoplasma and run the Cunningham test. The pediatrician had never heard of it, so I'm sure I will have to bring all the info to him if I want it. If he does have colonized strep, how would find it? His throat culture was negative. He's had a number of sinus infections in the past, it could be there. How do they test for strep in the sinuses or gut or anywhere else? I also think I will get a copy of his entire medical history. There were so many ear infections and strep infections I can't even remember when they all were. It would be interesting to match them up with what I remember his OCD and tic history to be.

 

I wish I knew of a specialist in Utah. Maybe there is one, but I don't know how to find one. It seems like most of the PANDAS docs are concentrated on the coasts. I did give our doc Dr. T's and Dr. K's contact info. He's a fabulous pediatrician and definitely wants to do the right thing. He's on the older side and has a very busy practice. I don't think he has the time, or the burning desire to learn all about PANDAS. My experience with him has been he will learn enough to refer me to someone he thinks can help. I think the more info I have in hand, the more likely it is he will point us toward someone who actually can.

 

Well, I guess we'll just see how the next 10 days go and at least we'll have some more information!

 

Thanks again for your experiences and advice!

[momto2pandas]

I am so glad you posted this because I struggle similarly and constantly in thinking about my ds6. These days, just with a good regime of supplements, he has no OCD symptoms whatsoever, no to minimal tics, no anxieties (you know: social, nighttime, separation), no potty issues, he does exceptionally well at school and in his activities, and he's a popular kid with good, stable friendships. There is really no way that I could call him "impaired" by any normal standard.

 

Nevertheless, on a waxing and waning basis and nearly always tied to a known trigger, I do see things that I feel are "reactions". He's more whiny, he's more "defiant" (whines more about stuff like cleaning his room or something he doesn't like for dinner - maybe 20 seconds of moaning, occasinally a foot stomp if it's really bad), he has a harder time focusing (but is not unable to focus), he cries more easily if something goes wrong or reacts more meanly if his little bro' provokes him, he's more perfectionistic about his work than he usually is. Nothing that you could say was really out of the normal range for a 6 year old boy (I think - I don't really know!), and nothing that's totally out of character with his usual personality....but it's clearly triggered by immune challenges, and it does make him a bit of a pain at times. It responds to Advil so I drop him a dose if he's really being a pain or if a trigger is present and I know we'll be having a challenging day (but I feel a bit guilty about it since it's mostly to make the day easier on ME.) But does such a situation justify chronic antibiotic use? How could I argue that, given that he's actually functioning at a higher level than most 6 year olds? When he stomps his feet and wails for 20 seconds about having to clean up his room once a week, do I say that that's PANDAS and I want aggressive treatment, or is that just being 6? And even if it is PANDAS, does that level of PANDAS justify staying on antibiotics all the time, given the potential negative effects of resistance, gut isssues, etc.? Chronic antibiotics are a no-brainer for a more symptomatic child, but they aren't candy.... On the one hand I don't want to be too perfectionistic about my expectations - expecting a perfectly behaved, agreeable child 100% of the time and keeping him perpetually medicated to strive for that (is a 6 year old supposed to be like that? I don't know!) - on the other hand, I don't want to under-treat and never be aware that underneath, he really is NOT a slightly-oversensitive, slightly focus-challenged child...when I've always thought that just to be his personality. The situation gives me a lot of anxiety. I have no idea what normal really is! Is this as good as it gets for someone like him, or are we undertreated and just waiting for disaster to strike?

 

I've asked his teachers if they've seen anything to suggest that we should treat more aggressively, and no-one sees a problem at all. Everyone says he's doing great.

 

What to do?????

 

 

 

Just got back from our 2 week follow up with his doctor. I told him that the abx definitely helped and that every day he's been off of them more symptoms are returning, but his mood is definitely improved. Then he told me his tests all came back within normal range. He told me the numbers and they were at the high end of normal. This didn't really surprise me because we didn't go in because of an exacerbation, i just wanted to get the titers run and discuss the possibility of PANDAS. He does meet the criteria for the most part. Unfortunately we didn't run lyme or mycoplasma.

 

I'm always stumped at the "sudden onset" descriptor. How sudden is sudden? I noticed in December 2006 that he couldn't be around garbage, was pushing his stomach in and out and was totally obsessed with poop and pee getting into his mouth. Do I remember the day? No. I just remember the first time I realized he was bringing his garbage out of the room thinking "uh oh" and watching him more closely after that. When my mom mentioned to me a few weeks later that she thought he had germ issues I told her that I was beginning to suspect OCD. Is that sudden enough? Can I link it to a strep infection? Well he was getting it all the time around then. I can't pinpoint it to the exact infection.

 

Does it get worse with strep infections. Well it did, but he hasn't had strep throat since he had his tonsils out a year ago. But it still gets worse with lots of other things. Stress, allergies, fatigue, excitement, crappy food, any illness, certain seasons (possible allergy trigger indicator I think). I did notice the absence of symptoms during the time he was on antibiotics before and after his tonsillectomy. I also noticed he was much worse during the time his brother had strep in September. Does that count as worsening during exposure to strep? But wouldn't his titers rise then? How long do they stay elevated?

 

Did it get better with an SSRI? No. Has therapy helped? Some. I think it has helped him as a person over all. It has helped our family deal with it. It has given him some tools and given him the insight that thoughts don't have to control him. So that is helpful stuff for anyone I think. Some specific ERP approaches helped with individual issues at certain times but not generally overall.

 

So now his doctor wants to know why give him antibiotics if he isn't producing antibodies. Ummm, cause it helps? Not a very convincing answer I'm afraid.

 

He gave us another 10 days of Augmentin 875 mg 2x day, wants to see us again in 2 weeks and will talk to his favorite Infectious Diseases doctor. I asked if he would do a month but he wouldn't. He also gave me the, "let's not get too stuck on one diagnosis. let's keep our minds open", which I think means he doesn't think it is PANDAS. I told him some kids don't have elevated titers. He wanted to know how they knew it was PANDAS then. Ummm, I know there is some logic behind that but I can't exactly remember?

 

So I'm going to use Buster's charting system for this round. I'm hoping for a pretty major improvement. I'm also going to get all my research papers compiled with important info high-lighted so I can go in the next time sounding educated.

 

The thing is, my son has never gotten REALLY bad. He waxes and wanes, and his bad times aren't great, but they aren't debilitating in the sense that he can't function. He goes to school, he participates in the family, he does his school work, he has friends, he has extracurricular activities, he isn't depressed. He is really open and up front about it and so far it hasn't been a problem socially. So it isn't THAT bad. I've always treated it as an inflammation/auto-immune response anyway (seems logical when you see them deteriorate around things that tax their immune system) which is why I think it hasn't been so bad for him. But he is also pre-Jr. High where kids can be really mean. He is just starting to show signs of puberty, which I've heard will make it worse. He can be very volatile, moody, and so pissy that we definitely walk on eggshells and work around him a lot, but I wouldn't say he rages. When he gets really rotten we just tell him he needs to go to his room until he can participate according to the family rules and he does. But he is oppositional. Simple requests can cause some serious reaction if he doesn't like your tone. Plus he can be really rotten to his brother, which breaks my heart. And like so many of our kids, he's really smart, he just isn't even coming close to his potential. He gets into some trouble with one of his teachers for repeating what she says and other misunderstanding. His teacher's complain about his handwriting being pretty good sometimes and horrible sometimes. He does really well in math for awhile, then it all falls apart. During the bad times he doesn't sleep well, so I don't sleep well. It is so draining on me emotionally to worry about him and constantly be assessing where he is at and what we need to do to optimize his health. And I worry that so much immune dysfunction so early in life can't be good for his health long term. So yeah, it isn't as bad as it could be, but if I could possibly make it easier for him to function at a normal level, I want to. For him and me and the whole family. But not if it is going to make him go to a bunch of different doctors and have a bunch of tests and give him the feeling that he is defective and I think he needs to be fixed and bankrupting our family in the process.

 

So, How hard would you push if your child was doing pretty well considering how bad it ?could be?

[sf_mom]

Mom2Pandas: You bring up a good point.... I think your child's teacher (we like and trust our son's) can be a fantastic tool to determine 'normal' behavior. Each time our son has been exposed to strep she has noticed a ramping of mood liability and AD/HD type symptoms. At home we would notice similar plus the more mild OCD/TICS. She has really helped us to put things into perspective to help us determine our further course of treatment.

[momto2pandas]

Yes, last year in kindergarten, when he had a couple of "actual" episodes, even though they were not at all dramatic, his teacher picked up on the day it started and the day it ended. This year the teacher doesn't see anything - and I think it's an actual difference in him rather than in the teacher.

 

 

Mom2Pandas: You bring up a good point.... I think your child's teacher (we like and trust our son's) can be a fantastic tool to determine 'normal' behavior. Each time our son has been exposed to strep she has noticed a ramping of mood liability and AD/HD type symptoms. At home we would notice similar plus the more mild OCD. She has really helped us to put things into perspective in terms of treatment.

[sf_mom]

Believe me.... if there is something out of the ordinary they 'the teacher' lets you know! My son's friend unfortunately has been held back as a results of his PANDAS and the mother is constantly being called to pick him up or consult with her. The urination problem has been big issue because when he has an accident she has to come pick him up from school (its the rules) and she commutes to work 45 minutes in traffic.

[Fixit]

He gave us another 10 days of Augmentin 875 mg 2x day, wants to see us again in 2 weeks and will talk to his favorite Infectious Diseases doctor. I asked if he would do a month but he wouldn't. He also gave me the, "let's not get too stuck on one diagnosis. let's keep our minds open", which I think means he doesn't think it is PANDAS. I told him some kids don't have elevated titers. He wanted to know how they knew it was PANDAS then. Ummm, I know there is some logic behind that but I can't exactly remember?

 

He wanted to know how they knew it was PANDAS then

 

For some...diagnositc.......isn't it mostly diagnostic for lymes, lupus, epsteind,fibromialga,ts(laugh sadly), and a lot of other things???

that is why doc K thinks my boy is still pandas

[nomoz]

What I can't figure out is why, if he improves on antibiotics, the doctor would be questioning you!

And a month trial is not too much to ask.

You go for it until you get what you think is best for your son, and for all of you.

Because this is still in "theory" stage, I think doctors just fear pushing the envelope with it.

But long term antibiotics are used for kids with exposure to rheumatic fever, so I'm sure there is information available on the pros/cons of doing it.

If your doctor stays this stubborn and you really believe you are onto something, find another doctor!!

Good luck!!