Sleep

[EAMom]

Michele...also, the ADHD could be from the PANDAS, or it could be separate, something your son has even if he didn't have PANDAS.

 

Also, IMO there is a chronic variant of PANDAS (there's a paper somewhere that mentions this!) where you may not see clear cut "episodes" after a while...perhaps these kids have chronic low grade strep (carrier) or chronic exposure (carrier in family).

 

Maybe it would help to videotape some of the stuff your son does to show the doc???

[ajcire]

Thank you both for your posts.

 

EAMom, it sure seems so clear the way you sorted that out. I wish the doctors sorted it out just as clearly. I am going to make sure to keep a good record and the next time one of us has strep or that ds is off I am going to insist on cultures and bloodwork. I was concerned that the results from this bloodwork would be off being that it was a few months from when he was at his worst to when I got the bloodwork but my dr. felt it would still be high.

 

The dr. I saw most definitely does believe it exists. He takes a more wholistic approach to medicine (One of my regular peds gave me the name from one of his patients who was helped by him.... that ped believed in it but said it was out of his realm.. the others in my regular pediatricians group did not believe in it, one told me I was being a crazy mother and that I was looking to much into things... This doctor that I saw told me that it was definitely logical to look into it based on my ds's symptoms.. I guess he just is all about the test results... or perhaps if ds shows more symptoms that make it clearer it will help.. gosh, I don't want him to have to have severe symptoms for that.

 

Did I mention that until a few weeks ago ds was using the bathroom pretty often too.. enough that his teacher mentioned it to me without my asking... I mean, not constant but 4 times during the school day.. when he goes before and right after school as well. Now all of a sudden that has eased up too...

 

So would I be a bad mother if I took a wait and see approach? I am afraid that if I seek another opinion while he is still in limbo with symptoms I will be right back where I started. Dr. K... I had emailed him a while back and he did say it sounded that way to him. I know this will sound horrible but I just can't justify spending a few hundred dollars on a phone consult at this point. My dh would really have to be on board with me to do that. Don't get me wrong, if symptoms come back I will do whatever it takes but right now I just can't go that route. I so know that sounds awful. I really do... it's hard when nobody around you, friends or family know a thing about any of this. It is making me look like a nut who wants to find something wrong with her child. I do want to find it but only so I can "fix" it.. not because I want there to be something wrong.

 

 

Thanks so much for the sounding board!!!

 

Do you think I should try the 5HTPE? My ds doesn't have problems staying asleep and falling asleep is only a problem because he's afraid... but right now he does fine as long as I hold a sign that says don't forget to check on ds... I know that sounds crazy but it makes him happy.

 

Oh, and I read Against Medical Advice. I read it in 3 days.. and then gave it to my mother to read. It broke my heart that kids go through that... and certainly put some of my worries in perspective.

 

 

 

Ditto. Everything EAMom said. PANDAS is episodic it waxes and wanes just like Tourettes but the moods and anxiety do also.

 

My son always holds it together at school and Dr's offices and saves it for us. My son is equally as mean to his siblings and the dog!

Remember this Dr. might not truely understand or believe PANDAS exists. Document everything. If it is truely PANDAS you will revisit all this again next time he gets sick. Next time if it does reoccur get a culture, titers and on antibiotics again right away. Getting a second opinion can't hurt either.

The psychiatrist pointed out to me that alot of my son's behaviors are ADHD without high impulsivity and anxiety related. The tics can even be compulsions from stress. Not every anxious kid has the handwashing type of OCD. My son obsesses over things he likes.

Read the book Against Medical Advice. I think it summarizes what we are all going through here. It sucks to have a kid who has something that is not easily recognized and treated! Dr's don't get it and we look like bad parents because of the behavior issues.

Today we are trying the child psych for the first time. I am wearing out though. My constant neck pain is returning and everyone has been sick in my house for a week. I am so scared what all these Dr's visits will do to his memories of his childhood.

 

 

 

 

Right now ds's symptoms are not at their worst so I guess I was being calm about it when he spoke with me yesterday.

 

-ahh...episodic course!

 

I feel like you need to really know my kid and spend a week at my home to really get what I am seeing.

 

-Sounds like my dd last Feb. It was like walking on eggshells...you never knew what would set her off. (After her tooth extractions things got really bad.)

 

I guess I keep looking at all the symptoms together and it just equals pandas to me.

 

-I would agree!

 

I guess my question is that if the titers are low than would antibiotics still do the trick or were the antibiotics to get the titers low? This doctor told me if the blood work confirmed what we had suspected he would have put him on 3 months of zithromax but I am sure he would not agree to do that based on the titers.

 

-A lot of docs are confused about this. The ASO/anti-dnase B are not the antibodies that are causing the actual problem in PANDAS. The antibodies that are the actual problem are most likely anti-brain (basal ganglia) anti-bodies which (I'm guessing) you could only measure by doing a CSF tap (if that). Our dd (low titers) responded to Azith. (but not Amoxicillin or a Cephalosporin...had intial mood improvement on Augmentin but no resolution of symptoms). I think the more acute cases (with red sore throat) are likely to respond to Amoxicillin, but many (chronic) don't. Some kids respond to Kelfex (Cephalosporin) and not Azith. Some kids don't respond to abs then IVIG is the next thing to consider. We're actually thinking of IVIG, even though our dd is doing pretty well on Azith. since I do have concerns about keeping her on Azith for the next 10 years and what happens if the Azith. stops working (resistant strain of strep etc.) Some kids don't respond to antibiotics but do respond to steroid burst (to see if IVIG would help).

 

-A pediatric rheumatologist at Stanford thinks some of these PANDAS kids have strep "hiding out" in their bodies (not easily cultureable as in the throat).

 

Ds's coping with his sleep fear (of being alone) and the throat clearing and eye blinking come and go. His behavior.. ah, his behavior. I say he is like a ticking time bomb.. not a nuclear bomb but a small little homemade one. He is not raging the way that many people here describe. He does however get beyond set in his ideas... a complete inflexibility which can result in a mini rage. I was seeing more extreme ones when he was having more severe sleep issues. So many things about him just fit the mold of pandas... has mild ocd tendancies but they come and go... handwashing.. just enough that we take notice but not enough that it impacts his life at all.. it's stopped for the moment.. now I have to sometimes tell him to wash which is funny to me. He went through a hoarding of garbage stage about 2 years ago... that was almost funny but so not funny at the same time.

 

-episodic!

 

-I believe PANDAS is a spectrum...not all kids have severe rages. Our dd had "milder" symptoms (lots of tantrums) that got progressively worse with 2 tooth extractions (for orthodontic reasons). After the 2nd tooth extraction she was psychotic with full-blown anorexia nervosa. I don't know what would have happened w/out the tooth extractions...would things have ever gotten bad enough where we would have figured out what was going on? or would we have just thought it was all parenting/behavior?

 

The thing that upsets me the most about ds's behavior is that he is sometimes just cruel to his sister... she is 4 1/2 he is 6. I know siblings can be cruel but sometimes he gets so irrational over nothing and takes it out on either me or her. I much prefer it to be me.

 

-This disease really impacts the whole family

 

I don't know what to think. It's frustrating because I truly thought that the results would show what I needed to feel confident it was this. I wanted them to not show it because I didn't want it to be this but at the same time now I just feel like it could be this and there is nothing I can do about it. My dh thinks I am a bit crazy even thinking it is this as is... now he feels the dr. confirmed that. He has yet to say I told you so... but it's there, lurking.. waiting to be said He's a good guy..but not able to think outside the box!

 

-Yes, I was disappointed when my dd's titers first came back low. Then the cultures came back positive (perianal and throat on PANDAS dd and throat on sibling) and I knew it really was PANDAS. Unfortunately not all kids get high titers. Did he run the D8/17 marker?

 

Do you think I will be "hurting" ds by waiting it out a bit... and then if symptoms come back up especially when I know he has been exposed to strep to then persue it more?

 

-Keep good records and be vigalent about culturing ( family members too!) when symptoms (behavior, tics) come back (or if kids show fever, other strep signs).

 

I think this dr. is a good one and I think if I have more concrete things like another episode clearly related that he will work with me but right now I guess since ds is sorta doing ok I feel more conflicted on what to do. I do know that his crazy fear of sleeping alone started 2 days after my dd had strep and the end of this past august... and my ds had strep 2 times within 9 months prior of that and those were the first times I was aware of him having strep.. neither time he had typical strep signs.. just one time we found it because he had pink eye, the other I had him tested since everyone in the house had it. To me that just didn't seem like a coincidence...

 

-I don't think it is a coincidence. How about getting a second opinion from someone like Dr. K? My kids never got "classic" strep signs either (sometimes fever, sometimes nothing, but not the sore throat!) which made things trickier for us as well.

 

 

In hindsight, we had taken him to the dr. at the age of 2 for eye blinking and 4 for throat clearning which came and went and the dr wrote it off as normal childhood tics and then they came back in September. I have always said something was off with him but have been told it was just his personality.. he's extremely bright and detail oriented... now I see it more as inflexible and unable to see that someone else might be right. He has a hard time with a change of plans because of his inability to be flexible. He is able to conform though when necessary so he has no issues at school (other than the teacher needing to remind him that she will ask him if she needs help doing her job ... she's wonderful and very patient with him!). He saves his charming behaviors for me. The dr of course sees a well mannered 6 year old sitting before him.

 

-When symptoms aren't "full blown" it can be hard to figure out what is PANDAS, what is the kids personality, what is parenting. (But I can tell you for sure that "bad parenting" doesn't cause tics!) Our dd always held it together better in school than at home as well.

[amy s]

Thank you both for your posts.

 

EAMom, it sure seems so clear the way you sorted that out. I wish the doctors sorted it out just as clearly. I am going to make sure to keep a good record and the next time one of us has strep or that ds is off I am going to insist on cultures and bloodwork. I was concerned that the results from this bloodwork would be off being that it was a few months from when he was at his worst to when I got the bloodwork but my dr. felt it would still be high.

 

The dr. I saw most definitely does believe it exists. He takes a more wholistic approach to medicine (One of my regular peds gave me the name from one of his patients who was helped by him.... that ped believed in it but said it was out of his realm.. the others in my regular pediatricians group did not believe in it, one told me I was being a crazy mother and that I was looking to much into things... This doctor that I saw told me that it was definitely logical to look into it based on my ds's symptoms.. I guess he just is all about the test results... or perhaps if ds shows more symptoms that make it clearer it will help.. gosh, I don't want him to have to have severe symptoms for that.

 

Did I mention that until a few weeks ago ds was using the bathroom pretty often too.. enough that his teacher mentioned it to me without my asking... I mean, not constant but 4 times during the school day.. when he goes before and right after school as well. Now all of a sudden that has eased up too...

 

So would I be a bad mother if I took a wait and see approach? I am afraid that if I seek another opinion while he is still in limbo with symptoms I will be right back where I started. Dr. K... I had emailed him a while back and he did say it sounded that way to him. I know this will sound horrible but I just can't justify spending a few hundred dollars on a phone consult at this point. My dh would really have to be on board with me to do that. Don't get me wrong, if symptoms come back I will do whatever it takes but right now I just can't go that route. I so know that sounds awful. I really do... it's hard when nobody around you, friends or family know a thing about any of this. It is making me look like a nut who wants to find something wrong with her child. I do want to find it but only so I can "fix" it.. not because I want there to be something wrong.

 

 

Thanks so much for the sounding board!!!

 

Do you think I should try the 5HTPE? My ds doesn't have problems staying asleep and falling asleep is only a problem because he's afraid... but right now he does fine as long as I hold a sign that says don't forget to check on ds... I know that sounds crazy but it makes him happy.

 

Oh, and I read Against Medical Advice. I read it in 3 days.. and then gave it to my mother to read. It broke my heart that kids go through that... and certainly put some of my worries in perspective.

 

 

 

Erica-

 

I completely understand what you are going through as I am sure everyone on this board does too. KNOWING that something is wrong/different/changed in your child but not being able to pinpoint what it is and other people thinking that it is YOU just wanting a diagnosis. Well, of course YOU want a diagnosis. Why, because YOU KNOW something is different! I remember at several points feeling the same way. Some of the symptoms are just not evident to physicians in a 20 minute visit or in a hour long psychiatric visit! (for us, at times they were NOT obvious symptoms but they definately became that way and it was evident to anyone who was around that something was wrong). There were plenty of times people just thought it was a parenting issue, I'm sure.

 

I have mixed feelings about your pediatrician. On one hand it is excellent that he is one who at least believes in PANDAS. But on another hand, since the titers didn't show up as expected it might be hard to get him to sign on to it now. We had that experience. I had one pediatrician who did believe in PANDAS---had even sent a patient to Susan Swedo in the 1990's. That patient ended up not being eligible for her study and so the pediatrician believed that child did NOT have PANDAS. Also the pediatrician was one who already knew everything...it was very difficult to try to teach HIM anything about PANDAS...or get him to believe in any anecdotal evidence that I would try to discuss. (And at the time I was a well respected RN working in that very clinic!). However, my dd's titers did come back slightly elevated (after almost 8 months of symptoms before testing) and so I was able to convince him that it was necessary to at least give prophylactic antibiotics as in the case of a Rheumatic Heart Disease patient. And based on the sudden onset and the titers we were able to get him to at least give us PCN. We really, however, started making progress when we found a younger pediatrician with an open mind who had NO experience with PANDAS. I handed him tons of research articles and told him our story and he pretty much was a believer. HOWEVER, he still won't give us a 'diagnosis' of PANDAS for school purposes.

 

You are in a tricky situation because the titers are not raised at this time. So, I understand you doing a wait and see approach. But in my case I was scared to death that the symptoms would just keep getting worse (which they really didn't---they were just different each time) Because there was NO way that we could keep her out of the psychiatric hospital if they were ANY worse...we were barely hanging on. In my dd, I firmly believe that strep caused the initial symptoms in my child, but after that it was anything and everything. I believe this last bout we had was from mycoplasma and strep combined....but her titers were NOT elevated! This last time her regular titers were within limits and the only test we got that was elevated was from Neuroscience, (I think) with their PANDAS panel, the Streptozyme IgM was really high as well as some of the others on that PANEL (but that was the one that Dr. K mentioned when we talked about it).

 

I guess if I were you (and maybe you already have), I would just start collecting every bit of research articles that talk about the testing and the symptoms and everything that applies to your situation (antibiotics?) so that as soon as you have a spike in your child, you can hand your doc the articles. I would also ask your child's teacher to please notify any time a child in the class has an illness with a fever. But I also would not put all your eggs in the PANDAS basket, either, which it doesn't sound like you are. It seems like there are so many things that are causing these kids to have changes in behavior these days. Although, I'm not up to date on all those lately. Good luck with everything!

regards,

amy s

[EAMom]

Erica,

 

Amy S had good insights.

 

I haven't used the 5HTPE....I think others on this board may be more familiar with it?

 

Another episode is less likely to get out of hand now that you are aware of PANDAS and know to culture (including sister) early on...but it's always hard to predict what will happen. Our PANDAS episode last spring was so bad that I don't *ever* want to repeat it!

 

What state do you live in? One problem with doing a Dr. K. consult is that is he's out of state he can't do too much unless you have a local doc who is willing to take his advice and work with him on antibiotics or steroid burst (to see if IVIG would work). (Michele is currently having this problem!)

 

I do agree that your doc seems stuck on the titer issue.

 

Here's a link on titers http://www.latitudes.org/forums/index.php?...amp;#entry25312

 

This is from the last paragraph on that link:

One final comment, Swedo does not require high ASO titers or even rising ASO titers to diagnose PANDAS. The titers are checked only when a positive strep culture is not available and you are retroactively looking for an indication of past infection. The flaw with using titers as an indication of prior strep infection is (as I stated above) that "low" values can still be associated with prior strep infections since the rate of ASO titer decline is not known, most people only have a single sample, and the ASO response is variable across individual and strep type.

[ajcire]

Thanks! I am in NY. My dr. mentioned the use of IVIG with Pandas but said he personally did not lean toward that although he said he has seen success with it with some children who had both pandas and autism... I am thinking he probably just has not had a lot of experience with this. I don't think Dr. K would be able to help me.

 

I am going to almost hope that if it is pandas that the next episode makes it clear and I will keep on it with the dr.

 

IF it is Pandas and I do nothing because it all stays where his symptoms are as is, am I doing him any harm? It is not really impacting his life at the moment... meaning that really to anyone else he would just seem to be a kid with a quick temper who doesn't like his sister. They of course don't know any of the history.

 

** Here is my confusion... I will try to get the titers done immediately next time I see what I think is an episode in my ds BUT if he did actually have strep wouldn't it just be normal for the titers to be high therefore still not telling anything?

 

 

Erica,

 

Amy S had good insights.

 

I haven't used the 5HTPE....I think others on this board may be more familiar with it?

 

Another episode is less likely to get out of hand now that you are aware of PANDAS and know to culture (including sister) early on...but it's always hard to predict what will happen. Our PANDAS episode last spring was so bad that I don't *ever* want to repeat it!

 

What state do you live in? One problem with doing a Dr. K. consult is that is he's out of state he can't do too much unless you have a local doc who is willing to take his advice and work with him on antibiotics or steroid burst (to see if IVIG would work). (Michele is currently having this problem!)

 

I do agree that your doc seems stuck on the titer issue.

 

Here's a link on titers http://www.latitudes.org/forums/index.php?...amp;#entry25312

 

This is from the last paragraph on that link:

One final comment, Swedo does not require high ASO titers or even rising ASO titers to diagnose PANDAS. The titers are checked only when a positive strep culture is not available and you are retroactively looking for an indication of past infection. The flaw with using titers as an indication of prior strep infection is (as I stated above) that "low" values can still be associated with prior strep infections since the rate of ASO titer decline is not known, most people only have a single sample, and the ASO response is variable across individual and strep type.

[peglem]

Thanks! I am in NY. My dr. mentioned the use of IVIG with Pandas but said he personally did not lean toward that although he said he has seen success with it with some children who had both pandas and autism... I am thinking he probably just has not had a lot of experience with this. I don't think Dr. K would be able to help me.

 

I am going to almost hope that if it is pandas that the next episode makes it clear and I will keep on it with the dr.

 

IF it is Pandas and I do nothing because it all stays where his symptoms are as is, am I doing him any harm? It is not really impacting his life at the moment... meaning that really to anyone else he would just seem to be a kid with a quick temper who doesn't like his sister. They of course don't know any of the history.

 

** Here is my confusion... I will try to get the titers done immediately next time I see what I think is an episode in my ds BUT if he did actually have strep wouldn't it just be normal for the titers to be high therefore still not telling anything?

 

The very best thing would be to get a positive culture associated with symptom exacerbation. The best you can get with titers is "probably had a recent infection" Low titers do not mean there has not been an infection, and this is where most docs get it wrong. Titers can not rule out, they can only confirm. My daughter had many, many positive cultures but never high titers (and this is where I think they should be asking Why? instead of dismissing it as carrier status). The real problem is that when the culture comes back neg. and the titers are low, the docs have nothing to indicate a course of treatment. Treating for strep under those circumstances would call their professional judgement into question. Even if they believe their is something wrong and the treatment would help, they need to have evidence to justify treatment.

[EAMom]

Well said Peglem!

 

We don't bother with titers anymore. My dd's were "normal" 2 mo. after FEVER when symptoms were severe (and positive culture!) last March. 1 mo. after that (while on Amoxicillin) symptoms were ramping (sister was still positive) again and titers were even lower. I think she's just one of those kids that doesn't make a lot of titer.

 

We also don't culture dd much since she's on abs and would most likely just get a false neg.

 

We do culture her younger sister. She is a strep carrier. Last month when PANDAS dd started to have mild symptoms (few tantrums, some defiance, tics) younger sister was postive. Our ped was surprised.

 

That said...some people do find tracking titers helpful.

 

Peglem...re carriers. I agree with you that these docs are in error when they dismiss the carrier status as benign. Even Ed Kaplan said that "evidence is mounting that the carrier state is not as benign as once thought." Also, we don't really know that carriers have low titers. I am pretty sure that has not been studied. (Someone can correct me if I'm wrong!)

 

Yet another thought Erica...get the actual values (strep titers) and post them...what some docs call "normal" are actually elevated (even though not sky high.)

[Cynthia]

Hi that was an interesting post. Just keep posting such nice and informative threads.

[ajcire]

You guys are awesome in how you can share your info and make it understandable even to me!

 

During the conversation the dr. said his numbers were 40 when he has kids coming in with 400-800... I have no idea exactly what that meant.. I feel a bit overwhelmed at the idea that I need to get back on this.

 

I was thinking about this again tonight while ds started again with how I need to sit outside his door at bedtime.. of course unlike a few months ago he only carried on and yelled at me for a few minutes. If it starts more than it did tonight.. I will sit back outside his room again like I used to.. I don't want him to be scared but I so hate sitting out there waiting for him to fall asleep. I sound like an awful mom I know.

 

 

 

 

Hi that was an interesting post. Just keep posting such nice and informative threads.

[EAMom]

Hi Cynthia! welcome!

Erica...

That value was probably ASO...did he get anti-dnase B?

 

I know you are not supposed to compare across labs...but these were my dd's ASO values (run at 2 different labs, 1st was in hospital in March, 2nd at pediatrician's in April).

 

Jan. 2008 Dd was 7.5 years old. 3 day fever (1/4 of class sick, at least some with strep), start of behavior changes (emotional lability, tantrums, anxiety, stopped eating breakfast/food restriction)...symptoms worsened (OCD, tics, fear of sugar, fear of gaining weight, anorexia nervosa) after 2 tooth extractions in Feb/early March (extractions were for orthodontic reasons).

March 2008 ASO 39 (school age "normal" <166), perianal culture (I noticed blood in toilet at hosp.) positive and throat culture positive (also asymptomatic sister's throat positive), hospitalized (6 days, eating disorder clinic) for anorexia nervosa/malnutrition/OCD (had lost 15% body weight in 2 weeks), psychotic, suicidal statements, tics, completely altered child from 2 mo. previously (teacher was worried that my dd had been molested she was so changed/withdrawn).

April 2008 ASO 28 ("normal" is <199), initially better (mood/eating) after hosp. in March, then symptoms ramping towards end of April when titers were drawn (re-exposure to sister? strain not suspectible to Amoxicillin?)

 

So...my dd's values were lower than yours (both times). Pretty much *everyone* is in agreement that my dd has PANDAS...child psychiatrist (OCD specialist, former Stanford faculty), Stanford pediatric rheumatologist, pediatric neurologist (who wasn't a big PANDAS "believer" but did say my dd was the 2nd case in 10 years that she was sure was PANDAS)...fortunately I had the positive cultures (like Peglem's dd) to "prove" that strep was involved, in the face of "normal" titers.

 

There were a couple of younger pediatricians at the outpatient Eating Disorder Clinic (and our own ped. intially as well) who couldn't really accept that my dd had PANDAS (and not "regular" anorexia nervosa...like how many 7 year olds get "regular" anorexia nervosa??...sorry that is not a 7 year old disease!) because of the titers... and didn't believe that we should be doing the antibiotics. That was ignorance on their part! Thank goodness our psychiatrist believed in the PANDAS diagnosis we finally tried the Azithromycin.

[michele]

Our psychiatrist said they would not prescribe the antibiotics only the mood drugs.

 

Those are some scary symptoms your daughter had. I am so happy you got someone to believe in you and treat her correctly. I mean you hear horror stories of how parents are blamed for abuse when something strange comes over a child like these changes you describe. Poor baby. I am so happy she is feeling more herself again. Bless her heart that had to be so hard on you all. You and your hubby are such a big help to others here! Thanks.

 

 

Hi Cynthia! welcome!

Erica...

That value was probably ASO...did he get anti-dnase B?

 

I know you are not supposed to compare across labs...but these were my dd's ASO values (run at 2 different labs, 1st was in hospital in March, 2nd at pediatrician's in April).

 

Jan. 2008 Dd was 7.5 years old. 3 day fever (1/4 of class sick, at least some with strep), start of behavior changes (emotional lability, tantrums, anxiety, stopped eating breakfast/food restriction)...symptoms worsened (OCD, tics, fear of sugar, fear of gaining weight, anorexia nervosa) after 2 tooth extractions in Feb/early March (extractions were for orthodontic reasons).

March 2008 ASO 39 (school age "normal" <166), perianal culture (I noticed blood in toilet at hosp.) positive and throat culture positive (also asymptomatic sister's throat positive), hospitalized (6 days, eating disorder clinic) for anorexia nervosa/malnutrition/OCD (had lost 15% body weight in 2 weeks), psychotic, suicidal statements, tics, completely altered child from 2 mo. previously (teacher was worried that my dd had been molested she was so changed/withdrawn).

April 2008 ASO 28 ("normal" is <199), initially better (mood/eating) after hosp. in March, then symptoms ramping towards end of April when titers were drawn (re-exposure to sister? strain not suspectible to Amoxicillin?)

 

So...my dd's values were lower than yours (both times). Pretty much *everyone* is in agreement that my dd has PANDAS...child psychiatrist (OCD specialist, former Stanford faculty), Stanford pediatric rheumatologist, pediatric neurologist (who wasn't a big PANDAS "believer" but did say my dd was the 2nd case in 10 years that she was sure was PANDAS)...fortunately I had the positive cultures (like Peglem's dd) to "prove" that strep was involved, in the face of "normal" titers.

 

There were a couple of younger pediatricians at the outpatient Eating Disorder Clinic (and our own ped. intially as well) who couldn't really accept that my dd had PANDAS (and not "regular" anorexia nervosa...like how many 7 year olds get "regular" anorexia nervosa??...sorry that is not a 7 year old disease!) because of the titers... and didn't believe that we should be doing the antibiotics. That was ignorance on their part! Thank goodness our psychiatrist believed in the PANDAS diagnosis we finally tried the Azithromycin.

[ajcire]

EAMOM, I don't know which numbers the 40 was for but he did do both the tests mentioned.. He also did a whole ton of others from vitamin d to allergies and everything came back good. Thank you for sharing that information. My ds did not have a positive strep throat culture at the time that I realized something was wrong (sleep issues started) but it was 2 days after my daughter had strep.. I begged them to culture to ds and finally they did (my regular ped). He had strep for the first time this past year in March and then again in June... those are the only times I know of that he had it but I might not have even known.. he didn't show regular symptoms either time.. My daughter had it several times as well.. so he had a lot of exposure to it this past year.

[peglem]

EAMOM, I don't know which numbers the 40 was for but he did do both the tests mentioned.. He also did a whole ton of others from vitamin d to allergies and everything came back good. Thank you for sharing that information. My ds did not have a positive strep throat culture at the time that I realized something was wrong (sleep issues started) but it was 2 days after my daughter had strep.. I begged them to culture to ds and finally they did (my regular ped). He had strep for the first time this past year in March and then again in June... those are the only times I know of that he had it but I might not have even known.. he didn't show regular symptoms either time.. My daughter had it several times as well.. so he had a lot of exposure to it this past year.

 

Don't look for regular strep symptoms before getting him checked. When the PANDAS stuff starts- that's when you want to have the strep test done, because you want to establish a correlation between the behaviors and the strep. You can order rapid strep tests for home use, if you want to check him yourself at home first. I can try to locate the website for those tests if you're interested.

[EAMom]

Michele...

Our psychiatrist prefers to have the ped write the antibiotic rx...maybe it's a "turf" thing. I asked her point blank to write the rx for us. We had just gotten out of the hospital, sister was strep carrier (still positive at the time, but we didnt know it). Psych. said normally she has the ped write it but at that point our ped wasn't fully buying the PANDAS diagnosis (told us prophylactic antibiotics were only used for Rheumatic Fever). We did eventually get the ped on board. I think our Psych. realized how bad our situation was and felt sorry for us.

Legally, the psychiatrist can write the script for antibiotics. And I believe it's fully appropriate to do so in a case like this...after all, it is a treatment for a psychiatric problem!

[ajcire]

Peg, if you have the site for the rapid tests that would be great but I thought that often by time the pandas sympoms appear it could be a while from the intial strep? If that's so wouldn't the culture not show it even if he had it? He didn't test with a positive culture when I realized something was not right with him (when sleeping issues started and I started putting 2 plus 2 together) but had definitely been exposed to it via my daughter.

 

 

Michele...

Our psychiatrist prefers to have the ped write the antibiotic rx...maybe it's a "turf" thing. I asked her point blank to write the rx for us. We had just gotten out of the hospital, sister was strep carrier (still positive at the time, but we didnt know it). Psych. said normally she has the ped write it but at that point our ped wasn't fully buying the PANDAS diagnosis (told us prophylactic antibiotics were only used for Rheumatic Fever). We did eventually get the ped on board. I think our Psych. realized how bad our situation was and felt sorry for us.

Legally, the psychiatrist can write the script for antibiotics. And I believe it's fully appropriate to do so in a case like this...after all, it is a treatment for a psychiatric problem!