Sleep

[Indigo]

Is there anything that you give to your PANDAS kiddos to help them sleep?

[EAMom]

Our dd often fell asleep after we gave her Ibuprofen (when her PANDAS was bad.) Kind of weird. We didn't give it to her to make her sleep per se, but that seemed to be a side effect.

[Indigo]

Was that just after a regular dose (like one pill) of it?

[pmoreno]

Was that just after a regular dose (like one pill) of it?

 

Same thing with us. Benedryl just made her more hyper and anxious - couldn't sleep at all - when the psychiatrists originally tried trazadone - didn't work & the higher the dose, the worse it got. But when we occasionally gave a motrin, she seemed to fall asleep easier. Of course, you wouldn't want to do that on a nightly basis. We just gave a 200 mg. tablet. Pat

[peglem]

Was that just after a regular dose (like one pill) of it?

 

Same thing with us. Benedryl just made her more hyper and anxious - couldn't sleep at all - when the psychiatrists originally tried trazadone - didn't work & the higher the dose, the worse it got. But when we occasionally gave a motrin, she seemed to fall asleep easier. Of course, you wouldn't want to do that on a nightly basis. We just gave a 200 mg. tablet. Pat

 

We used to give benedril for sleep (don't judge me, you don't know how desperate we were to get this kid to sleep!) and it did make her sleepy, but it caused huge meltdown prior to sleep. Took me awhile to connect the dots, but I found out that benedril is anticholinergic, so it blocks her body's ability to calm. We used melatonin successfully for a long time, but she began to get some reaction...I don't really remember (I'm getting senile- it wasn't that long ago) maybe morning headaches or waking in the night. I decided to just try going without the melatonin to see if it would improve and it did. But when the melatonin was working well, she'd fall asleep about 1/2 hour after I gave it to her. I do give her valerian root now which works very well most nights. She usually needs ibuprophen at least once a day.

[Worried_Dad]

Sleep has been one of our biggest problems from the beginning. Originally, we tried all kinds of prescription meds (ambien, sonata, valium, etc.), and none of these helped at all. (Had some nasty side effects for our son, too.) Finally, our local DAN doc prescribed desyrel (anti-depressant used off-label for insomnia) in combination with melatonin; that finally stabilized our son's sleep cycle and gave him (and us) some relief!

 

Over time, the desyrel became ineffective, so we had to keep increasing dosage. Finally, last summer, we decided to discontinue it (were worried about side effects at higher doses). But then he couldn't sleep at all, so we tried benedryl along with one ibuprofen PM (to help reduce inflammation). Also tried an herbal sleep supplement called Somulin.

 

Since we stopped the desyrel, here's the nightly combo that has allowed our son to get to sleep at a decent time most nights.

1) 2 somulin capsules

2) 1 melatonin tablet (5 mg)

3) 2 benedryl (25 mg tablets)

4) 1 ibuprofen PM (200 mg - occasional)

 

BTW, how bad is it for us to be using the 200 mg of ibuprofen? Should we discontinue that for safety's sake?

[pmoreno]

Sleep has been one of our biggest problems from the beginning. Originally, we tried all kinds of prescription meds (ambien, sonata, valium, etc.), and none of these helped at all. (Had some nasty side effects for our son, too.) Finally, our local DAN doc prescribed desyrel (anti-depressant used off-label for insomnia) in combination with melatonin; that finally stabilized our son's sleep cycle and gave him (and us) some relief!

 

Over time, the desyrel became ineffective, so we had to keep increasing dosage. Finally, last summer, we decided to discontinue it (were worried about side effects at higher doses). But then he couldn't sleep at all, so we tried benedryl along with one ibuprofen PM (to help reduce inflammation). Also tried an herbal sleep supplement called Somulin.

 

Since we stopped the desyrel, here's the nightly combo that has allowed our son to get to sleep at a decent time most nights.

1) 2 somulin capsules

2) 1 melatonin tablet (5 mg)

3) 2 benedryl (25 mg tablets)

4) 1 ibuprofen PM (200 mg - occasional)

 

BTW, how bad is it for us to be using the 200 mg of ibuprofen? Should we discontinue that for safety's sake?

 

 

I guess I would be less concerned about the occasional 200 mg. of motrin than the nightly 50 Mg. of benedryl. Is that something you absolutely have to use with everything else for him to sleep? Try it without it for a couple days to see what happens. Maybe the other things are enough. The melatonin supposedly helps to get them to sleep quickly, but doesn't stop them from waking later in the night. Don't know enough about the somulin to say anything, but I guess it might be worth trying without the benedryl. BTW, had you thought about doing a neurotransmitter profile just to see what his serotonin, dopamine, histamine, GABA, epinephrine & norepinephrine levels are? There are a few others that are considered to be useful, but those that I listed are probably most important. Anyway, once you do that, you might be told that he could benefit from kavinace which balances everything and someone else had mentioned calmPRT (both are by neuroscience). I most likely will start Gaby on these once her results are in from the tests. I'm sure she'll need them, but I do want the results in hand before I start her on anything else.

[michele]

The Abilify was our answer to the sleep issue. He takes it n the AM and was able to stay focused during the day and then falls off to sleep like a rock. However it is also supposed to help with the moods and emotional liability but it has stopped working each time shortly after we upped it. We are at 5 mg a day and that is the most he wants him on. He is still crying easily and overreacts to things in anger. I don't know why it isn't working for the moods because it is supposed to help with bipolar. I tried Zoloft with the Abilify and it wasn't helping either with the moods and anxiety.

 

Michele

Is there anything that you give to your PANDAS kiddos to help them sleep?

[Indigo]

So, is the benadryl something that is not good for PANDAS kids or for everyone to take so often? I thought it was relatively safe in general...we've tried melatonin and Benadryl and they work about the same to help her to fall asleep. But she is up before it is even daylight outside and then is cranky after 10am.

[EAMom]

We gave dd 200mg Ibuprofen daily for about 2 mo. straight this summer (with 10mg prozac, 250mg Azith., probiotic) and did not have any problems. I would expect gastrointestinal problems would be what you might be worried about if you did have a problem. However, 200mg isn't a super high dose for a child (about 50 pounds). Don't give it on an empty stomach, although we did in the beginning b/c we were desparate (and dd had anorexia). I suppose techincally, if you wanted 24-7 coverage you'd need to give it 3x daily (since it lasts 6-8 hours). We gave it mainly just in the morning to help with her behavior/eating during the day...but it did make her often nap/sleep.

 

Ibuprofen is an interesting drug. Here's an article on the Boston University study that showed Ibuprofen use lowers the risk of Alzheimers/dementia. http://www.injuryboard.com/national-news/p...googleid=238400 Another study found that another NSAID (naproxen) didn't have this effect...so Ibuprofen may be unique in this respect.

[ajcire]

My dr. just called with results today for my ds that show that I am likely not dealing with pandas... sigh of relief but of course at the same time if I knew what was wrong I felt I could work with it... he suggested 5HTP and said it helps with sleep and often with tic disorders. I haven't decided if I will try it but thought I would throw it out there.. of course I have no idea if he would have recommended it if my ds did indeed have pandas so maybe it's not used for that? I have been trying to research it....

 

I will probably post asking about this in another thread when I have a minute.

[EAMom]

Erica...please be careful about letting a doc "rule out" PANDAS with bloodwork. There is no blood "test" for PANDAS. If he is saying your son doesn't have PANDAS because of low strep titers (ASO, anti-dnase B ) then he is 100% wrong. You can not rule out PANDAS based on low titers. Titers are only part of the picture, serving as evidence of past strep infection if the child is no longer culturing positive. Unfortunately, not all kids with strep (or PANDAS) get high titers. Our dd had clear cut full-blown psychotic PANDAS (with positive culture, and her sister was culture positive too) and her titers were low 2 and 3 mo. after FEVER (strep exposure, start of behavior change.) History, symptoms, and cultures (if available) are much more important than titers for diagnosing PANDAS than bloodwork. You really need to take titers with a grain of salt. (To further confuse matters, completely normal kids can have high titers if they've had strep).

 

Unfortunately, a lot of docs are confused about the titer issue.

 

This is from the NIMH website:

 

Q. Is there a test for PANDAS?

 

A. No. The diagnosis of PANDAS is a clinical diagnosis, which means that there are no lab tests that can diagnose PANDAS. Instead clinicians use 5 diagnostic criteria for the diagnosis of PANDAS (see below). At the present time the clinical features of the illness are the only means of determining whether or not a child might have PANDAS.

 

Q. What are the diagnostic criteria for PANDAS?

 

A. They are:

 

Presence of Obsessive-compulsive disorder and/or a tic disorder

Pediatric onset of symptoms (age 3 years to puberty)

Episodic course of symptom severity

Association with group A Beta-hemolytic streptococcal infection (a positive throat culture for strep. or history of Scarlet Fever.)

Association with neurological abnormalities (motoric hyperactivity, or adventitious movements, such as choreiform movements)

[ajcire]

I have been thinking about this a lot and was thinking of this when he told me he felt it was safe to rule out pandas. 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. He told me to keep him posted if things start back up or any new symptoms appear. He said perhaps his behaviors are just on the extreme end of a child being 6, testing the waters... I don't know. I feel like you need to really know my kid and spend a week at my home to really get what I am seeing. He said that more often than not tics are just tics but that when presented with the symptoms I described he did agree that pandas was a possibility.. he did seem stuck on those test results though. I guess I keep looking at all the symptoms together and it just equals pandas to me.

 

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.

 

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.

 

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.

 

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!

 

 

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? 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... 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.

 

 

 

Erica...please be careful about letting a doc "rule out" PANDAS with bloodwork. There is no blood "test" for PANDAS. If he is saying your son doesn't have PANDAS because of low strep titers (ASO, anti-dnase B ) then he is 100% wrong. You can not rule out PANDAS based on low titers. Titers are only part of the picture, serving as evidence of past strep infection if the child is no longer culturing positive. Unfortunately, not all kids with strep (or PANDAS) get high titers. Our dd had clear cut full-blown psychotic PANDAS (with positive culture, and her sister was culture positive too) and her titers were low 2 and 3 mo. after FEVER (strep exposure, start of behavior change.) History, symptoms, and cultures (if available) are much more important than titers for diagnosing PANDAS than bloodwork. You really need to take titers with a grain of salt. (To further confuse matters, completely normal kids can have high titers if they've had strep).

 

Unfortunately, a lot of docs are confused about the titer issue.

 

This is from the NIMH website:

 

Q. Is there a test for PANDAS?

 

A. No. The diagnosis of PANDAS is a clinical diagnosis, which means that there are no lab tests that can diagnose PANDAS. Instead clinicians use 5 diagnostic criteria for the diagnosis of PANDAS (see below). At the present time the clinical features of the illness are the only means of determining whether or not a child might have PANDAS.

 

Q. What are the diagnostic criteria for PANDAS?

 

A. They are:

 

Presence of Obsessive-compulsive disorder and/or a tic disorder

Pediatric onset of symptoms (age 3 years to puberty)

Episodic course of symptom severity

Association with group A Beta-hemolytic streptococcal infection (a positive throat culture for strep. or history of Scarlet Fever.)

Association with neurological abnormalities (motoric hyperactivity, or adventitious movements, such as choreiform movements)

[EAMom]

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.

[michele]

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.