5 yr old daughter suspected...questions ?

[elykoj]

history of my daughter and then some questions:

 

5 years old. she is asymptomatic of typical strep signs. never has fever or sore throught. only way we suspected it her cheeks get rosey,her vaginal area gets red,and she gets somewhat emotional when she doesnt get her way with tantrums that last sometimes 45 minutes.sometimes her swabs were positive and sometimes negative. if positive treated for 10 days. This has been the case since she was 2 1/2. Last year she had her tonsils and adnoids removed due to far to many strep infections. In the recent weeks there has been a few strep cases at her daycare so my wife insisted on getting the Anti-Streptolysin O test.normal range is 0-125. my daughter was 255. they suspect PANDAS because of the behavior and this test and want us to see a Pediatric Neurologist to get checked out.

 

1. Does this sound consistant with Pandas?,or maybe. my daughter is very strong willed like my wife,and when she does not get her way she acts out big time, but if we gave in to her,i dont think we would see those tantrums because in times we have said ok to her once the tantrum starts, she immediatly stops crying and carrying on.

 

2. Secondly, how do we know when she gets a strep infection to treat it, if she asymptomatic?

 

3. I am confused by the range her score was in? if normal is between 0-125, if she was within this range does that mean she has not had a recent strep infection? or if its over that score that determines the recent infection?

 

4. I am also confused with the antibiotic use if it is PANDAS?, how can someone stay on antibiotics for several years until they reach puberty? I thought doctors dont want to prescribe too many because of tolerance to the body and them stop working. ?Also what about C-DIFF infections? over use of antibiotics i thought caused this? I had it a few years ago in the hospital from antibiotics for several weeks.

 

5. Can PANDAS cause heart trouble? and is that just if not treated with antibiotics? I am concerned with this issue because my youngest daughter who is 4, is also asymptomatic with strep, has Mosaic Turners Syndrome and her only issue with that at this time is a bicuspid aortic valve. She is in great health and is monitored every other year by a pediatric cardiologist with no restrictions. she has not been tested with the Anti-Streptolysin O but we are thinking of getting her tested now. she is predisposed to NLD, NON VERBAL LEARNING DISABILITY,

 

thanks for any info you can provide to me.

[peglem]

1. Does this sound consistant with Pandas?,or maybe. my daughter is very strong willed like my wife,and when she does not get her way she acts out big time, but if we gave in to her,i dont think we would see those tantrums because in times we have said ok to her once the tantrum starts, she immediatly stops crying and carrying on.

It sounds consistent to me. My guess is that this is more than just strong willed- "getting her way" is probably not really her way, but OCD driven, where it feels more like a life or death need to her, instead of a preference. Not cooperating with obsessions or compulsions in OCD causes over the top anxiety and fight or flight reactions.

2. Secondly, how do we know when she gets a strep infection to treat it, if she asymptomatic?

We check for strep when the associated behaviors flare- its the only symptom we get. Nine times out of ten, she is positive when her behaviors indicate that she is.

 

3. I am confused by the range her score was in? if normal is between 0-125, if she was within this range does that mean she has not had a recent strep infection? or if its over that score that determines the recent infection?

ASO titers are a confusing issue. Suggest the following threads for more info on this:

http://www.latitudes.org/forums/index.php?showtopic=3756&st=0#entry29305

http://www.latitudes.org/forums/index.php?showtopic=3756&pid=29305&mode=threaded&start=#entry29305

 

4. I am also confused with the antibiotic use if it is PANDAS?, how can someone stay on antibiotics for several years until they reach puberty? I thought doctors dont want to prescribe too many because of tolerance to the body and them stop working. ?Also what about C-DIFF infections? over use of antibiotics i thought caused this? I had it a few years ago in the hospital from antibiotics for several weeks.

In rheumatic fever and other disorders prophylactic abx is common practice. Many doctors do balk at prescribing long term abx. C-diff can be an issue. Its something each of us has to grapple with and decide for ourselves if the benefits are worth the risks.

 

5. Can PANDAS cause heart trouble? and is that just if not treated with antibiotics? I am concerned with this issue because my youngest daughter who is 4, is also asymptomatic with strep, has Mosaic Turners Syndrome and her only issue with that at this time is a bicuspid aortic valve. She is in great health and is monitored every other year by a pediatric cardiologist with no restrictions. she has not been tested with the Anti-Streptolysin O but we are thinking of getting her tested now. she is predisposed to NLD, NON VERBAL LEARNING DISABILITY,

PANDAS does not cause heart problems, but rheumatic fever, caused by strepA is associated with heart problems.

[thereishope]

Welcome. At 5 years old, tantrums shouldn't really last 45 minutes. At 5 years old, when my son's PANDAS struck, he would have meltdowns lasting from a shorter time span to the upwards of lasting 3 hours.

 

If interested, here is a link to OCD in young children as seen by PANDAS parents

http://www.latitudes.org/forums/index.php?showtopic=6153&hl=

 

As for learning to live with asymptomatic kids, well, for my PANDAS son, it's his PANDAS behaviors that indicate infection. For my non-PANDAS kids, there is no way of knowing. If I know they are directly exposed, I test them. I have also started at home random testing on them. If one has strep, they all get treated. If you believe your child has strep and she test negative, you could have tested too soon, if she is on antibiotics or recently finished them, you can get a false negative, and in PANDAS kids, once the process begins, other non-strep triggers can worsen symptoms including exposure to strep, allergies, virueses, stress, etc.

 

I would test all family members, symptoms or not.

 

In addition to the antibiotic, you should give a PROBIOTIC as welll and make sure to space them out. This will hopefully keep her gut in check.

Edited July 7, 2011 by Vickie

[elykoj]

Welcome. At 5 years old, tantrums shouldn't really last 45 minutes. At 5 years old, when my son's PANDAS struck, he would have meltdowns lasting from a shorter time span to the upwards of lasting 3 hours.

 

If interested, here is a link to OCD in young children as seen by PANDAS parents

http://www.latitudes.org/forums/index.php?showtopic=6153&hl=

 

As for learning to live with asymptomatic kids, well, for my PANDAS son, it's his PANDAS behaviors that indicate infection. For my non-PANDAS kids, there is no way of knowing. If I know they are directly exposed, I test them. I have also started at home random testing on them. If one has strep, they all get treated. If you believe your child has strep and she test negative, you could have tested too soon, if she is on antibiotics or recently finished them, you can get a false negative, and in PANDAS kids, once the process begins, other non-strep triggers can worsen symptoms including exposure to strep, allergies, virueses, stress, etc.

 

I would test all family members, symptoms or not.

 

In addition to the antibiotic, you should give a PROBIOTIC as welll and make sure to space them out. This will hopefully keep her gut in check.

 

 

So everytime she has a questionable outburst, the whole family should get strep test? cant that get expensive?

[elykoj]

question?

 

i am confused again. if i child is just a typical whiny strong willed girl and throws tantrums that are doozies, and her Anti-Streptolysin O is 255, does that necessarily mean PANDAS ? doesnt the high score on test just indicate a recent strep infection ? i am sure there are kids with mood issues and maybe just brats that have had untreated strep, does that mean they have PANDAS ? SORRY but i am confused?

[peglem]

question?

 

i am confused again. if i child is just a typical whiny strong willed girl and throws tantrums that are doozies, and her Anti-Streptolysin O is 255, does that necessarily mean PANDAS ? doesnt the high score on test just indicate a recent strep infection ? i am sure there are kids with mood issues and maybe just brats that have had untreated strep, does that mean they have PANDAS ? SORRY but i am confused?

If the doozie tantrums seem to go away with abx treatment...the bacteria is probably the source for that. Yes, there are probably brats w/ untreated strep. But, with PANDAS, you should see a dramatic increase in the behaviors when there is an underlying infection causing behaviors, and a gradual reduction with treatment. Mood disorders do not typically resolve with abx. I'm not saying your child definitely has PANDAS- but you might want to observe carefully and see if there is a strep (or other infections in the case of PITAND) related pattern to these behaviors. Also, try to investigate if the behaviors are indeed related to obsessions and compulsions. Frequently, in early stages (and for many, hindsight) the behaviors just seem a bit odd or quirky, but with more infections, the behaviors become very debilitating, interfering even with things the child wants to do.

[thereishope]

No, I didn't mean that. If she is doing well and then you see an outburst that makes you feel she may have strep, you can test her first. And then determine other family members from there if she tests negative. If she has been having pretty consistent outbursts, a child may still be in the same exacerbation (if they are PANDAS) but not fully well. In that instance, you wouldn't take your child in. Unfortunately, I guess there is a learning curve to you learning what it is like for your child. I know my son may get upset, but I've learned what his PANDAS induced upset is vs just him.

 

If someone in your house tests positive for strep, then yes I would say test everyone, but ultimately it is your decision if you want to do this. Yes, this can get expensive. We have horrible insurance and pay around $100 for a strep test once you get charged the office fees, multiply that times 5 people in my house. It adds up. BUT...this is how I found out my kids had strep, my husband had strep, etc. It's rough on the budget but when you look at your child being sick and getting worse by possible reinfection or exposure...well, I do it.

 

My ped now agrees to give all of my kids a treatment dose of antibiotics if any one of thenm tests positive. This has helped with our medical cost as I may only have to pay the office visit for one child now.

 

And, yes, there are kids who throw fits, cry, etc and are not PANDAS.

 

Does your child have any other symptoms of possible PANDAS

 

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

 

Signs and Symptoms:

Children with PANDAS must be initially diagnosed with Obsessive Compulsive disorder or a tic disorder [swedo2004]. These children may have some of the following symptoms that accompany the OCD or tic disorder [swedo1998][Moretti2006]:

Obsessions (e.g., preoccupation with a fixed idea or an unwanted feeling, often accompanied by symptoms of anxiety)

 

Compulsions (e.g., an irresistible impulse to act, regardless of the rationality of the motivation)

 

Choreiform movements (e.g., milk-maid grip, fine finger playing movements in stressed stance)

 

Emotional lability (e.g.,irritability, sudden unexplainable rages, fight or flight behaviors) (66%)

 

Personality changes (54%)

 

Age inappropriate behaviors particularly regressive bedtime fears/rituals (50%)

 

Separation anxiety (46%)

 

Oppositional defiant disorder (40%)

 

Tactile/sensory defensiveness (40%)

 

Hyperactivity, impulsivity, fidgetiness, or inability to focus (40%)

 

Major Depression (36%)

 

Marked deterioration in handwriting or math skills. (26%)

 

Daytime urinary frequency/enuresis (12%)

 

Anorexia (particularly fear of choking, being poisoned, contamination fears, fear of throwing up)

PANDAS/OCD is a clinical diagnosis, often marked by the sudden onset and extreme symptom exacerbations (such as an increase of +18 points on the OCD CY-BOCS score during an exacerbation [Murphy2004]). The abrupt onset and remission after eradication of streptococcal infection separates the child from non-PANDAS OCD[swedo2004]. Many parents can pinpoint a day or a week when behaviors changed [Çengel-Kültür2009]

 

When a child has primarily vocal and motor tics, the symptoms may appear to overlap with symptoms of Tourettes Syndrome; however, the children can be differentiated by observing symptom exacerbations over time [Pavone2006]. In PANDAS children, a streptococcal infection precedes symptom exacerbation and once treated, initial exacerbations generally remit. The rapid onset with significant remission is characteristic of PANDAS.

 

Researchers have described chronic PANDAS [Pavone2006] where the tics and/or obsessive-compulsive disorder have a much more gradual course. These cases are difficult to separate from non-PANDAS tics or OCD. Some researchers have found other immunologic markers (anti-neuronal and anti-basal-ganglia antibodies) that help separate PANDAS and non-PANDAS children[Kirvan2006].

 

 

So everytime she has a questionable outburst, the whole family should get strep test? cant that get expensive?

Edited July 7, 2011 by Vickie

[elykoj]

No, I didn't mean that. If she is doing well and then you see an outburst that makes you feel she may have strep, you can test her first. And then determine other family members from there if she tests negative. If she has been having pretty consistent outbursts, a child may still be in the same exacerbation (if they are PANDAS) but not fully well. In that instance, you wouldn't take your child in. Unfortunately, I guess there is a learning curve to you learning what it is like for your child. I know my son may get upset, but I've learned what his PANDAS induced upset is vs just him.

 

If someone in your house tests positive for strep, then yes I would say test everyone, but ultimately it is your decision if you want to do this. Yes, this can get expensive. We have horrible insurance and pay around $100 for a strep test once you get charged the office fees, multiply that times 5 people in my house. It adds up. BUT...this is how I found out my kids had strep, my husband had strep, etc. It's rough on the budget but when you look at your child being sick and getting worse by possible reinfection or exposure...well, I do it.

 

My ped now agrees to give all of my kids a treatment dose of antibiotics if any one of thenm tests positive. This has helped with our medical cost as I may only have to pay the office visit for one child now.

 

And, yes, there are kids who throw fits, cry, etc and are not PANDAS.

 

Does your child have any other symptoms of possible PANDAS

 

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

 

Signs and Symptoms:

Children with PANDAS must be initially diagnosed with Obsessive Compulsive disorder or a tic disorder [swedo2004]. These children may have some of the following symptoms that accompany the OCD or tic disorder [swedo1998][Moretti2006]:

•Obsessions (e.g., preoccupation with a fixed idea or an unwanted feeling, often accompanied by symptoms of anxiety)

 

•Compulsions (e.g., an irresistible impulse to act, regardless of the rationality of the motivation)

 

•Choreiform movements (e.g., milk-maid grip, fine finger playing movements in stressed stance)

 

•Emotional lability (e.g.,irritability, sudden unexplainable rages, fight or flight behaviors) (66%)

 

•Personality changes (54%)

 

•Age inappropriate behaviors particularly regressive bedtime fears/rituals (50%)

 

•Separation anxiety (46%)

 

•Oppositional defiant disorder (40%)

 

•Tactile/sensory defensiveness (40%)

 

•Hyperactivity, impulsivity, fidgetiness, or inability to focus (40%)

 

•Major Depression (36%)

 

•Marked deterioration in handwriting or math skills. (26%)

 

•Daytime urinary frequency/enuresis (12%)

 

•Anorexia (particularly fear of choking, being poisoned, contamination fears, fear of throwing up)

PANDAS/OCD is a clinical diagnosis, often marked by the sudden onset and extreme symptom exacerbations (such as an increase of +18 points on the OCD CY-BOCS score during an exacerbation [Murphy2004]). The abrupt onset and remission after eradication of streptococcal infection separates the child from non-PANDAS OCD[swedo2004]. Many parents can pinpoint a day or a week when behaviors changed [Çengel-Kültür2009]

 

When a child has primarily vocal and motor tics, the symptoms may appear to overlap with symptoms of Tourettes Syndrome; however, the children can be differentiated by observing symptom exacerbations over time [Pavone2006]. In PANDAS children, a streptococcal infection precedes symptom exacerbation and once treated, initial exacerbations generally remit. The rapid onset with significant remission is characteristic of PANDAS.

 

Researchers have described chronic PANDAS [Pavone2006] where the tics and/or obsessive-compulsive disorder have a much more gradual course. These cases are difficult to separate from non-PANDAS tics or OCD. Some researchers have found other immunologic markers (anti-neuronal and anti-basal-ganglia antibodies) that help separate PANDAS and non-PANDAS children[Kirvan2006].

 

 

So everytime she has a questionable outburst, the whole family should get strep test? cant that get expensive?

My wife had appt.with my daughter at a child psychologist today, and she was somewhat familiar with PANDAS, but after talking to my wife then daughter for an hour and a half she tends to think that she is just a strong willed girl who wants it the way she wants it when she wants it. we have a bunch of papers we need to give to the daycare and ourselves to fill out while observing her. she is not saying no, but she needs more info first. in that list thats pasted above, my daughter maybe has 3 of those.

[thereishope]

And she might "just be" (sorry, I don't like using that phrase as I was once told my son might "just be" OCD, might "just be" bipolar) a strong willed girl, but I would get the opinion of a PANDAS doctors (perhaps even over the phone), a neurologist, immunologist that is familiar with PANDAS.

 

Yes, I am a little defensive when it comes to some psychologists giving opinions on PANDAS. One who claimed to have seen PANDAS kids told me my son's problmes all stemmed from his speech disorder. Well, it didn't...it was PANDAS.

 

Part of the PANDAS journey is the parent following their parental instinct. If you think it's more than her personality, then do more research.

 

Did you have a chance to read through the OCD in a young child? This is a check list version of that post http://pandasnetwork.org/wp-content/uploads/2011/06/OCD_Checklist.pdf

 

One more question, to your knowledge is autoimmune diease prevalant in your or your wife's families?

 

Trust me, I hope your daughter isn't PANDAS and I'm not trying to push the issue, but because there was some concern on your part I owe it to you to cover bases.

Edited July 8, 2011 by Vickie

[elykoj]

And she might "just be" (sorry, I don't like using that phrase as I was once told my son might "just be" OCD, might "just be" bipolar) a strong willed girl, but I would get the opinion of a PANDAS doctors (perhaps even over the phone), a neurologist, immunologist that is familiar with PANDAS.

 

Yes, I am a little defensive when it comes to some psychologists giving opinions on PANDAS. One who claimed to have seen PANDAS kids told me my son's problmes all stemmed from his speech disorder. Well, it didn't...it was PANDAS.

 

Part of the PANDAS journey is the parent following their parental instinct. If you think it's more than her personality, then do more research.

 

Did you have a chance to read through the OCD in a young child? This is a check list version of that post http://pandasnetwork.org/wp-content/uploads/2011/06/OCD_Checklist.pdf

 

One more question, to your knowledge is autoimmune diease prevalant in your or your wife's families?

 

Trust me, I hope your daughter isn't PANDAS and I'm not trying to push the issue, but because there was some concern on your part I owe it to you to cover bases.

 

We are getting an appt to a neurologist soon. i will go through the checklist and see how many of those i think she has. autoimmune is VERY prevelent in our families. my wife sade all have thyroid issues, and my side all has colitis and crohns. i actually had my colon removed 3 years ago due to long term colitis which ended up showing low grade dysplasia. so i have a j-pouch right now. and i am still being monitored to see if i have lupus. they dont think so, but dont know for sure?

 

ok i went through the list... i only checked off 3-4 things on that list and they were minor things really.

Edited July 8, 2011 by elykoj

[thereishope]

That's good she only has 3 or 4 things! Well, not that she has 3 or 4 things, but that she doesn't have more. As for the autoimmune issues, that something to make sure you tell the doctor. I don't mean to keep throwing links at you, but here's one on maternal autoimmune diease and PANDAS http://pandasnetwork.org/2011/07/maternal-autoimmune-disease-and-pandas/ Thyroid is the most prevalant.

 

From what I have heard about lupus from my own experience that it's not uncommon to be told you may have lupus but they are not fully sure. Again, just speaking from experience with medical stuff I went through with my mom.

 

Right now, I would probably say to just monitor her (as I'm sure you have) until you can see the neurologist. Now that you've learned more about the disorder, you will notice red flags if they pop up. If her tantrums worsen or you see new things popping up, then take action sooner.

 

Oh, one more thing, as for her diet, you could try limiting things like food dyes. Food dyes can cause tantrums, metldowns, etc. Maybe try limiting it for week and see if it makes a difference. It's something to rule out.

Edited July 8, 2011 by Vickie