PANDAS survey - informal

[momto2pandas]

I think the below response is great. As I said before, I made it through school ok, but what a difference it would have made to my self esteem if I had been made to feel more supported by my teachers and others before my condition became so dire that there was no question of my needing special accommodation. Since there was no recognition of what was happening to me by the adults in my life, I was constantly accused of basically "doing it on purpose" and essentially being a brat and purposely causing everyone else a lot of trouble. I had teachers yell at me. Talk about adding insult to injury. I guess there needs to be a balance and you have to figure out how much your kid can manage, and how much needs to be accommodated. I think that in some ways it served me very well to have to do what all of the other kids did and to develop my coping skills to make sure that I could manage it as well as possible - that prepared me well for the "real world". On the other hand, it's very unfortunate to go through life constantly fearing failure despite any talents you might have because you have this "thing" that can undermine your efforts at any turn, and you KNOW that if/when that happens, no-one will ever give you the kind of break that you might get if you had a "normal" illness. I am still trying to get over that feeling after all of this time. So I think I would have benefitted from having a higher dose of understanding, compassion, and accommodation in addition to the bolstering up of my own coping skills.

 

Michelle,

 

This is a response to asking what you should do about school for your 6 year old. Make sure you communicate with the school that you require an IEP (Individualized Education Program). Meet with the teacher first thing to educate the teacher about PANDAS and do make sure you place your child with a teacher that is patient. My son got "sick" in 1st grade and his teacher was downright cruel to him. She had no patience and when I tried to have him removed from her class the Principal blocked my effort...BIG MISTAKE. Always listen to your gut. I learned my lesson and advocated for my son from 2nd grade on. I demanded certain accommodations (teacher choice, seat placement, allowing him to leave the classroom to regroup if he needed, finding an understanding "buddy" in school) and I always asked the teacher to call me immediately if he was having a bad day so I could take him home. Constant communication is the key to helping your child succeed in school. If your child takes longer to finish classwork or tests then the teacher should allow him/her to finish every other problem so that he can continue with the rest of the class schedule and not get too far behind. In the earlier grades it's easier but into middle school it gets tricky because there is so much to cover in one day.

 

Having other moms to discuss PANDAS is so wonderful and I wish I had found this site sooner.

 

Lori

[lurker]

Welcome Momto2!

 

I have been so fascinated by your mention of the doctor who predicted issues would cease with childbearing. Is this the same one who diagnosed you with autoimmune issues? Then when EAmom asked you about birth control, something clicked. I spent quite a bit of time at the onset of my child's disorder studying the immune system (specifically Th1 and Th2 responses). I still don't understand it . What I do remember is that the hormones during pregnancy rewire your immune system into anti-rejection mode, so you don't reject the baby as you would a transplanted organ. I can't help but wonder if that didn't help to reorganize your immune system by creating a "cease fire" on itself for nine months.

[momto2pandas]

No, the doctor who predicted that my issues would cease with childbearing was not the one who diagnosed the autoimmune condition. (Actually, he did diagnose thyroiditis, but not the autoimmune pattern to my psych issues.) I think he was just going on patterns he had seen with similar anorexics that he had treated - he never mentioned what he thought was the cause. You have to admit that there does seem to be a quite stereotypical "type" of child that has PANDAS, and I suspect that he had identified that distinctive type and its patterns without knowing what was actually different about its etiology.

 

Yes, I also wondered if it was part of the "reorganization" of the immune system that you do in order not to reject the baby. There is some sort of selective immunosupression that goes on. I think it's interesting though that many autoimmune conditions get better during pregnancy and flare right afterwards, but I suffered no flare. The Omegabrites might have helped with that. I have to admit, though, that I go through significant periods these days without taking the Omegabrites (you have to mail order them, and sometimes I don't get around to it), but I still haven't suffered any kind of significant PANDAS-type flare since my first child.

 

 

Welcome Momto2!

 

I have been so fascinated by your mention of the doctor who predicted issues would cease with childbearing. Is this the same one who diagnosed you with autoimmune issues? Then when EAmom asked you about birth control, something clicked. I spent quite a bit of time at the onset of my child's disorder studying the immune system (specifically Th1 and Th2 responses). I still don't understand it . What I do remember is that the hormones during pregnancy rewire your immune system into anti-rejection mode, so you don't reject the baby as you would a transplanted organ. I can't help but wonder if that didn't help to reorganize your immune system by creating a "cease fire" on itself for nine months.

[Worried_Dad]

Hi, momto2pandas:

 

I think this survey is a great idea, especially given your medical expertise. It's wonderful to have somebody "inside the system" who understands how traumatic PANDAS can be!

 

1. Our son became ill at age 10 (almost 11), after a high fever with no sore throat. Originally diagnosed as Acute Rheumatic Fever with Sydenham's Chorea (symptoms started with polyarthritis, then severe seizure-like twitching episodes).

2. Don't remember precisely, but I recall he was a bit "ahead of schedule" per our baby book.

3. Don't remember precisely, but I recall he was a bit "ahead of schedule" per our baby book. (He was really into art for some time in his early grade school years and did summer art camps.)

4. No food allergies of which we're aware. (Our doc believes he's mildly sensitive to gluten.)

5. Not bowel, but much more frequent urination.

6. No joint hypermobility.

7. No joint hypermobility for parents.

8. None of which my wife and I are aware (at least, no family members who required psychiatric treatment or hospitalization).

9. Father (me) has Crohn's disease. Mother has history of diabetes.

10. Yes, he's had trouble with the sensation of the stitching in his/her socks against his skin. Definitely worse during PANDAS flare-ups. Developed hypersensitivity to smell, taste, touch, and light since becoming ill.

11a. No panic attacks prior to PANDAS, but lots of them now.

11b. Yes - doesn't want to leave the house, be around friends, now gets very upset if Mom or Dad isn't nearby.

12. Our son has had violent "non-typical" reactions to many meds since the start of his illness. Sleep meds seemed to have the opposite effect, Valium made him hyper, Zyprexa seemed to make OCD worse, Klonapin either had no effect or increased anxiety. Ativan seems to help anxiety a bit, and desyrel helped him sleep during one phase of illness.

13. No mitral valve prolapse in our families.

14. Prior to illness, our son excelled in school, especially in math, although he was also a voracious reader, reading adult SF novels right before the PANDAS struck. Also very good at art.

15. Prior to PANDAS, our son was remarkably mature for his age (he's the oldest of 3 boys). He was quiet, introspective, very intelligent, and very sensitive / empathetic. A great kid all around: we could trust him to do things (like watch his baby brother) beyond his chronological age. That's all changed now.

 

Hope that helps. If we can provide any other info that would be useful, please let us know. BTW, our son was part of a PET scan research study that confirmed inflammation in his right basal ganglia back in March of 08.

 

Thanks for doing this!!!

 

 

Hi everyone,

 

I am brand new to this forum. I am a 41-year old Mom, and I am a grown-up PANDAS. My symptoms began in first grade, and progressed intermittently through my adolescence until I was finally diagnosed in my 20's with an auto-immune, infection-triggered neuropsychiatric disease (bipolar disorder, mostly, with phases of anorexia nervosa and mild to moderate tics). It was essentially an unknown syndrome at the time (outside the context of lupus and MS, that kind of thing), but my doctor was a very astute and determined researcher, and he was able to figure out my pattern by checking autoantibodies and the whole 9 yards. Interestingly, my illness practically fizzled away by the time I was 30, and vanished basically completely when I had my first child (as my doctor predicted it would). Fast forward many years, and I now have two sons, aged 5 and 2, who both have PANDAS/PITAND. The older one gets OCD & host of other things, and the younger one gets really bad vocal problems (e.g. stuttering, utterances), making him practically incomprehensible. They both tend to get sick around the same time, so we have lots of fun during those periods (ha). My whole family has been through the ringer with Strep this since February, so it's been a trying time. We seem to be having tremendous success with Intrakid and Omegabrites, however. I was skeptical, and the Intrakid is expensive, but my husband and I agree that so far it seems to be the "cheapest money we've ever spent." Even my 5-year-old's general social anxiety seems to basically have gone away, which has been a big surprise.

 

Professionally, I am a medical researcher (currently in the pharma company world, but previously in academia). I actually worked for 3 years on studies of familial associations between autoimmune and child psychiatric disorders (this was before all of the Swedo, etc. work in the 90's), before moving into the development of new drugs for autoimmune illnesses (a few of my "babies" are now on the market). I am new to the "field" of PANDAS, but I have some ideas about it and I'm thinking about moving back into the area research-wise. I'm actually in the conception stages of a more formal PANDAS-parent survey, but wanted to conduct a really informal poll here for any who want to share...and who would be interested in seeing the results. So here goes. I will share my thoughts after I have some results - don't want to bias anything up front!

 

1. In retrospect, at what age do you believe that your child's PANDAS/PITAND began? (not necessarily the same time it was diagnosed)

2. At what age did your child begin to speak?

3. At what age did your child begin to draw recognizable objects (e.g. faces, vehicles)?

4. Has your child had food allergies? To what?

5. Does your child have changes in bowel function during a PANDAS exacerbation?

6. Does your child have joint hypermobility, i.e. can he/she touch his/her thumb to the inside of his/her wrist (ok to pull on it to check, but not to the point of pain)?

7. Do you have joint hypermobility?

8. Are there any mental illnesses in family members (not necessarily immediate family)? What are they? Mother's side, or father's?

9. Are there any autoimmune diseases in either the child or family members? (e.g. asthma, rhematoid arthritis, thyroiditis, eczema, psoriasis, ulcerative colitis, lupus, etc.)

10. Does your child have trouble with the stitching in his/her socks? If so, is it worse during a PANDAS attack?

11a. Does your child have panic attacks?

11b. Is your child, or has he/she been, very separation anxious?

12. Does your child tend to "overreact" to medications, particularly SSRIs, thus requiring dose adjustments below the typical range?

13. Does anyone in your family have mitral valve prolapse?

14. Does your child have any particularly striking "gifts", talent-wise?

15. How would you describe your child's "regular" personality?

 

I hope that this isn't intrusive stuff for a "newbie" to be asking, but I imagine that others may also be interested in seeing the answers... I will answer for myself and my kids, too, but again, I don't want to bias anything by responding first!

 

Thanks!! And I look forward to getting to know you!

[momto2pandas]

Hi,

Just wanted to thank those who have responded to the survey and to give you just a tiny little preview of what I've been thinking about. There is a report in the medical literature about panic disorder, social anxiety disorder, and a "possible medical syndrome" linked to Chromosome 13 (below). (There are actually lots of reports about such complexes - there is also an association in some people with joint hypermobility [though it's possible this develops with duration of autoimmune activity], heart murmurs, other autoimmune disorders, etc.) I was actually working on this project for 3 years when I was at Columbia, read every single case report, and got to know the data very well. Based on it, I wrote up a grant proposal to perform a several-year study the connection between early-childhood anxiety disorders and autoimmunity - and was awarded a large multi-year grant and a faculty position at Columbia...but turned both down to accept an offer in the pharma industry (studying treatments for autoimmune disorders) that I felt I could not refuse. Now, I'm thinking of going back to this type of work. I believe that the syndrome described below and PANDAS are basically the same thing. There is actually a lot of literature that I believe converges and could give us a much better handle on PANDAS, and that I'd like to pull together into a "hypothesis paper" to publish. Dr. Weissman's group is focused on panic disorder because they have been doing a genetic study of it and so collected data from panic families, but the families are full of all of this other stuff (as she alludes to in the last sentence of the abstract), as well. The focus is just on panic because she started with panic patients. I did a project on the dataset that also looked at rheumatic fever (a strep illness), and let's just say that the data were very interesting, though I never published them. (This was all unfortunately happening during my lupus-like episode and writing was exceedingly difficult, so I didn't publish much of what I did during that time.) There is a lot more to tell but I'm not sure how much I'm at liberty to say...

 

Couple of other tidbits, though - I question the strep-molecular mimicry hypothesis for PANDAS. I'm not sure it's wrong, but based on some of my later work, I suspect that there are other possible explanations that could be more helpful in pointing to different treatment modalities (treatments that actually already exist on the market). I have to study this some more, though...

 

For those of you who don't know what interstitial cystitis is, it basically means you feel like you have to pee all the time. You can google it for more info. Mitral valve prolapse is often the cause of "heart murmur". Most people with MVP don't know that they have it.

 

Anyway, please keep it coming with the surveys - they are really helpful in stimulating ideas!

 

Thanks!

 

 

 

Panic disorder, social anxiety disorder, and a possible medical syndrome previously linked to chromosome 13.

Talati A, Ponniah K, Strug LJ, Hodge SE, Fyer AJ, Weissman MM.

Department of Psychiatry, College of Physicians and Surgeons, Mailman School of Public Health, Columbia University, New York, New York 10032, USA.

BACKGROUND: Several studies have identified increased medical problems among individuals with panic disorder (PD). We previously found that specific conditions--interstitial cystitis (IC), mitral valve prolapse (MVP), migraines, and thyroid disorders--aggregated non-randomly among panic families (we called this the "PD syndrome") and that families with and without the syndrome were genetically distinguishable on chromosome 13. We present data from a new case-control study that replicates and extends the syndrome phenotype clinically. METHODS: Probands with a definite diagnosis and family history of PD (n=219), social anxiety disorder (SAD; n=199), or both (n=173) and 102 control subjects with no personal/family history of anxiety were interviewed with the SADS-LA diagnostic instrument. Medical history was obtained via medical checklist and the family history screen; IC symptoms were assessed with criteria developed by the National Institute for Diabetes and Digestive and Kidney Diseases. Subjects and interviewers were unaware of the syndrome hypothesis; final best-estimate diagnoses were blind to syndrome data. RESULTS: Probands with PD or SAD, as compared with control subjects, were five or more times as likely to report IC symptoms and twice as likely to report MVP and migraines (other genitourinary and cardiovascular problems were not elevated). First-degree relatives of probands with PD or SAD were also at increased risk for IC, MVP, thyroid problems, and headaches, regardless of whether the proband reported the same condition. CONCLUSIONS: These findings are consistent with previous data supporting a PD syndrome and further suggest that this syndrome might include other anxiety disorders well.

[hopefulinsc]

I am a new member - as of today. My daughter developed classic OCD symptoms out of the blue. We had no idea what was going on. This goes back to June '08. I went on line and did some research based upon the behavior she was exhibiting. Since it was sudden and abrupt onset, that brought me to make inquiries into P.A.N.D.A.s . I then made an appointment with the pediatrician. She had shown very mild strep symptoms, which at the time, we made no connection to. She didn't run a fever, but she complained of a headache and stomachache, she had a sore throat for one day, she had loose bowels, as well; however, that I attributed to the heat. At any rate, once I discovered after doing research about P.A.N.D.A.s that this could be strep related, we took her to the doctor and told the very disinterested pediatrician our concerns and thoughts. They ran a quick strep test that came back negative, told us that she looks and is acting fine and that it's probably just a little virus. Wasn't the least bit concerned about what we had to say about the behavioral issues. Two days later, we were beside ourselves and went to the ER; what a big waste of time and money. The ER doctor was even less interested in what we had to say. That was on Sunday, on Tuesday, the doctor's office called us and told us that the culture strep test came back positive; although scant. Antibiotics were prescribed and she fully recovered from all symptoms. However, the symptoms started again around 9/1 or so; subsequent to being exposed to the 1st little boy that we think she got strep initially from, but she had also had a Hep A booster shot on 8/28. So, I don't know if the booster shot triggered anything or not. However, we brought her to the doctor on 9/1 for the complaint of a headache and stomachache. A strep test was done and it came back negative - both the quick test and the culture. However, we took her back again and indicated our concerns (we got the same pediatrician that initially didn't listen to any of our behavioral concerns). Again, the strep test came back negative - quick strep and culture. I communicated with the pediatrician and indicated that we went thru this all before and all the behavioral changes that we saw on the 1st episode completely went away after the antibiotics. She wouldn't do anything for me. Told me we needed to get in to see a neurologist and gave us an appointment that was 3 weeks away. She didn't give any interest about the fact that we felt this was P.A.N.D.A.s related or anything. I even dropped off paperwork for her to review; again, that was a waste of time. As a side note, when we first spoke with this same doctor, she told us that we should see their specialist who deals with OCD. He couldn't have cared less! He didn't even listen to what we had to say, nor did he make any file notes. I cannot believe that these people go into this profession - it's disgusting. Anyway, clearly, as you can see, I needed to get all this out to someone that would listen. I find your survey interesting and will defnitely participate. Our daughter is now in her 2nd round of OCD; however, so far, it is much milder than the first time around; but, I don't know if that' s because the 1st time she had strep in her system for a longer period of time and her body produced that many more antibodies....There is so much research to get done on this. I don't think I've ever been this stressed out in my entire life. Anyway, thanks for llistening (reading)... and I'll do your survey. Glad to hear that you are recovered..... By the way, does your son who has OCD have any memory issues? My daughter does and this is the most disconcerting. One example of this: She and her father went in the fronf of the house to give this little frog some water; they both then came in the house and I asked her "did you give the frog water"? she looked at her father and said, I don't know, daddy, did we give the frog water? I haven't read too much about any memory issues and was wondering if you have any issues with that with your son..

Hi everyone,

 

I am brand new to this forum. I am a 41-year old Mom, and I am a grown-up PANDAS. My symptoms began in first grade, and progressed intermittently through my adolescence until I was finally diagnosed in my 20's with an auto-immune, infection-triggered neuropsychiatric disease (bipolar disorder, mostly, with phases of anorexia nervosa and mild to moderate tics). It was essentially an unknown syndrome at the time (outside the context of lupus and MS, that kind of thing), but my doctor was a very astute and determined researcher, and he was able to figure out my pattern by checking autoantibodies and the whole 9 yards. Interestingly, my illness practically fizzled away by the time I was 30, and vanished basically completely when I had my first child (as my doctor predicted it would). Fast forward many years, and I now have two sons, aged 5 and 2, who both have PANDAS/PITAND. The older one gets OCD & host of other things, and the younger one gets really bad vocal problems (e.g. stuttering, utterances), making him practically incomprehensible. They both tend to get sick around the same time, so we have lots of fun during those periods (ha). My whole family has been through the ringer with Strep this since February, so it's been a trying time. We seem to be having tremendous success with Intrakid and Omegabrites, however. I was skeptical, and the Intrakid is expensive, but my husband and I agree that so far it seems to be the "cheapest money we've ever spent." Even my 5-year-old's general social anxiety seems to basically have gone away, which has been a big surprise.

 

Professionally, I am a medical researcher (currently in the pharma company world, but previously in academia). I actually worked for 3 years on studies of familial associations between autoimmune and child psychiatric disorders (this was before all of the Swedo, etc. work in the 90's), before moving into the development of new drugs for autoimmune illnesses (a few of my "babies" are now on the market). I am new to the "field" of PANDAS, but I have some ideas about it and I'm thinking about moving back into the area research-wise. I'm actually in the conception stages of a more formal PANDAS-parent survey, but wanted to conduct a really informal poll here for any who want to share...and who would be interested in seeing the results. So here goes. I will share my thoughts after I have some results - don't want to bias anything up front!

 

1. In retrospect, at what age do you believe that your child's PANDAS/PITAND began? (not necessarily the same time it was diagnosed) 5 - her current age. We didn't notice any signs prior to the recent episode in June '08

2. At what age did your child begin to speak? I believe on time; however, she was speaking to us nearly in full sentences at 20 months.

3. At what age did your child begin to draw recognizable objects (e.g. faces, vehicles)? I don't remember

4. Has your child had food allergies? To what? None that we are aware of

5. Does your child have changes in bowel function during a PANDAS exacerbation? Yes, I noticed this the first time around, but didn't make any connection. Note, that we have not "officially" been diagnosed as P.A.N.D.A.s, however, based upon everthing that I have read, I can't see how it could possibly be anything else.

6. Does your child have joint hypermobility, i.e. can he/she touch his/her thumb to the inside of his/her wrist (ok to pull on it to check, but not to the point of pain)? No

7. Do you have joint hypermobility?No, nor does my husband

8. Are there any mental illnesses in family members (not necessarily immediate family)? What are they? Mother's side, or father's? None we are aware of

9. Are there any autoimmune diseases in either the child or family members? (e.g. asthma, rhematoid arthritis, thyroiditis, eczema, psoriasis, ulcerative colitis, lupus, etc.) eczema, psoriasis, lupus, grandmother and aunt on paternal side take thyroid medication)

10. Does your child have trouble with the stitching in his/her socks? If so, is it worse during a PANDAS attack? No

11a. Does your child have panic attacks? No

11b. Is your child, or has he/she been, very separation anxious? No

12. Does your child tend to "overreact" to medications, particularly SSRIs, thus requiring dose adjustments below the typical range? She's never been on any medication; other than the antibiotics that she was given to treat the initial strep infection (or, what we believe to be the initial strep infection)

13. Does anyone in your family have mitral valve prolapse? yes, her aunt (paternal side)

14. Does your child have any particularly striking "gifts", talent-wise? Very intelligent, loves to read, draw, has always been interested in things that older children would find interesting - very ahead of her age in intelligence and behavior, unbelievable attention span for a child her age at present and when she was very little. People always comment on how smart she is. We read the Harry Potter books to her when she was 2 and she watched the movies and told us the difference between the book and movie (told us what was left out in the movies as compared to the book). She understood the books, completely understood that it wasn't real... Very interested in music as well.

15. How would you describe your child's "regular" personality? extremely enthusiastic, zest for life, zest for learning, cheerful, empathetic, bubbling personality

 

I hope that this isn't intrusive stuff for a "newbie" to be asking, but I imagine that others may also be interested in seeing the answers... I will answer for myself and my kids, too, but again, I don't want to bias anything by responding first!

 

Thanks!! And I look forward to getting to know you!

[EAMom]

Hi hopeful,

 

Welcome to the world of uninformed and uninterested pediatricians. Is the OCD specialist a psychiatrist (child psychiatrist?)...in our experience that was our most helpful resource as dd's psychiatrist (child psychiatrist, ocd specialist) had seen pandas before and believed in the diagnosis. I would go ahead and see the neurologist as well...keep in mind that neurologists are more experienced with the kids with tics and tourettes and not so much the OCD part of PANDAS. The pediatric neurologist we saw had only 1 other case of PANDAS besides our in the past 10 years...was she misdiagnosing the others or is it really that rare? Anyway, we didn't find her to be that helpful other than that she confirmed we had PANDAS (our pediatrician was still in denial) and told us that our using prophylactic antibiotics was reasonable (something else our ped couldn't deal with!).

 

Get throat cultures (72 hour if rapid is neg) on other household members to check for strep carriers who can reinfect your daughter. (Our 5 year old was a carrier when we figured out our 8 year old had PANDAS. The 8 year old had rare growth on the 48-72 hour culture. The 5 year old was positive on the rapid.)

 

Any tics (could be subtle throat sounds) or ADHD (maybe that's the memory thing?) with the pandas episode?

[hopefulinsc]

Hello:

 

Thanks for the advice on who to see. As far as your question is concerned about the tic - so far, we haven't seen that yet. But, she's definitely got the hyper thing going on (not excessive, fortunately, but it is a noticable difference in her personality). We're really hoping that what we're seeing so far this episode doesn't get any worse. We're probably into it now for 12 days. She's been on antibiotics for two of those days. We probably could have been on antibiotics sooner if the pediatrican was even remotedly interested in what we had to say. How does one go about finding a pediatrician that has working knowledge of PANDAS?

 

How do you go about finding out if you're a carrier? Do carrier's still come down with strep? Both my husband and I have both had strep throat in the past. The last time that our daughter came down with this, we were all tested and the quick test and culture came back negative for our son and the doctor didn't send my throat swab out or my husbands, which now we realize was a mistake.

 

Is it inevitable that she will develop a tic? Or, do some children only develop OCD symptoms.

 

Thanks so much for your help.

 

Hi hopeful,

 

Welcome to the world of uninformed and uninterested pediatricians. Is the OCD specialist a psychiatrist (child psychiatrist?)...in our experience that was our most helpful resource as dd's psychiatrist (child psychiatrist, ocd specialist) had seen pandas before and believed in the diagnosis. I would go ahead and see the neurologist as well...keep in mind that neurologists are more experienced with the kids with tics and tourettes and not so much the OCD part of PANDAS. The pediatric neurologist we saw had only 1 other case of PANDAS besides our in the past 10 years...was she misdiagnosing the others or is it really that rare? Anyway, we didn't find her to be that helpful other than that she confirmed we had PANDAS (our pediatrician was still in denial) and told us that our using prophylactic antibiotics was reasonable (something else our ped couldn't deal with!).

 

Get throat cultures (72 hour if rapid is neg) on other household members to check for strep carriers who can reinfect your daughter. (Our 5 year old was a carrier when we figured out our 8 year old had PANDAS. The 8 year old had rare growth on the 48-72 hour culture. The 5 year old was positive on the rapid.)

 

Any tics (could be subtle throat sounds) or ADHD (maybe that's the memory thing?) with the pandas episode?

[EAMom]

Carriers can be assymptomatic (no fever or sore throat) but they can pass a strep infection (with sore throat or fever) to others. A carrier will (should) culture positive on a throat culture (may need to do 48 hour culture if rapid is neg).

 

Ed Kaplan (WHO strep expert) probably would consider my PANDAS daughter to be a carrier...she initially had a fever for 3 days (which at the time we didn't know was strep...found out later a bunch of kids in her class had strep at the same time) and 2 mo. later she cultured positive for strep (rare growth).

 

My 5 year old was a carrier as well. She had no symptoms that we are aware of.

 

Carriers are less contagious than someone with active (red sore strep throat) pharyngitis. However, the more time you spend with a carrier (ie family member, or friend sleeping over) the more likely they will give you strep.

 

Most people (non-carriers) who get strep and don't go on antibiotics will clear the infection on their own after a couple of weeks. Carriers can culture positive for months (or years) on end unless they are cleared with antibiotics. It is more difficult to "clear" a carrier (may need stronger antibiotics like Azithromycin or Clindamycin) of a strep infection than a non-carrier. I suspect the carriers immune systems just aren't pitching in to help the antibiotics clear the strep.

 

Some children with PANDAS have only OCD. Some have only tics. Or you can have both (plus or minus ADHD).

 

Many people do phone consults with Dr. K. in chicago for PANDAS (or you could see him if you are in Chicago). Are you in South Carolina (guessing from your screenname?) If you can't find a knowledgeable pediatrician it would be helpful to at least have one with an open mind who is willing to listen/consider what you have to say.

 

Also, re memory...the only time my dd seemed to forget something she said/did something was 1x when she was psychotic (just before she was hospitalized for malnutrtion/anorexia nervosa) from the PANDAS. It was weird and disconcerting...really demonstrated to us that she "wasn't all there".

[EllTeeDee]

Carriers can be assymptomatic (no fever or sore throat) but they can pass a strep infection (with sore throat or fever) to others. A carrier will (should) culture positive on a throat culture (may need to do 48 hour culture if rapid is neg).

 

Ed Kaplan (WHO strep expert) probably would consider my PANDAS daughter to be a carrier...she initially had a fever for 3 days (which at the time we didn't know was strep...found out later a bunch of kids in her class had strep at the same time) and 2 mo. later she cultured positive for strep (rare growth).

 

My 5 year old was a carrier as well. She had no symptoms that we are aware of.

 

Carriers are less contagious than someone with active (red sore strep throat) pharyngitis. However, the more time you spend with a carrier (ie family member, or friend sleeping over) the more likely they will give you strep.

 

Most people (non-carriers) who get strep and don't go on antibiotics will clear the infection on their own after a couple of weeks. Carriers can culture positive for months (or years) on end unless they are cleared with antibiotics. It is more difficult to "clear" a carrier (may need stronger antibiotics like Azithromycin or Clindamycin) of a strep infection than a non-carrier. I suspect the carriers immune systems just aren't pitching in to help the antibiotics clear the strep.

 

Some children with PANDAS have only OCD. Some have only tics. Or you can have both (plus or minus ADHD).

 

Many people do phone consults with Dr. K. in chicago for PANDAS (or you could see him if you are in Chicago). Are you in South Carolina (guessing from your screenname?) If you can't find a knowledgeable pediatrician it would be helpful to at least have one with an open mind who is willing to listen/consider what you have to say.

 

Also, re memory...the only time my dd seemed to forget something she said/did something was 1x when she was psychotic (just before she was hospitalized for malnutrtion/anorexia nervosa) from the PANDAS. It was weird and disconcerting...really demonstrated to us that she "wasn't all there".

 

Who is Dr. K in Chicago???

Thanks.

[EAMom]

oops sorry...everyone refers to this guy as Dr. K. becaue his name is hard to spell...Dr. Kovacevic. Here's his webiste (which also has PANDAS info.)

http://www.webpediatrics.com/index.html

[Lacy]

1. In retrospect, at what age do you believe that your child's PANDAS/PITAND began? (not necessarily the same time it was diagnosed)

2. At what age did your child begin to speak?

3. At what age did your child begin to draw recognizable objects (e.g. faces, vehicles)?

4. Has your child had food allergies? To what?

5. Does your child have changes in bowel function during a PANDAS exacerbation?

6. Does your child have joint hypermobility, i.e. can he/she touch his/her thumb to the inside of his/her wrist (ok to pull on it to check, but not to the point of pain)?

7. Do you have joint hypermobility?

8. Are there any mental illnesses in family members (not necessarily immediate family)? What are they? Mother's side, or father's?

9. Are there any autoimmune diseases in either the child or family members? (e.g. asthma, rhematoid arthritis, thyroiditis, eczema, psoriasis, ulcerative colitis, lupus, etc.)

10. Does your child have trouble with the stitching in his/her socks? If so, is it worse during a PANDAS attack?

11a. Does your child have panic attacks?

11b. Is your child, or has he/she been, very separation anxious?

12. Does your child tend to "overreact" to medications, particularly SSRIs, thus requiring dose adjustments below the typical range?

13. Does anyone in your family have mitral valve prolapse?

14. Does your child have any particularly striking "gifts", talent-wise?

15. How would you describe your child's "regular" personality?

 

I will do my best to answer your questions. I am a newbie to this board but not with PANDAS. Our 7yo DD (2nd grader) has been dealing with PANDAS and it's horrible symptoms now since she was a preschooler. Here we go...

 

1. In retrospect, at what age do you believe that your child's PANDAS/PITAND began? (not necessarily the same time it was diagnosed)

Sabrina was in pre-school when we started noticing that she was coming home with difficult daughter reports. She had just started Kindergarten (had just turned 5 y.o.) when we took her to the pediatrician who recommended a strep test - which came back positive. Sabrina had no other symptoms of strep throat so we were shocked when we got the results. She had not yet been diagnosed as PANDAS.

 

2. At what age did your child begin to speak?

I don't recall the exact month, but she was on target with where she was supposed to be. Once she started talking, she never seemed to stop!

 

3. At what age did your child begin to draw recognizable objects (e.g. faces, vehicles)?

She really started drawing well in daycare/preschool. I'm going to guess she was 2.5 y.o. but maybe sooner.

 

4. Has your child had food allergies? To what?

Not that we're aware of. However, Sabrina does have an allergy to penicillan.

 

5. Does your child have changes in bowel function during a PANDAS exacerbation?

Not that I've noticed that I can't chalk up to her antibiotics when she's on them. I will note that she remained constipated most of her 2nd year. At this time of her life we didn't notice any PANDAS symptoms.

 

6. Does your child have joint hypermobility, i.e. can he/she touch his/her thumb to the inside of his/her wrist (ok to pull on it to check, but not to the point of pain)?

I haven't tested this.

 

7. Do you have joint hypermobility?

As a matter of fact, I do. I can bend my hand down fairly far without pain. It frustrates my husband to no end when he practices his law enforcement tactical movements training.

 

8. Are there any mental illnesses in family members (not necessarily immediate family)? What are they? Mother's side, or father's?

Wow, where to begin...

Me (Mom): Anxiety issues - have been placed on 20mg Lexapro and it seems to be working.

My Mother: Anxiety, Depression, Weight Loss, Alcoholism, and for the longest time we suspected bi-pol.

My Mother's Grandmother: Demensia (sp?)

My Father: Alcoholism

My DH's Parents: Well, they're just plain crazy.

 

9. Are there any autoimmune diseases in either the child or family members? (e.g. asthma, rhematoid arthritis, thyroiditis, eczema, psoriasis, ulcerative colitis, lupus, etc.)

DH: Eczema, IBS

My Father & His Father: Rhematoid Arthritis

My Mother's Brother: Had to take antibiotics for a year and everytime before he goes to the dentist... is that rheumatic fever?

DH's Mother's Dad: Passed of Rheumatic Fever

 

10. Does your child have trouble with the stitching in his/her socks? If so, is it worse during a PANDAS attack?

Not that I've ever noticed.

 

11a. Does your child have panic attacks?

No, but she gets very stuck on certain discussions - for instance, we'll pass a graveyard and she'll start getting upset to the point of tears about the passing of her Granddad when she was only 2y.o.

 

11b. Is your child, or has he/she been, very separation anxious?

Nothing that didn't seem normal.

 

12. Does your child tend to "overreact" to medications, particularly SSRIs, thus requiring dose adjustments below the typical range?

We are currently not willing to place Sabrina on any SSRIs. She was treated with an 9 month course of antibiotics (Cephlaxen - sp?)

 

13. Does anyone in your family have mitral valve prolapse?

Not that I know of.

 

14. Does your child have any particularly striking "gifts", talent-wise?

She is EXTREMELY artistic and creative.

 

15. How would you describe your child's "regular" personality?

When Sabrina is having a "normal" day she's extremely sweet. She is polite, and loves to play with the kids. She has always been headstrong and loves to lead the group of kids. She's quick to tattle - like any other kid. She really strives to get positive attention from adults.

 

If it helps, I'm happy to answer further questions. I'm most accessible through e-mail.

 

Thanks!

[ajcire]

1. In retrospect, at what age do you believe that your child's PANDAS/PITAND began? (not necessarily the same time it was diagnosed) - In hindsight I first took my ds to the dr. about constant eye blinking at the age of 2. I have not yet gotten a diagnosis yet of pandas but do believe that it is and am in process of getting it figured out.

 

2. At what age did your child begin to speak?- He signed practically in sentences by 11 months but he didn't really begin to speak until almost 2.. had a few words from 18 months until then.

 

3. At what age did your child begin to draw recognizable objects (e.g. faces, vehicles)? - He started drawing faces by 2. He was obsessive about wanting us to draw them when he was around 18 months.

 

4. Has your child had food allergies? To what? not that we know of

 

5. Does your child have changes in bowel function during a PANDAS exacerbation? No bowel issues... seems to have more frequent urination though.

 

6. Does your child have joint hypermobility, i.e. can he/she touch his/her thumb to the inside of his/her wrist (ok to pull on it to check, but not to the point of pain)? No

 

7. Do you have joint hypermobility? No

 

8. Are there any mental illnesses in family members (not necessarily immediate family)? What are they? Mother's side, or father's? None that I know of

 

9. Are there any autoimmune diseases in either the child or family members? (e.g. asthma, rhematoid arthritis, thyroiditis, eczema, psoriasis, ulcerative colitis, lupus, etc.) No

 

10. Does your child have trouble with the stitching in his/her socks? If so, is it worse during a PANDAS attack? No

 

11a. Does your child have panic attacks? No

11b. Is your child, or has he/she been, very separation anxious? Yes at bedtime

 

12. Does your child tend to "overreact" to medications, particularly SSRIs, thus requiring dose adjustments below the typical range? I don't know what this means so I will have to say no as he has not had any reactions to meds.

 

13. Does anyone in your family have mitral valve prolapse? Yes, I do.

 

14. Does your child have any particularly striking "gifts", talent-wise? He is extremely bright, has an incredible memory, excells in reading and math.

 

15. How would you describe your child's "regular" personality? He is on the more serious side, has always come off as mature. He is a rule follower and likes routine. He is quick to point out if someone is not following the rules or if you are not on schedule. He pays a lot of attention to time. I don't even know now what is regular personality and what is not him.

[ajcire]

Ok, so I am noticing some similar personality traits among some of our children. I noticed a lot of people describe their child as more mature, bit more serious, very bright... So now I am feeling a bit sad thinking, is this NOT really my son but more a result of whatever is going on medically. Is it that these children are more prone to it or are these personality traits the result of it? My son was however the way I described from what seemed to be from birth... So which came first, the illness or my son's personality ?

[Lacy]

Ok, so I am noticing some similar personality traits among some of our children. I noticed a lot of people describe their child as more mature, bit more serious, very bright... So now I am feeling a bit sad thinking, is this NOT really my son but more a result of whatever is going on medically. Is it that these children are more prone to it or are these personality traits the result of it? My son was however the way I described from what seemed to be from birth... So which came first, the illness or my son's personality ?

 

My DD is all the 'good' things when she's not 'fitting' or raging. I think PANDAS only accentuates the negative behaviors. At least that's what I'd like to think.