PANDAS survey - informal

[momto2pandas]

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!

[P_Mom]

Hi...I'll do my best....two PANDAS boys....now almost 6 and 9..these are answered respectively...(older son, milder)

 

1. 3 (maybe younger) and 5

2. Both spoke extremely well at age 2

3. 4 and 3

4. food sensitivities (salycilates), no food issues

5. occasional constipation, no problems that I am aware of (he is older so, well, you know how that goes)

6. yes (wow, never knew that, he does it so easily), no

7. no

8. yes, anxiety, ocd tendencies, bi-polar..... both sides

9. yes, excema, seasonal allergies, neuropathy (perhaps more)

10. no and no

11a. no and no

11b. yes and somewhat at night occasionally

12. not aware..children never put on meds

13. no, not aware of any

14. very intelligent, extremely verbal young, self-taught to read at 4, good singer , video game/baseball (throwing)..........

very intelligent, exceptional at math, extremely verbal young, exceptional at sports

15. outgoing, talkative, silly, interested in everything, energetic, stubborn, sensitive, kind......

laid back, easy going and easy to get along with, kind

 

 

It is VERY interesting to finally be able to talk with a grown-up PANDAS...please stay in touch...I am sure we all will have may questions for you! A couple I do have now...did you also have strep this past winter? Did your symptoms flair, or, do they still flair with illness/strep? Why did they expect your symptoms to dissappear with having a child? Do your children take antibiotics? How many episodes have they had?

 

Thanks!!

 

Kelly

[michele]

1. In retrospect, at what age do you believe that your child's PANDAS/PITAND began? (not necessarily the same time it was diagnosed) One year and one month. He is now 6.

2. At what age did your child begin to speak? 18 months talked early

3. At what age did your child begin to draw recognizable objects (e.g. faces, vehicles)? still has trouble with this at 6 makes a circle and spider looking arms and legs coming off of it for a person poor fine motor skills

4. Has your child had food allergies? To what? hyper reaction to red dyes, high fructose corn syrup, high sugar content

5. Does your child have changes in bowel function during a PANDAS exacerbation? yes, runny and soft

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)? not sure but poor motor control

7. Do you have joint hypermobility? yes I do

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

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.)yes I have poly arthritis and fibromyalgia, uncle RA, great grandma rheumatoid arthritis

10. Does your child have trouble with the stitching in his/her socks? yes very picky about strings If so, is it worse during a PANDAS attack? yes everything is more difficult during episode

11a. Does your child have panic attacks? worries alot afraid of alotvery careful won't take risks

11b. Is your child, or has he/she been, very separation anxious? at times during pandas episodes especially, likes to be at home

12. Does your child tend to "overreact" to medications, particularly SSRIs, thus requiring dose adjustments below the typical range? He has done well on Abilify but we have had to adjust the doses keep moving up from 2 mg to 5 mg

13. Does anyone in your family have mitral valve prolapse? not sure mom has a heart murmur

14. Does your child have any particularly striking "gifts", talent-wise? good memory of the past and exact dates things happened on like movie release, loves to sing and can memorize and perform songs just like he saw them on a movie, good entertainer

15. How would you describe your child's "regular" personality? very talkative outgoing and obsesses over fixed likes, funny, demanding, one track mind gets stuck on ideas, sweet and loving to me, quick to anger, highly sensitive to touch and pain, fearful and worries about getting hurt, emotional gets upset easliy

 

I hope you will share more details of your PANDAS struggles. Thanks for the info on how you treat your kids I will look them up. Do you think this is more common in boys? If so why? What school accomodations do you think are good for PANDAS young children? My son is 6. My arthritis was better while pregnant also but flaired afterwards.

 

Michele

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]

I will add more later when I'm not in the middle of cooking dinner, but I will start to answer a few of the questions now. Yes, I had Strep this winter when everyone else in my family had it - 3 times. And I had it again last month (like I said, a fun year). At this stage of my life, though, this is what happens: I get seriously depressed and moderately anxious, for about one day. No OCD stuff at all, but a really bad day - I can't focus on anything, I feel hopeless, etc., and then it's over. I get very, very mild ticks, more like "twitchy" - nothing that anyone would remark on. I probably just look like I'm a bit uncomfortable in my clothes. I am, in fact, uncomfortable in my clothes - my skin gets very sensitive and any roughness or stitching bothers me, so I have to wear very soft sweats (I'm not usually this way at all). Sometimes I feel kind of tired and mentally cloudy for several days (but of course, I'm sick, so that's to be expected...). But really, the whole thing is only minimally disruptive. The depression almost always happens before I have symptoms of a sore throat or any other physical symptoms, but I know from the depression that I will have those symptoms within the next 48 hours, and I'm right 100% of the time. The saving grace about the whole thing is that I know what's happening, my husband knows what's happening, etc., so I just lay low (and my husband hunkers down) during the bad day or two and then it's over. I'll tell you more about my childhood history when I have a bit more time later, but let's just say that then, it was really, really bad. I spent two years in hospitals as a kid, etc. Millions of dollars (literally) in treatments that didn't really work. Then around at age 19, much of it just "went away", practically overnight. Around age 25 I had another brief bad spell, but since around 30 there has been very little to deal with, and after I started having kids at 35, even that went away...except for the very occasional day here or there, as described above.

 

This is the "short" version, of course!

 

More later.

[dut]

1. In retrospect, at what age do you believe that your child's PANDAS/PITAND began? 4 possibly 3

2. At what age did your child begin to speak? very first words 9 months but talking properly so others understand by 18 months

3. At what age did your child begin to draw recognizable objects (e.g. faces, vehicles)? 2 1/2

4. Has your child had food allergies? To what? milk (gone now) and cashews and pistachios

5. Does your child have changes in bowel function during a PANDAS exacerbation? during 1 of them yes.. we believe she had perianal strep then too

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? no

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.) thyroiditis, chrone's (sp) rheumatoid artyhritis

10. Does your child have trouble with the stitching in his/her socks? If so, is it worse during a PANDAS attack? yes, socks since 3 yrs old and during her 1 really bad episode would only wear maybe 2 tops and 2 trousers cos of feel

11a. Does your child have panic attacks? no

11b. Is your child, or has he/she been, very separation anxious? only somewhat during the bad episode

12. Does your child tend to "overreact" to medications, particularly SSRIs, thus requiring dose adjustments below the typical range? not been on meds so don't know

13. Does anyone in your family have mitral valve prolapse? no

14. Does your child have any particularly striking "gifts", talent-wise? verbal early on with v good vocab

15. How would you describe your child's "regular" personality? demanding as a baby sleep wise and attention, now - conscientious, kind, stubborn, funny sometimes testy , aren't we all tho :-)

 

and can i just say how relieving it is to read an adult's story of PANDAS and that it isn't some sort of life sentence.. thank you.

[momto2pandas]

Hi,

 

To answer your other questions, I'm not sure why my doctor thought my symtpoms would end when I had a child. He was an Anorexia Nervosa specialist before anyone had ever heard of the disease, and he had treated several hundred by the time he saw me. I was "atypical" in a whole bunch of ways - AN was kind of secondary, I didn't have distorted views of my body, I didn't have the typical psychological or family profile, etc. He told me that he had seen a bunch of others "like me" over the course of his career, and for all of them their whole syndromes basically disappeared after childbearing. I don't think he had a hypothesis for why; it was just his empiral prediction. He made that prediction 20 years before I ever had a child, but I remembered it all of that time, and he was right.

 

My own kids are not on antibiotics. I wanted to treat them with what worked best for me, and that seems to be very effective, so we haven't had need for chronic antibiotics....at least yet...but I will do it if I ever need to. My 5-year-old has had many fairly mild episodes (eye tic, emotional volatility, extreme "fussiness"), but it took a really bad one this summer to shock me completely out of denial about it - I didn't want to believe that he was "like me" in that way. When I took him to the ped during that episode, he was diagnosed right away with PANDAS.

 

My 2-year-old is less obvious - we've just noticed his pattern in the last few months, and it's not nearly as dramatic. I'm kind of hoping that he'll end up with one of those cases that's minimal enough that it would have flown under the radar completely were it not for his brother's diagnosis. Of course, he is still so young, so who knows.

 

 

 

Hi...I'll do my best....two PANDAS boys....now almost 6 and 9..these are answered respectively...(older son, milder)

 

1. 3 (maybe younger) and 5

2. Both spoke extremely well at age 2

3. 4 and 3

4. food sensitivities (salycilates), no food issues

5. occasional constipation, no problems that I am aware of (he is older so, well, you know how that goes)

6. yes (wow, never knew that, he does it so easily), no

7. no

8. yes, anxiety, ocd tendencies, bi-polar..... both sides

9. yes, excema, seasonal allergies, neuropathy (perhaps more)

10. no and no

11a. no and no

11b. yes and somewhat at night occasionally

12. not aware..children never put on meds

13. no, not aware of any

14. very intelligent, extremely verbal young, self-taught to read at 4, good singer , video game/baseball (throwing)..........

very intelligent, exceptional at math, extremely verbal young, exceptional at sports

15. outgoing, talkative, silly, interested in everything, energetic, stubborn, sensitive, kind......

laid back, easy going and easy to get along with, kind

 

 

It is VERY interesting to finally be able to talk with a grown-up PANDAS...please stay in touch...I am sure we all will have may questions for you! A couple I do have now...did you also have strep this past winter? Did your symptoms flair, or, do they still flair with illness/strep? Why did they expect your symptoms to dissappear with having a child? Do your children take antibiotics? How many episodes have they had?

 

Thanks!!

 

Kelly

[momto2pandas]

Hi,

 

Wanted to answer your questions, as well. I don't know if PANDAS is more common in boys. Generally, autoimmune diseases are more common in women, but among kids, I wouldn't be surprised if boys are more likely to express the kinds of symptoms that lead to diagnosis, i.e. tics, acting out, hyperactivity, etc. (generally boys do express these traits more in childhood mental illness). Girls are generally more likely to experience depression, but depression while "sick", in the absence of other symptoms, probably doesn't look like too much in a young child - might just look like being under the weather!

 

I also can't really say anything about school accommodations. I was never diagnosed as having an auto-immune problem during my school years; that connection wasn't made until later. Thus there wasn't any fear-of-infection issue. So, I kept going to school for as long as I could, and the truth is that I found school so easy that even with my impairments it wasn't a problem...until high school. At that point, I did need special accommodations, but those basically involved testing out of almost all of high school, since I was way ahead of the game academically still at that point. (Yes, I was one of those strange kids who got into Harvard before she needed to wear a bra....) One thing I can say is that I learned good school habits, that still serve me very well. From a quite early age, for example, I always did my homework right away when I got it - never put it off. I did this out of fear more than diligence - I didn't know how I was going to be feeling in 3 weeks when the report was due, so I did it NOW just in case LATER was a problem. Sad but true. This became my strategy all the way until my symptoms basically stopped, in school, in work, etc. Sometimes an episode caught up with me before I could get things done anyway, of course, and those times were very difficult...but "make hay while the sun shines" was an essential part of my coping strategy.

 

As for your arthritis flaring post-partum, I think that most auto-immune diseases can do this. During my first pregnancy (by which time my auto-immune pattern had been diagnosed), my doctors predicted that I had something like a 90% chance of having a huge psychiatric flare post-partum. Luckily, my doctor was one of the Harvard docs who was working on the Omega-3 story, and she put me on high doses of that...and I had no problem post-partum, whatsoever. And no problem after my miscarriage 18 months later, and no problem after I had my second child. The Omegabrites have been so good for me that I give them to my kids, as well (child formulation). Notably, the one really bad episode that my 5-year old had happened at the end of a 2-week vacation, during which time he was not taking the oils (the kids' version needs to be refrigerated, and we didn't want to bother with it on the road). Coincidence or no, I don't know.

 

By the way, I have nothing to do with the Omegabrite company or anything like that; I just swear by their products. The formulation they use is the exact same one that has been used in the clinical studies of the effects of Omega-3's on psychiatric conditions that have been published in the peer-reviewed literature, so in my opinion it has been "tweaked" just right.

 

 

1. In retrospect, at what age do you believe that your child's PANDAS/PITAND began? (not necessarily the same time it was diagnosed) One year and one month. He is now 6.

2. At what age did your child begin to speak? 18 months talked early

3. At what age did your child begin to draw recognizable objects (e.g. faces, vehicles)? still has trouble with this at 6 makes a circle and spider looking arms and legs coming off of it for a person poor fine motor skills

4. Has your child had food allergies? To what? hyper reaction to red dyes, high fructose corn syrup, high sugar content

5. Does your child have changes in bowel function during a PANDAS exacerbation? yes, runny and soft

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)? not sure but poor motor control

7. Do you have joint hypermobility? yes I do

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

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.)yes I have poly arthritis and fibromyalgia, uncle RA, great grandma rheumatoid arthritis

10. Does your child have trouble with the stitching in his/her socks? yes very picky about strings If so, is it worse during a PANDAS attack? yes everything is more difficult during episode

11a. Does your child have panic attacks? worries alot afraid of alotvery careful won't take risks

11b. Is your child, or has he/she been, very separation anxious? at times during pandas episodes especially, likes to be at home

12. Does your child tend to "overreact" to medications, particularly SSRIs, thus requiring dose adjustments below the typical range? He has done well on Abilify but we have had to adjust the doses keep moving up from 2 mg to 5 mg

13. Does anyone in your family have mitral valve prolapse? not sure mom has a heart murmur

14. Does your child have any particularly striking "gifts", talent-wise? good memory of the past and exact dates things happened on like movie release, loves to sing and can memorize and perform songs just like he saw them on a movie, good entertainer

15. How would you describe your child's "regular" personality? very talkative outgoing and obsesses over fixed likes, funny, demanding, one track mind gets stuck on ideas, sweet and loving to me, quick to anger, highly sensitive to touch and pain, fearful and worries about getting hurt, emotional gets upset easliy

 

I hope you will share more details of your PANDAS struggles. Thanks for the info on how you treat your kids I will look them up. Do you think this is more common in boys? If so why? What school accomodations do you think are good for PANDAS young children? My son is 6. My arthritis was better while pregnant also but flaired afterwards.

 

Michele

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!

[Indigo]

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

Age 22 months

 

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

10 months

 

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

Age 5

 

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

gluten intolerance

 

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

Haven't thought about that, but perhaps diarrhea....

 

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?

Possible Autism-father in law

Depression

 

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 and Celiac's

 

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?

Yes

 

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

Hugely so

 

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

Not sure about SSRI's, but dd has been on many medications with very bad reactions particularly ADHD meds

 

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

No

 

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

Great memory

 

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

I'm just starting to know my child's regular personality now that she is on antibiotics. It's HAPPY, sweet, helpful, social, a bit quiet but very very friendly.

[EAMom]

Hi Mom2Pandas...have you every been on birth control pills? (Don't they work by making your body think it's a "little bit pregnant?"....I know the various types have different formulations...I'm thinking about progesterone in particular.)...if you have, did that have any influence on your PANDAS symptoms?

[P_Mom]

Mom2pandas,

What do you have your kids on, if anything, besides the Omega's and Intrakid, for their PANDAS?

What treatments have you had for your PANDAS? Were you ever on antibiotics?

 

Kelly

[momto2pandas]

Yes, I've been on a bunch of them. Some of them made me much worse mood-wise in general - I think those were the earlier, high-dose cycling ones. Yasmin, on the other hand, was very helpful in general and evened out my PMS (which used to be very bad) a lot. I don't remember whether it helped with the infection-triggered thing per se, because that wasn't happening too badly at that point anyway, but it helped with the PMS that I used to get very, very badly during my worst "PANDAS" years. At some point in college I was actually treated with progesterone outside of the context of birth control, and I seem to remember that as a quite peaceful time symptom-wise, but I can't really remember details, sorry!

 

 

Hi Mom2Pandas...have you every been on birth control pills? (Don't they work by making your body think it's a "little bit pregnant?"....I know the various types have different formulations...I'm thinking about progesterone in particular.)...if you have, did that have any influence on your PANDAS symptoms?

[momto2pandas]

As maintenance I've only had my kids on Omegabrites and Intrakid. They are not badly affected in general compared to some of the stories I've seen on here, so that's all we've needed so far. When they've "gotten sick" or when the rest of the family has gotten sick and they've tested positive for Strep without actually appearing sick, they've gone on Augmentin, in the past. That seemed to work pretty well. We've had trouble with amoxicillin because the formulations we've gotten usually come with Red Dye 40, to which my son is sensitive (as are many PANDAS kids, from what I've read). Red 40 gives him behavioral problems in and of itself, so that just confused everything.

 

As for myself, I've had a complicated antibiotic history. Recall that my condition wasn't diagnosed as autoimmune until my 20's, so I was never "treated" with antibiotics as a kid, and as an adult, my condition eventually became mild enough that I didn't need anything prophylatically. In my 20's though, I think I was pretty much always on antibiotics, at least or a while. I know that amoxicillin did not help, but I can't remember what did. It was actually my reaction to minocycline (which I was taking for something else, not PANDAS) that helped lead to my diagnosis. I developed a lupus sydnrome in response to the cyclines, with psychiatric symptoms (among others), and all kinds of autoantibodies. The psych symptoms I got "looked like" the ones I had had before, but this time were clearly associated with an auto-immune reaction, and once we saw that so clearly, it was easy to see that other episodes of my symptoms also followed an auto-immune pattern, but in these cases the pattern was generally set off by infections rather than by allergens. I had medical records going back forever, so that helped.

 

Sorry this probably isn't as helpful as you had hoped!

 

 

 

 

Mom2pandas,

What do you have your kids on, if anything, besides the Omega's and Intrakid, for their PANDAS?

What treatments have you had for your PANDAS? Were you ever on antibiotics?

 

Kelly

[momto2pandas]

One other potentially important thing I forgot to mention - I have my 5-year-old on these little "Immune C" gummy bears that we get from Target or Rite Aid. (My 2-y.o. is not on them because the dosing is adjusted or age 4 and up only.) In addition to C, they have zinc and echinacea, and maybe some other herbs. I don't know if it's the bears or just luck, but he has been sick MUCH less than his peers since we started using them over a year ago. Mind you, he can still get Strep (and did), but he very, very rarely actually "gets sick", and I think that's helpful. When he got that really bad illness (fever, etc.) & PANDAS episode after our 2-week vacation, we hadn't been giving him either the bears or the Omegabrites for weeks. Who knows if stopping all of his supplements had anything to do with the episode, but I can tell you that next time we take a vacation, we are going to bring everything along, even if that means taking a little cooler.

 

 

 

As maintenance I've only had my kids on Omegabrites and Intrakid. They are not badly affected in general compared to some of the stories I've seen on here, so that's all we've needed so far. When they've "gotten sick" or when the rest of the family has gotten sick and they've tested positive for Strep without actually appearing sick, they've gone on Augmentin, in the past. That seemed to work pretty well. We've had trouble with amoxicillin because the formulations we've gotten usually come with Red Dye 40, to which my son is sensitive (as are many PANDAS kids, from what I've read). Red 40 gives him behavioral problems in and of itself, so that just confused everything.

 

As for myself, I've had a complicated antibiotic history. Recall that my condition wasn't diagnosed as autoimmune until my 20's, so I was never "treated" with antibiotics as a kid, and as an adult, my condition eventually became mild enough that I didn't need anything prophylatically. In my 20's though, I think I was pretty much always on antibiotics, at least or a while. I know that amoxicillin did not help, but I can't remember what did. It was actually my reaction to minocycline (which I was taking for something else, not PANDAS) that helped lead to my diagnosis. I developed a lupus sydnrome in response to the cyclines, with psychiatric symptoms (among others), and all kinds of autoantibodies. The psych symptoms I got "looked like" the ones I had had before, but this time were clearly associated with an auto-immune reaction, and once we saw that so clearly, it was easy to see that other episodes of my symptoms also followed an auto-immune pattern, but in these cases the pattern was generally set off by infections rather than by allergens. I had medical records going back forever, so that helped.

 

Sorry this probably isn't as helpful as you had hoped!

 

 

 

 

Mom2pandas,

What do you have your kids on, if anything, besides the Omega's and Intrakid, for their PANDAS?

What treatments have you had for your PANDAS? Were you ever on antibiotics?

 

Kelly

[EllTeeDee]

How wonderful to have this forum to discuss PANDAS. My 11 year old son has the condition. Here are my answers to your informal survey:

 

1. In retrospect, at what age do you believe that your child's PANDAS/PITAND began? (not necessarily the same time it was diagnosed) AT 3 YEARS OLD

 

2. At what age did your child begin to speak? AROUND 2 YEARS OLD (BUT HE ALSO HAS A HEARING DEFICIT IN 1 EAR)

 

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? NONE DIAGNOSED

 

5. Does your child have changes in bowel function during a PANDAS exacerbation? INTERESTING QUESTION, I HADN'T MADE THE CONNECTION BUT I THINK HE DOES

 

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? BIPOLAR, DEPRESSION, ALCOHOLISM, OCD, ADHD (OUR FAMILY IS A CORNICOPIA ON BOTH SIDES)

 

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.) YES, ASTHMA, ECZEMA

 

10. Does your child have trouble with the stitching in his/her socks? If so, is it worse during a PANDAS attack? USED TO BE A BIG PROBLEM BUT NOT ANYMORE

 

11a. Does your child have panic attacks? NOT REALLY, JUST VERY FEARFUL

 

11b. Is your child, or has he/she been, very separation anxious? NOT SO MUCH ANYMORE

 

12. Does your child tend to "overreact" to medications, particularly SSRIs, thus requiring dose adjustments below the typical range? NO

 

13. Does anyone in your family have mitral valve prolapse? NOT THAT I'M AWARE.

 

14. Does your child have any particularly striking "gifts", talent-wise? HE IS A FAIRLY GIFTED ACTOR

 

15. How would you describe your child's "regular" personality? HE IS A VERY HAPPY GO LUCKY KID

[EllTeeDee]

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