PANDAS survey - informal

[Lacy]

What school accomodations do you think are good for PANDAS young children? My son is 6.

 

Michele,

 

At first the teachers and administration at my DDs school didn't understand at all. It was infuriating because they kicked her off the bus and put her on the smaller special needs bus (after I fought to keep her on school transportation). They also kept putting her in out of school and in school suspension for behaviors that we didn't understand at the time.

 

With the cooperation of the school's special needs teacher, guidance counselor and school child psychologist we started up Child Studies meetings. With those I mentioned along with our DD's teacher, asst. principal and principal we sat and discussed what was wrong with DD and how could we handle her outbursts more constructively and effectively for everyone.

 

With the exception of the new [enter expletive here] asst. principal, everyone is doing everything they can to keep control of the situation and our DD.

 

Unfortunately with a flare up of DD's symptoms we're going to have to restart the Child Studies meetings because the new asst. principal is not meeting eye to eye with us or our DD.

 

Good luck!

[momto2pandas]

Hi everyone.

 

I've been so busy with work lately I've failed to look at this board for several weeks. I know that I'm behind on answering some people's questions - I should be catching up in the next couple of days. Thanks again for the surveys. As for intelligence, etc., there is a known trend for kids with autoimmune type things to have higher than normal intelligence and creativity - I don't know the actual data, but 2 different allergists have told me this. Seems to be borne out by the information we're sharing with each other, as well.

 

Well wishes to all!

[TiredMom]

Hi everyone.

 

I've been so busy with work lately I've failed to look at this board for several weeks. I know that I'm behind on answering some people's questions - I should be catching up in the next couple of days. Thanks again for the surveys. As for intelligence, etc., there is a known trend for kids with autoimmune type things to have higher than normal intelligence and creativity - I don't know the actual data, but 2 different allergists have told me this. Seems to be borne out by the information we're sharing with each other, as well.

 

Well wishes to all!

 

Thanks so much for your input. You have certainly have a unique perspective that we are all interested in. I am very much looking forward to hearing from you soon. Thanks again.

[lss]

EAMOM

 

So glad I found your post. I was begining to wonder if my son had something else besides Pandas. My son has only vocal tics, and when he gets really sick with pneumonia then he gets the motor tics, which I have only seen once in March. He does have other symptoms, like not wanting to sleep alone at night, some raging, but not too often, dilated eyes. Can you tell me if others have the symptoms, even though they don't actually have strep or sick, can they have the symptoms by just being exposed to viral or bactirial infections? He was recently put on Tenex which is for high blood pressure, but works on tics and also the ped doctor put him on zithromax, but I didn't really see any improvement.

 

Lss

 

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".

[pmoreno]

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!

 

 

1. 7.5

2. age 2 but delayed speech - has had speech tx since then

3. 3

4. no

5. no

6. yes

7. yes

8. not aware of any

9. not aware of any

10. yes, not necessarily different during PANDAS, (actually not so much of a big deal the last few years)

11. no panic attacks

separation anxiety only when wakes up in middle of night & can't go back to sleep

12. yes

13. no

14. extremely gifted artist

15. funny, giggly, happy, caring, shy in new situations, occupies her own time well, artistic, creative, imaginative