[PANDAS Anorexia]

Thanks for sharing! I will keep fighting too for my child just like you did! I can't believe the doctors at Children's would not want to follow up so they could learn more themselves. Truly disgraceful!!!

 

Good luck and I hope her prognosis continues to be a good one!

 

A former lurker on this very helpful website, I felt it was time to tell my daughter's story. I have never been much of an online message board poster, but the thought of others similar to my daughter out there being wrongly diagnosed is haunting. I am one of the fortunate ones whose child is now back to her old self (with a few very minor differences). Her main issue (among others) was anorexia. It came on suddenly, without any warning whatsoever, at the age of 10. Almost exactly 12 months later it disappeared almost (but not quite) as quickly as it had started. I will try to not to make it too long:

 

In the summer of 2008 I remember the day I picked my daughter up from camp. She had been there a week. She looked healthy and was happy. (I went back 100 times and looked at pictures from that day as they were the last pictures for a long while with no signs of anorexia. At first I kept trying to figure out what would have triggered this). The next thing I know, it is about a week and a half later and I noticed she all of the sudden looked thinner. She was a competitive gymnast at the time, always fit and healthy, but a muscular build. It alarmed me enough to go weigh her. I knew she usually weighed 65 pounds....She weighed 60 and I was obviously very concerned, but had no idea. I know it sounds crazy that I did not notice she wasn't eating, but it was summer. I have 5 children, all great eaters, so I just did not notice. I told her that we really need to make sure she is eating right and put some weight back on. As luck would have it, my then 12 year old son had an emergency appendectomy which took most of my attention for a few days. Within a week she was at 58 pounds and I knew there was a big problem...over 10% of her body weight in 2 1/2 weeks. From then on I watched everything she ate and it became obvious that she could not eat. She was not afraid of choking. It was classic anorexia. For several weeks I monitored every single thing she ate. It was painful for her. She would cry and tell me she doesn't know why she can't eat but she just can't and it makes her feel horrible. I took her to her pediatrician first who was just not that helpful at all. We were having no luck putting any weight on with all of our efforts. She lost another pound. One thing I started really noticing was that she was needing to run to the restroom all of the time. At first I was worried that she might be trying to vomit, so I watched her closely. I realized that she really truly felt the urge to urinate extremely frequently. She was also throwing these horrible fits. This was so odd because she had always been my calm child.

 

By the end of August and into September, we had tried two different local psychologists that did not seem to help. We changed pediatricians

to one who at least took her illness seriously, but still no answers. I started giving her a supplement called benecalorie in a shake every night (it enabled me to give her a fairly small shake that was probably about 800 calories). We just were not seeing improvement, so in early October, we took her to Children's Medical Center in Dallas which is the only hospital in the state (from what I was told) that would see a 10 year old with an eating disorder. The visit was a nightmare. We saw the specialists in the pediatric eating disorders unit. They interviewed my husband and I as well as our daughter. I will never forget the moment when the two doctors sat down and, in front of our daughter, told us that our 10 year old has anorexia. They said it was very rare to see such true anorexia symptoms in such a young child and that she needed treatment in an inpatient facility for a MINIMUM of 4 weeks if we did not want her to have this for a lifetime. They also explained that there would only be certain times that we could visit her, and the best thing would be for us to leave her there that day and to go home (2 hours away) and bring her things later. Needless to say, my daughter was screaming, crying, and begging for us to please not leave her there...we did not. I knew she had a life threatening condition, but I also knew that my 10 year old may never recover psychologically from being in that hospital. At that point she was not gaining any weight, but we were able to (with great effort) keep her from losing. The day at Children's Hospital temporarily motivated her to try a little harder at eating even though it was extremely difficult. We went to Children's on a Monday. Friday morning when she got up she was doing this stepping back and fourth movement. She could not stand still, and did not for several months. It was like she was in constant motion. In my opinion, I think she was terrified into having to cooperate somewhat with eating, and the stress caused these other behaviors.

 

Shortly after the Children's Hospital visit we got a new game plan. We changed to a psychologists with experience in childhood anorexia and we made an appointment with a nutritionist that specializes in eating disorders. At our first appointment, one of the questions the nutritionist asked was if she had been sick before this started. She told me that in rare cases this can cause anorexia. She did not say the word PANDAS and I really did not remember any major illness, except possibly a sore throat, but no fever. When I got home, I started to research on the internet and learned about PANDAS.

 

Her pediatrician agreed to do strep titers and they came back high. One of the two (either ASO or dnase was about 2 1/2 times normal limit...not sky high, but it was high. the other was above normal... not even double though. I did call the doctor that we had seen at Children's Hospital to ask about PANDAS, but they were not helpful. We treated her with antibiotics, but did not see any change. I think that the problem was that this was in November. We were already 4 months into it by then. Things were very strange. She was in constant motion and unable to completely sit down....the entire day. She was going to school, but would half stand at her desk. We would get her each day at lunch and bring her home to eat. My daughter who was once very social and loved her friends did not care about anything but trying to stay moving and eat as little as possible. My daughter who never went through the terrible two's was throwing horrible fits and screaming at me. My daughter who loved to read could not sit for 30 seconds and read a book.

 

We were going to therapy weekly but were not making progress. We did a couple more titers. They were dropping, but only slightly. We decided that we needed more help. At that point, despite the lack of help in the area of PANDAS, I really believed my daughter had PANDAS, but I also knew we needed some additional help dealing with the anorexia. In January of 2009, we took her to a week long intensive outpatient family therapy program in San Diego at UCSD. The program is under the direction of Walter Kaye, M.D. Just to make it clear, they specialize in eating disorders. We did not go there specifically for PANDAS help. They helped us tremendously with some coping skills to use to help in our daily lives. The doctors there did feel like many of her issues, especially the inability to sit without throwing a fit, fell under the category of OCD and suggested additional behavioral therapy.

 

After returning home, some things were better, mainly because we knew how to manage them better. We were seeing the psychologist weekly. We just could not get to a point where I could send her away from me and expect her to eat on her own. She continued to be unable to sit down. We saw a psychiatrist in March about the movement and he started her on Mirtazapine. I noticed that she was not moving as much but she still could not sit during the daytime. There was no change in becoming more independent eating...She still never would put anything in her mouth unless she was told it was time to eat. At that point we were at about 63 pounds.

 

In June I clearly remember going on vacation and still having her at my side at every meal. At that point, I could tell she was doing better, but thought there is no way this child could go off to camp again or even a weekend trip without me.

 

In July of 2009 I started noticing some strange behavior. She would tell me her stomach hurt, but it was around meal time...Could she actually be experiencing hunger? This went on for about a week. I was also noticing that she was able to sit back in the car a little better. A few days later, I showed up to pick her up from a swimming lesson...she was eating laffy taffy! A week before she would never have put anything in her mouth voluntarily, and would flat out refuse candy. She was back! The next several days were unbelievable. She went from requiring 100% supervision with eating to almost none. She could sit down in a chair. I got her in to get her blood levels drawn and her ASO had dropped to about 260.

 

We kept her on the mirtazipine for fear of making any sudden changes. It was really just a precaution. I knew she did not need it. We only took her off of that about 6 weeks ago. There was no change when she discontinued it.

 

I am sorry my story ended up so long, but I have just been thinking lately about how every bit of information I could find was so helpful to me. I know there are only a small number of PANDAS children with anorexia, and there are many professionals that just don't believe in it. I actually called back the Children's Hospital when my daughter got better. My hope was that they would be interested to know more about why she got better. I was surprised that I did not hear back from them. My thought was that it is likely that another child like my daughter will show up there in the future with a similar story. My hope was that they might consider testing for strep in a very young child before terrifying them into inpatient care.

 

I know the majority of the active members of this board are still battling PANDAS daily and I pray for you all. I don't think I was ever really certain she had it until it went away...Her psychologist (eating disorder specialist) said none of her patients just wake up and their eating disorder (as well as other odd behavior) disappears. I am grateful every day to have my daughter back, but always fear it could return. We keep home strep tests on hand and test her at the drop of a hat. She has had a great school year, enjoys her friends again and will get to go to camp this summer. She is 95% her old self again. I don't know if the other 5% will return. She is a little more active than she was...not hyper, but prefers to be outside playing a sport. Still makes excellent grades, but the love of reading a book for fun is just not there anymore...minor details...trust me we are grateful every day.

 

Incidentally, we do have the whole autoimmune family history. My Dad has Parkinsons, ankylosing spondylitis, and had Rheumatic fever as a child. He tests positive for the HLA-B27 gene which is present in many with ankylosing spondylitis. My sister and I also test positive for that gene. Two out of my sisters 3 children had a tic around age 10 that lasted for a little while and then went away.

 

I know most of you won't make it to the bottom of this novel, but if you do it may be because you have a child with similar issues and just need information and a little hope. I am happy to answer any questions. karen

[Very worried.. could this be start of PANDAS in non-PANDAS dd?]

Sorry you are going through this. I am sure you worry constantly about your DD since your son does have PANDAS. I am constantly watching my DS5 now that I know we may be having a diagnosis soon of PANDAS for my DS7. I feel for you! I am sure you analyze every little thing she does. My DS5 had strep too about 8 weeks ago so I am really watching him now! He has this hand tic thing he has been doing for a while and it seems to be getting worse. Gosh I hate freaking about every little thing...it sucks doesn't it!

 

I hope you get answers soon. Keep us posted.

 

 

DS9 has PANDAS and probably has had it since age 5. My daughter, who will be 4 in August has seemed perfectly fine up until now. A couple weeks ago she dropped an m&m on the floor and picked it up and ate it. No big deal, but my husband said something along the lines of "That's fine, but generally you don't want to eat things that you drop on the floor or the ground." Very mellow, not a big deal. Since then though I will give her something and she will ask me a few times, "Did I drop this?" Even when she knows it's been in her hand the whole time. She's very smart and very verbal, so it's not a comprehension problem. She KNOWS she didn't drop it, but will ask anyway. My husband says she will ask him, "is this my drink?" quite a lot when they are out somewhere (and even at home, though she's only done it with me once or twice). Even when the drink hasn't left her hand.

 

Tonight was a big issue, though, and here's why I'm worried: We had a babysitter tonight, someone who babysits frequently and my daughter adores (she's a preschool teacher). While the sitter was cleaning up the kitchen after dinner, my daughter was sitting at the table having an ice cream sandwich. She asked the sitter, "Did I drop this?" Of course the sitter has no idea that there is any history to that, so she says, "I don't know, did you?" my daughter BURST into wild tears and kept asking over and over, "Did I drop this?". The sitter said, "Honey, no you didn't drop it, it's fine.. see? It's there in your hand, you didn't drop it" But my daughter asked over and over and over. At one point the sitter said, "Can you tell me why you are asking me over and over?" and my daughter just said, "I don't know" and then asked again. She ended up falling asleep crying because she couldn't calm down.

 

I'm very worried that this particular incident in particular seems VERY OCDish. Then again, kids get stuck on weird stuff and until tonight I had thought that it was just age appropriate. Tonight seemed different and based on how the sitter told it, she just seemed really stuck. What seemed to make it turn bad was the fact that the sitter originally (unknowingly) said, "I don't know".

 

Here's the kicker.. she had strep about 6 weeks ago.

 

Is this a first PANDAS episode?? What do I do?? Should I see if I can convince our ped (who already thinks I'm nuts, but humors me with abx for my son based on my consult w/ Dr. L, etc.) to prescribe maybe a month of abx for my daughter? If this is a first PANDAS episode, can we maybe nip it in the bud? If so, which antibiotic and for how long? I can check titers, but I know that titers mean diddly squat.

 

What do you guys think?

[A Fresh Convert!]

Congratulations! You were persistent in your fight and you won! Hopefully he will stick with you and become a true advocate to treat your child!

 

We've had 3 healthcare appointments in the last week, 2 of which were, frankly, dire disappointments.

 

Appointment No. 1 was with DS's regular pediatrician of over 10 years. She's been helping us by prescribing abx, and I have given her a binder full of documentation and research in support of at least considering PANDAS, but she was an admitted skeptic at the beginning, and, apparently, she's not budging from that particular point of view. I quizzed her at some length this last time, and while I didn't directly poke her about just how much of the materials I'd supplied she'd actually read, or if she'd even done some of her own research, she very clearly still sits on the Skeptic side of the room. She warned us about other physicians who might use "unproven" methods and sell expensive treatments that have not been fully tested in terms of efficacy, etc. She didn't want to investigate any further immune testing ("to what end?" she said), and she likened some of the PANDAS exploration and treatments with the "unproven links" between autism and MMR vaccines, etc. I got seriously bummed out talking with her.

 

Then, Appointment No. 2 was our first foray into an alternative therapy. I'm pretty open-minded and grew up with a lot of "new age" and Eastern medical ideas and methods, but this was just not what we expected. The vibe between DS and these therapists was all wrong, almost from the beginning, and we probably should have cut the session short, but we didn't. Needless to say, though, we won't be going back.

 

And then, on to Appointment No. 3, the one I'd been dreading the most, frankly: the stick-in-the-mud psych. We've been with this psych for more than 5 years and he is a very likable guy, and competent in his field, it would appear. But he dissed the whole PANDAS thing pretty thoroughly when I first brought it up some 5 years ago, and when I returned back last October with a new round of PANDAS-related inquiries, he was obviously put out with me. I didn't give up, though; I printed and duplicated 10s of journal articles and accounts (many of which were brought to me by this forum -- thanks! ), and took them to him on the next visit. I highlighted a few that I thought he would find most "convincing" or from the most "prestigious" sources, as he seems swayed according to the particular publication or doctors' names associated with an article. He seemed especially "impressed" by the Columbia mice study.

 

So today was the first time we've been back to see him since that last time; it's been about 2.5 months. I had a few more articles in hand today, and I had a few new questions for him about serotonin, dopamine, etc. I also asked him what he knew about the OCD/glutamate studies recently conducted at Case Western University, etc. I had Kenneth Bock's book with me, and we talked about a few of Dr. Bock's conclusions and responses, etc. I talked to him about auto-immune and inflammation and tracking DS's behavior and how NOT standard OCD it's all been. And here's the kicker:

 

HE AGREED!! He said, "You've got me, Nancy. You've done your homework. You're right, there's obviously something else in the picture, here. Thanks for the research. I still don't feel I know much about it, but let's do what you guys think feels best."

 

I'm still picking my jaw up off the floor. If THIS guy can be "converted," there remains hope for just about anybody!

[FRUSTRATED with Neurologist about bloodwork!]

Hello everyone. I am frustrated! I have approached the Neurologist about doing the following tests in addition to the bloodwork we will repeat on my son in late May (the ASO and the Anti-DNase and she just doesn't see the relevance of doing all this expensive testing.

 

The tests I told her I had researched and with the advice of someone from this board these were the tests I had found:

 

Streptozyme

Mycoplasma titers

EBV Panel

Copper (serum) ceruloplasma titers

Natural killer cells

CD3-C16+CD56

IgG subclasses

Subclass 1, 2, 3, 4

CD57, CD3, CD8 Flow Cytometry

CBC

Lyme Disease antibodies, IGG, IGM Western Blot

Pneumococcal Antibody Panel

Natural Killer Cell Functional Assay

Lymphocyte Mitogen Screen

ESR-Sed Rate

CRP-C-Reactive Protein

AP50

Neutrophil Oxidative burst

 

So the Neurologist admitted she would not be able to interpret the results anyway because it is not her area of expertise and I said it is my understanding there are immune issues we should look at too since this is an immune disorder, right? And she basically said well then maybe you need to just go to an Immunologist then. She said that the PANDAS cases she has dealt with have only involved the ASO and Anti-DNase B and it has been cut and dry. I asked if she was currently treating any PANDAS kids and she said no not currently. I then asked her if we should also be at least running a Streptozine test and she said she had never done that test and I said well doesn't that test for an active infection and not just past infections and she said she was not sure and she would look into it and add it if she thought we needed too.

 

Anyway, I just don't know what to do! Wait or not wait? He has very minor and infrequent tics which have progressively gotten better since his last known strep infection11 months ago and having his tonsils removed, but take him off the zoloft and the OCD comes right back so I know that if it is PANDAS, then the elevated antibodies are still negatively impacting his little body. We had talked about consulting with Dr. B but I just don't know if I should just go ahead and take the advice of someone from the board and just go see Dr. R (an Immunologist) in Dallas for a second opinion. I REALLY don't want to work with someone over the phone to treat him.

 

So my question is this, are these tests important and valuable right now or only if his results are weird from the second ASO and Anti-DNase B?

 

Thanks for any advice!

[Stop calling it autism]

Just proves to me that I AM MY SON'S GREATEST ADVOCATE, DOCTOR, ETC. I will not feel funny asking...NO TELLING the doctors what I expect them to do for my son. If they won't listen, I will find one that will!

 

Thank you for sharing this families amazing journey!

 

I thought this site had some really good info that others might want to take a look at. Video, test results etc.

Sickening to think that this child may have missed out on the healing process if the parents would not have persisted

 

http://www.stopcallingitautism.com/

[2 1/2 yr old w/possible PANDAS]

So sorry you are struggling with this. I wish you the best of luck and hope you find the help she needs.

 

I'm new here, a friend suggested I come for help. I have a 2 1/2 yr old daughter that we have been treating for autism since right after her 1st birthday. We have done numerous biomed interventions that have been successful on paper but really don't reflect on her behavior. We're at the point where we rarely leave the house because of her anxiety and just getting through the day is very difficult. I haven't really been around a lot of autistic kiddos so mainly rely on forums and yahoo groups for info. I hear a lot of parents mention anxiety, non-compliance, rigidity, etc so just assumed that was part of the deal. We switched to a very prominent DAN! dr. about a month ago and he was absolutely floored by my daughter's behaviors. He basicaly said he couldn't believe my marriage has lasted and I've got to be out of my mind for even considering having another child. I'm currently 6 mos pregnant. He has a son with autism and has been through a lot so I don't take offense but it did concern me that we were bumped up into his top 5 of difficult cases.....and he saw her on one of her best days ever.

 

He ordered a slew of tests that we are trying to get done in the next month or so....MRI of head, scope of g.i. tract, stool analysis, kub x-ray. My daughter also has chronic constipation and clostridia/yeast infections.

 

We ended up at his office on Monday, she had an ear infection/ upper respiratory type illness. The dr. was then speechless at that point. Her behavior was so bad that we could barely hear each other. He checked her ears and they had cleared by that point from the drops I was using so that wasn't even the excuse for insanity. He thought her symptoms really looked like something he would see in a PANDAS patient and suggested we try 10 days of zithromax. He was hoping we might see some improvements in her behaviors and at least get some kind of direction for treatment. We're seriously at our whit's end here. These are the symptoms that I'm noticing, I'm sure there are several things I'm not noticing. Any help or advice would be greatly appreciated.

 

1. she spends the majority of the day running in circles and pacing around the same invisible track in our house.

2. extreme hyperactivity

3. severre anxiety about going just about anywhere but 5 places (IN-N-OUt Burger, therapy, Whole Foods, hyperbaric clinic, dad's work)

4. to get to those places, she insists we drive down certain streets or all heck breaks loose)

5. will only walk around neighborhood in a certain path and must stop at several points to touch or step on items (flowers, bushes, stepping stones, lights, signs)

6. started doing a weird facial grimace...she does it out of frustration but also just does it sometimes. She is fully aware and doesn't seem to be having a seizure while doing it.

 

Although I'm not excited about the possibilities of another problem, this one sounds treatable and it would at least give me some direction. I'm willing to do whatever it takes to save my little girl. She's very sharp and aware but there is just something that is really holding her back. She's somewhat a non-responder in the autism biomed world and I'm just hoping to find something that might help her. We gave her the first dose of zithro last night and so far nothing amazing has happened but she does seem calmer today and isn't really pacing as much. We now go down to a lower dose for the next 9 days and see how it goes.

 

 

thanks for listening.

-Amber

[Thinking of having phone consult with Dr. Bouboulis]

Hi Melanie! I sent my son's synopsis early last week to his nurse and I called to make sure she had it. She said it would take a while for him to get back to me but to call her and remind her to make sure she could put my paper in front of him at some point. I called this morning to add a few things to it and she did and said she would try and pull him aside soon to show it to him. Anyway, she called me back about 3 hours later and said he had reviewed it and would be willing to have a phone consult but hoped I could get more labs done before then.

 

If you are not that far, schedule an appointment and go see him! Otherwise, call Stella his nurse again and fax her the information and follow up with her frequently. I am in Texas so the phone is what we will have to start with. Good luck!

 

I called DR B today too.I spoke with the nurse ,gave her my info and my number.She said she would speak with him and get back to me.I thought maybe tonight but I guess not,I did call him about a month ago and he didnt return my call.Hes probably busy.SShould I call again?Does it take a while or should I just go there?Im in NJ so its not to far .

 

Melanie

[Thinking of having phone consult with Dr. Bouboulis]

I spoke with Dr. B's nurse this afternoon and she said he read the synopsis and would be willing to help. He would like additional bloodwork done before we visit. I have approached the Neurologist here in Austin about running the tests we need to so we have more information to look at. We will see if she goes for it! Thanks for the advice and I am hopeful we are going in the right direction.

 

I agree that she can't go wrong, but will he be able to do much over the phone?

[Thinking of having phone consult with Dr. Bouboulis]

Hello! I have sent a synopsis of our son to Dr. Bouboulis. Anyone else ever have a phone consult with him and what can we expect from it?

 

Thank you!

[POLL on initial ASO titers and anti-DNase B results]

Thanks for the responses. I am knew to all of this and just trying to learn and gather as much information as I can. I will check out the older thread too!

 

My son is currently in the beginning stages of possibly getting a PANDAS diagnosis. His ASO was 400 and anti-DNase B 561 at 11 months post last known strep infection. He is currently having mild ticcing (was bad last year during all the strep infections) and his behavior has improved a lot since then, but when we take him off the Zoloft, his OCD comes back quickly so he is still having issues and DH and I believe firmly that this is a post streptococcal disorder. There is no history on either side of Tourrettes or OCD but clear genetic predisposition for post strep disorders as both paternal and maternal grandfathers had RH as children.

 

 

`````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````

 

Just thought I would post my son has had numerous confirmed strep infections, and with negative ASO tests. We have tested 3 times during an infection, at 3-4 weeks after and the other one I really couldn't pin point, because all of the infections seem to run together.

 

They just never seem to rise.

 

Ginger

[POLL on initial ASO titers and anti-DNase B results]

Hi! Thought it would be interesting to see these numbers. Thanks for participating!

[Need Doctor in Texas for Second Opinion...synopsis of son included]

The persistent cough was probably his first TIC. I think you would be making a hugh mistake by not consulting with a PANDAS expert for a second opinion. Strep could be any where in your child.... sinuses, ears, gut, etc. so a positive culture might not be available and the strep is still present. AND, without antibiotics to protect him the next episode could be that much worse. No offense to your treating Dr. but they just don't seem knowledgeable on how to treat.

 

Our son's ASO was 244, anti-DNAse-B negative.... and he is still PANDAS. Here is some basic information on titers you should be providing to your current Dr. http://www.latitudes.org/forums/index.php?...art=#entry29483

 

Thank you for the response. Was your son strep asymptomatic or did you know he had strep at some point and how long after that strep was his ASO 244?

[Need Doctor in Texas for Second Opinion...synopsis of son included]

Hello everyone. I am looking for any advice on who to bring my son to for a second opinion. We need a doctor in Texas. Below is a synopsis if anyone wants to take the time to read it and offer any advice! Thank you so much for any help you can provide!

 

[Timeline of Coopers tics/behaviors and OCB

Cooper started eye blinking sometime during late summer/early fall of 2008. This eventually went away. We attributed it to allergies or dry eyes.

Cooper then started mouth stretching during late fall/early spring of 2009. This came and went for a period of time and we attributed it to dry lips and or cracked corners of mouth. This would get better and worse for several months. By early spring of 2009, the eye blinking came back. Cooper also began having head, neck, shoulder, legs, arms, finger and trunk tics. Some days were good, some days were worse. Between spring and summer of 2009, his tics waxed and waned and we definitely saw a change in Cooper’s behavior. He was more aggressive, quick to anger and easily frustrated. He would get fixed on something and get very angry and couldn’t let it go. He definitely seemed different than the child we had known for 5 years. He was also having a hard time with his handwriting, difficulty falling asleep and staying asleep. During this period of new tics and behaviors, Cooper had at least 6-8 positive strep infections (testing positive with a rapid throat test in the Doctor’s office). When we asked both Pediatric Neurologists we brought him to because of the behaviors and tics (one in San Antonio in May of 2009 and on in Austin in June of 2009) about whether this could be PANDAS as I had read about it online, and whether these behaviors and tics could be related to his repeated strep infections, they both asked if his behaviors or tics were worse during or immediately after the infection and if they got better with treatment. Honestly it was very difficult to know the timing as his strep infections seemed to be right on top of each other during the same period we were seeing all the new behaviors and tics. At the time we saw both Pediatric Neurologists, they also asked about OCB. We had not seen any behaviors that were obvious or that we could definitively say yes, that is OCB. But, on June 29, 2009, Cooper had a positive strep culture and within that week there was definitely a sudden onset of OCB. It was really bad and it seemed all of sudden that this came out of nowhere. It was bathroom related with the need to wipe over and over and the need to urinate over and over. I called his treating Neurologist and we started him on Zoloft. I had pretty much forgotten about PANDAS at the time since both Neurologists didn’t really see the connection. After the strep on June 29th, he had one more bout of strep in late July of 2009. As of that bout, he had been on the Zoloft for about three weeks. We also had his tonsils and adenoids removed the first part of August, 2009. Since August, his OCB’s seem almost nonexistent, and his tics have progressively gotten better and better and we now only have a few head and face tics along with the occasional trunk tic when he is in a stressful or excited situation. We have also seen an improvement in his behavior. So I ask, is his OCB/anxiety better because of the Zoloft only, or because he has not had any signs of strep; are his tics better because he has not had strep, or because we are just in a good period right now? Cooper has gone from an A student in Math to a C student and he really struggles in that area. Our 5 year old son is drawing better than him so I know he is not where he should be with that as well. Cooper was a very colicy baby along with having many years of allergy problems and chronic coughing as a toddler. Both his Grandfathers suffered from Rheumatic Fever as a child. I truly feel like we absolutely have to rule out strep as being the trigger for all of this because treating him for that is definitely a different treatment than if it is non infection related OCB, tics and behaviors. So where are we now? Really I just want to know if we are doing the right thing or should we be getting a second opinion. His Neurologist ordered the two standard bloodworks; ASO and Anti-DNAse B. This is the first time we have ever done these tests as his positive results for strep last year and the year before were done with throat swabs. We also took him off the Zoloft a week ago to see if the OCB would return and within a week they did so we are putting him back on the Zoloft (25mg) today at the direction of the Neurologist. We don’t have the results of the Anti-DNAse B, but his titer came back at 400. Although she said this is elevated, she said it could take him upwards of 12 months for that number to come down to more normal ranges. It has been 10 months since his last known strep infection. She said we should do bloodwork in another 2-3 months and see where we are at, keep him on the Zoloft and contact her within that time frame if anything rears its ugly head. Does this sound like a good course of action to you or should we be pursuing a second opinion? I have sent this information to both Dr. T, Dr. K and Beth Maloney author of Saving Sammy. They all seem to think this very well could be PANDAS. That being said, are we doing the right thing by sticking with the current Neurologists suggestion or should we be getting a second opinion? We are still waiting for the results of the Anti-DNAase B. Beth did send me a list of doctors in Texas, but we would no idea to choose!

 

Any advice is appreciated!

 

Cindy

[Is it PANDAS?]

Thanks so much for the reply Gina. It does appear we have very similar situations!! Sorry you are going through this too, it is so hard isn't it! You just want answers. I have never liked the unknown and I don't like it now!

 

Well I am hoping we have a plan, tell me what you think and any others with opinions, thanks. Spoke with the Neurologist this AM. We have an appointment next week. I am forwarding her all the information I am reading about on PANDAS and why I think it sounds like my son so she can take a look at all of it before our appt. When we go in, we are going to talk to her about weaning him off the zoloft and doing some baseline testing to see what we have currently going on with regards to strep since right now his tics and behaviors are not out of control. Then when he has a true exaggeration of symptoms, I gather that is the time to look again at the possible strep connection, right? I just really want to get him off the zoloft. Obviously if we find out down the rode that it can't be related and he needs medication for his health, we will do what we have to do for him, but I would be willing to try alternatives to these types of medications first.

 

What do you think? Does this sound like a good plan so we can find out if there is a connection? I just don't think we can while he is on the zoloft, would you agree?

 

Thanks so much and hope you find the answers you are looking for too.

 

Cindy

 

Cindy,

 

Your situation is so similar to mine. My son's tonsils were taken out Nov. 2008 and I don't think we've had strep since. Prior to that he had strep over and over, along with some sinus infections and a bajillion ear infections.

 

His OCD/tic showed up noticeably in Dec. 2007, though looking back I'm thinking it started earlier than that. He started Zoloft a month or so after his tonsillectomy and we attributed his improvements to that. But his OCD and tics do get better and worse and they usually improve as we head into Spring.

 

They definitely got much much worse when his brother had strep in September 2009. He's never had great handwriting, though it also gets better and worse. It really deteriorated. His math abilities also diminished after being something he always had an A in. He also added a bunch of new vocal and head/shoulder tics, started having trouble sleeping again and wet the bed a few times.

 

I mentioned all this to his doctor in October, so he swabbed him and it came back negative. I wasn't surprised because he was doing pretty good again by then (it's never been REALLY horrible). I didn't know enough then to ask for him to do the blood tests. The dr. wanted to increase his zoloft, which we did for a few days but I realized it was making him quite manic. We also realized that he had gained 15 pounds in the past 6 months and figured it was the zoloft. We decided to slowly wean him off and see if we noticed a difference.

 

By Christmas he was down to 25 mg (he was up to 150 mg at his highest manic dose) aside from a few days of emotional volatility, which we expected because withdrawal from zoloft is very hard, it hasn't changed anything except his weight is no longer increasing.

 

I read Saving Sammy about a month and a half ago and something inside me just knew that that is what we're dealing with. I decided we needed to talk with his doctor about PANDAS. 3 weeks ago we took him in to let the dr. know we were taking him off the zoloft and to talk about PANDAS. We weren't in an exacerbation, but he always has some OCD and some tics and emotional lability. We've always said he was an intense child. Now I knew that he was like all these other kids dealing with this disorder. We had his blood tests done then and started Augmentin.

 

Both his ASO and Anti-DNAase came back normal. Now his doctor really doesn't think it is PANDAS based on that alone, though he will admit he fits the diagnostic criteria. He did agree to talk with an infectious disease dr. he knows and admires and said he would look up Dr. T and his work. He also gave us another 10 days of Augmentin after I told him it helped and my son agreed, but said that without a current GABHs infection or elevated titers he really didn't see why it would help. I told him I didn't know either, but it was helping some. I'd like to see a more dramatic improvement, but I understand that recovery comes in small doses over a long period of time. I just wonder if we should be using Zith?

 

 

 

I would have them run, but I would make sure to make it clear to your doctor that he isn't at his worst and you wouldn't be surprised if his titers are normal and that you are just trying to get a baseline to compare the next exacerbation to. I would also make sure you run mycoplasma and lyme as well. We didn't, and still haven't, but plan to when we see the doctor again in a week and a half to discuss what he has learned. So many of the kids here have elevated titers I just want to know. Plus then I would know that Augmentin isn't the right abx.

 

Please keep us posted because I'm learning so much from what works or doesn't for others.

[Is it PANDAS?]

Thanks for the response. Right now his OCB is very under control but he is on the zoloft so I guess it would be hard to tell if he is having episodes of increased OCB since that is controlling it? I am so confused over all of this but my motherly instinct is telling me there is something to it. His tics like I said have been pretty mild for the last 6 months with only increased motor tics related to increased stress. He has had motor tics since eye blinking started sometime in the Fall of 2008. Towards the end of that year the other tics began showing themselves and got progressively worse during the winter and going into the spring months of 2009. During that time between fall 2008 and summer of 2009 is when he had all the positive strep cultures so you know we were continually treating with antibiotics. We went to the first Neurologist in June of 2009 about the tics. At that time we did NOT see any OCB. I asked about the PANDAS because of all the strep but they did not see a correlation. It wasn't until that strep infection in July that the OCB just seemed to show up, plus the fact that now I find out the frequent urination thing is common in PANDAS OCD freaks me out because that was his OCB. At the time though of course both Neurologists said, no they did not see a connection so I didn't even think twice about just putting him on zoloft.

 

As for other behaviors, the poor impulse control and behavior issues in school and at home persist and of course some days are better than others. So many things I am reading about PANDAS just sounds like I am reading about my child though!

 

Why would I do a culture first? Isn't the culture checking for an active infection, while the blood test is testing for antibodies? I am confused about that. I do worry about the timing for the blood test in that he is not exhibiting exaggerated symptoms right now, but wonder if his titer levels are elevated above normal since we still have the tics and these other issues.

 

Thanks again for your response and any further help is appreciated!

 

Welcome.

 

How is your son's OCD and other behavior changes now? Have you ever taken him for a follow up strep test since the last known infection? Is he on any meds besides the Zoloft right now?

 

 

Here is a link to a PANADS FAQ page

 

http://www.latitudes.org/forums/index.php?showtopic=6266

 

On it, there is a whole section devoted to Anti-DNAseB and ASO titers. If you are thinking about having the blood test done, I would first do a rapid and culture. If either is +, you don't have to do the blood test.

 

Just so you know, the Anti-DNAseB and ASO titers is not a diagnostic test for PANDAS, There are some PANDAS kids that do not show a rise in either.

 

There is a research study being done by Dr Cunningham that is the closest thing there is to a diagnostic test. The ideal is to have this done during an exacerbation of symptoms.

[Is it PANDAS?]

If my son has not had strep symptoms since his last bout of strep in July of last year (we had his tonsils out in August) and that was the bout where we saw the dramatic increase in OCB, could he still have elevated titer levels now (7 months later) that could indicate PANDAS?

 

His OCB seems to be currently controlled with zoloft which he has been on since July of 2009 (or are his symptoms just less because the strep is gone?), and his motor and vocal tics have been very mild for the past 6 months or so with only occasional flare ups that seem brought on by stress. So basically, it was during one of his last bouts of strep (he swabbed positive 6-7 times in a 10 month period during which we were working with a Neurologist separately trying to figure out what was happening with our son and these new facial and body tics that had progressed from eye blinking to multiple complex motor tics and weird behavior issues) that we saw what seemed like exaggerated OCB. It was a dramatic bathroom urination frequency thing along with other germ issues that was crazy and the night before we started him on the zoloft he literally stood in front of the toilet for 3 hours saying he had to pee over and over again. He has also been dealing with attention problems, poor impulse control, hyperactivity, mood swings, is irritable, has rage behavior, sleep issues, difficulty with handwriting and we have seen his math skills decrease as the school year has progressed.

 

I want to have his blood tested for these strep ?antibodies? to see if it is all his strep infections that caused the tics and behavior issues we are dealing with. His Neurologist did not think at the time that there was a connection between the two when we were trying to diagnose the tics and behaviors but that was before the OCB craziness. She wanted to know if his tics and behaviors wore worse or better during, before or after the strep infection and quite honestly he was having strep so many times that it all ran together and I really could not pinpoint that! It was not until I read up more on PANDAS and realized the crazy OCB started about 4 days after a positive strep swab that we could be on to something and may need to do this testing.

 

Is it too late to tell by the blood work though?

 

Thanks for any input!

 

Cindy