peglem

You have lovely girls! Beautiful blue eyes, with nice small pupils!

My ds just started doing this, too. It's mild but it's there. Is this a symptom of PANDAS? Yes

For my daughter, those raging freak out tantrums are usually the result of interruption of or inability to act out a compulsion. So maybe the OCD isn't as mild as you think it is? Have you had strep testing at the beginning, when the rages 1st show up? I also know what's coming the 1st time my daughter has a nighttime accident...its always the start of an exacerbation. How old is your son? It is very common for kids to hide the OCD, especially if at 1st it was treated as misbehavior (REALLY easy mistake to make!).

Right. I couldn't agree more! I just don't know what to do. We are 3 years into on again and off again ticcing. He was tic free over 6 months and now they're back. I'm just not sure I feel comfortable "assuming" it's TS or transient childhood tics. I feel like we should rule out PANDAS but our Ped. feels we already have with a neg. throat swab and negative ASO and DNASE-B back in 2007. What happens to the PANDAS kids who are incorrectly diagnosed TS? The next time your child has an exacerbation, see if you can do a trial of abx. What we noticed with my daughter (who had +rapid strep tests, but was dismissed by specialists as "just" a carrier), was that symptoms improved on antibotics and I knew to bring her in for a strep test just by behavior. Does your child only tic, or are there other symptoms?

This is an opinion piece, right? I think if a child is dx'd with tourettes or any neurological disorder that is only symptoms based, a search for an underlying medical cause should ensue. I don't think all tourettes or tics have PANDAS as a cause, but I do think tourettes is often diagnosed in PANDAS kids until parents have pushed for PANDAS investigations. I guess its possible to have your child misdiagnosed with PANDAS, but from the experiences I've had, the majority of doctors are very reluctant to even consider PANDAS, no less dx it.

I'm praying (more) for your success with this mission. Hope to hear good things (and maybe some tips) about the flight!

Worried Dad, I'm so glad you had a good experience with DAN doctors...and I think a lot of people are helped by them and get good results. I do think they are the only group actually trying to seek out solutions for autism. Like anything else, you have to be careful and search for the right one to help you. Because they fly outside (though some not as much as others) mainstream medicine and have little oversight...well there are some that I think are a little dubious. That being said, autism is not being handled well at all by the mainstream medical community, and for desperate parents, they are by and large, the only alternative.

It seemed like her hips were hurting, but she was only about 4 years old and not talking. I was alarmed and terrified. But I don't really know if she was unable to make her legs work right or if there was really pain.

Not Buster (who does understand this better than me), but I'll try. From above: One of the things Dr. Cunningham is testing for in this study is elevated activity of CamKinase II. The theory is that these anti neuronal antibodies are not really attacking (destroying) basal ganglia cells, but stimulating receptors in those cells to activate neurotransmission. The CamK in the cells acts kind of like a catalyst (it phosphorylizes stuff) to bring about chemical changes that cause the cells to begin sending impulses via neurotransmitters (like dopamine and serotonin). The cells are tricked by the antibodies into acting as though they are receiving messages from the body/brain to be passed on. So, high activity of CamK in the cells may be a sort of marker that shows these nerve cells are being overstimulated. The basal ganglia in the brain is a sort of "monitor and adjust" organ- examining incoming information from the senses @ the environment and fine tuning the impulses going out from the brain so the body can respond appropriately. That's my understanding of all this...but I'm certainly open to be corrected if I got something wrong. (its happened before!)

Honestly people, when you talk about your children's PANDAS symptoms....its autism, the difference being that your onset happened after language and early childhood development occurred....they call OCD different things in the autism community- perseveration, stimming, echolalia (which may actually be a tic). I think many autistic kids have PANDAS at the root of their autism...I think many have something else, but darn, they need to start looking beyond genes- I stopped contributing to autism research because the lion's share of the cash was going towards looking for a gene....not even close yet- they haven't found one. I'm very interested in what Susan Swedo is doing with autism research- she's on the right track, I think. She wants to tease out phenotypes to check for children who are likely to have similar causes....and she's looking at immune function. I guess its possible that she has recognized similarities between PANDAS and autism... As far as talking to the autism community about this...SOME DAN doctors at least recognize PANDAS, I'm not sure how far many of them would be willing to go as far as (GASP!) antibiotics and non alternative approaches. From what I hear there are some DAN doctors who really want to just try IVIG with autistic kids. Not sure that's a good approach either. Anyway, I didn't want to turn this into a thread about autism. I appreciate you guys validating my feelings, among other things. I'm just forging ahead. A bright spot...Allie's pediatrician DOES get PANDAS... and he understands that this caused the autism. After talking with Dr. Cunningham and Dr. Latimer and seeing the reasearch, he told me that he doesn't think Allie has autism. He thinks this has been the problem all along. I explained my "SYMPTOMS theory" to him. And he has 2 other patients (younger than Allie) that he thinks have PANDAS as well. He's got a lot riding on Allie's treatment success- he wants to learn how to help those other kids, too. AND he is a professor at an osteopathic med school here in Phoenix- he makes sure his students (they intern with him) meet Allie and learn about this- he even presented her case to his class. He is spreading the word on this as much as he can and is so happy to be able to save some kids that would probably otherwise end up in psychiatry. So, i guess Allie is doing her part to educate the medical profession!

Ah, man, I HATE STREP!!!!

In my state, autism qualifies as a lifelong disability which automatically makes you eligible for medical medicaid. They will pay for all kinds of services and therapies. And though the ABA folks have worked very hard to show it is the only "proven" therapy for autism (their research shows a wide variety of results, but there is a ton of it), it has been not effective (perhaps even detrimental) at all for my daughter. There really continues to be NO TREATMENT for autism, nada- send them to psychiatrists, educate them out of it....for my daughter nobody knows what to do, and they all think another field should handle it- and you get passed around. The bigger problem is, I think, physicians.....they see the autism as a finality, the "diagnosis" that explains everything. Honestly, I have heard the most assinine things from doctors.....Everything in my daughters medical history previous to finding her current pediatrician (when she was 10) was chalked up to autism. Wow, didn't realize I still had so much anger over this... They missed her chronic strep...all that drooling (because it HURT to swallow) was poor oral motor skills, The 3 days she couldn't walk, but dragged her legs behind her as she pulled herself with her arms- must be just fine, because its resolved now. She was sick ALL the time- "must be allergies" that happens a lot in autism. We were told she couldn't get a GI work up unless she complained of stomach pains....she couldn't express herself well enough to complain about anything! Sorry Vickie... Anyway, Our current (angel) pediatrician has been so good about trying to help us figure things out...still he sends us out to specialists with that same old attitude. Our local children's hospital is the worst, for specialists dismissive of autism. Hence, my thoughts that they should stop looking at autism as a diagnosis, and start seeing that its just symptoms....you look for a cause when you see symptoms. When you have a diagnosis, you think you found the cause!

Heehee- IVIG= IntraVenous ImmunoGallo!

This calls for a celebration...over here: http://www.latitudes.org/forums/index.php?showtopic=6302

Great news! Now find one for chocolate!

I think people need to change the way they think of autism (and a lot of psychiatric disorders). Professionals act as though autism is actually a diagnosis...they treat it like one. But all it really is, and the way it is "diagnosed" is just an observation of symptoms...period. Its sooooooo frustrating to have this "diagnosis" because nobody will look for the cause of what is really SYMPTOMS of something neurological. As long as they have this nice neat label posing as a diagnosis, they can use it to explain away everything and anything that comes along. I am so sick of this.....yes, my daughter has symptoms of autism....BUT, the cause is disruption of her development by PANDAS. I've made the comparison before: Its like a person going to the doctor with a swollen, bruised leg- it may be broken, may be arthritis...could be a lot of things, but the doctor diagnoses swellbruise syndrome and sends them on their way with the observation that people with this disorder often have trouble walking and a lot of pain....here's my bill and good luck with that. Maybe the doc recommends therapy to help them walk better, but that's largely unsuccessful because it hurts too much- now they are uncooperative with therapy- their fault they aren't improving..... That's how I feel about an autism "diagnosis". And if an explanation is found that accounts for the symptoms- the exact same disorder is no longer called autism.

I sometimes think of the OCD like a "thinking tic". Tics can be suppressed for a time, but eventually will explode out, right? So why not the OCD? She feels safer letting it out around you. Is that way off base?

I'm so sorry you had a (brain) dead end here- but had to laugh at your reaction!

It does come in 250 mg. dosage, though, and you can get it w/o the red coating- in fact, I've never seen it with a coating at all and we've seen plenty. My pharmacy gets it from Pliva (that's the manufacturer name).

Thank you Kim and Buster- amazing stuff!

So, the doctor said that the fact that she responded well to the rifampin is a good indication that we are indeed dealing with intracellular strep, but he feels the rifampin is too dangerous for her liver (given that she's on other meds that are cleared through the liver also). But is willing to give zithromax, starting with 500mg/day for 3 days to build up tissue levels, then maintain w/ 500mg every other day. While we do this, we'll continue the full strength augmentin for another 7 days. Basically, he thinks until we do some immune system treatments, we will not be able to eradicate strep. So he's treating symptoms until we see Dr. L in January. He's going to call her tomorrow so he can find out what blood testing she wants done, so it can be gotten prior to the appointment and see if we can get treatment that same week or soon after our appointment, so we will not have to make a second trip for that.

I can't tell you if its PANDAS, but I think you can't not investigate further- you need to find out if you can. If its not PANDAS, it sounds like it is at least immune related, so maybe get his immune system checked out. Did he have improvement w/ abx? You said he relapsed, so yes? Seems like it takes longer for hubs to come around (not always), but evidence from a good doctor who knows what to look for can often help.

So, is it saying that strep excretes enzymes that destroy or neutralize immunoglobulins? Checking to see if I got that right. If that's it, wow! Another piece of the puzzle.

I haven't. My daughter has had 2 MRIs, both normal. Did they say what the implications are here? This is normal after a concussion? Any short or long term symptoms involved with this? Sorry to be so curious.

Sounds like a good idea to me. If you notice some improvements on antifungals alone, this should give you clues in the future about which symptoms are yeast related. (sometimes its hard to tell)