Could it be PANDAS?

[Dedee]

I am sure your husband has the best of intentions. However, he should educate himself before taking such a definitive stand. This is your childs brain we are talking about. If this is PANS, we are talking about an attack on her brain. So really??? He wants to worry about giving antibiotics? I have been a nurse for 27 years and I have 3 kids with PANDAS / PANS. He needs to look at the risk he is taking with his childs brain by NOT giving the antibiotics. Physicians do a great job of trying to scare people about antibiotics but will give you a two year script in a minute for acne. I have a son who went without treatment of his PANDAS for years. I would give anything if we could have changed that. The quicker you treat, the better the response. I encourage both of you to read as much as you can and see a specialist ASAP.

 

Dedee

[kc35]

The Dr called to say the 48 hr strep test was negative. My DD came home from school looking fine and somewhat chipper, but still ticcing. I am seeing a PANDAS literate ped (listed on the PANDASnetwork web page) on Monday, which is only 5 days from now. I believe she most likely has multiple chronic tics or Tourettes and I am seeing a waxing period, which is what the neurologist's nurse said when I called her yesterday. However I am taking everyone's advice here and on the Tourettes group to determine if it could be PANDAS. I know last year when all this started, they ruled it out. Thanks to everyone for their advice.

[nicklemama]

Just be aware that my son has never had a positive strep test. Treatment for PANS has significantly reduced his symptoms and he is tic free.

[qannie47]

If your going to try abx....get either amox/clave or straight augmentin. Amoxicillian by it's self did NOTHING for my ds with his first episode. He was on abx for 6 weeks before he tested neg for strep and finally ALL his symptoms went away....until he got sick again with any infection. I do not see any harm with a 14 day abx trial...trying this one time is not going to hurt anything, and just may yield some interesting results...that being said, if they do nothing, you can't rule out Pandas....like I said, it took 6 weeks the first time to see remission. During the next year, with mild episode, 14 days did restore my ds to baseline....then they stopped working...which led to IVIG. Best of LUCK

[kc35]

I went to the ped Dr who knows about PANDAS today. He did not think my DD fit the description of PANDAS. He has seen it before and has treated children with it. He would not even entertain the possibility of doing any blood work, even though she currently has a cough and low grade fever. He pretty much said my DD has some form of Tourettes and that I need to relax and accept it. He thought my DD had asthma since he heard a wheeze and prescribed an inhaler and suggested the flu vax (no thanx). Probably going back to my regular ped soon to get a 2nd opinion about wheeze/asthma. I feel like I'm going in circles.

[Chemar]

Please get a 2nd opinion before using that inhaler!!!!!!

Before we knew that my son had TS, he had wheezing which we now know was actually a tic! A doctor said he sounded like he had asthma gave him an inhaler which made things way worse!!!

I am not saying your child does not have asthma...just to have an actual respiratory doc confirm this before risking that inhaler...

 

I am sure the PANDAS parents will have plenty to say on the doctor refusing to run blood tests and proclaiming no PANDAS on just his opinion! so will leave that alone.

[Dedee]

I'm sorry, but any doctor who refuses to do lab work under these curcumstances is not aggressive enough in my opinion. Yes I understand he says he has treated PANDAS before but that does not make him a specialist by any stretch of the imagination. You need to go to a true PANS specialist or an LLMD. Stop chasing your tail and get real informed opinions. This type physician make me so angry. You need cold hard proof, not just his opinion. We need in depth lab work looking for infectious triggers and immune response. Please post the area you are from and hopefully someone can tell you a REAL specialist close by. You may very well need to travel to get a good physician, but it is well worth it. I am sorry you are having such a hard time.

 

Dedee

[mama2alex]

I went to the ped Dr who knows about PANDAS today. He did not think my DD fit the description of PANDAS. He has seen it before and has treated children with it. He would not even entertain the possibility of doing any blood work, even though she currently has a cough and low grade fever. He pretty much said my DD has some form of Tourettes and that I need to relax and accept it. He thought my DD had asthma since he heard a wheeze and prescribed an inhaler and suggested the flu vax (no thanx). Probably going back to my regular ped soon to get a 2nd opinion about wheeze/asthma. I feel like I'm going in circles.

 

This throws up all kinds of red flags. No good PANDAS doctor will rule it out without a lot of blood work, especially when the child has the hallmark symptoms of tics and OCD (even if mild right now). When you have a chance, please send PANDAS Network a quick email and let them know about your experience - they should not be recommending this doctor to desperate parents.

 

Please get your dd to a good PANDAS or Lyme literate doctor - someone who will run a full battery of lab tests, including a blood test for strep, mycoplasma, Lyme and co-infections, viruses, parasites, heavy metals and methylation defects. Most of these can be hard to detect, but a doctor who's experienced with them can use the testing as a guide while making a clinical diagnosis. If you post your approximate location, forum members can recommend doctors in your area.

[kc35]

I am definitely getting a second opinion about the asthma. In the past whenever my DD had a cough with wheezing it was determined to be walking pneumonia (I think that is caused by mycoplasma) and prescribed azithromycin. Although there have been times ,like this spring, when she was determined to possibly have walking pneumonia and it went away on its own. However now I wish I had treated it with az to prevent a possible autoimmune attack of the brain! If anyone knows of an LLMD, integrative Dr or PANDAS Dr near western PA please let me know. I tried calling one integrative Dr around Pittsburgh and even left a message but no response in over 2 weeks!! Philamom sent me some names near Philly but if possible I would like to see someone closer to western PA. Thanks for all info and all advice.

[rowingmom]

Good for you kc35. Any child with cough and fever needs to be further assessed for infection. Babesia can cause chronic cough.

Edited October 8, 2013 by rowingmom

[Dedee]

My daughter also had frequent pneumonia with asthmatic symptoms and my son had "asthma" for many years before they both had labs that showed positive IgG and IgM antibodies for Mycoplasma P. At the time of the positive antibodies neither were symptomatic. Amazingly after my son's antibodies went back to normal his "asthma" has never returned. My daughter barely has any wheezing and coughing anymore, only when she is sick. You should definately have get a full infectious workup. I would suggest an LLMD. You may have to give up the idea of finding someone close to home. Not many of us are that lucky. Our PANDAS doctor is 12 hours away and our LLMD is 5 hours away. We are lucky that our LLMD will do phone consults with us now and only requires us to come in once a year. The first year we came in every 6 months, but we have been there for a while now so this year she said we could change to once a year since she knows us to be compliant and forthcoming. Not that I always do everything she says exactly, but if I do anything different I always confess. Find a good LLMD right away and get some testing. You need some answers.

 

Dedee

[EAMom]

I would ditto the recommendation about seeing a LLMD as a well as a PANDAS specialist.

 

PA is #1 state for Lyme. http://www.lymediseaseassociation.org/index.php/about-lyme/cases-stats-maps-a-graphs/1081-2011-reported-lyme-cases-top-10-states

 

Here is a map with rates of Lyme in dogs (logically, where dogs have Lyme, so do people!). Overall 1/8 dogs in PA test positive for Lyme, and there are "hot spots" such as Armstrong County (63%) or Cambria County (86%), both in Western PA, where it is much higher.

http://www.capcvet.org/parasite-prevalence-maps/ You can get Lyme in just 1 tick bite and many bites go unnoticed! And, only 10% of cases will get a rash. http://www.poughkeepsiejournal.com/article/20130629/COLUMNISTS03/306290009/Valley-View-Standard-Lyme-disease-test-misses-bull-s-eye-

 

Lots of PANDAS kids have Lyme as an underlying trigger, with strep or mycoplasma on top...

 

On Amoxicillin...it didn't do much for us. We found Azithromycin (long term) to be much more clinically effective. (We may have had mycoplasma as well, nobody was testing for that in 2008.) It took 5 days of Azith (250mg/day for a 43 pounder) for mood to barely start to improve, 2 weeks for OCD, and 6 weeks for tics.

 

If mycoplasma is involved (that's what the symptoms sound like) then Biaxin may be more effective than Azith.

 

Even if strep if involved at the moment, Amoxcillin isn't terribly effective for PANDAS kids. http://www.urmc.rochester.edu/news/story/index.cfm?id=981

 

I would also recommend the Cunningham Test, which is an actual "Test for PANDAS". IMHO no child should be diagnosed with Tourettes, bipolar, ODD, ADHD, or OCD w/out running this test to help r/o PANDAS/pans. http://www.moleculera.com/

Edited October 19, 2013 by EAMom