Possible PANDAS

[Helpmyson78]

Hi everyone ..

 

My son has a tic disorder and possible PANDAS now.

 

He is seeing Dr.Kaplan Monday ...who ive been emailing the last two weeks here in Minnesota.

 

My son is on day 14 of cefdinir which his primary gave me when (new primary) I told her my son was diagnosed with a tic disorder and was tested positive for strep as soon as I learned about PANDAS three weeks ago...

 

My son had two entire days and nights with no tics !!! This hasn't happened in 2 years, and now the tics are back tonight... Has anyone seen this with treatment right away ? If this is pandas , assuming he has had it for a long time. I'm trying to be rational here but it seems like something is going on and that the antibiotics are doing something.

 

He is also being tested for allergies in a week in case it isn't pandas ..need to get the ball rolling on what is triggering all these tics.

 

My son exhibits each and every symptom of pandas and I almost died ...iterally died when all the peices to this sad puzzle were put together. He is almost scare to fall asleep,inability to fall asleep. OCD, tics, aggression, night terrors, hallucinations, sensory issues, tics all night...but everything the past year has been so much worse. We noticed his first tics when he was 1.5 and now is almost 4, just last year he was seen by a neurologist who boldly said come back if you want meds....otherwise good luck.

 

My husband and I are so distraught , we are holding onto our faith so tight. Please pray we find answers. Can someone explain the Lyme correlation? My son has been in the woods, at my in laws farm since he was little...but im curious about the exact symptoms.

 

Again sorry for all the blabbing, my main question is about the reaction I'm noticing from cefdinir. Two days without tics has to mean something, when it's been years since he had a tic free day

[colleendonny]

Hi. It sounds to me like it could be PANDAS. The Lyme correlation coincides with PANDAS. It is also called PANS and PITAND, pediatric infection triggered autoimmune neuropsychiatric disorder. Meaning, hey, its not just from strep infections. It could be triggered from Lyme and coinfections of Lyme like Bartonella and Ehrlichiosis. Or mycoplasma to name a few.

In my case,my DD5 was diagnosed in December after sudden onset in October. Hers wasn't triggered strep, but from ehrlichiosis.

I would suggest you find a PANDAS specialist and make an appointment as soon as you can... Where do you live. There are only a handful of specialists. At the top ps the PANDAS page there is a thread of helpful links, one is doctors who have been helpful. There may be one in your area.

Good luck with everything! You'll find a lot of helpful information here.

[Helpmyson78]

I called two of the so called pandas specialist in Minnesota 4 times each and never received a call back.

 

Dr.Kaplan is professor of pediatrics at the university of Minnesota, he has studies strep for over twenty years. I recently asked him boldly if he was a critic of pandas and was surprised in a good way at his answers,

 

To say I'm pissed at a possible misdaigosis for my son is an understatement . I have been calling his primary and neurologist for over a year with exact and presise concerns about my sons downward spiral of issues to be offered nothing besides some random meds...only to now read symtpoms of pandas are exactly what he has been going thru,

 

Heres what I need, a room full of moms/dads who have gone thru this to tell me I'm not crazy ...because these doctors I've seen the last two years have helped in no way.

[patric]

Hi!

My heart goes out to you as I know this can be a scary time of uncertainty. There is hope and treatment if you can get to a pandas doc. Colleendonny is right that there are very few pandas doctors and I would get an appointment with one of them as soon as possible. They will help guide you to your next step with treatment options. The forum is also a huge help! What part of the country are you in? Keep in mind you may have to travel across states, but getting to the specialist is most important. Our son had major vocal tics and motor tics, sep. anxiety and rage like symptoms and after treatment with abx and HD IVIg, he is about 95 percent improved! We saw an immediate and drastic improvement almost overnight. However he does not have Lyme or other co infections so he results were dramatic! Best of luck to you and there is always a shoulder to lean on this forum. We understand.

Sharon

[Helpmyson78]

Thanks

 

His primary is willing to help treat this, she has treated one patient in the past.

 

I'm fortunate and blessed that she even gave me twenty days worth of cefdinir !!! Thought I was going to have to explain pandas to her., and beg her for antibiotics

 

Dr.Kaplan is who my son is seeing Monday morning, between these two doctors I might get somewhere, like I said I have been emailing Kaplan and for all I know there will be a major work up done on Henry Monday or following appointment. I am too driven at this point to sit and wonder what all this could be, I want answers!!!

[patric]

If you are in the Midwest (minnesota?) you could go to dr Kovacevic in chicago. You could email him also i think and give a description of symptoms etc. and he will email you back. He is one of the most experienced with pandas.

 

In my opinion I would not waste time with a doctor unless he is one of the four or five in the country who are recommended by the parents on this forum. If you are on east coast, or elsewhere I am sure some will chime in about excellent docs there.

Good luck!

[LNN]

Dr Kaplan is a highly respected authority on strep. I don't know where he stands currently on Pandas. I know that in the past he has taken a very conservative stance and in at least one publication, supported the naysayers. However, I don't believe he has a dog in the fight and may very well provide you with the support you've been searching for. I hope so. But if not, do not hesitate to consult with another doctor.

 

Lyme - which can also include co-infections like bartonella, ehrlichiosis, babesia and mycoplasma - is a bacteria that can have an outer surface that sometimes looks similar to the outer surface of some strains of strep. Both conditions can trigger an autoimmune response, with the body attacking itself. Dying bacteria can also release toxins that produce symptoms - known as a herxheimer response. Lyme, co-infections, strep, and other infections can, in certain individuals, all lead to many overlapping symptoms. There are some kids who have an obvious strep=>symptoms which is Pandas. The recognition that other triggers can result in similar presentations has led to the new, broader umbrella of PANS. If a child has been sick for awhile, it's possible to have more than one trigger. My son has both Pandas triggered by strep and lyme. It isn't always a neat, clean answer.

 

All of the infections I've mentioned respond to antibiotics. So you're probably right to be excited that your son has responded. I personally wouldn't let go of that, even though some doctors might not give it as much significance. But it may require some digging to figure out the infection trigger(s) which will then guide which antibiotic(s) and for how long. You may have stumbled onto a really important clue. But prepare yourself - the battle may just be starting. Answers don't always jump up and down and scream at you and doctors don't always share your enthusiasm.

 

Dr K in Chicago is probably the closest to you. But my understanding is that he does not test for or treat lyme. Other Pandas doctors will require a flight. Another option is to consider a DAN (Defeat Autism Now) doctor, an integrative doctor or osteopath, or a lyme-literate doctor (LLMD) (people on the lyme forum can help you with this or you click on my screen name and send me a private message). The down side is that many of these doctors do not accept insurance. So you need to pay out of pocket and then submit your own claim to your insurance co. for usually partial reimbursement. But you can also waste a lot of time and money seeing doctors who won't be helpful. So it's a tough decision.

 

You mention rage in another post, which can be seen in both tick-borne infections (especially bartonella) and Pandas. You might try giving your son motrin every 6-8 hrs for several days in a row to see if that helps. (Tylenol or other NSAIDs don't have the same effect - it should be motrin/ibuprofen). Give on a steady basis as best you can. Some kids have a surprisingly dramatic decrease in behaviors and improved mental focus when the inflammation is reduced. You can also consider magnesium for the tics. But only add one thing at a time or you won't know what's helping.

 

Please let us know how your appt goes!

[Helpmyson78]

Thanks !!!

 

How do they test for Lyme? Blood ?

 

From my email ps the past two weeks dr.Kaplan expresses options available. I was ready to cancel the appointment ...but he seems open minded. "let's the chips fall where they may"

 

My son takes a very good food based vitamin with magnesium in it, he is being tested for allergies next week... Might find some new triggers.

 

I'm buying motrin today!!!!! Is it safe to give a lot? He was up ticking for 3 hours last night. I need him to sleep. We all know he behaviors kids receive when they don't sleep

 

I have this gut feeling my son has both Lyme, and pandas. He has had tics on him before, we are outdoorsy folks. We remove all tics, but I'm reading something about infections from a tic bite, never knew about this !

 

I'm hoping my son will be admitted to the hospital for testing etc.

 

Dr.Kaplan treats his patients as if they were his own, and like I said his emails were very supportive. Up to this point NO doctors have been helpful besides telling us he has a tic disorder.

[Helpmyson78]

and these other options aren't going to happen for us, because my husband was laid off in october last year and our home is in foreclosure, so we have to try these other options as flying places for treatment isn't an options for us.

[colleendonny]

For Lyme and co infections testing, you can have any doctor test for them. But they are not always reliable. The most reliable way to test for Lyme and Co is through Igenex. There is also a new test that I do not know about so someone else may chime in.

You can call or go the IgeneX website. You can request a kit. You have to have a doctor sign off on the kit. Your doc will draw blood. You have to decide on which tests to test for. And its not cheap. We paid $740 cash for our test.

They will send you back paperwork to.submit to your health insurance. Hopefully you would get some or most reimbursed. The results will get sent to the md who ordered them.

Then if anything comes back positive you will have to go to an LLMD, Lyme literate medical doctor. More than likely, LLMD's do not accept insurance either.

You could always just have your sons doctor test through their labs, and see if anything comes back positive first.

[LNN]

If out of pocket expenses aren't a practical option, but you do have insurance, than ask one of your doctors to order a Western Blot lyme test - preferably thru Quest labs. A western blot looks for bands that indicate certain antibodies have been produced by the body. Different labs look for different bands. Igenex is a lab that looks for bands that are considered to be very lyme specific. But that probably isn't an option for you. Their basic test is @ $200 and many people get reimbursed by their insurance companies between 60%-80%, but you do need to pay up front and then hope for reimbursement. For now, given your situation, you can ask for a standard WB. If this standard WB shows lyme, then you can move forward based on that result. If it says negative, it may or may not be reliable, because it hasn't looked for certain lyme-specific bands(long and political reason why this is so). But it is covered by insurance and it's a place to start.

 

You are looking into two "controversial" illnesses. So you may need to do as much testing as you can given your situation and then try to work with sympathetic doctors who are in-network. If test results point toward lyme, there are non-profit groups that offer financial support. If test results point toward Pandas, you may be able to print out Pandas documentation from here http://intramural.nimh.nih.gov/pdn/web.htm and here http://ocfoundation.org/PANDAS/ and work with Dr Kaplan to devise a treatment plan that's affordable.

[Helpmyson78]

LLM ! Thanks!!!! I'm all about devising a plan right now!

[patric]

LLM that is good advice! Helpmyson, I read your post late last night and it really brought up a lot of emotions for me as I saw a lot of my own story in yours. I also didn't want to imply that you are not seeing good docs, but was colored by my own experience (and my emotions) with doctors and misdiagnosis and/or mis treatment. Also, my son had a pretty straightforward case ( no Lyme, etc) so I only know the path we took that worked for us, but realize that everyones path may be different. I wish you all the best in this journey!

[Helpmyson78]

No worries, it's so hard to relay all we want to say via this form of communication !! I'm a total mess and am soooo drained mentally from researching , reading the Sheila Rogers book and trying to keep an eye on my sons semi improvements... I feel like a mental case

 

I'm pretty sure my sons case is straightforward ... Pandas....

 

Wondering if I should lay off the new vitamin and motrin until I know if the meds are working ? As a parent I want to eliminate everything at once ! But I know we have to try one thing at a time.

 

Thanks for the support, my husband and I are alone in this, not much family support, this website is a blessing !!!

[Jeremy]

Helpmy son78:

Let me know how things go with Dr. Kaplan. We are in a similar situation and looking for a Dr. in MN to work with us. We have been working with a Naturopath that is excellent, but everything is out of pocket and ours are pretty empty. We have been keeping symptoms from getting really bad, but feel we could maybe really improve things with strong prescription anti-biotics vs. natural antimicrobials.