SurfMom

LLM, thank you for your honest input. That is exactly the kind of opinion I am looking for. We have been spending the day researching centers and doctors that we think will be DD15-centered instead of data-centered (which was our experience with the disinterested, outgoing physician we saw in our 50 minute appt. for which we flew to Rothman). Thanks for the recommendation on Dr. L. about whom I have been reading this morning.

Updating.... DD15 saw the ped neurologist yesterday and like me, her gut is telling her that with the specifics of her abnormal EEG (the results of which we just got yesterday GRRR), we need to move on to the next level of diagnostics since we cannot break this flare after weeks of penicillin, azythromycin, cefdinir, and amoxicillin (which worked the first time). The neurologist is recommending Duke as they are both PANDAS/PANS experienced, have a new autoimmune center and would be more than willing to broaden the circle to see if there is indeed something more going on. We are going for the big enchilada of testing before moving on with steroids and IVIG but we are rapidly moving in that direction too. DD15 is worse today. Tics are now becoming choreiform movements and she can't process many simple instructions (like take this towel to the bathroom).

First, the background shows a low amplitudes fast activity. Low enough they had troubled counting the frequency. Some semi-rhythmic delta waves in the frontal region. All this supports her very poor processing speeds and that she has mild encephalopathy. Moving now to the next level of trying to determine causality or more likely, playing the process of elimination game. There is no evidence of seizures.

Isad, welcome. My DD15 was diagnosed in November. She is currently on Cefdinir after having a possible reaction to penicillin. The one thing I have learned in this is to be both vigilant and patient at the same time. You will be your child's greatest advocate and expert so keep a journal (I use a spreadsheet) of symptoms, medications and supplements and diet, start reading, keep a list of questions and find some time to laugh and take care of yourself. There are great pinned threads here, along with some great advice that will encourage you and inspire you to dig deeper. You will see that every child here presents PANDAS differently so let the information both encourage you and not worry you at the same time. Wishing your daughter health and wellness!

The night she was diagnosed, DD15's EEG was normal. Today, three months later, we have a an abnormal result..... Anyone else? We are now pursuing other causes of encephalopathy.

Yes, avoidance is one of DD15's primary OCD symptoms...avoids showers, school work, writing, chores. Interestingly in other ways she is obsessed with perfection. Suspect the two are linked as she often avoids things that she cannot perfect. Never once like this pre PANDAS.

Elaborating further on my thoughts While most kids get sick with strep, colds, flu, walking pneumonia, bronchitis, etc. some kids like mine suppress the illnesses with their over-vigilant immune systems and never appear to be sick. Instead the bacteria and viruses go undetected for months giving them ample opportunity to mimic healthy cells, reproduce at alarming rates and in some cases possibly mutate. What we get instead are bodies wracked with asymptomatic diseases and systems going haywire causing encephalitis. Their then overloaded immune systems weaken resulting in susceptibility to even more pathogens. My daughter, for example, exhibited allergy symptoms for the first time in her life which I believe was due to her weakened state and then an over-zealous histamine response. What we are looking for is immune modulation or stasis that will allow for a normal pathogenic response. It also means we are going to have to figure out whether they are "sick" with pathogens through frequent periodic titers and blood screenings.

Rempfer from Rothman called this morning after letting his nurse know last week that she was really going downhill. We are back trying a longer prescription of Azyth with a follow-up Ekg in a week or so after having her on Cefdinir for two weeks. Here are the results from the tests: no lyme or Lupus markers, no mycoplasma, no allergies...but Flu A antibodies were positive though she is asymptomatic for flu. Could be the flu dragging this exacerbation out. Week ten.....she woke up this morning OCD not wanting to touch the dogs because they have germs. She has tics, poor cognition, confusion, poor processing, irritability, mute.....we are simply stuck with these symptoms. Here is my (current) theory regarding her PANDAS: DD is adopted from Russia and while there is some belief that vaccines may be related, I think she developed the immune system of an army when she was a baby having been exposed to so many illnesses so early in life. She had chicken pox for sure, was exposed to TB and my guess had at least one high fever. From the time she was adopted at age three until age fifteen, she was never sick. Ever. Her ped. records are empty which stunned her doctor when the PANDAS presented itself. No fevers, vomiting, flu, bronchitis or presentation of strep or any other illness ever. Then, back in March '12 she gets the strep strain from heck...so much so that I get it too and it puts me in bed (I am a runner, athlete, never get sick either) for the first time in my adult life. The result? WWIII in the petite body of a 15 YO girl; DD had an immune system that could take on a nuclear attack....and then she got the atom bomb of all strep infections. The two world powers went at it head to head with battles ravaging her system....in October another strep exposure fires up PANDAS for the first time. Now we have to see how long this goes on, try to settler her immune system down and do everything we can to get the remaining strep under control. Just a theory...but aren't they all! Neuro appt. tomorrow. Going to discuss steroids and tonsil and adenoid removal as possible options.

Ped Neuro appointment on Tuesday. Absolutely moving to this level. Thank you!

Just keeping you all posted hoping it will help others down the road.... DD15 is still in her exacerbation, nine weeks and counting, for the most part mute, unable to do schoolwork, ticking, insomniacal, moody..... She will be on week two of Cedfinir on Monday. Symptoms worsened cognitively this week. Seeing the neurologist on Tuesday and should have more tests back by then.

I am am bumping this up having just reread this article. If you are new to PANDAS this is one of the best informational articles for parents and physicians out there.

Guess what? DD15, who had one bout of strep....but has otherwise never sick since the age of three.... is adopted from Russia.

To clarify, DD15 had her first exacerbation in late October, started treatment Nov. 5 and was clear by the 15th. We are adding Motrin but has been ineffective as far as we can tell. I too think there could be something else going on. We have a whole new round of testing on Monday. Of note she did have the most extensive testing for Lyme with negative results but I am not one to give up and will readdress that possibility if we still have no answers. Beyond the classic symptoms, the joint pain, significantly reduced speech and cognitive processing are nagging symptoms that have her coloring outside the PANDAS box and I want to get to the bottom of it.. It is excellent advice to recommend a six month plan and that suggestion went on the list as soon as I read it. We have been waiting on the steroids but that looks like the next best course of action, thank you. YES, having received the treatment we did, we will be pressing to see Dr. M. We have been extremely fortunate to be working with an excellent family doctor and a local pediatric neurologist locally so it came as quite a disappointing surprise to have such a poor experience at Rothman. And Tmom, it was encouraging that you saw her being back to 100% as encouraging, lol. Right now the threads I am hanging onto to stay positive are few so that little lifeline got me back to holding on with a vengeance. For those who have had testing done outside Rothman....do they call you with an official diagnosis and treatment plan when they have the final tests and have compiled the data or will the onus be on me to call and set that up?

DD15 is still going full throttle on her exacerbation that started the first week in Nov. Her doctor at Rothman (Rempfer whom I do not recommend for other reasons) seemed think this is more the norm than the exception. My sense is that if she is still moody all the time, never happy, ticcing, ADD, has trouble processing and has sensory issues....we are not hitting on the right treatment and that we should be seeing at least some measure of improvement. She was completely asymptomatic after a ten day course of amoxicillin 875mg and 12 days later she was exacerbating again with a no response to amoxi, azyth or now Cefdinir. In all this I am also growing increasingly concerned about jumping from one abx to the next. Thoughts?

Thank you both. I am all over the methylation cycle, learning about it to the nth degree to be able to present my concerns to her doctors cogently. Both of you have me sensing I am on the right track. Thanks to for the heads up on the heavy metals. On that next. Great timing with Sheila Roger's pub. It is interesting how many elevated, though slight, results in DD's blood panel that were dismissed during her first dx. Everyone is more than willing to treat the symptoms but digging deep for the root of the cause is falling squarely on me - as has been the case for so many of you.

Just a thought, but we are in the winter pattern of systems moving through every few days. In front of each line of storms, the air compresses increasing the density of pollutants and allergens in the air. You might want to track symptoms before and after the fronts move through. We are noticing that DD15's symptoms pick up just before an air mass moves through with some lessening of symptoms with Zyrtec.

Researching tonight on B12. In DD15, the only test that came back out of range on the the night of her first exacerbation was B!2. Now I am going back and looking at possible peripheral neuropathy. Anyone else with high on this screening?

Hopeny, have you tried taking her to an indoor swimming pool regularly? The cool water helps DD15....think it is a combination of reducing the inflammation and swelling, also reducing the pressure on her joints. Further, swimming is a mental distraction, fun and a break from winter cabin fever! You might try a YMCA if you do not otherwise have pool access this time of year.

Thank you so much for sharing your progress and I am most happy for you family. Right now we are road weary and frazzled and knowing that there is a hot shower and hotel down the the road sure gives us reason to trudge on! Merry Christmas!

Thanks to both of you. She has had extensive Lyme testing but her symptoms keep coming back to this possibility so we will be addressing it when we go to Dr. M in Jan. We are treating her aches on an as needed basis with Motrin but it really isn't helping. She was up most of the night which means we are off to a rocky start this morning. The hardest thing right now is keeping her moving. She wants to be immobile which exacerbates the stiffness. I will report back once we find out more,

In week five of the exacerbation that won't quit. One of the symptoms that won't let go is joint, particularly wrist and arm pain. Her grip is very weak. Anyone else experience these symptoms of have ideas on how to get her past this? TIA!

We are in the second exacerbation with DD15 who had her first outbreak at the end of October. Anticipating the possibility of another outbreak, we decided to start assimilating our team early. We found a general practitioner who was PANDAS literate, got referrals for a local neurologist, started the intake process with Dr. M at Rothman in St. Petersburg (our closest expert) and a psychiatrist who could help with cognitive behavioral therapy (CBT) if the tics held on. I also gave the school a heads up that we might need to pursue a homebound program and need of a 504 plan (a plan for accommodations that could be triggered in a much shorter time frame than an IEP. When she started the second, we pulled the trigger on each one of the above. We feel like we were way ahead of the game with a better-safe-than-sorry plan, especially at Rothman and our pediatric neurologist which can take some time. As a result we feel like we have a great support system that has helped us with countless questions and needs, and alleviated the parental stress that has come alongside managing health, school and family pressures.

DD15 has exhibited the same symptoms, propping her head up with her hand, falling over to the side.... After sleeping with her, I realize that her sleep is interrupted multiple times during the night and I doubt that in the last six weeks she has had a full night's sleep. It is probably less than four hours a night that her body is relaxed.

We would all be so much better off....society, parents, children, stakeholders, physicians, researchers...if we would simply take the work "mental" out of the term "mental health".