New Here 15 Y.O. Daughter, PANDAS 2 Days Ago

[SurfMom]

Our 15 year old daughter, adopted at age three from Russia, unknown health history, perfect health up to six months ago. Straight A student, athlete. World's easiest kid to raise. Strep infection in March, round of amoxicillin 500 mg. No problems since.

 

Two weeks ago she started have trouble with school work, expressed tension with friends, performance in sports deteriorating. In a matter of a week she shows every sign of PANDAS (which I had never heard of), except the most prevalent: OCD and tics. Bizarre behavior sends us to ER thinking her drinks at school are being laced with drugs. Psychiatrist things depression puts her on low dose of Zoloft. Two days later the school calls and says her speech is incoherent and gait is strange, pediatrician worries about neurology...possible brain bleed or tumor.

 

On the way to the hospital we notice strange tics and she is worried about germs and dog hair in the car. In a matter of hours at the ER she has OCD and tics that most would not pick up on but I recognize immediately. Her whole facial expressions have changed.

 

While waiting for a CAT scan, I say to the doctor that she has been so healthy, only one thing ever which was a bout of strep. Stops in his tracks, orders the titers and though without symptoms, she tests positive for strep antibodies. Just as we are checking out, her fever spikes for the first time: strep. We are told to add Tylenol to her regimen to help with fever/headaches.

 

Now on day three of amoxicillin 875 mg. We are seeing minor improvements but today is a bit of a setback from yesterday. We held back on the Tylenol yesterday as her headache and fever began to subside and coincidentally, her moods and OCD (obsessed with wrist pain and hand washing) get somewhat worse.

 

So here we are, ticking along the year-long minutes, praying for improvement, self-educating and looking for experts. Her pediatrician is already saying that this should clear up with one dose of antibiotics and not to believe everything I read on the internet. We are contacting Dr. Murphy in the morning as she is our closest expert. I would like to hear from you all about positive/negative experiences but will also search this sight.

 

Our gut feelings not to attribute her illness to hormones, PMS, typical teen behavior etc. led us to a fast diagnosis just as the onset of the OCD and Tourette's kicked in. We are going to be as diligent in treating this as a systemic ongoing condition. In other words, we plan to treat and manage the cause not the symptoms.

 

Thanks for the platform to share information and suggestions. I am dressed in armor and ready for war . Thanks to all of you in advance!

[nicklemama]

Welcome. I would get to Dr Murphy as soon as you can. Amoxi is not all that effective on strep. You are so far ahead of the game than many of us. It took me more than a yr to figure out what was wrong with my DS. No doctor did. I figured it out on my own and then consulted w/ Dr T, who confirmed it.

 

My son was adopted from Russia as an infant and was the healthiest child you could imagine. He is very bright and athletic. He was 5 when all this started. Its been a long hard road of 3yrs.

 

I would drop the Tylenol and only give Motrin. Tylenol inferes w/ one of the brain chemicals. I can't remember which one at the moment but don't give Tylenol.

[kos_mom]

Surf Mom,

 

Most fortunate the ER doctor was listening and knowledgeable. You might see if you can get the Amoxicillin changed to Augmentin--people seem to have better success on that. Susan Swedo was recently quoted as recommending three to six weeks of abx, so see if you can get more than the usual ten day dose, although your pediatrician doesn't sound too promising (most are not).

 

Many parents find ibuprophen helpful for exacerbations--you might switch to that from Tylenol and dose even without fever.

 

Here is dosing advice from Dr. T:

 

"There seems to have been some confusion regarding dosing of Ibuprofen (aka Motrin, or Advil). The correct dose is 10mg/kg (or approx 5mg/pound) every 6-12 hrs (i.e. 2-4 times a day) NOT every 3-4 hrs

 

So, for example, for a 50lb child, the correct dose would be 250mg and you could give that as often as every 6 hrs, but at least once every twelve hours.

 

Never give it for more than a week without consulting your doctor .... it can be given longer, but let your doc know."

 

 

Dr. M may be close to you, but there may be a several months long wait list. Dr. T tends to have a schedule that lets him take on new onset and crisis cases. You could always continue with Dr. M once you get in. I think Dr. K may also be easier to get a near appointment. Both of these doctors also do phone consultations. I don't know about Dr. K, but Dr. T will provide a list of tests to run following a phone consultation and you can schedule another phone or in person consult to discuss the results. If you could at all swing it, I'd go in person after a phone consult--he has a chance to see the child and be more custom in his treatment recommendations and you can get prescriptions that way (not sure if you can get them if he doesn't see the child in person--perhaps someone else knows this).

 

With my best hopes this will be blitzkrieg and not a protracted battle for you and your daughter.

 

Ko's Mom

[Missmom]

Agree with everything they said, augmentin worked much better for us and amoxicillin did not help at all... Also definitely stop the Tylenol. You may be able to stop this pretty quickly since you caught it so early. You will just have to be very diligent from now on when she gets an illness, especially strep. Many of us take a low dose prophylactic abx just to try prevent strep. You will learn a lot on this board and so many wonderful people willing to try help. Just one other thought, if your daughter takes singulair for allergies, you might consider stopping that as well. My son took singulair for years, and I now wonder if that contributed to any of this. If you list your state others may be able to help you with doctors, etc....

Good luck

[EmilyK]

Is she still on Zoloft? I hear and read that SSRIs are not always effective and sometimes harmful with PANDAS. I also had a family member on it and looked like they were having strokes until they got off of it. When you say incoherent speech and weird gait, it reminds me of that. She's so lucky you caught this in two days! My son was adopted from Guatemala in 2006 with onset in 2010. Like KO's mom, no doctor found it, I did with help from coworkers. But it took us 18 months....

 

Good luck and I LOVE your attitude

[colleenrn]

Good advice already given. I wanted to add- has she had any recent immunizations? I would not let her get any for the time being as they can exacerbate symptoms. Amoxicillin can be ineffective in treating strep in some people. Augmentin would be better- also ask about azithromycin, which can reach intracellular strep when amoxicillin cannot.

 

Colleen

[SurfMom]

Good morning! I am up in those hours you are all familiar with, waiting for Sierra (pseudonym) to wake up hoping for a bit of improvement.

 

THANK YOU, THANK YOU for the information on Tylenol. We will start the day with Motrin with the proper dosage. The abx is going to be a delay for a day or two but I too am concerned that we are on the wrong path with amoxicillin. And, yes, we dropped her immediately off Zoloft with the PANDAS diagnosis. Thanks on that heads up too!

 

As many of you may have experienced, I am already getting resistance from physicians. Her pediatrician basically let me know I was a neurotic mother for requesting her to be seen this week (she has yet to see anyone post ER) and to sit back for a few weeks until the amoxicillin does its work. After the course of amoxi she will see DD in 3-4 weeks for another titer screen.

 

Uh, no she wont. She is fired.

 

By then she will have a pediatrician who remembers that her job is to promptly treat and follow-up with her young patients, and understand the level of concern that parents rightfully have for their children whose brains are under siege.

 

We also were told by our (now former) family physician while we were asking to be screened for strep that PANDAS does not exist because it does not have official designation. Stunned, I quipped, "Then it must be confusing to parents whose newborns don't exist until they have an official designation on their birth certificates."

 

We are on the phone this morning with Dr. M and Dr. T. I am already very touched by your generosity and kindness to share your advice and expertise. This is not a baton any of us want to carry but I assure you I will gladly take it and pass along every bit of information I have as we make our way around the track. I just hope that for each of our kids, the laps are few in number.

 

She is up, a bit more sunny, asking for her first OCD shower of the day but says she is hungry...in a program officially called "Stuff the Turkey" to add back the weight she lost in the last few weeks.

 

Back in bit .

Edited November 6, 2012 by SurfMom

[airial95]

I'm not sure how "close" you are to Dr. M's office, but you may want to mention that to her. We're local to her office, and were able to get our intack appt for our son within a couple of weeks because we were given a cancellation.

[kos_mom]

Definitely get on Dr. M's cancellation list. You can call weekly to check on whether there have been any cancellations to remind them you are there. I'd still recommend at least a phone consult with Dr. T because he'll order tests. If you are lucky enough to get into Dr. M sooner rather than later, going with test results already in hand will put you ahead of the game.

 

Most of us know how terrible this can be if it goes undx'ed and untreated (or undertreated) for months and years. Getting on this early is our fervent wish for everyone.

 

Good job on firing the pediatrician. To find a new one, you might try calling every pediatric practice within a reasonable distance and ask them if they have a doctor familiar with treating Pandas.

[SurfMom]

That you all are one step ahead of us sure helps validate the steps in our journey!

 

We were fortunate on the first hunch and phone call to fin a physician who has already treated a PANDAS patient! Sierra has an appointment on Thursday. We are grateful that we have found a willing and experienced physician, bit

 

We have also already started the new patient process in hopes of, as ko kindly offered, getting on the cancellation list. My husband is calling Dr. T now.

 

In trying to keep my humor about us, DD had a sliding episode yesterday. "It's a good thing we are famous since we are on TV all the time." I said, "Sierra, I want you to think. Why would we be on TV all the time or famous." She replied, "Because we are outside all the time....and you didn't look very good on TV, Mom."

 

Ouch.

 

Remind me I need foundation and mascara before I go running.

[WorriedDADNMOM]

Here is what we have learned. About every couple decades we have a severe strain of strep that goes around. Since we don't all know exactly where everyone is from, it is tough to tell the connectedness. All I can say is I know of multiple kiddos in my kiddos class/ or close in proximity/relationally to my kids that have had some issues all very similar to what is going on.

 

The fact that you already know about the strep titers is very good. I would add looking at EBV, Mycoplasma and any other viral infections that your doc might think are worth while. I WOULD NOT rely on amoxicillin alone. If there are other co-infections, amoxicillin will do nothing and in our case was not strong enough for the strain of strep that we encountered.

 

Just my two cents. If you want more info, PM us.

[Hopeny]

Just chiming in that my Lyme/PANDAS/Myco daughter was put on high dose Amox and basically almost went psychotic. A first 4 week course for strep/lyme worked well and then we upped it high dose because she worsened as soon as she went off the first round of amox. there were a couple of moments when I though I would have to hospitalize her, in one of many scary moments she told me she was afraid her clothes would hurt her. she also developed suicidal obsessions. Yikes. We did five days of Doxycycline for Lyme & co and then Augmentin and Biaxin combo (even though I know Augmentin has amox in it for some reason this combo worked) brought her back. I would also suggest that whatever doc you end up with you ask to send bloodwork to Igenex for Lyme, which can also cause/compound these symptoms. Also check Mycoplasma IGG and IGM. Not sure why but many of these infections seem to go hand in hand. Psych put my DD on Zoloft too but she overheated/shook so we took her off, thankfull antibiotics have been enough. Good luck, you will get your daughter back!

[Dedee]

I would call the NIMH and see if you qualify for their study. Call right away! Sorry have to run.

 

Dedee

[kos_mom]

Is 15 too old for NIMH?

[SurfMom]

Random notes while cleaning the kitchen.....

 

I am reading all of your posts like new-found treasure maps. Very, very helpful.

 

ADD presence is helpful. We had never seen this before and it is actually frustrating her as she is much aware of the fact that she is falling behind due to her being out of school for a couple of days but being unable to focus long enough to get it done.

 

We will definitely pursue Lyme, Myco, EBV and I will educate myself on each of those tonight.

 

Thanks for the NIMH study. Unfortunately it is limited to age 12. A shame since she exhibited every single symptom. DH and I believe she is one of the rare over 12's because she is a late bloomer, and petite at 5'3" and a tad over 90lbs.

 

I am in the dark about the molecular/chemical processes involved with the abx but I am learning quickly. Appreciate the specifics on each.