Taking another stab at this...

[kleek3]

Hello All,

 

I will try to explain and keep this as brief as possible. I will set up our history using approximate dates:

 

~Some time in 2011 - develops a vocal tic of throat clearing

 

~ April 2012 - Starts with a shoulder roll, we thought his shirts were too big

 

~Late April - DS4 screams and cries as we drop him off to school, nightmares severe restless sleep, really started noticing the extreme attachment to Mom, family vacation and DS4 is just not acting like himself, withdrawn, intolerant of other kids

 

~May 2012 - Strep Dx, within a week he is having multiple tics, head and shoulder rolling, spinning on one foot, urinates in his pants on 3 different occasions (not a normal happening) starts repeating Mom, Mom, Mommy. Wont walk any further unless he is holding Moms hand. Behavioral...he is fighting with his brother, he is destroying toys, up and down moods and emotions.

 

~May 2012 - I call Pediatrician to make an appt. to see our PA in regard to tics. That same day prior to the office visit, I get on the internet to look up tics. On my screen is something about PANDAS involving Strep and tics. At the office visit, I was told the tics were normal. I KNEW with all my heart, this was anything but normal. I asked had she ever heard of PANDAS and she consulted the Doctor. I was told that they would send us to the local Neurologist.

 

~May 2012 - My Uncle who is a retired Orthopedic Surgeon at NYU is doing some research and says regardless of what it is, call your doc and have them put him on a course of Zithromax.

 

~May 2012 - With the Zithromax the tics slow down, behavior issues are still there

 

~May 2012 - I decide to find a PANDAS specialist on the internet. I contact Dr Elia and she reefers me to a Doc at Columbia (cant remember name) and or Dr. Leckman at Yale.

 

~June 2012 - I have finally gotten a Doctor to hear me out, Leckman will see us.

 

~June 2012 - The appt. with our Neurologist comes, DS4 is on a non stop vocal; tic of clearing and sniffing, he is having several tics and now the face is included in these. Teeth baring eye rolling. He looks at our videos and examines DS4 and says we are doing the right thing following up with Yale. In the mean time abx of Penicillin 2x/daily until Yale visit.

 

~Late June - September 11, 2012 - DS4 is on daily abx, tics slow down tremendously. The behavioral issues wax and wayne. We are thrilled that the abx are helping the way they are. Its nice to have him feeling a little better.

 

~September 11, 2012 - DS4 hasn't had a vocal tic in weeks, we walk into office and he was clearing his throat. We are so used to it we didn't even notice. He is scared to death and starts to show stress. We comfort him and tell him that we are there to see if we can find a way to get him off abx. After a couple hours of question and answers mainly about my MIL who has tics, my pregnancy., labor and delivery. Dr. L comes back with the "Classic Tourette's Syndrome/ADHD dx". We are told to stop the abx as of that day and seek a counselor to help with our parenting. ***Let me say this clear, I liked Dr. L, he was fantastic making DS4 relax. He got down on the floor and played with him. He listens with open ears and I truly felt he cared. I am not discounting his DX. I know DS4 has tics and ADHD symptoms. It wasn't until we took him off meds that I started to question the dx.

 

~Sept. 13 - We should have advocated that it was NOT a good time to stop. 3rd day of school, split up from his Irish twin brother. Not the most optimal time to stop abx. He LOST HIS MIND! The tics were slowly creeping back in. His behavior was awful.

 

~Sept. 14 - We are wondering WHAT in Gods name are we going to do? The tics are back! I email Dr. L and he has some great advice about the repeating. That if the tics proceed, have our Pediatrician refill his abx for a month. I email Dr. T to say hey...what do you think of this situation? He says call my office and make an appt. I tell my husband and he got upset bc he thought I was undermining Dr. Leckmans opinion. The past post forum is locked. I am more scared and frustrated than EVER! I reach out to our Pediatrician and she hears me out. She listens to what has taken place since Yale and says back on abx today. She was not comfortable having him off the meds. She also encourages a second opinion. The next two days are not easy, tics are there behavior is crazy. We can and will figure this out!

 

~Sept. 15 - Had a wonderful phone conversation with a member of this forum. She educated me with tons of info that I have found so similar to our story. During that conversation we were interrupted with DS4s Croup out of nowhere cough. Back to Dr. in the am. We did not give him Steroids as we have in years past. He is fighting this Croup and winning! Behavior Sat/Sun was so good! I smile typing it.

 

Today, I got all of the TS paperwork to the office along with a letter to my Pediatrician asking two questions. 1) How many day course is this round of Penicillin? And 2) When he finishes this round, how do you feel about Strep testing to see if he has cleared the infection? If a NEG Strep comes back, can we do baseline labs?

 

This is it in a nutshell. I am so sure I am missing lots of details. My question for all of you seasoned professionals is this: If you were in my situation, is this what you would be asking for? Or should I say, what should I ask for beyond what I have just explained? Thank you all again for any words of encouragement. I'm not quitting! I now know the people that posted on that last TS not PANDAS topic were just passionate about what you are fighting for. We are on the same team. Believe me! I wish it was TS/ADHD. I'm almost certain it is not, some Doctor needs to prove me wrong.

 

Night! Kristin

[AmySLP]

Well written Kristin. I will find my email with all the labs dr. bouboulis got on our initial visit. You have a good pediatrician.....can't see why she wouldn't order these. Many won't make much sense to her, but will help when you get a second opinion.

 

Amy

[kos_mom]

Sorry you are having to go through all this. If I were in your place and I would go along with your pediatrician's advice and seek a second opinion. I would go ahead and schedule a phone or in person consult with Dr. T, who appears to be within reasonable distance of you.

[EAMom]

Go with your mommy gut! You know your kid. You know what your kid was like before this started. You've seen him change (with a diagnosed strep infection no less!). You really can't compare that with an hour or two of assessment (no matter how well-intentioned) from any MD. It's not uncommon for parents to need the 2nd or 3rd (or 8th or 18th!) opinion to get their PANDAS kids diagnosed/treated/healed.

 

Based on your son's history/symptoms, I would say the exact same thing...even if you had gotten the "it's TS and not PANDAS" from the OTHER Dr. L (Dr. Latimer).

 

I would say, you are lucky to have an on-the-ball ped! Would she be willing to use something stronger than pen? Here's an article you might want to read and share with your ped. http://www.pediatricnews.com/views/id-consult/blog/amoxicillin-failure-in-strep-throat/bedfe23ae75bfc7dd86f8bc32c438492.html Most PANDAS parents find Augmentin and/or Azith to be most clinically effective.

 

Also, don't forget to take videos of the various tics to show to docs in the future.

 

Will your pedistrician (and/or your own doc) throat culture the rest of the family (to check for carriers)? That is really important. My younger dd was a strep carrier (throat culture positive, no symptoms) and my pandas dd reacted to that. Younger dd cleared on Azith (but not Augmentin).

 

Hugs! You have a lot of other PANDAS moms rooting for you.

 

I would also keep Dr. L. updated, let him know that your son is doing much better now that he is back on abs...maybe he will change his mind given this new info, and it would be an easy way to get cooperation from dh?

 

Also, before you do steroids (or IVIG) get the Cunnigham test (which knock on wood, should be available in 2 mo.) That test is supposed to be good for telling TS vs PANDAS. Perhaps it will help settle any qualms your husband may have about the PANDAS diagnosis?

Edited September 21, 2012 by EAMom

[kleek3]

Thank you so much for the info ladies! My PED called yesterday. She has encouraged the 2nd opinion and is going to extend the Penicillin until we get into Dr. T. She IS on board and so is my husband at this point. I will call Dr. T today and ask him what he needs from us. Because there hasn't been ANY testing since the initial Strep, I'm guessing he will want Strep Swab and labs. My GP will swap my husband and I no problem and I'm sure with the info I am supplied from here (Thank you!) the PED will happily swab DS5 too.

 

With the Croup onset this weekend he is high strung but I have faith that things will settle. The abx DO make a difference. I am wondering if we hit it a little harder with a stronger ABX, would symptoms lessen. I'm not going to self dx. I will simply throw ideas at the PED. I need for you all to know. I would not even know about a Strep Swab let alone IVG, Titers and any other PANDAS lingo. Thank you! Thank you from the bottom of my heart. Keep you posted.

 

Thoughts and Prayers to you ALL!

 

Kristin

[dcmom]

Hi Kristin-

 

Don't forget advil. Since he is sick I would definitely add 5 days of regular advil dosing to help fight inflammation.

[airial95]

Another thought - since you are still relatively early in this journey - consider logging your son's symptoms daily. We used a methodology that was created by another parent on this forum , where we listed the symptoms and each day recorded a 0-9 based on the severity of that particular symptom each day. We also had his teachers at day care fill it out for us. We then supplementented with notes and other goings-on (change in meds, known strep exposure, positive cultures, etc.)

 

I turned our log into an excel spreadsheet and was able to graph our progress. We added up the scores for each symptom and came up with a "daily score". When we started logging, our daily scores were in the 110-120 (out of a possible 150) range, a little over a year later, we were averaging the mid 40's when out of an active infection. Whenever we saw a score spike significantly, we knew we might be in for a trip to the pedi.

 

It was critical in our meetings with some of the early doctors we went to in getting a proper dx. We knew nothing of PANDAS until our pedi tossed it out as a theory - so we were never accused of "looking" for a dx, but when we saw our neurologist for the first time, while he "believed" in PANDAS, and treated other kids, he was adamant that without elevated titres there was no PANDAS (our sons titres have never been elevated), but changed his tune quickly when he saw our data, and how the sypmtoms spiked with each infection/exposure. Dr. M loved our charts when she first saw them as well. Thought the data was invaluable, and used some of it to write a case history on my son as the youngest documented PANDAS case she had seen at the time (19 months at onset, 26 months at dx, 30 months at our first appt. with her.)

 

It was also helpful for us to identify some key triggers that told us to go straight to the ped to get swabbed (biting, early on, and now wetting the bed - we were always positive when we saw those symptoms present). That alone helped us get episodes under control more quickly.

 

We stopped logging after about 18 months because our son started a special ed program through the school district and no matter how hard we tried we couldn't get the teacher to evaluate him properly. It was hard to keep an accurate daily score without her input - but he started to thrive in her class, so we let it slide.

 

If you'd like a copy of the excel files, PM me your email address and I'd be happy to pass them along. It really was helpful to us early on in our dx to help us figure out exactly what was up.

[AmySLP]

Kristin,

You are on the right track! We are going to see dr. T on the 5th when the kids are off of school. I need to send you the list of labs....may helpful for you to have something to go with for your appt.

 

Amy