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

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sleep, really started noticing the extreme attachment to Mom, family vacation and DS4 is just not acting like himself, withdrawn, intolerant of other kids ~May 2012 - Strep Dx, within a week he is having multiple tics, head and shoulder rolling, spinning on one foot, urinates in his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

Wow! So many responses I don't even know where to begin. We saw Dr. Leckman at Yale. He was absolutely fantastic. I was confused bc the tics strep and the behavioral issues all came in a very quick period of time. I haven't read through the leaflet that Dr. Leckman gave us connecting Strep with TS however there is a wealth of information and I feel I need to read, read, read. I emailed Dr. T in NJ today asking: - DS4 has only been off meds for 3 days and behavior is going backwards to say the least. The shoulder rolls are starting again. Is this coincidence? Could this be in relation to just going back to school. High stress? Should I get a second opinion? Dr. T simply said that PANS comes on very quickly and it's important to treat it promptly. I then reached out to my husband and told him I emailed Dr. T. He was quite angry. I'm just scared. I want a solution. I want my son to be the way he used to be. My DH said he is NOT the same, you are looking for someone to give him a pill and make this go away. It's not going to happen. He asked did I believe in Dr. Leckman? I thoroughly do. I know he is the best. I think the strep link is throwing me off and I need to read more. Dr. L said that the reason he does NOT fall in the PANS category is bc he lacks the OCD. I'm scared girls. I can't fix this and to be frank sometimes don't even want to be around him bc the behavioral issues are so out of control. I also learned from Dr. L that the only way to help Brennan is to educate and change our parenting. The tics don't hurt. You are hurting him by coddling the behaviors. He is ok, now learn to deal in a productive way with the ADHD. I know I didn't answer each and every question. I will go back through and try to fill in any blanks. I thank you for all of the bits of info. I picked up explosive child and am smiling bc some points are soooooo close to our family life right now. Be Well! Talk to you all soon. Night! KK I will add that there weren't ANY tests per say done at Yale. We filled out endless docs on history of DS4 as well as family history to include pregnancy, labor and delivery. No blood tests have ever been ordered. I also will add that Dr. Leckman said B didn't meet the PANS criteria bc he didn't have OCD. This is what is so hard for me to comprehend. If you pull out the PANDAS criteria, my son fits the mold. I have to go with my husband for the next week and watch. Next Tuesday we will revaluate and make another decision.

Hello, My name is Kristin and I posted last month as we awaited a dx for our DS4. We traveled to Yale yesterday to see Dr. L and his dx was classic Tourette's. From what I understood, DS4 lacked the OCD portion of the PANS dx. We are so happy to have an answer finally. We have stopped the antibiotics as of yesterday and shall wait to see what happens. In the meantime, Dr. L has given us a list of activities to involve him in to help with the Tics/ADHD portion of his dx. Thank you for the support. We shall educate ourselves and let the chips fall as they may for now. KK

Oh! You have no clue the tears to see the replies! I now know we are not alone. I thank all three of you from the bottom of my heart for taking the time to hear me and respond. I certainly will keep you all posted. Thank you, and best of luck to you as well!

Hello, My name is Kristin and I'm so grateful to have found a place where I can once again use the common bond to make it thru tough times. You see, I'm not a newbie to msg boards...I used another site similar to this one to make it through my DH fight with Cancer. I'm happy to say almost 6 years have passed and we are doing very well. Cancer FREE as of last year. This time around, I post for my DS4 who at this time is in the process of being dx with PANDAS. It all started in April this year when B started a shoulder roll. I thought his shirts were too big, so I got out last years smaller size and that didn't fix the problem either. We went on a family vacation shortly after the shoulder roll started and he just wasn't the same B. Upon return, he was dx with Strep after a week of high fevers and a miss dx in the local ER. We treated him with antibiotics and then the real changes started to take place. Throat clearing was nothing new. He had been doing that for a year or more. The neck rolls, the frequent urination the repeating of words, Mom, Mom, Mommie, the nose sniffing, finger and toe nails peeling off. The list goes on... I took him to the local Peid and they said he will out grow this. My DH and I KNEW there was something off. You see, I could learn to deal with the Tics. It's the behavior side of the PANDAS that seems to knock you off your feet just when your least expecting it that we are suffering with right this minute. I asked the PA about PANDAS and she followed up with the DR and they said we will refer you to a Neurologist. We saw the local Neurologist and at the same time I was on a mission to get someone to listen to what we had to say. This child was clearly not the same as he was in March of this year, and no one can tell me it's just going to miraculously go away. When we saw the Neurologist, he did in fact say that going to Yale to see Dr. L was perfectly right. AHHH! Finally, someone could see what we as parents were seeing. After a long wait, with symptoms coming and going, after being on Penicillin for almost two 1/2 months now...we head East to see the specialists. In the last week, the behavior issues, ie. hitting, flat out destructive behavior countered with baby like whining has started to rear its ugly head. Our DS pushed Daddy to his limits this am and I'm holding my breath for a possible solution. Some days I feel like the only thing we say to him is NO, STOP, & DON"T! Choices B! Let's make good CHOICES! I fear that his little brain in his spaced out eyes sometimes just don't know HOW to make a good choice. The clinic coordinator at Yale has assured me after the countless pages we have filled out, the videos we have shared, and the episodes we have explained have us in the right area. I pray that there is a solution. I pray that in less than 2 weeks we may find a light at the end of this crazy and multi colored tunnel! Maybe I just needed to vent. I thank anyone out there who may hear...until next time.