kleek3

I can only tell you that Dr. T told us just recently NOT to get the flu shot. Thus far we have avoided the flu in our home. A small upset stomach and a 3 week flare we are in the midst of. We do labs this week to see what the culprit is. I remember Dr. T saying something about the live virus that we need to avoid. Wish i could be more helpful. I just know we are steering clear in this house. Good luck!

Ladies & Gents, I was just sitting outside nearly in tears when I decided to do something pro-active and research so more ideas on how to discipline our DS4. He is in the midst of a similar exacerbation and I have been contemplating medicating him all day today. This is the first time I have EVER entertained this idea. These ideas are so helpful. I will say that the avoidance and hitting are two huge ones in our house right now. Every time I think I just cant do this for one more day....you all seem to help. Not coincidence. Thank you every day for being here...all of you that take your time to share freely. Thank you!

Jenna, I too am wondering how you made out with the Steroids as we are thinking about doing a burst too. KK

LLM, I just want to say thank you for doing this. Right now we aren't experiencing school issues. It's when we return home about 3pm that all h@&L breaks loose. Dr. T used an analogy with us the other day, he said its kind of gross but the tool is effective. Take the Gent who has a habit of picking his nose. He suppresses it all morning at his office, when he gets into his car, he is in a safe place to pick away. This is how we theorize DS4 behavior at school. He behaves the best he can because he knows what is and is not acceptable behavior in class. Then when he returns home he lets loose when he can no longer suppress the behaviors. Not sure where or if this fits your teaching. It has helped me understand a bit more. KK

Landamom, I just googled last night before bed...are Motrin and Advil one in the same? So funny to wake and see your post. We have been doing Advil 3xs daily for a week now. I saw a subtle change, but nothing drastic. We are waiting for Dr. T to send us labs for another blood draw. Contemplating Steroids at this time. I feel your pain. This am I feel like I am pumping this poor child full of an Azith/Augmentin combo as well as (now Motrin...I feared the Advil wasn't cutting it)...and nothing is working. I'm so over this puzzle. Some days I want to throw the towel in ad quit everything! I don't know what the answer is. I did switch from Advil to Motrin and I don't buy generic. Good luck to you! KK

Good Morning Ladies, What great suggestions and Ideas to look into. We (all 4 of us had the original labs) Myco P was a big factor. Lymes was not. Dr. T is running some of the other labs that LLM talked about. In the meantime...I will be looking into the mold issue. I certainly wouldn't be surprised in the bath if this were an issue. I feel a sense of hope. To be reminded of the marathon and not a race is reminded once again. I am a child and parent of instant gratification. This lesson in PANDAS might just be exactly what I need to slow down and stay in the moment. I know you all understand the strong desire to "FIX" the problem yesterday. I often forget about the marathon and take off sprinting after or during a flair. SLOOOOOW DOWWWNN KK! I have plent to look into now. A lot on my conversation with DR. T was reflected in LLM's post. I too am feeling that if the Motrin/Advil doesn't help by Wednesday/Thursday...the steroid burst is an option. What IF the Cunningham Pannel doesn't become available and we all suffer bc of a "possible" lab test. Thank you all for my dose of medicine:) Happy NEw Year to you all! KK

Hello Friends, DS4 has been on a 3 week downward spiral. His tics are in full force. His emotional liability is out of control. We are avoining all sorts of exacerbating situations. People, places and things that may make him uncomfortable are out of the question. We are currently doing a combo of Augmentin/Azith. We had a second phone appt. with Dr T today. Dr. T said that he wonders if there is an underlying something that we are not treating. He is going to test for cocksuckie and strep a as well as other labs. He has us doing Advil 2 tsp. 3xs daily thru Wednesday of next week. If there is a change in him. He may be a good candidate for the IVIG. He also said that a Steroid burst could be given. But, he isn't pushing this as the Cunningham test will be available late Feb and he would like us to do it. Tonight, I feel as if I'm not doing enough. Should I be looking at our house for Mold? Is it Yeast? What is it that is causing this poor baby to react the way he does to life that some (most) children don't react to? I feel helpless, fighting a beast that I can't see. I loathe explaining to NON-PANDAS people that we aren't going to a function because of DS4 behavior. Its a 50/50 chance of what you will get. It's embarrasing when my son is completely melting down, acting out, freaking out. When I KNOW full well this is not my child. It's the illness that brings the symptoms out. Non-PANDAS parents dont get it! I wish there was a book. First do this. Then check for that. If A doesnt work go to B. Add C if B is helping. I know at any moment. Things could always be much worse. I guess I just needed to whine a bit. Mission Accomplished:) KK

Ko's Mom, It is hit or miss with Dr. T. No doubt her is an AMAZING man. He has changed our world:) Maybe the answer is to just ask him or his office staff how I go about changing meds before switching to yet another specialist. I just feel like we could be a little more aggressive and am being impatient! Thank you for your words of wisdom! KK

Hello Friends, DS4 was dx this year in October. We had him on Penicillin from June - October when we switched him to Azith due to Myco P in all 4 of our labs viewed by Dr. T. Neither the Penicillin nor the Azith put him into a "remission" so to speak. In Nov, Dr. T combo-ed the Azith and Penicillin and we saw a 50% improvement. I just refilled both scripts 2 days ago. I have reached out to Dr. T to see if maybe we could do a 10 day Clindomyicin trial bc I have a friend on this forum that has a child with a very similar presentation. The Clindo worked for them...why shouldn't we give it a shot? In the last week DS4's symptoms are in full force. The throat clearing is back with a vengeance, shoulder rolls, emotional liability etc. is all there. Questions are: When you have a Dr. that you have developed a relationship with, and you reach out to talk about a med change...do you schedule an appt.? Do you communicate via email? How do you do this. Secondly, I'm wondering if I need to be seeking a 3rd opinion? I have heard how important it is that if you get this early on...... So if anyone has personal experience with their Dr. and wants to PM, that would be great. The next step for us would be Dr. L. I want someone who is going to be as aggressive as I am in finding a comfortable place for our son. Thank you all for any thoughts! KK

Char, We too have DS4 who has had a vocal tic or two as one of the first signs of "something" being off. I emailed Dr. T and heard back from him within 15 min and had a phone consult 2 weeks later. Good luck with whatever your choice may be! Thoughts and prayers to you and yours. KK

Question for the forum? My husband and I both have the Herpes Virus in us. Would DS4 react to that if one or both of us had a sore? DH and I both noticed last week we had one coming and DS4 had a fever of 103. Went to ER had Strep swab and came back negative. We are sure fever was viral, howeverstill wondering if our Herpes can effect him? PS, he went home from school today early bc he threw up. Definitely thinking viral now... Thanks for thoughts!

I thank you all for the insight. I will use every bit of it!

Hi there! DS4 is 43lbs. the Azithromycin ia 200mg/1xs daily. The Augmentin is 400mg/2xs daily. We have noticed an improvement with the combo. I think I will reach out to Dr. T to se about a higher dose. This is our first bit of improvement since the onset in April 2012. I read about the yogurt and asked Dr. T how he felt about his LOVING yogurt. He suggested weaning him off. I love the idea of Kefir, we will look int it. Thank you so much for the great ideas. Keep you posted with positive reports we pray! KK

Morning, DS4 started on Penicillin 2xdaily in June. Dr.T switched him to Zith in October due to Myco P in labs. Zith was NOT the answer at all. Dr. T then added Augmentin 400/2xdaily to the Zith. We difinitely see progress. Does anyone understand when I say he is talking again? He has been so quiet and indecisive for 6 months now. All of the sudden....he has a voice and lots to say (in a good way). I would say the biggest change with the combo is behavior. However...the tics are still there, maybe 50%. The throat clearing which was our FIRST tic is still strong. His inability to sit still is still present. We are doing the probiotic as well as meds and have weaned him off of yogurt (this was a favorite of his). Trying not to change too many things at once. Question is: The combo helps, do I ask for a higher dose? I am so graeful for the small progress we have had. Should that be enough? It has been so helpful to hear teachers and friends saying I notice a change. Whats next ladies? Thoughts PlEaSe:))) KK

He is not allergic to Penicillins. I am out of town and just FaceTimed him. He is not seeming to be getting better in the ticing department. Also, he has a URI. This could be bring out the tics too. We shall see when I return home. UH! I loathe the fact that I am not there to help him right now. There is nothing I can do from half the world away. Lesson learned, I thought I could go to work and he would hold his own. Either way, its nearly impossible to shelter him from life. I get that. But it seems like EVERY time I have to travel....he gets sick. Home in 2 sleeps:)

Smartyjones:) we were tested for Lyme and all is good there. I'm just so grateful to see your replies and have some info when I reach out to the docs. We are going to add the Augmentin and go slooooow. Thank you again!

Hello All, I was able to reach Dr. T tonight and what we have decided to do is this.... ~We will continue the low dose Zith to try to cover the Myco p ~Starting him on an additional dose of Augmentin tomorrow 2xs daily to see if this covers the Strep Because we had the Myco p in all 4 of our labs, he aimed at it with the Zith. Now that his tics almost immediately returned after the stop of Penicillin 21 days ago, he feels that there may be a Strep that we are not seeing on the labs. My husband and I are both Strep Positive. He also said that bc we are Strep Positive does not mean that we are infectious. I asked how soon we should see a difference with the Augmentin and he said it should be fairly soon. I will keep my fingers crossed, hope and pray for this combo to work. Lastly, he said that a Steroid burst is possible but he is trying this option out first. Amy, you truly are a lifesaver. Sometimes when I am at my wits end with this PANDAS journey....you give me hope again. Thank you for your endless supply of knowledge and willingness to share. I could not fight this fight without having this site to ease my fears. I'm not the best poster, but I sure do read tons of info right here! on a daily basis. You ladies are my meds:))) Hugs to you all! KK

Thank you Dedee! I will Google it! I have to be honest, sometimes the information on the Internet can be SO overwhelming! The Zith didn't ever work looking back. Within 4-5 days the tics were coming back and his behavior was tough to say the least. He goes from fine to high speed to aggressive and irritating to clingy to baby talk to bouncing off the walls to antagonizing...some behaviors quite normal on a smaller scale for a 4 year old. However watching him is like doing it with the tape stuck on fast forward. Tough on all:( We started in April12, first labs drawn OCT12 with the Myco p discovery. KK

Missmom, My husband and I are both Strep carriers. He goes to VPK 5 days so he could be getting something from the other school kids. When you say strep tested, do you mean a throat swab? I emailed and will Dr. T call later this afternoon. Let yas know how I make out... KK

Good Morning All, My DS4 started with a Strep infection in April 2012. Tics, behavior, frequent urination, dilated pupils etc. We saw Dr. L at Yale and was dx with Tourettes. We chose to seek a second opinion with Dr.T late Sept and was dx PANS because Myco P seemed to be the issue in the labs work. He started with prophylactic Penicillin in June 2x's/daily. Some, nearly all of the tics went away - behaviors continued to be an issue. Dr. T switched him to Zith with the Myco P detection and he gave us a script for 3 10 day refills. We just refilled the 3rd Zith script because we are afraid if you will to take him off meds. The twist is this, his tics are back. They seem to be some of the old shoulder rolling and facial grimacing and now, licking, sucking shirts, blankets, and jackets....sometimes licking fingers and then running them on me to feel the wet? Behavior, aggression, clinginess, easily frustrated continue to be a problem. With the storm in the North East, I KNOW how Dr. T and the NY area have been effected as i am from NY. I have tried probably 6 times to email and called the office Thursday to find out if they are in fact receiving my emails. I emailed yet again this am to try to determine WHAT the next step is. If the Zith is NOT working, what do we do? I'm more than anxious to get in touch with Dr.T and am looking for some suggestions what to ask or suggest to Dr. T in regard to a possible med change? Thoughts PLEASE!!! Thank you so so very much in advance! KK

My son definitely gets hyper with any excitement. Birthday parties - hyper, Trick or Treat:) - anxiety, it varies with each situation. I think for us, we are realizing we need to have an out if you will. We try SOME gatherings and if he can't handle it, we leave. The tough decision is which events to attend and which events to pass on. I don't want him to miss out. However, the outcome can be so mentally and emotionally exhausting for both parents and child. It's a tough call. Good luck! KK

Dr. T gave us 30 days of Zith. I will reach out to him. It doesn't help that both boys are getting over a chest cold. DS4 always gets Croup with the common cold. I'm not sure if this is adding to the behavioral stuff right now.

Good Morning All, So, we (all 4 of us ~ DH, DS4, DS5 and I) had labs drawn last week after our initial phone consult with Dr.T. The labs came back and Dr. T thinks that the Mycoplams is the cause for our flare right now. DS4 has been on Penicillin since June 2x's daily. Dr. T says that Myco wont respond to Penicillin so he switched his antibiotic to Zithromycin. DS5, DH and myself have finished meds and now DS4 will continue. The first 4 days were a nightmare. His behaviors were not easy to deal with to say the least. I was hoping for a dramatic improvement but that's not happened thus far. My questions are these: ~DH and I are both Strep Positive. What does this mean in relation to DS4 with the original dx being Strep along with tics, ADHD symptoms and behaviors? Could he have cleared the Strep and picked up a Myco? ~How do DH and myself prevent DS4 from reacting to our Strep? Or is this not a problem unless DS4 gets Strep? ~How soon do we expect a response in DS4 with the change of meds? What Dr. T thinks is that it may be PANS vs. PANDAS? I'm POSITIVE that the onset of this adventure started on or around the dx of a Strep infection April 2012. Now with the labs reading Myco infection, does this mean he is reacting to both? We have another week on the Zythromyicin and will keep the faith. If the behaviors don't change??? Do we change meds? Thanks for your thoughts in advance! KK

Labs are DONE! Thank you for the cream advice. I called our Peid and the script was written. What a difference it made. Both boys after the initial anxiety of a needle made it through no problem. Follow up on the 18th for results. Thanks again to those of you who have braved the storm before us and share your insight so freely! Prayers and hugs to you all! KK

Good Morning! First of all I need to say THANK YOU to all of you that encouraged a second opinion. My DH who was not so happy about this second opinion is completely on board now. After the almost immediate changes in DS4 after removing him from ABX. DH is now saying you lead and I will follow whole heart-idly! So here is what we determined yesterday... Dr. T is convinced that DS4 HAS PANDAS. We (DH, DS5, DS4 and myself) are ALL getting labs done this am. Dr. T was absolutely FANTASTIC. He explained about the possible gene that can be carried in the family. When you put it all together it's a no brainer. We will determine if one or more of us are carriers. We will see what type of infection is streaming through DS4. The Diabetes connection was interesting. He said that the frequency of urination could have something to do with that. I'm not fully understanding the connection but I will further read to educate myself how and why. The main thing is this...we have hope! Once we get him on the right ABX. The behavioral issues may change. Today his tics are subtle and behavioral stuff seems to be the toughest. If any of you have words of encouragement with HOW to calmly facilitate blood labs with DS4 & DS5 it would be greatly appreciated. I have heard rub tooth numbing gel on their arms before visit. How do you all go about lab work? Thank you, thank you, and THANK YOU for all of the input. We WILL get through this! Prayers and hugs to you all! KK