3boysmom

We also had our flight home cancelled again....we are just now leaving our Houston airpost and will be home soon. I got your email and will get back to you soon.

Sorry I missed you too. Hope all went well for you all. It was nice to meet you Denise. Thanks for hangin' with my boys

Great meeting you. Thanks for your patience with our boys, didn't want them to hear our discussion. Best wishes and prayers to your beautiful daughter!

Were here,...we made it! Appointment in one hour.

If I knew that you needed another night at the double tree....I would have contacted you before calling and cancelling our room there for tonight. We are stuck between flights in a dump in Atlanta!

He is going to get us tomorrow if we can get there, but at a different tme

Stuck in Atlanta airport with a cancelled flight and next flight is tomorrow. We will not be there in time for the appointment, hoping for a rescheduel

We are headed to our Houston airport and headed to CT. We have an appointment on Thirsday morning with Dr B for. All 3 boys. I hope you have a positive experience to post! Good liuck....prayers to you, Linda

I am reading this from the waitig area at the walmart pharmacy. Waiting to pick up tamiflu for myself and our 3 boys. ( and antibiotics for me....I have phnemonia) Trying to stay calm, Linda

Oh my gosh...I think you are totally onto something! Constant strep? Kawasaki's? I hope the doctor they are seeing has heard of PANDAS, or sadly it won't get mentioned. Totally worth investigating further! Good luck getting the in-laws to listen to you. You are a very caring Aunt and your neice is lucky to have you in her corner. Linda

The 5 of us are flying to CT to see Dr. B in 9 days. However, the 8 year old (not the one that I write about with a PANDAS diagnosis), has the Flu. This will be our first time dealing with an illness since the bomb of PANDAS hit us last year. Our pediatrician is calling in Tamiflu for the 9 year old and the PANDAS 11 year old. I am not seeing any "flare ups" yet. Has anyone seen Tamiflu cause problems with PANDAS kids? What is in that stuff? Very nervous mom, Linda

Thank you so much! I was losing sleep over the thouht of that child possibly going down the wrong path of diagnosis and not getting help and missing the chance to tell her because of my tech weakness!! I am so overwelmed dealing with this illness in my own boys, but just could not pass up the chance to help. I hope she comes here, because you all are also like that....dealing with so much yet always there with help for others. THANK YOU, Linda

Since Dr. L. diag. our ds10 in September with Sydenhym's Cohrea as well as PANDAS, I decided to google information about SC. When I googled Sydenhym's Cohrea, one of the choices was a you tube video titled "Sydenhym's Cohrea/aka St. Vitis Dance. I clicked on to watch the little girl and read pages of comments. I think the comments began a year ago and none of them mentioned PANDAS (however some made me wonder) The very last comment was dated 2 weeks ago by a person: southernlilly (?-something like that). She commented to the mom of the girl that her child also had the SC movements but wanted to know if that girl in the video had OCD, Emotional issues, anxiety....along with the movemnts (because southernlilly's child did)!!! The mom of the girl in the video said "no". No one went back to that comment...I tried to answer and post a comment just in case she would see it but it said "posting error", so I joined You Tube and created an account...no luck! I tried to go into her pass name and send her a message, but I don't know if it worked. I am terrible at tech things and never even You Tube...can anyone help me get the word out to this person so that her child can get help and not suffer too long before she hears of PANDAS?! Also, it would be great to post a comment about this illness for all the other people clicking in to watch that video. I know this request is a bit "off the beaten path" but can't help thinking how lucky we were to finally get the correct diagnosis and on the correct path with only 6 life changing words..."Have you ever heard of PANDAS?" Thanks in advance, Linda

Kbossman1: How is your child doing? Hoping the positive results are holding out and even getting better! Happy New Year, Linda

Been praying for your family daily...I feel like we are going through such similar things. I pray for us all dealing with this, but then a special prayer for you and your family. God bless, Linda

WOW Sweet cheeks...just read your post. It is exactly how I feel. I have not been able to check back into my old life since the "Sudden Drastic Overnight" change in our son exactly one year ago. I feel like I am watching life from the outside. EVERYTHING has been about this illness and trying everything to avoid the complete loss of our son again. Don't think I have the strength to go "there" again. Now we are faced with the other 2 boys having this...seems like my life is not real....waiting to be awaken. I am constantly amazed at how many tears can flow...I used to never cry. My heart hurts for anyone going through this! Thank you for sharing...Love to you...really. I am going to buy that cereal tomorrow. Thank You

Christmas present to myself. This forum is a "life-line".

We tried Vyvance for 3 days before we knew about PANDAS. He only got worse and so we went to Prozac and he got even more worse. (Grammar?) We then heard about PANDAS and he was put on Augmentin XR and slowly removed from the Prozac. Remember though, our son was not on antibiotics while we were tying Vyvance and Prozac and was getting more ill because of the untreated PANDAS and then began the Sydenham’s Chorea. I asked Dr. L about attention meds and she would not give us any. Told us that Vyvance was a stimulant and that is not good for PANDAS. I asked about Strattera because I heard it was not a stimulant, but she gave a 30 pres taper and said that he may need IVIG. On another note….when the attention issues began overnight, the Vyvace is what I asked the doctor to give him because I teach and have seen so much improvement with little side effects on students that are on this medicine. Our Principal and diagnostician have their children on it as well as my niece. All are doing great on it…but they are not PANDAS kids. I think about how I stressed over that decision and now wish it would have been the “simple” fix instead of the complication that it has become.

Thank you for the prayers. We are actually flying the 5 of us from Houston. We live in the Houston area. (Dallas is where we went for the Christmas party.) Yes, it is expensive!

Well, we also anxiously await a visit to Dr. B. He made me cry this week also! We were not his patients when I called hysterically to make an appointment after test results came in that seem to confirm that we don't only have one PANDAS son, but 3 PANDAS sons! He called me back and was so reassuring. We fly to CT at the end of January. Prayers to you and your family and prayers that both of our families can be helped by this caring doctor! Linda

Dear Fixit, I know just how you feel. I am not a newbie at this either, but find myself in the same shoes. I have been posting the list of things that Dr.L asked us to take care of after our visit a few months ago. She informed us of the high sibling rate (I had never thought that the tics that the brother had and the strange night terrors that the other brother had were in any way connected to this), to test/treat the dog, titers on the 5 of us, Cunninghams test on the 3 boys, steroids on the PANDAS son, and T & A surgery for the 2 brothers, and culture the tonsils. Slowly we have been doing these things one at a time...always negative rapid and 72 hour strep tests: tonsils on the non PANDAS sons cultured positive for strep, titers on the 2 non PANDAS sons: 500s and almost 800, Cunningham test just came in very high on the the 2 non PANDAS sons and consistent for PANDAS and SC for the diagnosed son. Our first son had overnight PANDAS on Dec. 11th and we were in Dallas at my husband's company Christmas party. This year's party fell on the same weekend and on the same date, Dec. 11th. I did not want to go as I was already suspecting that I was suffering from Post Traumatic Stress with the anniversary of this illness. On the way to the Christmas party, on Dec. 11th, is when we got the other 2 boys results in (via email on iphone). Felt like "Groundhog's Day" That night I woke up throughout the night with this hyperventilating type breathing, I began pacing and shaking and then threw up. Tried to get a call back from Dr. L and then called Dr. B. I could not talk when the sweet lady answered the phone. I blabbered out that I think that all three of our sons have this &$%!@ illness and she could barley catch what I was saying. A few hours later and Dr. B. actually called me (I think he could have been on his car phone)...and we were not even his patients! He said to convince our pediatrician to put the other 2 brothers on Augmentin ASAP and to get an appointment with him as soon as we could. He said that they were probably PANDAS also! And, the PANDAS son may need the IVIG, which is also what Dr. L said. We have an appointment to see him in 4 weeks, our pediatrician agreed to put them on augmentin, (but our pharmacy only does generic (Amox) when in liquid form) until we fly to CT. All this to say...I would fill the prescription. I will keep your family in my prayers and let you know what the game plan is that Dr. B. will propose for the 2 brothers that are probably PANDAS. THAT WAS HARD TO TYPE for the first time! Please pray for us as well. The boys are 8, 9, and 10. Thanks, Linda Needless to say, I went to the doctor and he said that what I had that night was a panic attack! He gave me a prescription for Lexapro and Zanax. I have not filled them yet, not sure what the Lexapro will do for me, as I want to be clear headed for any decisions that need to be made.

I'm sorry, I don't remember all of your "history". Do you go to a DAN doctor? They can be very good about finding other issues that are pieces to these illness puzzles, especially the post immunizations problems. Don't give up in finding answers! Blessings, Linda

Awesome! Thanks!

How is your DS today? Been praying that this is a good sign for her. Also, the sleep is so precious to us ALL! Prayers that today finds you all getting sleep!