saidie10

great story! enjoy the mess!!!!!!

thanks for the replies guys. i am going to the call the doctors case worker on Monday who handles all the pre-approvals. i will also talk to one of his charge nurses to discuss my concerns over this...since i know i can't get the doctor on the phone!!! anyway, some other ladies on the board are going to give me the cpt codes that dr. k and another doctor in dallas used and both used PANDAS but also used what you guys are talking about I guess when it comes to autoimmune disorder/immune deficiency, and or infectious encephalopathy. so i guess we will see!!!!!

I know that the Immune Deficiency should get him coverage but this Doctor said we will put PANDAS as that is what we want to get coverage for...that is what we are treating. He is very "ethical" and I don't know if he is going to budge on that! I am afraid we risk not getting coverage because of that!

IVIG is scheduled for August 4th. We are very excited and hopefully on the road to recovery for DS7! We saw a Pediatric Immunologist/Hematologist who works for one of the major hospitals in San Antonio in their Cancer and Blood Disorder Unit. He is also a Professor at the UT Health Science Center in San Antonio. This guys reputation is huge! He has been doing IVIG for 25 years and this will be his FIRST IVIG for PANDAS! He knows Dr. Swedo as he was invited by the NIMH to serve on a committee in 2000 to review some of Swedo's research on PANDAS. He also knows Dr. Cunningham personally and said she is a first class scientist who knows her stuff! So basically he did not take the boys Cam Kinase tests lightly and found them to be very compelling. I discussed our phone consult with Dr. K which confirmed to us the PANDAS diagnose and told him his treatment recommendations. He said that the dose for the IVIG looked about right in terms of what he would do, but he said he doesn't know about the value of treating with long term preventative abx after IVIG. He said he would look further into it though. I need you guys to please send me any articles you have found that support this so I can send them to him! Unfortunately it is still a wait and see on my younger son, but we are so thankful to be moving forward with treatment for my older son since he is so much further advanced.

Just wondering if anyone was successful in getting coverage for IVIG for PANDAS under Blue Cross Blue Shield of Texas?

Brandy, I am so happy for you and your sweet little boy!!! I can't wait to see how things progress!!

I'm sorry for not being more clear. What I mean is LOTS of productive green mucous from her nose and throat. Not an anacroynm for anything else. Just phlegm. In the beginning of May, she had so much she could repeatedly fill a towel with it. (Sorry, I know it's gross;-( ) Now it is more manageable, but STILL there after two and 1/2 months. Thanks! Welcome! Sounds to me like a very very nasty sinus infection. It is my understanding that strep can colonize in the sinuses as well as the throat.

So glad you were able to be there Brandy! Sending positive thoughts your way for a wonderful experience tomorrow and a speedy recovery for your little one! We will need to talk tomorrow night!

This is great guys! Thanks so much. DH and I will listen tonight. I may even forward the link to My in-laws and parents as well!

This is GREAT advice! The only thing I would add, is to listen to his VoiceAmerica interview before your appt. Get his basic lecture for free fresh in your head and you will be better able to recognize when he is going down that road. So many parents... he has to assume you don't know anything unless you keep the specific questions coming. This is awesome advice thank you all so much!!!! Where do I find the VoiceAmerica interview?

We have a phone consult with Dr. K on Wednesday. We could only get 30 minutes this quickly but we will take what we can get! We wanted to speak with him before the boys appt. with the new Immunologist we got referred to in San Antonio that is scheduled for Thursday. We suspect he will recommend a Steriod Burst on the oldest followed up with IVIG. He is the one with the immune deficiency and clearly elevated antiD-Nase B titers in response to exposure to his brothers strep in May and we saw a definite increase in symptoms during this time. Cam K was 164, along with abnormal anti neural titer antibodies and some abnormal readings on his urine tests. As for the younger son whom we think experienced his first PANDAS episode with this last strep in May, his Cam K was 179 but his other bloodwork does not have any clear abnormalities. His urine tests did though. Not sure what he might recommend for him. I was just hoping that anyone whom has had a phone consult with Dr. K or any of the other PANDAS "experts" could let me know any mistakes they made, or questions they forgot to ask. I want to be as prepared as possible to make the most of the 30 minutes. Thanks so much!

I am glad that you received the results and that they help to explain what you have been experiencing - even though it is not good news. I wish you well as you make a plan and navigate through the system. Phone consult with Dr. K Wednesday and new Immunologist appt on Thursday. We hope by Friday to have a plan of action!

I will say a prayer tonight for your little one. Great job Mom...he will be fine! Sending positive thoughts for a quick and complete recovery!! Call me and let me know how he is doing.

Extremely abnormally large pupils in my boys, especially during an episode. I actually had to take pictures in May of my youngest. I believe it was his first full blown episode and the first five days after testing positive for strep he had all the crazy symptoms and his pupils were extremely dilated in comparison to his brothers in the same light, same standing position and camera position. CRAZY to look at and then add the baby talking and yikes...kinda of creepy and makes you feel so sorry for them!

Welcome and you have come to the right place for answers and support. I know some of the parents whose children have been treated or are currently in treatment can give you some advice. I am still waiting for my doctor to tell me what the next step is since the diagnosis. Good luck and I hope you find the answers you are looking for!

Congratulations! It is wonderful that you are seeing improvement! Sending positive thoughts your way for continued success!!!

I have contacted the National Support Group Coordinator through Beth Maloney and am looking to start a support group in the Austin/San Antonio area. I live in San Marcos. Would love to see what interest there is on the board in this area to attend meetings. Would love to see if anyone wants to be a part of helping me get things going too? Just let me know! I am going to start looking for a place to hold the meeting. Not sure if I should start one out in Austin or San Antonio?

DS7 cam kinase 165 anti-lyso 160 (80-320) - mean is 147 anti-tubulin 2000 (250-1000) mean is 609 dop 1 - 1000 (500-1000) mean is 1056 dop 2 - 16000 (2000-16000) mean is 6000 DS5 cam kinase 179 anti-lyso 80 (80-320) - mean is 147 anti-tubulin 500 (250-1000) mean is 609 dop 1 - 1000 (500-1000) mean is 1056 dop 2 - 2000 (2000-16000) mean is 6000 When I spoke with Kathy about these she told me that you take the mean and double it. If your childs number is above double the mean then it is considered very high. What the numbers actually mean, well that I do not know! I very high really bad or is very low really bad? I guess since still part of research we won't learn what it all means for awhile.

Anti-lysoganglioside was 1200. I love shocking the heck out of people with that one. Faith's son h ad the same number. His two anti=d were bottom of normal and top of normal. That number is shocking! Holy Cow! I don't really understand what all the numbers mean, but jeez, that is high!

\\ Melanie, I am sorry you are struggling. I wish I could reach through this computer and give you a big hug! I am sorry your son is regressing right now and I know you really want to help him. It sucks you are trying to make such a hard decision. Wish I had a perfect answer for you. You will make the right choice and be confident that you are a great Mom who is helping her son and he will be thanking you one day!

Ds7 was 164 and ds5 was 179. This is very bittersweet and very scary. My youngest son is the one who we think had his initial onset of symptoms in April. I am quite shocked his was higher than his brothers but relieved as his other bloodwork was not as clear cut for pandas as his older brothers is. So now we are in reactive mode for ds7 and proactive mode for ds5. We need to fix the trainwreck that has occurred in my oldest sons body over the last two years and prevent my younger son from getting any worse. Can you say terrified?

This wait is KILLING ME!

you lost me girl, although it was very interesting reading!!!! LOL no really, I can see some of your points and understand the frustration!!!

Yippee! This is great news Brandy. Glad to hear from you. Keep me posted and I will call you tonight when I get Cam K.

Sorry you guys are struggling. I wish I had answers for you but I am trying to figure it all out too?! This is all completely confusing to me and I worry more and more each day too that I will not find the right solution for my son. Good luck and don't give up!