saidie10

interesting. thanks for sharing. i would be curious about this test too!

DS7 diagnosed in June 2010...first tic was June/July 2008. IVIG this week! Younger DS5 is following in big brothers foot steps...tested 179 on Cunningham.

Have you talked with his doctor? I hope it stops soon! Poor thing. I wish I had an answer for you....maybe someone else will have an idea of what may be causing it.

This is so amazing!!!! I can't wait to pass this on to all the doctors we have come across who say they must practice "evidence based medicine". I can't wait until every child that walks into a pediatricians office presenting with PANDAS symptoms test for strep and investiages it further instead of sending them on the Neurologist to get on psychiatric medication! This is one step closer to that for sure! BRING IT ON!!!!!!

this is great! thanks so much. i am going to print this and go through it with my son who is having IVIG next week!

DS is having IVIG with a San Antonio area Immunologist next week. We saw his referred Pedi Neurologist today and after an hour of visiting my DH asked him "if he were your son, what would you do?" and he said "IVIG". Boy was that such a relief to hear...we have been very anxious about this upcoming week and the reassurance was music to our ears. As a reminder, this is the first IVIG on a PANDAS case for this Immunologist who has been doing IVIG's for 25 years. We are nervous but hope it will bring some much needed attention to PANDAS in this area and provide more PANDAS friendly doctors for those of us in Texas to see. The Neurologist said that he believes PANDAS to be a subset of SC. I don't care what he believes it is a subset of or not, just that he believes it is real!!! I think this Immunologist who knows Swedo and respects Cunningham's work is really interested in my son as a case study for him. I trust him fully and am fine with that, as long as my son improves and gets the best care, if he wants to talk about my son with others doctors, that is fine with us! If it raises awareness of PANDAS and treatment options that can work that will be wonderful for other families! We are still waiting to hear whether insurance will approve it. He has one heck of a Case Manager on it though. She is a piece of dynamite this one and has already threatened to contact the State Insurance Board if they don't approve. The diagnostic code used was Autoimmune Disorder Not Otherwise Specified. His office visit was covered under that so I have to believe they are going to cover it. The doctor wrote a wonderful cover let requesting predetermination of benefits and included case studies, etc. We are nervous and holding our breath until the phone call. They quoted about $10,200 for the IVIG. Yikes, but we will do it regardless. His health is worth everything to us! Last thing is a question for you guys. Because this PANDAS thing is new to this Immunologist, he still doesn't understand the need for abx post IVIG. How do I convince him of the importance of this? He won't talk to Dr. K since we have only had a phone consult with him and he has not physically seen him. Does Cunningham feel this is important or not? He has said he greatly respects her as a scientist. Do any of you guys have any advice on this?

Thanks for these links Vickie!

I sent you a PM...

Mandy, so sorry you are dealing with this! So sorry for your little girl too . I wish I knew something about schools and IEP's, etc...I know NOTHING so it would be very ignorant on my part to give you advice on this issue so the only thing I can tell you is to stick to your guns and don't give in! I hope you find the help you need to resolve this issue!!!

I try to remember to check the NIMH often for updates on PANDAS, especially treatment optioins. They show the website was updated July 22, 2010, plus it looks completely different than before. I can tell some stuff was added about symptoms and diagnosing recently, but the following is new too, right? This is moving in the right direction if so! (the following was copy and pasted from NIMH section on PANDAS) Q. What about treating PANDAS with plasma exchange or immunoglobulin (IVIG)? A. The results of a controlled trial of plasma exchange (also known as plasmapheresis) and immunoglobulin (IVIG) for the treatment of children in the PANDAS subgroup was published in "The Lancet", Vol. 354, October 2, 1999. All of the children participating in the study had clear evidence of a strep. infection as the trigger of their OCD and tics, and all were severely ill at the time of treatment. The study showed that plasma exchange and IVIG were both effective for the treatment of severe, strep. triggered OCD and tics, and that there were persistent benefits of the interventions. However, there were a number of side-effects associated with the treatments, including nausea, vomiting, headaches and dizziness. In addition, there is a risk of infection with any invasive procedure, such as these. Thus, the treatments should be reserved for severely ill patients, and administered by a qualified team of health care professionals. The NIH is not currently conducting any trials with immunomodulatory therapies, and so is not able to offer either or the treatments. Of note, a separate study was conducted to evaluate the effectiveness of plasma exchange in the treatment of chronic OCD (Nicolson et al: An Open Trial of Plasma Exchange in Childhood Onset Obsessive-compulsive Disorder Without Poststreptococcal Exacerbations. "J Am Acad Child Adolesc Psychiatry 2000," 39[10]: 1313-1315. None of those children benefited, suggesting that plasma exchange or IVIG is not helpful for children who do not have strep. triggered OCD or tics.

It is wonderful that you persevered to help your son!!! I would think he would need to be on some type of preventative abx when school starts if it is working so good for him. Be sure to find out about that to help keep him protected!

This is such great news Brandy! I am so happy for you and your little one!!!

Brandy this is terrific news! I am so happy for you and your little boy...well your whole family!!!! I am so sorry I didn't get to meet you while we were in town. I am sure there will be more time soon though! Keep us posted on all the improvements!!!

The Immunization thing is something I have not even thought about. I guess I need to do some research as to whether we need to be considering stopping them too. Do they cause exacerbations? Trigger PANDAS even? Is that what you are worried about with your youngest...it triggering things for them? Sorry to butt into your post with questions! Hopefully some others will offer some good advice from personal experience!

We are seeing a Immunologist in San Antonio who is doing our sons IVIG in a couple of weeks. This is his first IVIG on a PANDAS child after 25 years of IVIG;s on sick children for many types of Immune and Blood Disorders. He is stepping outside of the box so to say but doing so because he does believes in PANDAS, knows and respects Dr. Cunningham and Dr. Swedo, and really does seem to want to help us. He does not however see the need for ABX post IVIG. How do I convince him otherwise? Anyone know of any good studies showing the need for it? I could possibly see the first Immunologist we saw in Dallas about the ABX but I really want this Immunologist in San Antonio to really get on board with the full treatment of a PANDAS child as I know it will benefit other parents searching for Doctors in this area! Any advice is appreciated!

Oh no poor thing! I wonder why this is happening all of a sudden. Bedtime fears were not one of his PANDAS symptom pre IVIG?

We have not experienced this type of PANDAS symptom. So sorry to hear this. Lots of good advice posted. Keep us up to date!

This is awesome!!!! Many many congratulations and positive thoughts for continued improvement. I am so very happy reading this!!!!

I found this on the PEPSI Refresh Facebook Page about Dr. Cunningham. When I read the last sentence it was like, "oh, that is why there is so much dopamine going on in my DS7's brain." Anyone else's PANDAS child have the high Dopamine levels? What treatment worked for your dear child if they have had treatment. Thanks for any input... A quote from Dr. Cunningham: "We measure the levels of antibodies against the neural antigens lysoganglioside, tubulin and dopamine receptors D1 and D2. Antibodies against these neural antigens may be elevated in the blood of children suspected of PANDAS, Tourette’s Syndrome or Sydenham chorea. We also test for activation of CaM Kinase in neuronal cells in culture. Antibodies may induce increased signaling of neuronal cells and cause release of too much dopamine in the brain."- Dr.Madeleine Cunningham Here is my DS7's Dopamine Levels. Kathy Alvarez with Dr. Cunningham's office told me that you double the mean, and if the patients score is more than double the mean then the result is considered very high. His Anti-Neuronal Antibody titer for DS2 was 16000. Normal Mean was 6000. Has anyone had the Neurotransmitter Test from NeuroScience? All but one of his Neurotransmitters was elevated and his Dopamine was 451.7 with the optimal range being 125-175 and the reference range being 48 to 435, so his was EXTREMELY elevated. Just curios what others are seeing in their testing. Thanks!

So my DS7 has really been having an increase in his anger and raging behavior. When he gets fixed on something, wants something he can't have, can't decide what to eat for breakfast, or is angry at his brother for something he gets so angry. Fingers clenched and knuckles white, heavy breathing, anger in his eyes, will hit at me, screaming so loudly I swear the next town could hear him, etc. Lately he has been holding his breath until he is beat red and about ready to pass out. I can not get him to stop. Today he finally did pass out. He fell before I could get to him and hit his elbow and lower back on some rocks. He definitely passed out. This new behavior is really scaring me. His IVIG got moved to August 18th. It can't come soon enough.

I am sorry you are going through this Both of my boys raging behavior is hard to deal with. Try Motrin if you have not...it really does take the edge off my little boys raging behavior.

So sorry to hear what you went through jay jay and what you are going through tpotter. We will find out this week if our son's IVIG will be covered. I am so nervous. I saw you posted about United's parent company, Golden Rule and I think it is so crazy that some insurance companies are covering it specifically for PANDAS while some if you even mention it you will be denied! How is it that some do and some don't? Shouldn't there be some type of universal thing going on here? How can one cover it plain as day if needed for PANDAS and another say "oh that is experimental?" None of this makes any sense to me. The thing for us is that my youngest son is on Golden Rule with my DH and I and my older son who is scheduled for IVIG in a couple of weeks is still on BCBS because we did not try and move him after the Neurologist diagnosed him with Chronic Motor Tic Disorder last year...which obviously we now know he DID NOT and DOES NOT HAVE (uuugghh and I even asked this Neurologist about PANDAS several time and always the same answer...no, so rare, etc). Our broker told us he would probably be denied so we kept him on his own policy since he was in essence grandfathered in. Ironic huh?!

We discussed my youngest son with Dr. K during our phone consult with him and he said that only time would tell. I don't think he puts a lot of weight in the Cam K score and since he did not have elevated titers and no immune deficiency "yet" he would not recommend treating at this time. I was very frustrated to say the least because he had not seen the Dr. Jekyl and Mr. Hyde child I did during his last bout with strep. Motor tics of the hands, wrists, ankles and toes, separation anxiety and unfounded thoughts and fears. CLASSIC PANDAS presentation, but other than his Cam K and one elevated Neurotransmitter, Dr. K said no ABX at this time and that we would treat him if anything further developed. I don't think it is fair to my DS5 to just wait and see if anything further develops! I am hoping the first Immunologist we saw will prescribe a steriod burst or ABX for a period of time to see if it helps with the still raging, angry, aggressive, and easily frustrated behavior we see. I know anti inflammatory's help because Motrin does give him some relief from his wild behavior. He actually calms down! Not sure where we will turn if no help from him. Maybe Dr. T or Dr. L?

Hey Linda thanks! Continue to keep us posted. I can not wait to walk into my son's "old" pedi office and hand him this white paper and then hand him my walking papers!!! This is the man who promptly directed me to a neurologist over a year ago when I saw him while my son had just had strep and was presenting with tics and I asked him about PANDAS and the strep connection and he said "no, it's not that, that's really rare, etc". I want so badly to walk into his office now and say look at his bloodwork; look at his Cam Kinase; look, listen, care!!!! I probably could have treated my son with a strong and extended antibiotic at that time since it was so early, and we possibly would have never got to the point we are at now! If only he had listened...what a shame! Shame on him and on any other doctor who is sending kids who come in and present with sudden tics/OCD, etc to Neurologist to medicate them unnecessarily. Shame, shame, shame!!!! Do you sense my anger!!! And while I am at it...I hope that this revelation or new publication, etc, does put everyone on notice; pharmaceutical companies, insurance, doctors, etc. Us PANDAS parents don't give up and they are about to have a lot more of them on their hands! I will relish in the day that a strep culture and/or necessary blood tests are routinely ordered for any child coming in and presenting with neurological conditions that they had not otherwise had. Ok, I will get off my soapbox now!!

What you say below is the only thing I really understand but thank you, thank you for all your hard work!!! "4. Something about the TLR signaling pathway activation leads to a common neurochemical change resulting in tics, OCD or a rage-like syndrome. This will ultimately link to CaM-dependent signaling, i.e. CaMII kinase (see Fig.2) - so it all fits" Thank you for sharing this...both my sons tested above 164 on the CAMK test. No one wants to do anything for my younger son though since he doesn't have an "immune deficiency" yet (although he is only 5 points away from being deficient) or elevated titers. He had tics, OCD and RAGE LIKE behavior during both previous strep infections. I am terrified for school to start as I know any given strep infection that follows is the one that could send him over the edge of reality! Our oldest son is scheduled for IVIG in a couple of weeks. It all fits together now with my youngest son. He also has elevated Quinolinic which could be due to inflammation because of recurrent infections. Something is happening in his brain and I want to stop it before it progresses any further! How do I convince a doctor to put him on antibiotics or help him before we end up having to do an IVIG on him as well down the road!