jayjay

We are scheduled for IVIG on Wednesday and Thursday. We are in CT so we won't be staying over but stop in in see us!

Your school nurse was way out of line. I can only imagine how angry that would make you. Although I have been told some very wrong things by some dr.s, at least it is their job to diagnose. It is not her job to diagose or judge. This thread has made me realize how lucky I am that my son is in a school system that understands. I have to share with you an email his school nures sent to me last week after my son had a very difficult day... Hi Jodie, Please know that if you send him to school, regardless of his behavior, he is adored by all of us. He is a very special young man. He comes in daily to get crackers and I always love to see the smile on his face. Please don’t think that anyone would ever judge him if his behavior becomes difficult d/t PANDAS. We are all here to help him through this. We are also here for you. Please feel free to call and vent if you ever feel the need. I have an 18 yr. old son and a 17 year old son. My 17yr. old was a very unhappy child and acted out quite frequently at school. I too dreaded picking up the phone when I would see the MPS phone#. At that time, every call, every behavior was so enormous to me, as this is my child and I wanted him to be sooo good. At that time he just wasn’t able to hold it together at times and he did the best he could. NOW, looking back on all of this, it is so inconsequential. He is a wonderful young man, my angel in fact. (IF that isn’t a lot of pressure). Even in ninth grade at Hand he once jumped out of a cabinet to scare the teacher. What a rascal. I can’t stop smiling when I see that image in my mind, I know I shouldn’t, but life is too short. So the message I am trying to convey is that what seems large and so significant today, will be so small and insignificant years from now. He couldn’t be in a better school environment and more cared for then he is here. Have a fabulous day and don’t worry. You can get through anything. I consider my son's school nurse an angel on earth. She talked me right off the ledge that day. She went way beyond her job description but in a caring and compassionate way. I'm not sure your school nurse knows how offensive her email was. I've been in this PANDAS world long enough to know that there are people that "get it" and people that don't. I have wasted a lot of time trying to convince the doubters. I'm not sure anything you say or send to her will change her mind. Like the others said, she would have never done this with a child with diabetes or epilepsy. It is so very wrong and I am so sorry that you have to deal with this.

Malke, I have been in this PANDAS(now PANDAS & Lyme) world for the last 6 years. Funny thing is that I have been my own biggest doubter. What you know, that I did not know 6 years ago is that PANDAS exsists and you know your child suffers from it. I spent years second-guessing myself, listening to the doubters because I was one myself. Dr.s told me it was a discipline problem, Oedipus complex, explosive child, autism. You name it; he was diagnosed with it, when the whole time my heart kept telling me it was something biological. Overnight, my son left me and no one could tell me how to get him back. I have said this before, but how ridiculous is it that I bought into what they were saying and went to parenting classes for my 5th child! I have learned a lot on this journey and the most important is to listen to your heart. And just when I was starting to trust myself, I had to face things like denials from insurance companies and pediatricians dropping my son from their practice because they “doubted” it was PANDAS or Lyme. Plug your ears when the doubters start to talk. Just never doubt yourself. Your child is counting on you. Everyday I have to remind myself what my son’s LLMD told me when the doubts started creeping back in. He said “don’t just listen to your heart, but believe it with conviction. That is when your son will get well.”

My son's LLMD and immunologist believe that IVIG and Lyme treatment compliment eachother. He has had three IVIGs since starting Lyme treatment and is doing well.

My son has had 4 hd IVIGs. 2 of them after starting Lyme treatment. He is scheduled for another in April. We did not give him steroids before and he did fine. With each IVIG he has had less and less reaction to it. For example, the first IVIG he was horribly sick with, migraine, nausea, vomiting for days. His last one he had a mild headache and was back to school the next day. We have seen very positive results. Bumpy, but definitely headed in the right direction.

My child has: Lyme Chronic infection Chronic Strep Significant Immune Deficiency No known current infections LYME, BARTONELLA, HIGH STREP TITERS What group is you child in? Group 1 - my child only reacts to strep. other illnesses do not cause exacerbation Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy) Group 3 - my child reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baseline Group 4 - my child exacerbates, but we cannot tell what the tirgger or pattern is with the exacerbation. Group 5 - other presentation (describe) MY CHILD HAD 3 DISTINCT EXACERBATIONS WITH ILLNESS BUT RETURNED TO BASELINE UNTIL WE GAVE HIM THE FLU MIST. NEVER REALLY CAME OUT OF IT UNTIL TREATED FOR BOTH PANDAS & LYME. If you had a Cunningham's test - what was the Cam K, and which anti-neuronals were elevated? CAMK WAS 150.(BLOOD FOR THAT WAS DRAWN ON DAY 15 OF A 21 DAY PREDNISONE TAPER) ANTI-TUBULIN AND ANTI-DOPAMINE 1 = ELEVATED. ANTI-LYSO. AND DOPAMINE 2 = LOW What symptom group would you put your child in: tics only ocd only tics first, and ocd came later ocd first, tics came later completely balanced NOT SURE How many symptoms do they have at baseline? (list them next to the appropriate group below (see reference list below) N/A - they don't exacerbate - its always pretty bad one 2-5 - ANXIETY, OCD 6-10 10+ How many symptoms does your child have in exacerbation? (list them next to the group below) one 2-5 6-10- VOCAL TICS, OCD, ANXIETY, DECLINE IN HANDWRITING, DIALATED PUPILS, RAGES, ODD, SUICIDAL THOUGHTS, SELF HARM (BEEN TOLD THE LATTER TWO ARE SYMPTOMS OF BARTONELLA) JOINT,FOOT PAIN CAME AFTER FIRST IVIG. 10+ List of symptoms to pick from not limited to : tics, obsessions, compulsions, add/adhd, dialated pupils, urinary frequency, phobias, anorexia, body dysmorphia, reassurance questions, regressive behavior, rages/tantrums, insomnia, nightmares, hallucinations, bedwetting, separation anxiety, decline in math or handwriting, depression, extreme irritability, emotional liability, or other. What is your current treatment, and how is it working? Please note if your child had ivig or PEX prior to the treatment and what the results of that were. CURRENT TREATMENT- AZITH.,MINO., & IVIG EVERY 8 WEEKS. WE HAVE SEEN THE MOST IMPROVEMNT SINCE WE STARTED TREATMENT FOR LYME PLUS PANDAS IN OCTOBER 2010. BEFORE THAT WE TRIED DIFFERENT ANTIBIOTICS, ZOLOFT, A TOTAL OF 4 PREDNISONE TAPERS,TONSILLECTOMY AND THE 1ST OF 4 IVIG'S. WE WOULD HAVE INITIAL IMPROVEMENT BUT COULD NOT SUSTAIN A REMISSION. THAT'S WHY WE LOOKED INTO LYME. ALSO WITH THE PREDNISONE TAPERS WE WOULD HAVE DRAMTIC OVERNIGHT IMPROVMENT BUT SYMPTOMS WOULD GET MUCH WORSE THE LONGER HE WAS ON THEM.

I almost thought twice about posting because of the "jinx" factor But there has not been much posted about treating Lyme & PANDAS together. When we added amox. in January within 24 hrs the vocal tics were crazy. Vocal tics were never a huge symptom for him so we were kind of shocked to see them come on with such force. He did a LOUD cork popping sound, a high pitched screech and would yell Fire! Fire! We tried to ride it out thinking if it was a herx and would soon go away. A month later (it was driving us all crazy) I called the Dr. he said to stop the amox. for 48 hrs. and see what happens. They completly dissappeared! The Dr. said to keep him off of the amox. for now. I would say that he is very close to 80%. Maybe even more. He has been sick for so long it is hard to know what normal is for him. He still has some OCD and anxiety, but very managable. The LLMD told us those issues are usually the last to go.

Just wanted to post because my son is doing IVIG and Lyme treatment. He has had four IVIG treatments. IVIG #2 was done a week before he started Lyme treatment in October of last year. Then he had one in December and one this February. The reason I looked into Lyme was that he could not sustain a remission with antibiotics nor with the first IVIG we had last May. He tested positive on IgeneX, IGM #31, 34, 41, & 58, and IGG #41. #39 was IND. He also tested positive for bartonella. I have to say I was very scared to do both, but decided to follow the advice of both his immunologist and LLMD. He seems to be tolerating both treatments well. He had some trouble with vocal tics when we tried to add amox. to the azith. and mino in January, but have seen so much progress in the last few months. We had a meeting with his teachers last week and everyone was amazed by the change in him. One even wrote to me and said that it was great to have the “real” him back. Could it be just the Lyme treatment? Maybe. Could it be just the IVIG? Maybe. Could it be the combo? Maybe. That is the problem when you do more than one treatment at the same time, you can’t be sure. Every child and every infection is different. Right now, the combo seems to be working for him.

My ds10 is currently being treated for Lyme and PANDAS. He has had a total of 4 IVIGs. His first IVIG, he got sick with nausea and a headache two hours into it. That migraine and vomiting lasted for 6 days. The Dr. said that was very unusual and thought that it was probably a stomach bug. IVIG #2 he got a migraine and vomiting on day 3 and it lasted for about three days. IVIG #3, migraine and vomiting on day 6, lasted for about 12 hours. IVIG #4, no migraine or vomiting. Like you norcalmom, I’m thinking the migraine and vomiting might be a herx. The further he is into treatment the less herxing?

You must be kidding...he dropped YOU for sticking with Lyme treatment??? That is not a pediatrician I would want to be with!! Certainly doesn't have your child's best interest at heart. Best to be rid of him! It is pretty unbelievable. I'm just filing her with the Dr. who sent us to parenting classes for my 5th kid, the two weeks he spent in the psych ward, and the time and energy we spent appealing our insurance company for IVIG(at least we won that one!)

My son is doing both IVIG and Lyme treatment. He started Lyme treatment one week after HD IVIG in October. Had another HD IVIG in December and will be having a third HD IVIG tomorrow and Thursday. His immunologist and LLMD both agree that the IVIG is complementary to the Lyme treatment. For the Lyme, he takes minocycline and zith. Not going to lie. It has been a very bumpy road. I can say that he is far from where he was a year ago. Is it the Lyme treatment? Is it the IVIG? The combo? I'm not sure. As long as the overall trend is in the right direction and insurance will pay, I feel I have to listen to the experts and do both. The decision to do both was not an easy one. Our pediatrician dropped us for sticking with the Lyme treatment. But as I sat down with my son the other day and he read a page out of his book to me, something he has not been able to do fo a very long time, I smiled to myself and knew I had made the right decision. I'm looking forward to the day when I can walk back in her office and say "I told you so"

May ds10 had his first IVIG in May of last year which we paid out of pocket for because we were denied by United Healthcare/Oxford saying that IVIG for PANDAS was experimental and investigational. We appealed and got denied three more times so we took it to the CT State Insurance Commission. The State overturned their denial. They made them reimburse us for the one we had and to pay for one more before the end of Oct. So he had is 2nd IVIG early Oct. The Dr. wanted him to have a third IVIG and they initially denied that one, but within an hour after the denial they called us back and approved it and any more IVIGs he needs until June. The added stress to fight an insurance company while trying to care for a child with PANDAS is overwhelming and wrong. Thank you for putting this together.

Well, we went ahead and had IVIG #3 on Monday and Tuesday. It's been a rough week. The migraine and nausea were horrible yesterday but today he is feeling better. We will definitely keep everyone updated on the progress of Lyme protocol and IVIG together. #4 is scheduled for early February.

Kmom, I just posted the exact same question. Talk about confusing people even more! Sorry about that. Must have started writing about the same time, but I got interrupted a couple of times before I posted and didn't see your post. Anyway, I have the same confusion and hope that someone can shed some light.

So sorry , We must have been writing it at the same time!

My son had IVIG for PANDAS about 10 days before we started Lyme treatment (6 weeks ago) While at that appointment we scheduled another IVIG in 8 weeks. When the appointment was made we didn't know my son was positive for Lyme yet. 8 weeks has flown by and the IVIG is Monday and Tuesday of next week. I talked to the nurse today and she said that the Dr. still wants my son to have the IVIG. She said the Dr. believes it will help with the Lyme treatment. I will be contacting his LLMD to see what he thinks tomorrow, but would love to know any thoughts/opinions on this. Is it a waste of time, money? Could it be beneficial?

Within 48 hours of giving him the combo he was raging. He also had thoughts of self harm, anxiety, verbal tics that we had not heard in months. I can't believe we sent him to school through this (I did have to go get him a couple of days) but the school has been very understanding. At school he could be completely on task and in an instant would start yelling at the teachers and become very defiant. They almost seem like siezures. The episodes have lessened in frequency over the last week and he has actually had a couple of very good days. I am preparing myself for this to cycle but for now, I will enjoy the good moments. Dr. Cunningham just thanked me for the info and said that it was very helpful for her research.

Thank you guys for your reassurance. This is all so confusing and I am really tired of fighting with insurance companies and Dr.s. The Dr. questioned it saying that those were not the labs she would use and that if he really had lyme, the antibiotics he is on, would also not be what she would use. She said it would be a standard 28 day course of antibiotics (funny, she knows he's been on different antibiotics since Jan. for PANDAS. That's 11 months!)or if it was chronic or late stage, he would have a pic line and get IV antibiotics. Anyway, we had already started him on zith and mino before we started to see her. It has been three weeks and he has had some MAJOR herxing. I take that as proof that we are on the right track. She is OK with him staying on the combo for now because they are not what she calls "poisonous doses" I'm hoping that she will join us on this journy, learn along with us, and watch my son get healthy. I get the feeling I should not hold my breath for her to do that! I also let Dr. Cunningham know about his IGeneX and bartonella results. Thank you again!

Below are my ds10 IgeneX results. He has had PANDAS since he was about 5, but only dx in January of this year. His CamK was 150. After multiple antibiotics, T&A (July) and 2 IVIGs (May & Oct.), we would see initial improvement, but only to backslide every time. This led us to go see a llmd. He tested positive for Lyme through IGeneX and positive for bartonella through Specialty Labs. My son's new pediatrician is not in agreement with the llmd that we used and is questioning the test results. IGM - 31+, 34+, 41+, 58+ IGG - 39 IND, 41+, 58+ Are these results of the IgeneX test questionable for Lyme? I would appreciate any advice and/or opinions. Thanks, Jodie

sex - male age - 10 bood drawn for CamK - Jan. 2010 on day 15 of 21 day steroid burst, results - 150 exacerbation - yes IVIG - May 2010 & 2 weeks ago IGenX test received 1 week ago - positive for lyme & bartonella

This article was posted on the Lyme forum... http://www.publichealthalert.org/pdf/2009_10.pdf After reading it I was amazed that the symptoms of lyme are in some ways identical to PANDAS. My son is yet another case of PANDAS that tests positive for lyme and bartonella. There were two reasons I checked out the possibility of lyme... 1. after multiple antibiotics(since January)and one IVIG in May of this year, he would improve initially, but he could not sustain an remission. 2. He had trouble walking when he woke up in the morning. The soles of his feet and knees hurt. Sometimes he even had trouble opening a water bottle or getting into the car. A 10 year old that seriously acted like he was 80. He had been tested for lyme through the lab at Yale 3 times and all three times it was negative. I wasn't convinced that he didn't have lyme,(we live 3 towns away from Lyme, CT) So I took him to see a LLMD. We will be starting his Lyme treatment today. In my opinion, it is just another infection that needs to be ruled out when your child has PANDAS.

This will be interesting. We do not have our reimbersement check in our hands yet. I wonder if UHC/oxford will try to get away with just giving us back what they would pay. Heaven help them!

I am not sure of the answer to you question either, but we paid out of pocket because United Healthcare/Oxford denied coverage for IVIG based on it being experimental and investigational. We went through the peer to peer review, an expidited appeal and regular appeal and were still denied. We took it to the CT state insurance commison and they reversed the denial. They will refund for the IVIG we paid for and cover another. Since they have already paid for your son's IVIG in the past, how can they deny it now under the experimental excuse? That makes no sense AT ALL! I believe that insurance companies will deny, deny, deny, thinking that you will just give up and go away. They obviously have not had to deal with a lot of PANDAS parents. Everyday is a battle with something bigger than they can ever imagine. It is a crying shame that we have to add the stress of fighting insurance to fighting for our children's lives, but phone calls and paperwork, that's the easy part of this crazy PANDAS world.

Some of you might remember that my son was one of only a couple of Dr. B's patients that had been denied IVIG treatment by our insurance company so we paid out of pocket for his first IVIG treatment in May. We just received word today that the CT State Insurance Commisssion reversed that decision! I never thought I would be writing these words! Needless to say we are thrilled. Proof that it was worth the mountains of paper work and endless phone calls : )

My ds10 is a patient of Dr. B's. I can't say we are thoroughly enjoying our summer, but it is far from where we were in May before we had IVIG. You might remember us as the only Dr. B. patient not to get insurance coverage and paid out of our pocket for it. I just had to call the office today to cancel his appointment on Monday and Tuesday of next week for his 2nd IVIG because we are still fighting insurance. Since the infusion, it has been your typical roller coaster ride. At his worst (in May before IVIG) he had thoughts of self harm and suicide. He was also a rager. He has no signs of either anymore, Thank you God. He is far from 100% but it is so hard to ask for 100% when I feel blessed that those horrible thoughts are gone! Would I be getting the second IVIG on Monday if I could? You bet I would, but I can't, so we will have to try other avenues in the meantime. He had his tonsils out in July and we will be seeing Dr. Jones (LLMD) in September. Nevergiveup, that is a perfect name. I will never give up until I get my son back. We are enjoying moments. We take things day by day.