kimballot

This is SO powerful. I need to "keep holding on" right now and I also have to remind myself that all the nasty stuff we are seeing is PANDAS. This PSA has helped me to do both. Thank you. ... we'll make it through... right?

Personally, I think antibiotics post -IVIG are a good idea, but I don't think it has to be amoxicillin. Amox is a great antibiotic, but many children have difficulty tolerating it. Perhaps you could ask for a different antibiotic now.

We have United Health Care. They have covered 100%. Not even a copay.

... yes.. and every time I see Pandas Resource Network abbreviated PRN... I think "as needed".... and I guess I do go on there to find information as needed!

Could you tell us more about what is involved in the intensive CBT therapy in Florida? I am wondering if anyone else reading this has done this program. If anyone has experience with this program, please send me a PM. Thanks

I agree to call the doctor. Also benedryl and LOTS of water. I have my (adult - sized ) son drink about 6 water bottles a day from the day before IVIG until 2 days after. He's in the bathroom all the time, but so far no headaches!

WD and T Mom - Thanks for finding this! I did not realize Dr. T had presented this information. I found a summary of the presentation here - on pages 64 and 65 http://www.childneurologysociety.org/assets/annual_meeting/2010/CNS_Program_Bklt_2010.pdf

I would make a list of the questions and then call the secretary to find out the best way to get the answered. If they are pretty basic/ generic questions she may have you consult with the nurses. If they are specific to your daughter's case, the nurses may ask Dr. B and then get back to you. If they are specific to your daughter and will involve a review of the chart and a 15 minute discussion, then you may need to make another appointment or schedule a paid phone consult. I think there are lots of us needy parents with lots of questions, and it seems the office really wants to be helpful but also needs to be as efficient as possible with Dr. Bs time.

If you are thinking you might want to test for coinfections in the future, it is good to test before IVIG because once you have IVIG you cannot test for several weeks (the donor antibodies will throw the test off). So - you need to realize that this may be your last chance for a while to test for this.

The nurses are really great and will make her feel comfortable. Bring DVDs and a DVD player if you have one (they have some at Dr. Bs office too). Tell her she can order take out food, watch TV and movies, and play video games (if you have a portable player for her). I wouldn't make a big deal out of the IV. Tell her she will get the medicine through a tube in her hand and they wrap some elastic on her hand to keep the tube in place, and she gets to pick the color elastic she wants. If you are going to Dr. Bs she will also get to sit in a big reclining chair that she can make heated or she can make it vibrate. Be sure to have her drink lots of water starting the day before, and be sure to have her drink lots of water during. Also, follow their recommendations re: steroids, ibuprofen, and benadryl.

Hi Texas mom - Welcome to the forum. I think you post may have gotten lost as it looked like a comment to an old thread and folks may not have read it. You may want to put this in as a "new thread", and I am sure people will have words of wisdom for you. We just did our second IVIG. My son had an increase (return) of psychiatric symptoms including depression and rages about 3 weeks after the first IVIG, though tics and regular OCD had decreased. We are just 2 days post IVIG #2 and so far he has been relatively calm and cooperative. I look forward to reading more of your posts. It looks like you have been battling PANDAS a while!

Wilma - you have done amazing things and seen excellent practitioners to help your daughter. I hope this treatment brings your daughter (and you) some relief and improvement in function!

HI Noelle - I think we can all share in your frustration! It sounds to me like your daughter has shown an increase in symptoms with infection. Yes, kids with tourette can have an increase in symptoms with stressors, such as infection. However, when Dr. Cunningham did her research she found kids with tic disorders and OCD who were healthy did NOT have elevated cam Kinase levels. Kids with PANDAS did have elevated cam kinase (and your daughter's levels are quite high). Since that 2006 publication, Dr. Cunningham has (reportedly) found elevated cam kinase with lyme as well, though this has not yet been published. Your daughter has some pretty impressive evidence of lyme disease. I am not a lyme expert, but from what I read the risk of a false NEGAGTIVE with lyme is much higher than the risk of a false POSITIVE, so I think your daughter's lyme results are concerning. Dr. T is certainly collegial with Dr. Swedo, but I do not believe Dr. T is on the current NIMH PANDAS IVIG study team. Kids with PANDAS have exacerbations of psychiatric symptoms due to infection (usually strep, mycoplasma or lyme - but it could be other things) or other inflammation (ex: allergies). It is important to get the infections cleared and keep them clear. If your daughter has lyme, she will need a special combination of drugs to clear it. I do not know where you live, but I would consider having her seen by a lyme doctor. Unfortunately, they are expensive and often not covered by insurance. Folks on the lyme board can help you to find one. Also, the ILADS website can send you a list of lyme doctors that are closest to you. (http://www.ilads.org/). Once the lyme and any other infections are treated, you can work with a PANDAS doctor keep your child healthy to stop any autoimmune responses that are continuing. Best wishes!

ugh! Another thing to worry about!

You probably read the story I just posted about my 14 year old son and the difficult time we have had since his first IVIG 8 weeks ago. It might help you to know that if I had it all to do over again the only thing I would do differently is have the numbers for crisis services and the police at hand before there was a problem. I would not change anything else. My son needed IVIG. If he could have had it 7 years ago when he was in an extreme exacerbation we might not be where we are now. I start every meeting with professionals saying "I wish we could have done this 7 years ago - before we were dealing with 14 years of autoimmune brain dysfunction coupled with puberty hormones and a child who is as big as me". We have not seen anything in this exacerbation that we have not seen before during regular PANDAS exacerbations - the only difference is that he is larger now and more difficult to control. We have gotten through this before and we will get through it again. I am grateful that we are doing this before he starts High School. I hope and pray he can get some sustained relief from this and focus on life. Best wishes to you and your family as you navigate your PANDAS road.

Hi - Wraparound is a national initiative. Here is the website http://www.nwi.pdx.edu/index.shtml The "users guide" under publications is very good and would be helpful to people who are not involved in wraparound as well. It is family-driven, so they have been very respectful of our choices for PANDAS treatment. My state is not listed on this website, so I suspect many states are adopting this model but may not be listed. To be honest with you, I feel like this is a well-kept secret. I only found out about it from our private neuropsychologist... then I asked about it at the psychiatric hospital. I don't think they would have offered it to us without my asking. I am so glad I asked. I think you would need to call your local (county or state) mental health office to learn more.

Thanks for the reminder. I was doing charcoal before the first admission, but the hospital did not continue any supplements. I should pull those out again! Did you do IVIG more than once?

I posted previously about the first 4 weeks after IVIG. At the time of my last post (week 4), my son was having some issues with depression that resembled a nasty exacerbation he had 7 years ago when he was in first grade - just before we had his tonsils removed. Well, things went from bad to worse over the next 3 weeks. Here's the update: Week 5 DS had some sneezing and stuffiness. I took him to the pediatrician (PANDAS friendly) and he thought it was "just" a virus. Interestingly, it did seem to run a normal course and did not turn into sinusitis (which is rare!). However, behaviors continued to deteriorate, with frequent rages, opposition, defiance, swearing, school refusal, and attempts to run away from home. This all culminated with an early-morning rage one day and bolting out the door while I was on the phone with crisis services. He ran to school to find the school social worker (which is good), but was completely in a fight-or-flight response when he got there. Crisis services came out to evaluate and we decided to bring him to the hospital. He was hospitalized in the adolescent psychiatry unit for 9 days, while the psychiatrist learned about PANDAS, spoke to all the other docs involved, and while insurance decided if he should stay in that particular unit or be transferred to an "in network" hospital. (As it turned out, the "in network" hospital refused him because they said PANDAS was a medical complication that they could not manage — Once they refused him, insurance paid 100% for the out of network hospital, which worked out well for us). Week 6 - as DS prepared to come home, I insisted on getting help via as much counseling/ parent training as I could find. My son has never been a defiant and delinquent child, and I needed a whole new set of skills to deal with this. I think this is the silver lining in all of this- I was able to get counseling services for my son AND I was able to get him started in a county-sponsored wraparound program. I don't know if any of you have a wraparound program in your area, but if you do and if your child is a teenager who is having behavior problems... I suggest you look into the program. We have a wraparound social worker who will help us steer the ship and develop behavioral plans for my son and goals for our family (after 14 years of PANDAS, our family could use all the help it can get). We have a parent advocate, who will help me stay sane and listen to my fears and questions... and has been through the mental health system herself. In the near future we will have skillbuilders who will help my son to get back into meaningful activities (he rejected all of his healthy friends and healthy activities starting week 2 after IVIG), and we will have respite for a few hours a week. Also, the wraparound program works with both the family and the school. It is a great program.... and so far everyone I have met has been very open and understanding about PANDAS. the only problem is that it takes a couple of weeks to get evaluated and started, and that was a problem for us. Week 7 - DS was home for nearly 2 very difficult weeks. During that time he asked several times to go back to the hospital. We had removed his electronic privileges (as they were a source of obsession for him), and he had no interest in healthy activities to substitute. School was difficult as he had displayed concerning behavior and the school feared he might try to leave the building, so they assigned an escort to walk him from class to class. DS was very upset by this and refused to go to classes, ending up in in-school suspension. One day he said "enough" - got off the school bus, walked in the front door of the school and out the back door - off to do who knows what for the day. Luckily a teacher saw him and some friends caught wind of it and the school called the police within 15 minutes. One hour and 6 police cars later... DS was returned to our home. For the rest of that week the acting out continued and he ended up back in the psychiatric unit for 5 days. Week 8 - DS was discharged back home. I don't know how to explain it, but he is calmer now. I don't know if it is healing from the IVIG or if he realizes that we are going to keep him safe no matter what we have to do and no matter how confusing his mind is. He went to school today and had a "normal day" - hung out with a friend and did homework after dinner... went to bed with no rages. It was wonderful. I am hoping we are on our way back. DS is scheduled for another IVIG and also with an appointment with a lyme doctor. I want to do IVIG because his sinuses REALLY have been clear since IVIG and he is immune deficient - I do not want to risk another sinus infection and a return to antibodies attacking the brain. I do not know why we have seen the symptoms we have seen. I can only think that having antibodies dance around your basal ganglia producing unusual levels of dopamine for 14 years would make it very difficult to NOT react once those antibodies die off. I want him to see a lyme doctor because his Igenex test (pre-IVIG) had a couple of indeterminate bands and I want to see if we should be doing some cyst-bustig drugs or other provocation meds to see if there is lyme hiding in there. I want to thank anyone and everyone who has prayed for us and for all the PANDAS kids. We are truly a unique breed. I also want to thank everyone who has been brave enough to share their stories with me over the past year as I have read everything I could on this forum. I was so prepared for this crisis. So much more than I could EVER have been without all of you. I knew I was not the first PANDAS mom to deal with these things.. and that gave me so much strength and comfort. Thank you all - and blessings to all of our families. EDIT: I posted a 3 month update here http://www.latitudes.org/forums/index.php?showtopic=13604&st=0&p=112576&fromsearch=1entry112576

Have you seen the female "Dr. B" in Albany? - she is a pediatrician who is an LLMD - recently became acquainted with lyme when she contracted it herself and is now on the ILADS list. PM me if you want her contact info.

Prayers to you. It is horrible how this disorder is capable of destroying lives and families. Really, it is the lack of available diagnosis and treatment that is the problem. I wish I had more to offer you.

Hi - I am wondering how old your son is and how long ago he started the PEX and IVIG. My ds 14 had one HD IVIG about 7 weeks ago. Tics and obvious OCD are gone, but now we are left with depression and impulsivity. I don't know if it will decrease or not. Just had a big team meeting with all of the supports I put in place. I really think this is brain chemicals readjusting... We are scheduled for another HDIVIG in a couple of weeks as he is also immune deficient. I am trying to anticipate what I might see afterward...

Kara - thank you so much for sharing this. It was very helpful for me to read. Best wishes to you and your daughter!

I am so sorry to hear about the state of your family. Please know, most of us have been in similar situations at one time or another. Your son does not need to have a current strep infection to have PANDAS/PITAND. Once a child has PANDAS it appears that any inflammation can trigger an exacerbation. That includes bacterial infections, viruses, and even allergies. Furthermore, some children do NOT have elevated antidnaseB and ASO titers even when they have a strep infection. Has your son been tested for mycoplasma and lyme? Does your son have sinusitis or ear infections? Does your son have allergies? Have the other members of your house been tested for strep, mycoplasma or lyme? All of these are possible triggers for what you are seeing. We were told for many years that my son did not have PANDAS because he did not have elevated strep titers when we measured. In reality, the initial strep infection probably happened early in life, and after that it was typically sinusitis that triggered PANDAS symptoms. Last year he needed major sinus surgery and his only symptoms were PANDAS symptoms. Thankfully, we did not start him on an SSRI without first checking for infections. Obviously, I do not know if your son has PANDAS, and it is not easy to rule it in or rule it out. Please know that the PANDAS road is a long one and it can be an expensive route to take. Is there a pediatrician in your community who is PANDAS -friendly? That may be the best place to start - finding a doctor who will support your desire to look for potential underlying infections.

PANDAS 16 - You are an amazing woman. My 14 year old son is having a very hard time right now and I keep thinking of you and the stories you have told me about what you and your parents went through over the years. You are so very smart and knowledgable about PANDAS. You will beat this. I am glad you have a plan. You need to hang on and stick with it - so that you can get well and also (selfishly) so that you can help us know more about what to do. We are all in this together.