MMC

One of our PANDAS kids has this issue (the most severe, DS14), the other does not. DS14 is about 80 lbs, 4'11". He also has delayed puberty. Endo doc says they can give testosterone shots to start puberty, but we are hesitant b/c not sure what it might do to his PANDAS/PANS symptoms. His appetite is low, but he will eat, as long as we remind him to, but very picky eater. I, his dad, am not large or tall, and our family doc says not to worry. His sister who also has PANDAS, is now 17...and even on ADD meds with a low appetite is normal height and weight, 5'5", 130 lbs. we are hoping once puberty kicks in, he will grow, but it is a worry. Dr Latimer thinks he has some OCD eating issues. He doesn't want his food to touch, but otherwise has never complained about it not being right. He can put down a happy meal with the best of em...it just might take an hour. Thyroid tests, celiac, etc have always been negative. So, I don't know what the problem is...just another mystery with him.

Update...we had to remove the braces. DS just couldn't tolerate them. He really wanted to keep them, but we explained he can get them later when he is better. The orthodontist was understanding and will refund our down payment. His mouth tic would not stop no matter what we tried and he missed three days of school, lost some weight (is already under weight), and has a huge ulcer in his cheek that needs to heal now. It is not from the braces rubbing his cheek, it is from his biting mouth tic that the braces caused. He still has the tic some, but is overall out of stress and can sleep better. We did start a 5 day steroid burst, but he only took two doses before we had to yank the braces...we all just couldn't take it any longer. I don't think that short burst would have done the trick. We noticed his other normal tics, which are about 10 different ones, increased greatly with the braces. So, it seems the inflammation the braces caused (if you had braces, just remember how they felt when they were first installed and when they got tightened - it hurts)...caused an overal increase in inflammation that caused a big flair in PANDAS symptoms. I am thinking the inflammation in his mouth was so close to the head / brain, it created more than usual inflammation in the basal ganglia. Our dauther who also has PANDAS, did not experience this issue when she had braces, but her PANDAS is on the mild side. So...braces may not always cause an issue, but be aware they can, at least it did with us.

We feared when DS14 got braces this week, it would bring back his sucking mouth tic, and it sure did. He sucks the sides of his cheeks in and pinches them between his teeth, he can't stop doing it. He had this tic about a year ago, but it was one of the few tics that subsided after plasmapheresis last summer. Well...it sure came back the day he got braces. His cheeks are swollen out, looks like he has mumps. Could not go to school today, can barely eat or drink. We are really worried he might end up in the hospital. The orthodontist will see him today to place silicone guards on the braces, but I don't think that will help much. Told my wife, just get the braces taken off for now. But he just wants to keep the braces and be a normal teenager. We don't know what to do.

Mom was 31, Dad 33. Autoimmune diseases on Dad's side. Dad was diagnosed with Sydenham's Chorea age 7, which is an autoimmune disease triggered by strep. Sound familiar?

DD16 has ADD. DS14 has ADD, leaning towards ADHD especially in the evenings. This has made it challenging for both in school. DD16 is on Vyvanse and has no adverse affects with tics that we can tell. Tics are much worse for DS, so we have not tried much for him. I think we tried Intuniv to help with tics, but it did not, so we stopped. We are hesitant to try anything else with him, just because his tics are so bad. But, maybe we should try Vyvanse...it has been a very successful treatment for DD...she can stop it in the summer sometimes, but has problems if she misses a dose during the school week.

I was diagnosed with SC as a child. Both of my kids have PANDAS. DS also triggers with any cold or flu virus, so falls into the PITAND (or PANS as it is now named) category. I believe if I was a child with my same symptoms today and saw a PANDAS specialist, I would be diagnosed with PANDAS instead of SC. Tics can appear to be chorea like, or the child can in fact have both. SC and PANDAS are close cousins for sure. Strep was the trigger for myself and my two kids. I have often commented if Docs learn about SC in med school, since the diagnosis has been around so long, why do they have such a hard time with PANDAS? For sure, the reluctance is due to the fact psych treatments revolve around their old treatements of SSRI's and such instead of antibiotics and immunology. So, the result is all these smart medical professionals stuck in their old protocols refusing to accept the new research and truth...very frustrating to say the least, and our kids suffer even more with delayed treatment, while the parents search for PANDAS drs, driving and flying miles and miles. I guess it's going to take a new generation of doctors for 100% acceptance of PANDAS/PITAND/PANS. I have been encouraged when we take DS to an appointment and there is an intern present who hears the lead doc talk about PANDAS. For example, Dr Latimer referred us to a Georgetown ENT, Dr Harley...he believes in PANDAS and had an intern assist with the initial examination.

Thank you for sharing, this gives us hope as well. Our DS14 has not grown much or gained much weight since PANDAS onset in March 2009, weighs about 75 lbs presently. No signs of puberty yet...docs say keep waiting. Dr Latimer advised against testosterone shots for now. We are hopeful once puberty hits, it will help with the BBB and PANDAS will be a thing of the past eventually. He will be 14 and a half in December...why it is taking so long for puberty, we don't know. A growth plate study shows he is 2 years behind. He also is pale, but has always had fair skin. When DD16 hit puberty, her PANDAS symptoms did not completely disappear, but have lessened over the past three years. ADD is her main issue and is controlled by meds. So, I believe puberty does help in general, probably something with the BBB maturing. I know it doesn't work out this way for all kids, but one can hope. Time is on our side and I do not believe PANDAS causes brain damage, although some symptoms can linger into adulthood, but to a lesser degree.

Fixit, if you find the magic bullet, let me (us) know...those that have ticcers. I know each child is different. Our DS does not have chronic strep and has had his tonsils out. His bloodwork all looks good, at least the things that have been checked. He stays on Augmentin 500mg a day and has tried all the usual antibiotics while being treated for Lyme/co-infections. We just can't find whatever lingering thing that is causing the tics. He has delayed growth and puberty. We are hoping puberty and some age will help close the BBB. This seems to be what happened to me. DS is tired of going to doctors and getting blood drawn and hearing new theories about what will help him. He is 14 now and is saying, just let me be. But, I don't want to give up and want to help him so much. Even this last plasmapheresis he just had this summer did not help his tics, at least not yet. Dr Latimer said give it more time. We were hoping T&A and PEX would be the magic bullet...it didn't hurt and glad we did it, but he is still struggling with tics. Although, it seems a lot of other symptoms have lessened, so maybe there is hope he will continue to improve.

It is very hard to watch a ticcing child and not be able to provide relief. This has been the most difficult symptom with our DS. DD has had tics as well, but her ADD is her worse symptom, and I guess it is from PANDAS. DD's tics have decreased over the years, as did mine once I got a few years past early teens. DS really struggles with his tics. If we could just get this symptom under control for him, he would be a much happier child...but have not found the complete solution yet. We are hoping time will help as it did with DD and myself. He did actually just start a new med from Dr Latimer, Keppra. It is a seizure drug and is supposed to reduce tics as well. Hard to say if it is helping, but we are going to give it some more time. DS had a flair in tics a few weeks ago, when he got a cold bug. Even before he got the bug, his tics increased when DD was sick with it...so, it sure seems to be an autoimmune / inflammatory reaction. We just don't know how to completely heal or break the cycle. So, unfortunately, I don't have a solution to offer, other than...try NSAIDS twice a day, use a med in the evening such as clonidine to help relax and get to sleep, benadryl in the evening when needed.

ptcgirl, I wonder what your brother would say about Sydenham's chorea? This diagnosis has been around since the 1600's. Does he dismiss this as well? PANDAS is just a variant of SC... http://en.wikipedia.org/wiki/Sydenham's_chorea SC and PANDAS have some striking similiarities with some differences in the presentation as well. Which is no surpries to me, with all the changes the human body evolves within...such as innoculations, diet and food supply changes (for the worse), environment changes, etc. I beleive a lot more kids are now predisposed to immune system disorders such as PANDAS. Third world countries still struggle with SC where there are no readily available antibiotics. We have a family friend who is a neurologist and he and his practice dismissed PANDAS as well, and he knows about our kids with PANDAS. He recently told one of my family members they are now starting to understand and treat PANDAS kids to a certain degree...so, yes time will be on our side. But, time sure does move slowly when you see your child suffering and you struggle to find a good doctor and treatment.

Kimflow, he did not flare after T&A, but all symptoms remain, mainly tics are his problem. He has remained on Augmentin 500, twice a day. I also wonder if another abx should be added. Dr L. is doing PEX again, (first was Jan 2010)...b/c his one IVIG (April 2010) did not help and he had really bad side effects. PEX really helped him in Jan, 2010 until he got the swine flu in February. So, we hope we have cleared this infection and now PEX will be more permanent. That is the theory. She also said he should start gaining weight after the T&A. We hope so.

DS13 had a T&A on 6/15. The culture of his tonsils did not show strep, but did show Haemophilus influenzae. I am just starting to research what this bug is. Has anyone seen this in a tonsil culture from their PANDAS child? Or heard a PANDAS doc talk about it? I am going to search the forum. We were actually hoping strep would be found, which would have better explained his chronic PANDAS (over 3 years)...but maybe this bacteria has caused it as well. Now, we are trying to schedule plasmapheresis with Dr L.

Dr Corbier in Charlotte did IVIG for us. His office is on a wing connected to Jeff Gordon Hospital (in Concord, NC) and they did it there. DS had a severe reaction when they started the 2nd bag on the 2nd day. We did not see any gains from having IVIG, so we never pursued another one. And BCBS denied further IVIG's also. From what I hear, there is a long wating list to see Dr Corbier as a new patient. He is a pediatric neurologist, treats a lot of Autistic patients, but sees some PANDAS patients too.

Yep, already been through that at Duke and gave up on them in 2003. This is when our DD5 started showing the first sign of PANDAS with an eye blinking tic after having strep. We made an appointment and me with a doctor and intern. When we mentioned PANDAS, they ignored it and just said it is tourettes. PANDAS research was still fairly young then, but it was out and I knew about it from my findings on the internet. So 9 or 10 years later now, I see Duke has not changed...that is too bad, but not surprising. And they were the ones who diagnosed me with SC in 1972! It doesn't seem they even consider SC any longer...or realize PANDAS is a different variation of SC, close cousin. I told them about my history, but they just gave me a blank look. When DS got PANDAS in 2010, we did not consider Duke and went to Raleigh Neurology...which was also a waste of time, by the way. We then headed North to Dr Latimer.

Bumping up...this topic has sparked my curiosity...could strep in the gut be a cause of recurrent PANDAS symptoms? Has any of the PANDAS docs out there that you all have seen ever been concerned with this? Dr Latimer has never mentioned trying to search for or clear strep in the gut. From what I understand, there are all kinds of bacteria in the gut (everything lower than the stomach) and this is normal. But...can Strep A be down there? Or could the other strains of strep cause issues? I just don't know.

Did they say if this is Group A strep or Group B strep? Group B is common in the gut... http://en.wikipedia.org/wiki/Group_B_streptococcal_infection Do we know if Group B strep can cause issues with PANDAS kids....anyone?

I enjoyed watching this video. Our DS13 is getting his tonsils and adnoids out next month. We went back to Dr Latimer last month and she referred us to Dr Harley, an ENT at Georgetown. He understands PANDAS, says he can get insurance approval and is doing the T&A June 15th. So, we are driving back up there to get this done and stay one night in the hospital. Then, most likely, repeat plasmapheresis a few weeks later. We are so hoping and praying this will be what we have missed these past 3 years. Dr Latimer said his tonsils could be harboring strep or some other bacteria that abx just will not clear. She is mainly concerned about his apparent anorexia, as his weight gain has been flat for a long time. He has very little appetite and has not shown any signs of puberty...will be 14 in June. He still struggles with numerous tics every day, ADHD, some OCD. We had not seen Dr Latimer in about two years and know we made the right decision to see her again. And Dr Harley is great...I hate we have to drag DS back up there (he is not looking forward to it), but Dr Harley really undestands PANDAS and will get his tonsils and adnoids tested after they are out.

Ahh...PEX, not IVIG. Either way, it is quite convincing. Our DS had PEX and it helped way more than the one IVIG (which was actually followed after PEX). But, the symptoms came back very quickly, after the flu. maybe we should do PEX again...but, if the symptoms come back within a month or two, it is not worth it.

At the bottom of the article, there is a picture of a brain MRI and it shows a decresase in size of the caudate, which is part of the basal ganglia. I had never seen this before...does anyone know if this is from the new trial they are doing? I thought the inflammation was more at the neuron level and could not even be picked up on an MRI. This looks like good proof, that IVIG works, or can work in some cases. We will need proof like this, for insurance to pay more on this in the future. And for docs to accept PANS as a proved diagnosis.

WorriedDADNMOM, I have all the same questions. I believe the underlying issue is a problem with the BBB in conjunction with anti-neuronal antibodies that are over produced by the immune system. We recently had a new work-up done by an immunologist just to review DS13's immune system. His immune system shows some low numbers, but he did mount a good response to the pneumovax vaccine they gave him, so it is working. The doc did not recommend anything other than getting him retested in 6 to 8 months to make sure his numbers were still good. I know vaccines are controversial, but we hesitantly allowed this...and he is now protected against various strains of pneumonia. He showed no side effects (as of yet)...and actually has shown some improvements since the vaccine back in early Nov...which may just be coincidence, not sure. Anyway...I asked this doctor, who is a young, sharp immunologist at a major children's hospital in NC (not Duke) about the BBB. He said he has no way of testing the BBB, unless they were to do a spinal tap, and he did not encourage this. He had nothing to add as far as how the BBB plays into autoimmune diseases. I believe we have a long way to go in order to understand the BBB and how it relates to this type of disorder, and even more, how to treat it. There's not much out there that I have run across. And I also wonder about DS13's strep. Is there some still hidden somewhere? Is it intracellular? How do we find it and kill it all? Because something is still causing tics, OCD, ADHD, brain fog, decreased math skills, etc. We did Lyme treatment for nine months and he was on various antibiotic cocktails...I was not sure if he had Lyme or not, but I wanted to throw the "works" at him in terms of antibiotics. It may have helped some, but he still has so many symptoms. Is still on 500 augmentin a day. He has had PANDAS for about 3 years now, strep definitely caused it in March 2009. His MycoP levels show past infections, but not current. He has had PEX once and this helped some, but symptoms came back after getting flue one month later. We are not opposed to doing PEX again, but that is a lot to go through, if relief is temporary. The BBB is still probably open and whateve bug is causing bad antibodies to slip into the basal ganglia and cause havoc. Hoping BBB will close as he gets older. Today's medicine does not know how to close or heal it. We may try homeopathic / naturopathic next to try and get some relief.

I also am disappointed. Both of my PANDAS kid's dominant symptom is ticcing, followed by OCD, ADD / ADHD, sensory issues. This doesn't help narrow a PANDAS / PANS diagnosis that would help with possible insurance coverages on treatments. It looks like they can more easily fall into a Tourettes diagnosis, as stated by thenmama. Tourettes is a condition, not a diagnosis in my opinion. What is the cause of TS? Well, in my kids, it was an autoimmune reaction to strep. It was for me, too...so there is familial history, but so what. My son never ticced in his life, until he got strep in March 2009. My daughter never ticced until she got strep in 2000. That's how I knew she had strep...I noticed she had an eye blinking tic. In 2000, my wife even spoke with Swedo on the phone, asking about her research study. She asked if our daughter showed signs of OCD. We said, no we don't think so. She was only five and we did not note any OCD type behaviors, and barely knew what to look for or what OCD meant. So, Swedo has always looked at OCD as the primary symptom. But, our kids are different, tics are primary, OCD is secondary. They still have PANDAS. So, I don't know what to think about this. I certainly appreciate and respect Swedo, and maybe it is due to pressure from the other docs out there who are naysayers, as stated in previous posts. I'm just hoping for advancement in: 1) Recognition of disorder by practitioners, 2) Treatments and 3) Insurance Coverage of treatments. I'm thinking grandchildren (future), not only our children.

Daily for both our PANDAS kids. My opinion is they will remain on proph abx after teens, like 20 or 21. Especially for our DS, who has experienced harsher symptoms. I had SC and was on proph abx from age 7 to 20, and no ill effects. So, I am all for it.

Posting on this kind of late, sorry.. 1. Is your child taking long term daily abx for PANDAS and if so, - yes 2. which abx and what dose and - Pen VK 500mg once a day for DD and Augmentin 500mg once a day for DS 3. what is your child's age, weight and - DD is 16 and 125 lbs, DS is 13 and 82 lbs 4. number of severe PANDAS exacerbations - AND, - Hard to answer, DD has had PANDAS since age 5, tics wax and wane, worse with stress, OCD and sensory issues are there but mostly mild...DS has had PANDAS since age 10, will flair with any infection or stress, or without warning...we are noticing decline in symptoms the older he gets...actually doing a lot better the past 2 months. 5. current status of remission at this point - not sure I would use the word remission, but DD is 75% better than her worse times. DS is 25 to 50% better than his worse...it varies for him, would have never used a high 50% better rating until recently.

Our DS13 with PANDAS did not have the pneumovax innoculation as a child. But, he just got it Monday. This is because his new immunologist saw a weakness in his immune system against pneumococcol bugs, only showed 1 out of 14 resistance on the labs. And he wants to measure titers after a month to see if his body responds and makes antibodies. (good reason for IVIG with insurance approval if this is the case). So, cannot blame his PANDAS on this vax. His PANDAS is due to a genetic predisposition to an autoimmune issue with strep...not vaccine induced. Could vaccinces in general cause a weakened BBB? Good question, but just speculation at this point. We have been aware to be careful with vaccines, and I will say when he got this shot on Monday, I was nervous about it, but he has shown no problems at all other than a sore arm. I do not get a flu shot, and do not have my PANDAS kids get one. So, I still think the least amount of vaccines, the better.

Both of my PANDAS kids have been allergy tested with no flairs or negative results. They were not allergic to anything.