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MMC

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Everything posted by MMC

  1. 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.
  2. 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.
  3. 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.
  4. 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?
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
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