kimballot

Thanks - I needed that little bit of PANDAS humor! All the more reason to change the name!

Nancy - This is such great news! I always look to see what you and your DS are doing and hope we can follow suit in a bit. Wishing you all a wonderful New Year!

Dr. B does the standard IGE allergy testing as most allergists would do. I do not believe there is anything magic about Dr. B's allergy testing or shots. He did both environmental and foods for my family. In our case, he did recommend allergy shots when indicated for my (non?) PANDAS daughter and myself. We both have been getting shots locally and are doing well. The shots did NOT trigger any symptoms in my daughter, and she does get some PANDAS symptoms when ill or with vaccinations. DS14 (PANDAS) has been tested numerous times in his life for allergies and as a young child did test positive for IgE environmental allergies -eventually receiving several years of allergy shots. Over the past 4 years he has NOT tested positive for IgE allergies on several occasions from several different doctors including Dr. B. DS does not receive allergy injections - but he does get zyrtec and quercetin... and Dr. B and the ENT still classify him as having allergic rhinitis. If you are asking if allergy testing triggers an exacerbation I can tell you that the first time DS was tested as a preschooler -while he also had underlying hidden tonsil infection that we did not know about and he was in exacerbation. I remember him have a very bad day at preschool after allergy testing and the doctors telling me it was unrelated to the allergy testing. Looking back - I am sure it was not unrelated, but I don't think it was any more of an upswing than I would have seen if he went to the zoo (where he was allergic to the animals) or if he rolled in fresh cut grass. I think (personally) it is important to try to get allergies under control if they are part of the picture. They are just one piece of the puzzle, but an important piece since they lead to inflammation, which can trigger a breach in the blood-brain barrier and start all those lovely PANDAS symptoms. Controlling my son's allergies really helped him to recover from his first major PANDAS exacerbation 7 years ago.

Just be sure to keep a close eye on liver functions. I've seen it be a problem with liver.

I posted last week asking for folks to share their experience with inositol ( http://www.latitudes.org/forums/index.php?showtopic=15715 ). I started ds14 on 500 milligrams about a week ago. I give it to him after dinner. Since starting it, he is falling asleep much better and seems to have some motivation that we have not seen in many months. Today he came home very excited that his "to do" bin in resource room was completely empty as he was caught up on his work... then he went to my Mom's with me to help with holiday decorating and was a huge help... and cracking funny jokes too. Not manic at all - just funny. Let's keep our fingers crossed it continues.. it is nice to see my son again!

Airial - So, SO happy for you that things are working out - especially with the progress your son has made. I hope your daughter is on some strong antibiotics now and I hope you are trying to keep inflammation down during this transition phase as she heals. Best wishes for continued healing and progress toward health!

Peg- Just wondering how Allie's night went and how you are doing as well. Hope you get some answers today!

I am wondering if your son has any immune deficiencies. If he does not and you are seeing no progress why continue? My son gets IVIG every 8 weeks, but has immune deficiencies and had chronic sinusitis - the IVIG keeps that at bay. We went the LLMD route in addition to Dr. B. My son's bloodwork does not look positive for lyme, but he really responds the best to the lyme antibiotic cocktail. I figure as long as he has to be on antibiotics they may as well be ones that make him function better - and the lyme cocktail he is on now seems to do that. We are also doing supplements to support his gut and immune system as per the LLMD. I have to believe it is helping, as he is continuing to make slow, steady progress. Best wishes...

ds 14 is doing fairly well these days, but still has lots of trouble with motivation to do things that are less than rewarding. Also, having periods of nastiness when tired - especially in morning and at end of day. Some mild anxiety issues limit function as well. I am hoping to smooth things over a bit and thought I'd try inositol. Just picked up a bottle of 500mg. capsules. DS is adult sized, but tends to react very easily to meds, so I usually start at half a dose. Directions are to "take one capsule daily".... should I open this up and give him half a capsule a day to start with? Any inositol experience welcome!

I don't think the NIH is denying that early intervention is a good thing... I just think that they need kids with clear and profound behaviors - otherwise they would not have enough data to measure and see if there is a change. So - just because she does not qualify for the research study she should not be excluded from receiving treatment. I hope you have good results with your Dr. Visit and I hope you are able to get her the treatment she needs.

LIKE

My son was very sick by the time he had his first IVIG and it triggered a very bad exacerbation with extreme depression. It took many months to work through that. However, we have continued to do high dose IVIG (1.5 g/kilo) every 8 weeks and he has not had any sinus infections since we began (he had severe chronic sinusitis previously). PANDAS symptoms are down. BUT he does have lots of problems with fatigue. We are currently treating for lyme/ chronic infection and that is most likely the fatigue factor.

Neither of my kids had strep in their tonsils on culture. Probably because of the extensive antibiotics that were used for us. But they both had evididence of chronic infection. Did they say if there was evidence of infection?

I have received BOTH recommendations from very reputable PANDAS docs. One psychiatrist told me to revaccinate, the other, an immunologist, said "no way". We did not do it. Like you, my son was immune deficient enough and had enough physical illnesses to make him a candidate for IVIG, and the insurance covered it without revaccinating.... so we just did IVIG.

Hello - I am so sorry you are going through this. Many of our children have reactions to infections other than strep. We often see exacerabations with mycoplasma (walking pneumonia), sinus infections, staph infections, and with lyme disease. We also see exacerbations with viruses. Regarding the ASO and DNASE B results - a single test really does not tell you much. It can take a while for the numbers to rise and then fall. ASO rises and falls before DNASE b. You need to have your child tested again in a week or two to see if the numbers are rising, falling , or staying the same. If possible, you might want to contact a PANDAS specialist. There is a list in the "pinned threads" at the top of the forum. Let us know what else we can do to help you.

My son had frequent, asymptomatic sinus infections. The asymptomatic ones were generally in the ethmoid sinus, which is pretty far up and has difficulty draining if there is inflammation. He generally showed PANDAS symptoms, and when he did say his head hurt we attributed it to psychosomatic issues of school refusal. At one point, he had a large cyst that was actually eroding his sinus bone - it had been there for over a year before we found it- and the only symptoms were PANDAS symptoms (separation anxiety, urinary frequency, joint pain, fatigue, brain fog). Local docs all said it was depression, but we got to Dr. B who found the sinus issues. We really need to be on the lookout for sinus issues. My son's ENT recently got a machine in his office that allows him to place a scope up my son's nose and really look at all the sinuses right in the office - without a CT scan! It has been a big help.

My son did not do well after IVIG initially. He started doing better when we changed his antibiotics. In our case, a lyme doctor helped us with antibiotics, but his immunologist also agreed with the change. Is you child on antibiotics?

Airial - you said the doc only gave you 7 days of ABX. I think you work with Dr. M. as well. You might want to call her clinic and run this by them. I suspect they would want your son on for longer. Regarding recovery - my son had a painful week or two (it was 7 years ago).... we did not know he had PANDAS at the time and did not know exactly what to look for, but I can tell you that when he went back to school 2 weeks later he was significantly better and got through the school day without trying to run out of the room or hiding under a table every day (maybe just once per week). The improvements continued over the next couple of years - slow and steady - but we knew that, in his case, the tonsils were the source of the chronic infection.

I have often wondered if the fatigue and even shortness of breath my son has experienced during very severe exacerbations might really be acute rheumatic fever that we are missing. The docs (PANDAS docs included) have reassured me that we do not need to go down that path, and he does always seem to get his stamina back once his infection clears.... but I've still always wondered. I just came across this 2004 article (you may have already read it) that indicates that out of 60 kids with PANDAS that they evaluated, non had signs of ARF and only one had some mitral valve regurgitation- which (I suppose) could be found in a general population of 60 kids... So - Just thought I'd share. http://pediatrics.aappublications.org/content/114/6/e748.full.pdf+html UPDATE: I just corrected the URL so it is one that everyone can access - sorry!

Yes - it does seem like a vicious cycle and it can be a vicious cycle. We need to support the gut right from the start of antibiotics and I think we are all learning about supplements and diets to help. I just wish we had a way to measure "gut health" like we measure titers.

Bulldog, Burnell, Minnesota Mom and anyone else who has enrolled his/her child in the IVIG study - THANK YOU for being in the study. I wish all of our children who receive IVIG could be studied, but (unfortunately) most of our kids are pretty complicated cases by the time we discover the problem and reach the point of needing IVIG, so we really rely on the kids with newer cases to provide the data. I look forward to the day when kids with PANDAS can receive early diagnosis and proper treatment so families can avoid the complicated immune-system tangles that many of our children experience. I hope that your children experience quick relief with their IVIG treatment and I hope they are able to stay healthy and sustain the benefits.

I know it may seem far-fetched, but this was the exact situation my son was in when he was younger. He lived on antibiotics and had massive PANDAS symptoms whenever he came off. He NEVER had a positive throat culture, but did have chronic sinusitis. Eventually, it got to the point where antibiotics could no longer hold him. His tonsils were very large and vascular, but all docs said that was because they were doing their job of filtering his blood of the infection. What they did not realize (and could not see by looking at his tonsils) is that years of allergies and post nasal drip had created cracks (crypts) in his tonsils. These crypts were a perfect breading ground for bacteria - not much blood flow to allow the antibodies and antibiotics to clear them, warm, moist... it was a great place to be. The antibiotics generally kept the infection from flaring into a raging disaster- but could not remove the underlying, smoldering infection. Whenever he switched to lower antibiotics, the infection spread to his sinuses and sometimes his ears. We did not know any of this was happening. When he was 7 he was in MAJOR PANDAS exacerbation, but we were just starting to hear about PANDAS then and had no one to help us. We thought maybe his problems were due to yeast so we took him off ABX and his tonsils turned completely white within a couple of days. We were so happy to finally find the source of the infection that we did not think to culture it - so I do not know for sure if it was strep or some other bacteria. After his tonsillectomy he slowly recovered and had 3 1/2 years of recovery to near neuro-typical behavior, with NO meds. No Antibiotics, no psychotropics... nothing. Just supplements and a good diet... until a bout with mycoplasma and then a year later a sinus cyst- which set off the exacerbation he is now recovering from. We did not do any titers before the tonsillectomy, but we did do them a few months later when he was having a small increase in symptoms one time. ASO was not elevated and DNASE B was slightly elevated- but no more than one would expect in a child who'd had a previous bout with strep. We've checked titers quite often over the last couple of years and they are NEVER elevated... so I don't think titers are a good marker for my son. I do NOT think every child with PANDAS needs to have their tonsils out.. but I do encourage parents who are being told that their children have cryptic tonsils to take it seriously. I also know some kids have done worse after tonsillectomy as the surgery itself can release some bacteria and set off an exacerbation. It is a difficult decision and I respect parents who decide either way, but please don't think it cryptic tonsils are not a possible underlying problem. I suggest anyone having surgery talk with the doc about getting strong antiobiotics before, during, and after surgery try to minimize the risk of the surgery setting off an exacerbation.

Wilma, I am sorry for this set back, but I have to tell you how very happy I was to hear that your girl had a friend all summer! Take some time and go back through your posts from last year. From what I remember around Christmas and New Years last year - your daughter had so much difficulty getting through the day and the nights were unbearable. I am wondering if your daughter is at a point in recovery where she is ready for some cognitive behavioral therapy to help her cope with her obsessions. Perhaps you have tried that in the past, but this might be a good time to reintroduce it - especially if she liked having a friend. Maybe she will see it as a way to develop her role as a friend?

Thank you for posting this.. can we get this up on the PANDAS support webpages?? Can we keep "bumping" this so new folks see it. This sounds very important.

Melanie - thanks for keeping us posted. I hope the rest of the treatments go well. Prayers for a peaceful night for both of you.