kimballot

AMy - thanks for the good explanation MrPGAPro - I am also wondering if you received actual numbers for the titers or just "negative" from the doc. It is important to get actual numbers. Once, we had negative ASO and a DNASE B that was right at the upper limit. The doc just said "negative". I now know that my son does not mount a response that is picked up with ASO, and the DNASE B rises for several weeks after infection. Had I known that, I would have continued to test every week or two to see if the numbers were rising, falling, or staying the same. Instead, the pediatrician and neurologist said "no PANDAS" and we spent 2 1/2 years on the wrong track!

Lynn - I am no expert on this subject, but here is what I am learning: It seems to me that being below protective levels in 13/14 titers is pretty significant. I am guessing that if he never had pneumovax or prevnar the insurance company would want him to try that before they approved IVIG. Are you trying to get IVIG approved? I was heartily warned by nevergiveup and others to NOT go to a standard immunologist because they would try to do another pnueumovax to boost the numbers - then say he is no longer immune deficient. (see http://www.latitudes.org/forums/index.php?...p;hl=kimballot) That is why we started with Dr. B. My understanding is that Dr. B has been able to get IVIG without having to do the repeated pneumovax. I am not sure what the outcome of a pnuemovax or prevnar would be for you since you're son has never had one, but I would check with a PANDAS doc first.

If she's gets sick and we see her slipping we'll do the burst ASAP we don't see dr. K (we had IVIG locally). We waited much longer than 2 weeks (closer to 6-8 weeks), so maybe that was the problem. Next time we'll try to do the burst within a week or two. maybe. Of course I'm just making all this up...but since waiting didn't help much last time, and we ended up repeating the IVIG, I'm leaning towards being more aggressive next time! EA Mom - I don't want to hijack this thread, but I am glad to hear that your daughter is doing better. I have been thinking about your family. Best wishes!

does anyone know the difference between the pneumovax and the prevnar?? I am not sure of the difference, but docs often ask me which my son had. I believe my son had two pneumovax injections around 2000 and 2001 - and I believe my niece had a pneumovax around 1994 (I believe she was among the first in our area to have one). The pneumovax was only given to kids with S.Pneumoniae deficiency from what I can recall. I beleive the prevnar started to be used in the mid 2000's in our area. My kids (born 1995 and 1997) did not have prevnar.

Sounds like your little guy is lucky to have such in-tuned parents and doctors! My son's issues in preschool truly WERE PANDAS, but we did not know it at the time. Every time he came off strong antibiotics he could not cope and had behavior problems - but we just attributed it to sinus infection and no one really made the connection (he was born in 1997, so PANDAS as a diagnosis is about as old as he is). If your son is having problems mainly at school it is quite possible that this is related to sensory issues. My son had a great deal of difficulty in his 3-year-old classroom (before the great experience I described earlier). There were 36 kids in one room with 6 teachers. I thought "great - 6 kids per teacher"... not thinking of 36 kids, half of which were boys, all fighting over the same spaceship toy in the middle of the room during free time! All it took was for a kid to get too close when my son was off antibiotics and Wham-o .... some type of fight or flight response and a phone call home. Take a look at some of the posts in here on sensory defensiveness and be sure that your son gets an OT eval (if he has not had one already) with his preschool assessment.

I understand your tears. I hate to say "congratulations".... but you deserve a big round of applause for getting to this point and finding this. Isn't it amazing how much this explains? Now you can work on a plan with this one more piece of evidence in your files. Best of luck.

My son started with preschool intervention at age 3 for behavioral issues, socialization, and sensory issues. We did not know it was PANDAS at the time - only knew he had problems when he had sinus infections. We had a couple of disasters along the way, but finally ended up in a typical preschool that had good structure, lots of space in the classroom, and a classroom with only about 12 kids - 8 of which were calm girls. The lead teacher had a child the previous year with sensory issues and was a strong believer in special ed and OT. My son had an IEP in preschool We had an special education itinerant teacher (SEIT) who came from a program for kids with behavioral / emotional challenges (we had chosen to not put our son in that school, but wanted a teacher that understood these issues). We also had an OT consultant. My son went to school 4 days a week for mornings only (he left right after lunch). I think the SEIT and the OT came 2 times a week each - they worked with him in the classroom, gave the teacher ideas, and communicated with me. The OT pulled him out some times specifically to work on motor when he was having coordination problems. Best of luck to you as you navigate this system! My biggest piece of advice is to visit any potential classrooms that you child would be in (public or private) to see if you think it would be a good fit.

My son saw an allergist regularly from about 2000-2004, and had traditional high-dose allergy shots from 2002-2004. The allergy shots did not seem to help with clearing sinus infections - still had sinusitis whenever he was off high dose abx. He had reconstructive sinus surgery in 2002 - still no improvement. In 2004 we switched to the Doris Rapp low dose allergy approach, which is not covered by insurance. We also stopped abx at that time to see if the low dose shots were helping the sinuses. Once we stopped abx all together, a horrible tonsil infection erupted and we decided he had been harboring strep in tonsils, so we had tonsils removed and sinuses irrigated in surgery. Son did very well after that, but we maintained Rapp clinic low dose shots at home (they are similar to the sublingual allergy drops); we also did a rotation diet for 2 years to try to counter any food allergies, and we did lots of supplements. Son did great until we weaned off the diet in 2008 - plus he probably had myco p at that time, but we did not know it. Had OCD exacerbation that lasted several months. We have stayed on the low dose allergy shots until seeing Dr. B a couple of months ago. Dr. B asked us to go back and try high dose allergy shots - after his infection was cleared. He says high dose did not work in our case (years ago) because the infection was not cleared FIRST - therefore, shots were not given a chance to work (infection being both sinus and tonsils). Dr. B thinks that high dose allergy shots will help his immune system more than low dose (at least in my son's case). Given how RIGHT Dr. B has been about everything else we agreed to give it a try... so now I am waiting / hoping for insurance coverage as we want Dr.B to do the allergy testing if possible.

Great detective work! Congrats - keep us posted.

Bubbas Mom - I don't think we've had an update on your son in a while - if we have I missed it. I have been wondering about him since it seemed like he had such a hard time with his last IVIG. I'd love it if you'd post an update under a separate thread!

We haven't been trough IVIG yet and I do not have any pearls of wisdom. I remember worn out Dad saying a while ago that it was like you were steering the ship at every turn with your son because the docs and the school never quite knew what to do with him. You have steered it so well thus far. Sounds like you need to keep steering a bit. I am praying you get some relief soon.

Sorry, I couldn't find the thread with any efficiency either; it might have been a tangent off another line of inquiry. However, I was able to dig up the research article someone had posted on the thread (Kim or Kimballout, I think), and here's a link to that actual research: Immunomodulatory Effects of Antibiotics Sorry - I can't take credit for this article, but it is very interesting and I will add it to my collection! I also want to add t hat some kids are on antibiotics for extended periods of time because they STILL test positive for strep. I spoke to one Mom who has a son with strep in his gut and it has been there for well over a year - ASOs and DNASE B still elevated, but are coming down with each blood test.

Hello Friends - This is an update on my son's sinus mucocele issue - (see http://www.latitudes.org/forums/index.php?...mp;hl=kimballot for details) Surgery went well - no surprises. Doctor says this is "the most gratifying surgery he has done all month" - because it so needed to be done. All the gook has been removed and sent off for testing. YAY!! The doc did not have to go into the eye orbit itself, but was able to drain the part that had moved into the orbit from the sinus. He ended up bringing in the computer - guided equipment, which is not usually used at this Children's hospital - so I have some cool endoscopic pictures to add to my son's file (and most kids just get baby pictures and sports team pics!). Doc looked around all other sinuses while he was in there and says he can state that sinuses are currently infection-free! My son says it feels funny to be able to breathe through his nose. If recuperation is this smooth we will be in good shape! We'll see!! Next hurdle: tackling out of area insurance coverage for Dr. B so we can continue allergy and immunology treatments. Thanks for all your support!

Thanks, Wendy - I am needing to do more work to understand humeral vs cellular etc... but that is my summer project. In the meantime, I am THRILLED to be among other families who have had similar sinus / PANDAS experiences (not that I wish those experiences on anyone!)... and - yes- Dr. B does seem able to help sort this out.

wow - I am sorry to hear that about your son but glad that the show was accurate in portrayal. We have so much to learn about this condition. Thank you for sharing this information. It will push me - even harder - to get treatment.

I must have missed that about the 2 weeks - or perhaps I just filled it in mentally since I'd read the book. It would be ridiculous to state that he had 2 weeks of antibiotics, because he had them for a very extended period of time, and they had to keep upping the dose for a while... but I guess time does not permit all tohse details. Regarding the high strep vs. low titers and IVIG issues - My son also does not fit the high titer mold... and we will likely be heading to IVIG at some point... but the show was about Sammy - and that was not Sammy's experience, so I can't really fault them there. I would love to see more info. out there on kids WITHOUT high titers, though!

Welcome to the forum! IVIG is quite costly - unless you can get insurance to cover it. I think it is about $1,000 for every 10 pounds of body weight, so it is more than $10,000 for most people to get it. There are some places that do it for a bit less, from what I have read. If your neurologist does not believe that you have PANDAS, but you really think you do, perhaps you should have an evaluation by a doctor who specializes in PANDAS or is more knowledgeable about PANDAS. The pinned threads at the top of the page list doctors that people have found helpful - here is the link for it: http://www.latitudes.org/forums/index.php?...art=#entry35170 Are your parents supportive of you exploring the possibility of PANDAS?

I thought it was well done and my husband, who does NOT read everything under the sun about PANDAS like I do, learned a great deal and saw so many similarities with our son. It was so good to hear him realize that the behaviors are/were NOT due to defiance. I was a little concerned over the emphasis on the possibility of permanent brain damage, as I do not know of any research on that.. but perhaps there is something I have missed. If Beth or Sammy read this - thank you for doing this and for helping us all.

I see - I think lots of people come here to talk, but facebook may be a more accessible public forum. Do you know if there is a way to link the pages?

Was that "huh" for me? Was my post that confusing?? sorry

Hi - glad you are looking for PANDAS on facebook. I've noticed that the facebook page that has to do with pepsi refresh is very active, and some of the others have good inforamtion also. I worry about too many pages and I am wondering if there is some way to link facebook pages. I would hate for people to think they found "the" facebook page and not realize that the answers they are looking for may be on another page.

Ok... I guess I got a little excited earlier at the thought that there may be something written about s. pneumoniae since I have been trying to convince people that my son's sinus infections lead to PANDAS symptoms for many years... (fortunately, the PANDAS docs now understand this -though the NIMH website does not list it so regular docs don't get it). My understanding is that group A beta hemolytic strep (GABHS) and Streptococcus pneumoniae are NOT the same thing. GABHS is NOT generally found in the human body, and when it does enter, the body fights it with antibodies. The antibodies have a "memory", so when they see the surface of the group A strep again, they fight it. In the case of our kids, there is thought to be a breach in the blood-brain barrier when there is infection and inflammation, and when antibodies cross over and see the basal ganglia cells they think it is GABHS and start producing lots of antibodies. The antibodies do not destroy the basal ganglia cells, but they do attach to the receptors and make Cam Kinase and dopamine go wild. Strep pneumoniae, on the other hand, IS found in normal sinuses. It generally hangs out there and does not cause much trouble and the body usually has a decent level of antibodies to keep it in check (the s. pneumoniae titers at protective levels). In my son's case, his body did not produce enough s. pneumoniae antibodies, so he was given 2 pneumococcal vaccinations at a young age. A couple of months after the vaccinations his blood work looked like he was mounting a response. However, over time, this protection faded because it was an artificial and temporary boost of his immune system. Currently, he has selective immune deficiency because 10 out of 14 s. pneumoniae titers are below protective levels. In addition, when his allergies flair up or he gets a virus, he has generalize inflammation that results in decreased ability of his sinuses to drain. Once that happens, the warm moist environment in the sinus is a perfect breeding ground for more s. pneumoniae (which his immune system cannot fight), so that is why we believe he (and probably others on this forum) ends up with a sinus infection. Now the question is... why does he get PANDAS symptoms if it is not GABHS? I don't know if he has a GABHS infection somewhere in his body (low ASO, but elevated DNASEB ) and his immune system does not mount enough of a Group A response for an elevated ASO.... or if the problem is just that he has has strep at some time in the past and his antibodies remember what the strep A looked like. Now, when he gets a sinus infection or a virus, he has generalized inflammation that ends up in a breach of the BBB and .... tadaa... those anti strep antibodies spot those basal ganglia cells and start going to work... but they don't actually kill the basal ganglia cells (thankfully)... they just have a little basal ganglia party making lots of Cam Kinase and dopamine to make him act funny and think funny thoughts. Now - if you've stuck with this post this long and you have other ideas about this, please share because my idea about what is going on in his head is certainly open to change and I really want to hear other ideas... Thanks!

Ok...not to be gross. but does anyone else see orange colored stools with azith? It could just be that the generic we have has a red coating... not sure

WOW! I never read this post. This SOO explains my son's situation with chronic sinusitis from birth and S. Pnuemonia immune deficiency. Is there anything in writing about this yeat? I NEED something in writing for the local docs who keep telling me that he does not have a GABHS infection, so he cannot have PANDAS. Is there an article that I missed?? Any help is GREATLY appreciated!!