kimballot

I am curious if your PANDAS doc tried a steroid burst and also if your daughter has been tested for allergies.

I have no idea what this means, but my son has abnormally high levels of phosphorus and calcium on his last blood test. Is this related somehow?? Hoping someone can answer this or at least lead me in a direction to research it! Thanks!

It sounds like you are thinking that the yeast issue is playing into the screeching. I may be wrong (I am not an expert on this - just a mom with a kid who has lots of yeast issues).... my understanding is that antibiotics kill the good bacteria in the body as well as the bad stuff, so lots of the good bacteria in your gut and sinuses and other mucosal areas is removed while on antibiotics. That leaves lots of room for overgrowth of yeast and bacteria that was not affected by the antibiotic that was chosen. The vancomycin kills to other kinds of bacteria to prevent overgrowth. The nystatin kills fungus (yeast). Once you stop the antibiotic, the good bacteria can start to grow back, but there is no room for it, so it is in competition with the overgrown yeast, which can be a really beg problem. I believe that nystatin works very well on surfaces (like diaper rash cream, or oral thrush mouth rinse), but its use in pill form for gut fungus is not so clear. It may be good for long term use once things are in balance, but lots of Docs prescribe diflucan while kids are actively using antibiotics. It is also important to remember to use a probiotic (acidophilus, bifidophilus, etc) when you are on antibiotics and for a while afterward. Probiotics help to replace the good bacteria that is lost. Plain organic yogurt is also good as a probiotic. I would call the doc back and report the symptoms. I would also be careful about journaling the symptoms so you can look back on them and have a record. Also, are you using a probiotic?

Nancy - Thank you for sharing and for your advice. It was very good for me to read that and it put a fire under my butt to keep moving forward in getting this treated ASAP! Kudos to you and your daughter for survival. I hope you can all take some time to heal.

Mom to 2 - Thanks for the update. I am SOOO happy for you!!! Please keep us posted!

Brandy - Curled fingers are seen in other neurological conditions. Is he able to open his fingers when he is doing things? Is it only at rest? Is there any small tremors when he is relaxing? I would try to videotape it when he is not looking (he will not act naturally if he knows you are watching), and then I would consult with a physician. I don't remember - are you working with a PANDAS doc?

Brandy, Previous posts have shown that kids seem to react differently to different allergy medicines. Some do best with Claritin, some Zyrtec, some Benadryl, some with natural supplements. I will tell you that we use zyrtec. I used claritin once when my son was in elementary school I got a call from the teacher within 2 hours asking me WHAT I had done!! He was a hyperactive mess. We laughed and I promised to never do it again. Most recently, the doctor has us switch to singulair. Within 2 days my son was totally itching and scratching. We changed back to zyrtec and were fine. So... you might want to try something other than claritin!

When my son was younger he had a HUGE reaction after high-dose (traditional) allergy testing. I am assuming this was traditional allergy testing that you did. Traditional testing is certainly good and has its place. However, for some kids with more subtle symptoms a provocation/neutralization (P/N testing) works better. This can be done by environmental allergists or some DAN! doctors. You can also try a rotation diet (see Doris Rapp "is this your child"). In the meantime, are you using an antihistimine?

Lynn - it is good that you are working with Dr. B. I would trust him to get to the root of it. I don't know if you read my post about finding this new mucocele infection in my son http://www.latitudes.org/forums/index.php?showtopic=8291 A doctor today told me that the mucocele has probably been there for at least 2YEARS!! My son did not have fevers, stuffy nose, or any other symptoms, because it was up so high in his ethmoid sinus next to his eye. I realize that the problem my son hs now is rare, but the persistent chronic sinus infection he has had since birth is not so rare. Did Dr. B order C3D? That is another indicator of an autoimmune problem.

I agree with EA mom. I would start tracking this and looking for other symptoms. Is he taking his shirt off to bathe or to put on PJs, or is he sleeping in it too? The multiple layers could have to do with body image, but it could also be sensory. Neutral warmth from many layers can be very calming. I would journal everything for a while and look for patterns.

Lynn- My son has a similar profile for blood work. We've never had elevated ASOs either. Do you know where your son's infection is? Does your son have allergies? Are you working with a PANDAS doc?

This is a beautiful poem that I have often thought about. It does seem so fitting for families of children with Down Syndrome or other recognizable disabilities. I can also understand the folks who say that having a child with a hidden disability is not Holland. I think PANDAS is not yet Holland because we do not have an identifiable network of people, other than this forum. We are neither in Italy nor Holland. We are wandering through a foreign land looking for others who speak our language. Our foreign land is cold and stormy through exacerbations. We all dream of the time when the sun will come out and the tulips will grow and the windmills will work. That will be when PANDAS is a clearly defined disorder with medical professionals to diagnose it and treat it and take our insurance in every city in the US. That will be our New Holland. We have to remember that families of children with Down Syndrome or Cerebral Palsy have not always had Holland either. They had institutions for their kids and no one to help. The families demanded something better and we got laws to educate and include their children and medical professionals to help. We need to do the same. When we find enough of us, we will build a New Holland for Pandas. I know I will never go to Italy, but I hope I can see New Holland before I die.

Kim - no 0 I have not really had much of a chance to look into the nuances of this issue. Thank you so much for looking this up and posting it. I hadn't thought about the immonological impact of all of this. I am anxious to see what Dr. B says too. I will check out the links you posted. That was so kind of you. I am still just walking around in shock today and having trouble focusing on much of anything at all!

I can't wait to hear how it goes! Keep us posted!

I am sorry - I was not clear in my post. My son was on high dose antibiotics nearly non stop from 4 months of age until he had his tonsils out at 7 years old in 2004. Since then he has only been on antibiotics a handful of times for sinus infections. Each time we treated him until he appeared to be clear - no post nasal drip, mocosa looks pink, no gagging with eating, no fever etc. My son has had fungal sinus infections in the past due to the large amounts of ABX, so we have been very cautious with ABX. The problem with this mucocele is that it is somewhat encapsulated, so it just kept growing, but it never burst and drained. It is kind of like an abcess or a cyst (though I am sure they have distinct properties that I am not aware of). Over the last few years, we only checked blood work once when he had PANDAS symptoms - and we only checked ASO titer, becuase we really did not know what we were doing. ASO was not eleveated, so everyone said "No PANDAS"... therefore, no ABX. Once I called Dr. T in March he ordered the RIGHT blood work and it showed (among other things) elevated DNASE B. This could have been elevated for years for all I know. He has been on Abx since then (along with diflucan for fungus), and the DNASE B is coming down... My son's face also looks a little more symmetrical to me since the prednisone and all the ABX.... I don't know if ABX is enough, though, to erradicate thie mucocele. It may remove the infection within it, but I would think this sac will still be there.

That is a great story! Congratulations!

Many of you have heard my story. 13 year old son who has had chronic and severe allergies and sinusitis since birth, PANDAS symptoms every time he was off high-dose antibiotics, symptoms decreased substantially after tonsils were removed in 2004, only about 4 sinus infections since then, but PANDAS symptoms still present with sinus infection and now with viral infections as well. Most recently, he had a PANDAS flare up with loss of executive functions after the flu (H1N1?) in November. Local docs all said it was NOT PANDAS as he did not have strep throat, and recommended SSRIs. After consulting with Dr. Trifiletti, Dr. Bouboulis, and Cunningham test, decided it was, indeed PANDAS. Dr. B is treating due to mild immune deficiencies, low S Pneumoniae titres and (now we've learned) elevated C3Ds. Dr. B's strategy was to 1. Evaluate the sinuses fully and remove all infection first (he was thinking the sinuses are the source of the problem) 2. Re evaluate allergies and treat appropriately 3. Move to IVIG once infection is cleared and allergies are under control. Ok... step one - sinuses. Had a sinus CT scan as we'd not had one in several years. My son's last sinus surgery was in 2004. Just got the results of the newest sinus CT, and my son has a very large mucocele in his ethmoid sinus - right next to his eye. It is so large even I can see it. Apparently, this is an enclosed glob of infection that has been hanging out for quite some time. In fact, the bone between the sinus and the eye is actually worn away and the mucocele is putting pressure on his eye. (so, all the headaches and complaints of pain in his eye were NOT because his mother refused to put him on an SSRI? and when I told the doctor that his face looked asymmetrical to me - I was not just an anxious mother grasping at straws??) I was very upset about all of this as this means yet another sinus surgery (this will be #3), and also means that I have not been a good mommy as this thing has been growing there for a very long time (no one will say exactly how long, but they say "more than several months"- does that mean a year or more?). I am also upset because it is right next to his eye. Sinus surgery is always risky with eyes, but now I am even more afraid because there is no bone between the mucocele and the eye. I met with a relative who is a radiologist last night who helped to turn things around for me and said I should be rejoicing because we found the source of the infection. He is right, and now I am feeling both happy and frightened. He seems confident that, while tricky, it can be safely removed and says these mucoceles are not uncommon. I really do not like sharing my son's personal information on the internet. However, I am doing this because I know so many of you are battling PANDAS and trying to find the source of the infection. I just want to reiterate the importance of finding a good PANDAS specialist, and the importance of being persistent and thorough. I know some people have wondered why Dr. B seems to focus on sinuses often.... in our case it is truly a blessing that he did! We go back to Dr. B soon and I will see what he says about this. I am sure we will have many decisions to make in the next few weeks, but I am just trying to focus on being grateful we found this now before it caused any permanent damage. Thank you for reading all of this!

Kay - My son is 13 and not yet interested in a girlfriend. Reading your post made me realize that we will have a whole new set of issues to deal with. How do you help your kids to talk to a boyfriend/ girlfriend about PANDAS? How do you teach them to develop healthy habits so they are not contracting strep or other infections? UGH!

Pathfinder, I hope you will pursue not only PANDAS, but other treatments as well. Check the pinned thread at the top of the page (http://www.latitudes.org/forums/index.php?showtopic=5023) for doctors in Southern California. The PANDAS resource network lists Dr. Pamela Varady on their advisory board. She may be able to connect you with a local doctor who can be helpful. (Clinical Psychologist, Family Therapy/Family Skills Therapy, Santa Monica, CA www.askdrvarady.com www.learn2listen.com ) What makes you think your son might have PANDAS? Have you had any bloodwork? Changes in behavior with antibiotics? It would be good if you could find a doctor that you could see locally, since your case is not clear-cut. If your son does have PANDAS, then you need to follow the PANDAS treatments. If your son does not have PANDAS then you need to look at other alternatives. Chemar posts frequently and she is often on the OCD website of latitudes as well. I believe her son is an adult with OCD, who has symptoms that are managed well with supplements and lifestyle changes. You may want to touch base with her or others on the OCD website. The fact that your son wants to go to school and make something of his life is HUGE. Earning a B- is nothing to sneeze at - especially if he has been able to achieve that while battling OCD and ADHD. If he finds a program that interests him and gets his symptoms under control, he will do well.

Robin - we did do the Cunningham test just a couple of months ago. My son's cam kinase came back right in the middle of the PANDAS range. It was very affirming for us to see it in numbers.... Of course, there are kids who very much appear to be PANDAS who's numbers do not come back in the PANDAS range, and that needs to be interpreted in the context of the entire picture. For us, we had years of needing antibiotics for sinus infections and behavior problems every time he came off antibiotics. Then we recently had a PANDAS dx from Dr. T and one form Dr. B - then the cunningham test. I figured I'd try 3 things ( a neurologist, an immunologist, and a blood test) and see if they all agreed, or if at least 2 of them agreed. In our case, all 3 pointed to PANDAS, and so did his immunology tests. Regarding IVIG - we have not done that yet, but are likely heading down that path. It is certainly not an easy decision. If your regular doc is ordering the IVIG, don't forget to make sure it is the dose that Dr. K recommends.... lower doses do not seem to be beneficial for PANDAS. Have you tried any of the supplements people talk about to help with rages and such in the meantime? Does your son have allergies? Just curious. It seems (from what I have read) that kids should be in the best shape possible going in to IVIG, as many backslide a bit for the first few weeks post IVIG. Given your son's size and rages, you want to be prepared for that. Regarding your son's reluctance - of course you cannot guarantee to your son that this will work. With my son, I have him talk with the doctor and ask questions. He usually comes to the point of realizing that the treatments are his best shot. My thoughts are with you!

Woo Hoo! 22!! I am breaking out some chocolate when we break 20!!

8 Years old! Awwee! How wonderful! To have success at such a young age! You must all be a very good team!

Kara - Congratulations to you! What a wonderful pay off for all of the hard work your family has put into this! Could you remind me how old your daughter is?

Hi Robin - I am sorry to hear about your son. I have a daughter who is 15 (no PANDAS) and a son who is 13 (with PANDAS). The rages rages can be very scary at his age. I've not heard of F strep. Could you tell us more about that? I want to tell you that my son has had PANDAS since infancy, but just recently had his first steroid burst during a lengthy exacerbation. The burst was 5 -day course from the ENT (due to sinus infection), followed 1-week later by a 17-day course from immunology (for sinus infection and PANDAS). I was REALLY amazed at the turn around with the steroid burst. He was able to focus on his school work, completed homework without complaints, and I could even read his hand writing. Of course the down side was all of the steroid issues - constant hunger, puffy face, weight gain, etc. He has been off the prednisone for 7 days, but is still on Azith. He is definitely more short-tempered and his handwriting is poorer than it was on the prednisone, but he is managing in school, there are no tics, and he is not reporting any "worries". I am hopeful that this is a sign that IVIG might work. I don't know if that is helpful. Please let us know about "F Strep". Thanks so much!

I am curious if anyone has ever tried freezing their meds if they taste funny to the kids. In theory, this should help SID. Also, having them drink a very cold drink before the meds should help because it should decrease sensitivity a bit. I don't know if the meds are affected by freezing. I know my MD tells me to freeze my fish oil. Just a thought