Momto2boys Posted March 29, 2012 Report Share Posted March 29, 2012 My son is 12, 6th grade. Dx with PANDAS and ADHD in 4th gr. He presented with tics, extreme anxiety, small hints of OCD but nothing at real impactful level, emotional lability, changes in handwriting, inability to process math when normally brilliant at it and just a whole different kid from the sweet son I normally had. He saw his first specialist who made the diagnoses and managed it with prophylactic abx for a time but were then discontinued due to allergic reactions. We did address this and he was finally put back on but we saw a fairly regular pattern of flare ups every two months (confirmed with titers) where his behavior, tics, ability to comprehend at school went to heck.Doctor retired. We moved on to next specialist, had very different approach and high hopes. We did see a big improvement for a while but now seem to be back in this same pattern but not able to reach a consistent improvement. He is a smart kid who can do real well at school but then totally fall behind, forget or lose assigments, can't stay organized, etc. When the PANDAS is controlled he is bored in certain classes, when it is a flare up he is crying over little assignments. He is on: Augmentin 2x/day Omnicef 2x/day Singulair Intuniv (for ADHD) Loratidine (OTC allergy) Nasonex Vitamin D Omega 3 Probiotic Mucinex 2x/day Multivitamin Ginseng (recommended by GP for ADHD) Ginkgo (recommended by GP for ADHD) The omnicef was added for the current flare up. He has had prednisone on past flares but gets back aches, feels weak and lethargic and feels worse when on it but eventually seems better but not for long. Maybe I'm expecting too much, maybe this is just as good as it gets. Maybe it simply comes down to that I need to finally fight the school regarding the idea of a 504 (I was previously denied). The other part of this is that we have become increasingly frustrated by our doctor and his office. I'm wondering if it might be a good time to simply explore our options to find a better match which will lead to better care. I'm curious if someone has had good luck in the Massachusetts area and would recommend someone. I did look in the pinned list but did not see any Boston area people which I would think there has to be someone. Link to comment Share on other sites More sharing options...
Chemar Posted March 30, 2012 Report Share Posted March 30, 2012 Hi and welcome bumping your post up so others can respond also, I found this on the helpful threads Doctors list where I see 2 doctors in the Boston MA area http://www.latitudes.org/forums/index.php?showtopic=5023&view=findpost&p=35049 Link to comment Share on other sites More sharing options...
shannon aka mommy Posted March 30, 2012 Report Share Posted March 30, 2012 Hello:) I'm a newbie too. I'm sure some of the other moms and dads with lots more experience will add some comments soon, but I do have a couple of suggestions... Have you tried an elimination diet? It seems to have really helped my son a lot (he is 14). He has many food intolerances, but no real food allergies so the only way to figure it all out is by trying the elimination diet. Corn in particular seems to be a trigger for him. The tics have almost completely disappeared. The OCD, anxiety and sensory dysfunction are still very present though:( I have also read about Singulair causing neuro side effects in some kids so we have slowly taken our son off of it. We are only on day 3 with no Singulair so I don't know if it is helping at all. We started Augmentin yesterday and are waiting for an appointment in May with Dr M who comes highly reccommended. So, we are just starting this journey. Personally, I find great comfort in reading other parents posts. It helps to know that we are not alone and it helps to draw on the experience of those ahead os us on this path... Link to comment Share on other sites More sharing options...
dcmom Posted March 30, 2012 Report Share Posted March 30, 2012 Hi Momto2- This is NOT as good as it gets. I think, with aggressive management, you should expect 90% and better, 90% of the time. I think you need to get with a pandas specialist- someone willing to treat aggressively. Your son is on lots of meds- but he is not well? Makes me think they should all be re evaluated. It looks like you are treating him for allergies? Is this the case? We don't have allergies, so I cannot comment, but I know they can trigger some kids. I don't understand the every 2 month flare- are you seeing triggers to this flare up, or does it seem like a cycle? This may point to a chronic infection. My girls originally recovered with antibiotics only. Since that first time, however, we have needed something more: steroids and one time pex. Now- they tend to flare up if sick- but we try to jump on it quickly with steroids- and they are ok. so my advice fwiw- 1- get with a pandas specialist 2- test for chronic infection 3- if no chronic infection, treat with immune modulator- steroids, ivig, pex 4- manage aggressively, figure out how to deal with allergies (if present) Link to comment Share on other sites More sharing options...
Kiera Posted March 30, 2012 Report Share Posted March 30, 2012 Agree with dcmom! I waited 2yrs manageing to get by, before seeing pandas specialist. Do not settle. Dr B is next state over in Ct and he's an immunologist, will do thorough work-up. I had to fly cross country to see a specialist, but well worth it, you won't regret it. Link to comment Share on other sites More sharing options...
bulldog24 Posted March 30, 2012 Report Share Posted March 30, 2012 any hx of lyme? not to keep beating on the lyme drum but steroids can make lyme symptoms worse, so getting worse with pain after steroids makes me think lyme Link to comment Share on other sites More sharing options...
EAMom Posted March 30, 2012 Report Share Posted March 30, 2012 My son is 12, 6th grade. Dx with PANDAS and ADHD in 4th gr. He presented with tics, extreme anxiety, small hints of OCD but nothing at real impactful level, emotional lability, changes in handwriting, inability to process math when normally brilliant at it and just a whole different kid from the sweet son I normally had. He saw his first specialist who made the diagnoses and managed it with prophylactic abx for a time but were then discontinued due to allergic reactions. We did address this and he was finally put back on but we saw a fairly regular pattern of flare ups every two months (confirmed with titers) where his behavior, tics, ability to comprehend at school went to heck.Doctor retired. We moved on to next specialist, had very different approach and high hopes. We did see a big improvement for a while but now seem to be back in this same pattern but not able to reach a consistent improvement. He is a smart kid who can do real well at school but then totally fall behind, forget or lose assigments, can't stay organized, etc. When the PANDAS is controlled he is bored in certain classes, when it is a flare up he is crying over little assignments. He is on: Augmentin 2x/day Omnicef 2x/day Singulair Intuniv (for ADHD) Loratidine (OTC allergy) Nasonex Vitamin D Omega 3 Probiotic Mucinex 2x/day Multivitamin Ginseng (recommended by GP for ADHD) Ginkgo (recommended by GP for ADHD) The omnicef was added for the current flare up. He has had prednisone on past flares but gets back aches, feels weak and lethargic and feels worse when on it but eventually seems better but not for long. Maybe I'm expecting too much, maybe this is just as good as it gets. Maybe it simply comes down to that I need to finally fight the school regarding the idea of a 504 (I was previously denied). The other part of this is that we have become increasingly frustrated by our doctor and his office. I'm wondering if it might be a good time to simply explore our options to find a better match which will lead to better care. I'm curious if someone has had good luck in the Massachusetts area and would recommend someone. I did look in the pinned list but did not see any Boston area people which I would think there has to be someone. I don't know who've you already seen, but I would agree about seeing Dr. B. I think he is more aggressive (in treating) than many other docs, which is a good thing. If I were in your area I would see him. Also, I want to ditto the concerns about Singulair. Dr. Murphy (at the IOCDF) specifically recommended against it for PANDAS kids. Link to comment Share on other sites More sharing options...
LNN Posted March 30, 2012 Report Share Posted March 30, 2012 My DS had a similar pattern - could not sustain remission for longer than 2 months. Yet he also had direct behavior correlation to strep. Pandas treatment got us only so far. We then tested for/treated for lyme and bartonella and he made additional gains. But again, we hit a brick wall, and just could not break thru the cognitive issues. We finally discovered a condition called pyroulria, which results in a zinc/B6 deficiency. We saw enormous gains after treating that (something he will probably have to treat for life). Mt DS is still susceptible to strep and may still have some lyme issues. Still a work in process. But there are two things that stand out from your post. First, you're seeing a pattern of relapse. So like DCmom, I'd suggest further testing for a chronic infection - mycoplasma fermentans, mycoplasma pneumonia, lyme, bartonella, babesia, chronic virus like epstein barr, ctyomeglavirus... Second, you seem to have a number of medications aimed at congestion and mucus. Chronic infections often create biofilms - a colony of a variety of bacteria and viruses that live together in a slimy mucus city. Antibiotics rarely penetrate the biofilm and the organisms emerge periodically to multiply and colonize new territory. here's a fascinating but very long article http://bacteriality.com/2008/05/26/biofilm/ I can tell you that I've been in that place you are - is this it? Should I accept this and move on with life? Does sh*t happen? We did ultimately find that underlying deficits (pyroluria in my son's case) prevented him from getting rid of the other stuff. There is probably one or more missing pieces for your son as well. This isn't as good as it gets. It just means you have to dig deeper. There are three doctors that come to mind in the general area, depending on your personal inclinations regarding conventional, integrative or alternative medicine. One is in the northern Boston area and one in Hartford (both integrative with lyme as a specialty but they treat other things as well). The third is in southern CT and is the most conventional, specializes primarily in Pandas only (tho tests for lyme) and accepts insurance. If you know what sort of approach you'd like to pursue, we can probably PM you info on the doc most aligned with your leanings. Link to comment Share on other sites More sharing options...
Momto2boys Posted March 31, 2012 Author Report Share Posted March 31, 2012 Hi Momto2- This is NOT as good as it gets. I think, with aggressive management, you should expect 90% and better, 90% of the time. I think you need to get with a pandas specialist- someone willing to treat aggressively. Your son is on lots of meds- but he is not well? Makes me think they should all be re evaluated. It looks like you are treating him for allergies? Is this the case? We don't have allergies, so I cannot comment, but I know they can trigger some kids. I don't understand the every 2 month flare- are you seeing triggers to this flare up, or does it seem like a cycle? This may point to a chronic infection. My girls originally recovered with antibiotics only. Since that first time, however, we have needed something more: steroids and one time pex. Now- they tend to flare up if sick- but we try to jump on it quickly with steroids- and they are ok. so my advice fwiw- 1- get with a pandas specialist 2- test for chronic infection 3- if no chronic infection, treat with immune modulator- steroids, ivig, pex 4- manage aggressively, figure out how to deal with allergies (if present) Thanks for your reply, 1. Sadly we are with a pandas specialist 2. We have tons of testing- a whole gamut when we started with Dr. last year. Which tests will test for chronic infection? I will go back and go through his results so I can see if he has had those tests yet or if not I'll be able to ask at the next appt. 3. He has done poorly with the steroids- well gets better for a little bit but has tons of side effects that impact him as much or more than PANDAS. Honestly, I'm scared of IVIG and the doctor has not felt that son qualifies for it even though the doctor is known for using this. 4. He is doing allergy shots through specialist, is there something else we should be doing? The allergies are definitely a trigger for him. As far as the flare ups go...no real triggers- other than sniffles maybe but the idea was that he is taking so many meds to help put his autoimmune reaction to sleep so that he isn't getting sick all the time. It just isn't working and I'm really frustrated. Link to comment Share on other sites More sharing options...
Momto2boys Posted March 31, 2012 Author Report Share Posted March 31, 2012 any hx of lyme? not to keep beating on the lyme drum but steroids can make lyme symptoms worse, so getting worse with pain after steroids makes me think lyme He had full testing done through Igenex with no sign of Lyme so that should rule that out. Or is there something more I should be looking into? Also, thanks for you reply. Link to comment Share on other sites More sharing options...
Momto2boys Posted March 31, 2012 Author Report Share Posted March 31, 2012 My son is 12, 6th grade. Dx with PANDAS and ADHD in 4th gr. He presented with tics, extreme anxiety, small hints of OCD but nothing at real impactful level, emotional lability, changes in handwriting, inability to process math when normally brilliant at it and just a whole different kid from the sweet son I normally had. He saw his first specialist who made the diagnoses and managed it with prophylactic abx for a time but were then discontinued due to allergic reactions. We did address this and he was finally put back on but we saw a fairly regular pattern of flare ups every two months (confirmed with titers) where his behavior, tics, ability to comprehend at school went to heck.Doctor retired. We moved on to next specialist, had very different approach and high hopes. We did see a big improvement for a while but now seem to be back in this same pattern but not able to reach a consistent improvement. He is a smart kid who can do real well at school but then totally fall behind, forget or lose assigments, can't stay organized, etc. When the PANDAS is controlled he is bored in certain classes, when it is a flare up he is crying over little assignments. He is on: Augmentin 2x/day Omnicef 2x/day Singulair Intuniv (for ADHD) Loratidine (OTC allergy) Nasonex Vitamin D Omega 3 Probiotic Mucinex 2x/day Multivitamin Ginseng (recommended by GP for ADHD) Ginkgo (recommended by GP for ADHD) The omnicef was added for the current flare up. He has had prednisone on past flares but gets back aches, feels weak and lethargic and feels worse when on it but eventually seems better but not for long. Maybe I'm expecting too much, maybe this is just as good as it gets. Maybe it simply comes down to that I need to finally fight the school regarding the idea of a 504 (I was previously denied). The other part of this is that we have become increasingly frustrated by our doctor and his office. I'm wondering if it might be a good time to simply explore our options to find a better match which will lead to better care. I'm curious if someone has had good luck in the Massachusetts area and would recommend someone. I did look in the pinned list but did not see any Boston area people which I would think there has to be someone. I don't know who've you already seen, but I would agree about seeing Dr. B. I think he is more aggressive (in treating) than many other docs, which is a good thing. If I were in your area I would see him. Also, I want to ditto the concerns about Singulair. Dr. Murphy (at the IOCDF) specifically recommended against it for PANDAS kids. Was trying to be politely quiet about it but we already see Dr. B. That is who has treated my son for the last year. Thanks for the info about Singulair. I wasn't aware of that and he has been on it since last spring which is really concerning. I will address this with Dr. B. Link to comment Share on other sites More sharing options...
sf_mom Posted March 31, 2012 Report Share Posted March 31, 2012 Couple of things come to mind.... Could you request your PANDAS Dr. run the following. I think you have to keep searching for answers. 1. Viral Panel that includes: HHV6, CMV, EBV, Coxsackies, etc. I believe Lab Corp can run all of these. 2. KPU Urine Test: Potential vitamin and mineral deficiency and lacks fighting power to make headway. 3. Biofilm's: The test is run via Fry Labs and it could give you an indication that he is harboring infections housed in biofilms. Some information on test: http://www.frylabs.com/biofilm.php Link to comment Share on other sites More sharing options...
Momto2boys Posted April 1, 2012 Author Report Share Posted April 1, 2012 Couple of things come to mind.... Could you request your PANDAS Dr. run the following. I think you have to keep searching for answers. 1. Viral Panel that includes: HHV6, CMV, EBV, Coxsackies, etc. I believe Lab Corp can run all of these. 2. KPU Urine Test: Potential vitamin and mineral deficiency and lacks fighting power to make headway. 3. Biofilm's: The test is run via Fry Labs and it could give you an indication that he is harboring infections housed in biofilms. Some information on test: http://www.frylabs.com/biofilm.php Thanks! I will ask for all this. I'm printing your list now to take with us when we go in a week! Link to comment Share on other sites More sharing options...
Iowadawn Posted April 1, 2012 Report Share Posted April 1, 2012 My son is 12, 6th grade. Dx with PANDAS and ADHD in 4th gr. He presented with tics, extreme anxiety, small hints of OCD but nothing at real impactful level, emotional lability, changes in handwriting, inability to process math when normally brilliant at it and just a whole different kid from the sweet son I normally had. He saw his first specialist who made the diagnoses and managed it with prophylactic abx for a time but were then discontinued due to allergic reactions. We did address this and he was finally put back on but we saw a fairly regular pattern of flare ups every two months (confirmed with titers) where his behavior, tics, ability to comprehend at school went to heck.Doctor retired. We moved on to next specialist, had very different approach and high hopes. We did see a big improvement for a while but now seem to be back in this same pattern but not able to reach a consistent improvement. He is a smart kid who can do real well at school but then totally fall behind, forget or lose assigments, can't stay organized, etc. When the PANDAS is controlled he is bored in certain classes, when it is a flare up he is crying over little assignments. He is on: Augmentin 2x/day Omnicef 2x/day Singulair Intuniv (for ADHD) Loratidine (OTC allergy) Nasonex Vitamin D Omega 3 Probiotic Mucinex 2x/day Multivitamin Ginseng (recommended by GP for ADHD) Ginkgo (recommended by GP for ADHD) The omnicef was added for the current flare up. He has had prednisone on past flares but gets back aches, feels weak and lethargic and feels worse when on it but eventually seems better but not for long. Maybe I'm expecting too much, maybe this is just as good as it gets. Maybe it simply comes down to that I need to finally fight the school regarding the idea of a 504 (I was previously denied). The other part of this is that we have become increasingly frustrated by our doctor and his office. I'm wondering if it might be a good time to simply explore our options to find a better match which will lead to better care. I'm curious if someone has had good luck in the Massachusetts area and would recommend someone. I did look in the pinned list but did not see any Boston area people which I would think there has to be someone. Just throwing in a comment---Loratidine made matters worse (behavior-wise). The counselor we went to at the time said she had seen similar reactions in other kids & adols. Wish I had more to offer. We are really struggling again, right now. DAwn Link to comment Share on other sites More sharing options...
EAMom Posted April 1, 2012 Report Share Posted April 1, 2012 (edited) I'm curious if someone has had good luck in the Massachusetts area and would recommend someone. I did look in the pinned list but did not see any Boston area people which I would think there has to be someone. Contact NancyD (you can pm). She's in the Boston area and knows about many docs. Has your son been tested for the MTHFR gene mutation? What are the doses of Omnicef and Augmentin and how much does your son weigh? (I ask b/c I recently heard of a 125 pound child that was on 250mg of Augmentin daily to treat PANDAS...I'm like WHAT? That's a crazy low dose!) You know, don't feel bad about having to see a 2nd (or 3rd PANDAS doc). I know of so many PANDAS kids that end up seeing more than 1...they can't all be "hits" for everyone, nobody is going to be great for everyone all the time. I think with regards to IVIG, I would look at your son's trend. Overall, is he in a better place than he was 2 years, 1 year, 6mo. ago? How is his baseline? Is it getting worse or better over time? I would take all of these things into consideration. We waiting for 1.5 years before doing IVIG (pulled out of a severe exacerbation with prozac/azith/advil)...but after the severe exacerbation, we noticed dd's baseline was changing (for the worse) with each exacerbation (she is on Azith, but had exacerbations due to viral infections). Once we did IVIG, I realized it wasn't really such a big deal, and wondered why we hadn't done it sooner! Also, does your son have a lot of nasal/sinus issues? I would try xlear nasal spray (it has grape seed extract and xylitol). http://www.amazon.com/Xlear-Nasal-Wash-1-50-Ounces/dp/B000QYNWS2 Edited April 1, 2012 by EAMom Link to comment Share on other sites More sharing options...
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