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Everything posted by MMWG

  1. Hi all- I need some suggestions from those of you who will not be surprised with all of the issues we are trying to balance as we make strategic decisions about treatments going forward. I just need helping thinking through all these considerations. In short--My son was diagnosed with PANDAS 4 years ago, and I would say at this point we have it relatively well managed. He is on preventative abx (cephalexin), and we homeschool--which I think may have been the single most helpful proactive strategy we have used to keep him well. Like many of our kids, he has anxiety issues as well as some adhd like issues, which are always present but significantly worse in exacerbation (and our clear sign of a reaction, along with joint pain). However, these days his reactions are fairly short lived--we up the abx, hunker down til he seems better, and go on with life. He is on medicine for his anxiety and adhd, which has been helpful and a good part of our plan. He has always suffered chronic constipation issues, and after seeing a pediatric GI, is on a regular combination of Miralax and Ex-Lax, which seems to work relatively well. However, most days he has a seriously distended belly, and we can't help but notice a real connection between his constipation/stomach issues and his mood. The better his stomach acts, the better his mood and behavior are. Last spring we saw a psychiatrist who specializes in treating mood through strengthening stomach health---the idea that most of our immune system is contained in our gut. She gave us some suggestions for nutritional supplements that she has had success with, and we have that on our list of options (but I hate introducing MORE things for him to take). The idea of gastro-neuro connection is intriguing to me, and I know in my heart this is a key to helping him feel as well as he possibly can. I want to focus on strengthening his stomach health. I think it may be a key to his mood regulation. Finally, this summer he had a bizarre bacterial infection in a wound in his leg (apparently from a cat bite? we had it cultured) and went on a nasty round of bactrim. it didn't cause a pandas reaction, but it didn't help his stomach at all, and the fact that he even contracted it scared me, as it tends to only be an issue for people with weakened immune systems--which i am guessing is due to the regular antibiotics he is on. Okay, so--here are the decisions I am wrestling with: 1) Introducing probiotics. We are going on 2.5 yrs on regular antibiotics, and every time i see his poor distended gut, i wonder what else we could be doing to help it. I went to the natural pharmacy and they recommended their "best" probiotic, but the strep strain in it freaked me out, even after the rep on the phone assured me it was the kind of strep they use to create kefir and such, not the nasty kind. the person at the store was very helpful but he looked overwhelmed with all of the things we were dealing with and i left without anything at all. I just read a great article about probiotics that have helped with mood issues, which brought me back to the gastro-neuro connection. What probiotics would be helpful with constipation and also help counter the impact of all these antibiotics? 2) We are on the fence about staying on the preventative antibiotics. I begged for them in the beginning, and we have been strep free for 2.5 yrs. But since we homeschool, I am wondering what the risk/benefit analyses are on staying on them--especially if it is making him succeptable to other infections like the one he had this summer. He just turned 8, so there's a lot of years ahead. Has anyone gone off the abx? It scares me, but I also don't want to do more harm than good. Sigh. This is probably too much for one post. Just not sure what to do. My pediatrician is wonderful, and we are managing the pandas together, but when i have asked about probiotics in the past he hasn't seemed particularly concerned or in favor. If anyone has input, I would welcome it. Just trying to process.
  2. I am not sure if anyone has mentioned this yet, but for many of us, PANDAS symptoms (anxiety, ocd, fine motor problems, agitation, etc) do not immediately stop after strep infection is cleared. That was tbe initial reported pattern of PANDAS (acute onset with improvement with abx)--we see some improvement once we treat the strep, but for us it takes a good 4-6 weeks at least to see my son get back to his old self...on the conservative side. I have explained this to our doc, because I think this is a misperception--that once the strep is gone, the symptoms are immediately gone. For us, the worse the exposure, the longer it takes for the inflammation to go away/symptoms to subside...meg
  3. So I clearly see an episodic course to our pandas when we have an illness, that one is a no brainer. But I have always felt that on any given day, or given week, my son (6) can seem like he is clearly out of sorts. I thought on a daily basis it might be due to food or blood sugar--which led us to discovering his very low vit d level, and we are looking into some issues about absorption, etc. However--i can tell when he wakes up if it will be an "off" day--there are days when he is just out of sorts--won't listen, no impulse control, bossy--we just had one of those days. Our tutor (we homeschool) said he was acting odd--not necessarily sick odd, but bossing her around, being difficult, not being able to focus...out of the blue they were making cookies and he bopped her in the face--not in a mean way, but just like it occurred to him to do it and he had no control over it. She said he was even hitting himself in the face. He ripped his worksheets during school, etc. When I got home I totally saw what she meant--he grabbed jello out of the fridge and poured it into his mouth with no spoon, getting it all over himself, his face, the floor...and when i told him not to go near the couch he just ran to it and jumped on it. I took him to his room and he was just so agitated! within 5-10 minutes he passed out. It almost seemed manic to me (but we don't see any depressive, which makes me not think its bipolar). Like I said--we can have just one episode like this in a day and then he'll be fine, or days like this when it is ongoing, or weeks with no problems at all. We have tried modifying the behavior, discussing it, punishment, you name it--and it just happens again--which makes me think he doesn't have any control over much of it. I am wondering if other PANDAS kids have this behavior pattern? It's so hard on all of us. It's like so many other things we experience--he has anxiety, but usually as a product of his pandas. he has adhd symptoms, but they seem to wrap into his pandas. is it all related?
  4. I posted at the end of my other thread but thought I would make a new post too. We got our labs back and the Vit D levels were pretty low. They broke it down into d2 and d3. They add them both together to get overall level of Vit D. His d2 was <4.0 and his d3 was 14.0. Total Vit D was recorded as 14.0, with normal range being 25-80. He eats very well and eats a lot, including milk, eggs, cheese, etc--and takes a multivitamin as well, so I am stumped. He has chronic constipation. Wondering if they are related. Immunologist said Vit D levels would be critical to look at, so are going back there to consult with him. Wondering if a pediatric GI might be our next stop. Anyone else deal with this?
  5. I just picked up the labs. His Vit D level was broken down into 2 types: d2 (which i believe is the kind we get from food) and d3 (from sunlight and created in the body). His d2 level was marked <4.0, which Mayo calculated as a zero in the total Vit D level. His d3 was 14.0, giving a total of 14 on Hydroxy D total (normal range is 25-80). If I am interpreting this correctly, it doesn't look like he is getting any or very little Vit D from food, or from his multivitamins? He eats a very balanced diet and he eats TONS.
  6. Just got our lab results back. I respectfully requested a long list of labs be run--including co-infections, ferratin, vit d, immune panel, etc and our pediatrician was happy to oblige. We saw an allergist/immunologist in between the time we gave the blood and the time all the results were back (just to rule out allergies triggering his symptoms--since the latest swedo paper I have been on a mission to rule out everything that might be triggering him). No allergies, but I talked with the immunologist about possible intolerances since ds has horrible constipation and has since birth. He said the Vit D results would be very important to look at as they might suggest absorption or intolerance issues. Good news is all our labs came back clear with the exception of slightly elevated neurtins (suggesting recent bacterial infection or inflammation, big surprise), and a vit d deficiency. Pedi advised giving 400 ius of vit d a day (he already gets a multivitamin that gives him 400 IUs a day on top of what he gets from other sources). Question for all of you is what the vit d deficiency may represent. I know we could address it by increasing the Vit D, but I am interested in why it is deficient. The kid eats like a truck driver, a very well balanced diet with tons of sources of vitamin d. Is this an autoimmune connection? Could this be behind the constipation? Could this be why he looks like morticia adams when he is not well (pale as a ghost)? Thoughts? going to see if i can get a consult with the immunologist again now that the labs are back...
  7. Thank you all for your wonderful responses! It is nice to know we are not alone. I really don't think he has control over it, but I do echo dcmom's sentiments about making sure we nip in the bud whatever he can control. It does look ODD, but he is so remorseful afterwards and seems to want so badly to stop doing it. I will be pm'ing many of you. thanks again.
  8. Our son (6) is lovely, spirited, and happy 90% of the time. He is strong willed by nature. We have been dealing with pandas for 2.5 yrs (at least) and i would say it is more chronic now than episodic, though we definitely see a spike in behaviors when exposed to just about any illness. However, we have the weirdest situation--at the drop of a hat, out of nowhere, something will not appeal to him or he won't want to do something (go to the store, read a particular book for school, etc) and his personality changes 180 degrees. He locks into refusal, becomes rigid, emotional, combative in some ways (sometimes throwing things, sometimes just refusing to do it, on worse days, hitting and kicking to fight doing it)--like a pure fight or flight response kicking in. I know him better than anyone, and it seems like he feels under threat by the request for some reason, even if it is nothing hard--just something he would rather not do. His response is totally extreme and out of line for the magnitude of the request or event. This happens anywhere, with anyone. His tutors (we homeschool) are blown away at how out of nowhere it comes on, as are we. My MIL was watching him for an hour for us and she asked him to put his drink on the table instead of on the couch (which he normally would do happily) and he went ballistic on her. Looking back, I think it has always been this way--and we can't seem to predict or map when or why it happens in response to somethings vs others. It definitely happens more and worse when he is in an episode, but it can happen at anytime. When it happens, we have tried everything--punishment, understanding--it doesn't last long usually but it is still traumatic and emotional for everyone, and makes life rather unpleasant. The thing that works best seems to be distraction--taking an abrupt right turn and focusing on something else entirely, changing the subject, etc. I was reading a great article about meltdowns in gifted children (he is also highly gifted, which adds a whole other element of fun to this), and it said that the key is to get the child to switch from responding emotionally (from the back of their brain--basal ganglia!) back to the more rational front by asking them to do something cognitive--like reading something, they suggested separating beans from a coffee can--to help them reboot. It has worked very well for us the few times we have tried it, so we are working on using that. My question is whether this is an OCD thing? Is the rigidity due to him thinking something MUST be another way, and then when he locks into it, he can't unlock? It's like he wants to behave, but can't---and then gets so anxious that he is in trouble and screwing up that it all goes to ######. Is this an OCD behavior in a 6 yr old? Or is it anxiety, losing control, fight or flight? I am trying to figure out why it happens SO suddenly--out of nowhere. I am going to track the meltdowns to see if there is any patterns--could it be blood sugar dropping that makes him more likely to do it? Something he eats? Time of day? (Welcome to crazytown, I have to understand why things happen). Our wonderful doc agreed to order the lab tests I asked for to look for co-infections and such, so we are checking that route out. Just interested in whether others experience this pattern as well, and what your take on it is. Thanks--Meg
  9. How aggravating. I completely agree with you that people need to be upfront about their concerns and beliefs so they can be addressed, and if they aren't willing to look rationally at things, get out of the way. It's an interesting balance, especially when you are an intelligent, informed, research-savvy parent. You have just 1 (or in your case, 2) patients--your children. and you will advocate for them all you can, and know them better than any doctor could. Yet you are at their mercy, as you don't have access or ability to get the tests or treatment you need for your child. Too much knowledge without enough power. Hoping the ridiculousness of this ends for you soon and your son can get the treatment he deserves.
  10. I have a good friend whose son has HSP. I am not sure exactly, but I believe it started or was diagnosed after his appendix burst. He has a particularly rough time of it--he is 10 and has had it for about 3 yrs now.
  11. Definitely. My son is 6. He is sweet and lovely but can go into full fledge fight or flight when something sets him off, especially during a flair.
  12. This is the first I have heard about the "if you it gets triggered 3 times, it become chronic"...I totally believe it, but i had not heard anyone be that specific before.
  13. Thanks. Just got back from the doc. Gave him the new Swedo paper. He upped our abx and our miralax.
  14. My kid is crazed right now. He is sick and on more abx, but this morning he locked in about not wanting to read at school and went completely crazy--hitting me, kicking me, i looked in his eyes and he wasn't even there. I need to bring him to his doc, but I want to request an immune panel and co-infection testing--and I need a good, solid article by an expert suggesting this is advised. Can anyone help me quick?
  15. thank you! my son has had chronic constipation since he was 2. I asked about allergies several times but our pediatrician is not interested in those discussions. I had the same thought as your wife--I am sure it is safe, as they say, and that many kids are on miralax, but it seems like it might be masking something deeper that we have no insight on. With the incredible sensitivity to bacteria and viruses, it doesn't seem that unlikely he would have a sensitivity to foods or environmental factors. Can you just go to an allergist and request the tests?
  16. If I do see these people, what tests to I request them to run, on what specific grounds?
  17. I have an email in to a good friend of mine who is an osteopath to see what she thinks. She lives 10 hrs away but I would totally go see her if she was willing to help us look into these things. I am thankful our pediatrician is so trusting of my input and helpful with the PANDAS, but he doesn't seem interested in these related issues. I just don't think the kid should have to be on 2 capfuls of miralax a day--this is 4 yrs he has been doing this.
  18. Thanks for the support on my earlier post on how sensitive my ds seems to be to any germs. I can't keep this poor kid in a bubble!!!
  19. Hi all-- My ds (6) has PANDAS and we are homeschooling him because of the extensive negative reaction he seems to have whenever he is with a group of kids in a closed in space for extended periods of time. Our pediatrician explained it as him having a very sensitive antennae that reacts whenever someone near him has an illness of any kind. We have him on preventive abx (cephalexin). He has been healthy and doing pretty well since September (a few isolated incidents here and there, but controllable). Last week I took him to a birthday party and within an hour one of the moms mentioned her son was running a fever (of course the mom of the little boy he had been playing with for an hour!). I cringed and we soon left. 4 days later we started seeing PANDAS like behavior--becoming very rigid about something all of a sudden, locking in to something he wanted and refusing to budge, refusing to do things he normally would love (games and puzzles with his tutors, hiking with dad, etc). He started taking naps in the afternoon and was very sweaty, which I suspected was his version of being sick. We have seen more and more of these episodes occurring this weekend, closer together and more severe than what is normal for him. A few meltdowns once in awhile is typical for him (whether it's PANDAS or his temperament, I don't know, I have given up trying to figure that out). As he gets older, we are trying to be firm as possible about his behavior--even if he is sick, we want him to try to find more appropriate ways of letting us know--and he is very strong willed so it is tough to tell what is under his control and what isn't. It drives me crazy trying to make sure we are correcting behavior that is under his control while not punishing him for things that he cannot help. Anyway, it became pretty clear to us that he didn't have much control over these episodes this weekend, he could recover but only after he fell asleep, or after a long while cooling off in his room. The kicker for me was this morning. He started school with his tutor like he does every morning, and I was waiting to make sure they got into a rhythm before I left for work. I heard him refusing to read his part of the story, and she was trying to talk him into it. When I went up there to straighten him out about who was in charge (we have to do that every once in awhile), he refused to look at me or read. Normally I can get him straightened out. I told him he had to go to his room until he was ready to listen to his teacher, and he went into full fight or flight mode, screaming that he needed to be in school and do his schoolwork--but refusing to read the book. Finally I took a deep breath and sat down with him in my lap, had him take some deep breaths, and asked him if there was a problem about the book that I was not understanding. He said "Yes, I can't read that book (he is an amazing reader, and he really wanted to know what happened in the book, so this was weird). It makes me have to clear my throat too many times." This sounded so PANDAS-like to me--that the book would make him have to clear his throat. I asked if he would be able to listen to that book and then read the other one that was on the schedule, and he said yes, that would be fine. So we did that. His tutor said he made it through half of the other book before stopping all of a sudden and saying he could not read that one anymore. She steered around it and went on. Our pediatrician raised his abx to treatment dose this morning after I called him, so I guess we just ride this out. His tutors are great and understanding. I had signed him up for a homeschool co-op that was to start this Friday that would allow him to be in a class with other kids his age all day on Fridays, and I could be with him. But after seeing how sensitive he still is (one hour with a kid with a fever=one week (so far) of exacerbation) I made the tough call to pull out of the co-op. I am afraid it's too many germs to expose him to. Am I crazy? Can he really be THIS sensitive to germs? How is this poor kid going to have friends? We have had some success inviting a couple friends to go on field trips with us, or over to play...do I just keep that up instead? Our pediatrician talked with Dr. Murphy and he said she suggested minimizing exposure at all costs til he is in at least third grade. She said the fewer times his antibodies rise in reaction to exposure, the better off he will be long term. I guess I need someone to tell me whether I am being paranoid and sheltering this kid too much, or whether it is quite sane and reasonable to not let him be in a closed space with 15 kids every Friday given what just happened this week....
  20. Our doc said the latest school of thought on PANDAS is that our kids have such a sensitive antennae that they detect bacterial illnesses (or other kinds) from other people and can react within hours. I have always thought that to be the case in our house. We saw a reaction within an hour to someone who had the flu, and other timeframes with other things. He said the inflammation from being around someone else's illness can trigger any of the neurological symptoms. I echo uppling the abx to treatment dose and using the advil liberally to control inflammation. Stay calm.
  21. Praying for you. It sounds like you have a good support system around you--make sure you use it!
  22. I honestly think joint pain has something to do with it for many PANDAS kids. Other autoimmune conditions (such as Rhumatoid Arthritis) affect joints, and it stands to reason PANDAS may as well. For us, our son would not hold a pencil or crayon for 2 yrs (2-4 yrs old) and when he was finally diagnosed and treated, he started to be much more willing to write (but he still hates drawing and coloring, and won't do it). I think it is tough for him because he lost those 2 yrs of practice, I think it sometimes is painful for him, and I think it makes him anxious because he knows he isn't good at it, and for us--anxiety leads to refusal (although sometimes our stubbornness leads to refusal....)
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