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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 so
  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 wors
  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 home
  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 bac
  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 th
  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 so
  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 kno
  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
  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,
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