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Everything posted by FLmom

  1. Dcmom, We are less than 2 hours from St. Pete. I assume you are referring to the USF program. I am looking into it. My only concern of starting it is if we do start it, how will I know what is making the difference: the therapy or the antibiotics? I don't know how they differentiate that.
  2. Qannie, That is great news! I'm thrilled for you that his flare resolved so quickly! jph, THanks for sharing your story. My son has similar contamination issues with things that his sister has touched (everything!) He has no place to sit in our living room to watch tv with us. Last night he brought in a lego box to sit on. I offered him money to sit on the couch, but my price wasn't high enough. I sometimes wonder if I should just raise it...after all, its much cheaper than what I was paying for therapy per session. And he's broken ocd habits before by my paying him, and then finally he realizes he doesn't have to do those things.
  3. When you say low Ig levels, do you mean any specific one? My son's blood work came out with low IGG, but the others were fine.
  4. Interesting. Did he have symptoms? Like lingering congestion or something?
  5. Thanks for all the advice. I will look into that book. I need the right script to follow with him. The sad thing is is that he is perfectly content with how he is. I know he really isn't, but he says he is, so telling him how/where he will end up doesn't seem to be working. He'd just as soon be dead, as far as he says. The blood work we got back from Dr. K wasn't significant--no strep, and low IGG (not sure what the low IGG means), so I'm not even sure he has Pandas. Last year HHV 6 was high, but both Dr. K and Dr. Murphy downplayed it saying most do show that in blood work. I will push it further if we don't see results with antibiotics (if he will take them continuously). I figured I'd let him try the ibuprofen test through the weekend and see if I notice a difference. His mood seems calmer(but his mood cycles normally, so I don't know if it is related to the ibuprofen), but OCD seems about the same. Should I expect to see improvements with OCD while on it? I so wish I would so it would confirm what we are dealing with.
  6. I'm glad your son is finally getting treatment! I hope all goes well. I'm fairly new to this, could you tell me what Myco P is and how it was diagnosed? Thanks!
  7. My son told me this morning he gets a headache at the base of his skull--he described it as an inner burn. I don't think it is constant, but just something he has taken notice of. I'll have to ask him more about it. If it is Babesia, how frequent would it be?
  8. I have told him he'd need to go in the hospital if he doesn't take them, but I don't think he's buying it. At this point he is so miserable that he doesn't care about the consequences. I did get him to take 2 motrin last night and grapefruit seed extract. I'm wondering if I should just push the Motrin this week and forget about the abt and see if he has an improvement with the motrin. Dr. K wanted him to do two weeks of augmentin(which would have ended yesterday), then a steroid burst. But when we saw Dr. Murphy last week she wanted him on the augmentin at least a month to see if it helps. I'm not above paying him to take them, but I know his price will be high. I had to pay him to get blood work, and he got me up to $15 per vile. I had no idea they'd be taking 8!! He settled with me buying him a $10 video game that was rated M that I didn't want him to have, plus $40. Plus there is really nothing he wants to save his money for, other than violent video games, which I hate him playing, so he really isn't that driven by money since he has about everything he could possibly want. He only real drive is the video games, but it kills me to let him play those as a reward-with their violence and language- when he is so awful to us.
  9. I could check about the liquid. Not sure if that would solve the problem since his issue seems to be with having to be on meds, and the fact that the medicine is contaminated by whoever made it.(he is even this way with supplements), but it's worth looking in to.
  10. Oh geesh, don't really have resources. Just those that say he needs to eat healthy, take supplements etc...but he won't do that. I don't drink, but if I had some in the house, I'm sure he'd drive me to it. Generally he eats something like a frozen pizza or hot pocket for lunch. About all he will eat anymore for dinner is sometimes a hamburger, but lately he's said they are disgusting and make him want to throw up. We do eat out several times a week, just due to our schedule, but at home he eats very little. I guess other people's germs don't bother him as much as ours.
  11. I wish he would do a smoothie. He has bigtime food issues. He's had half a waffle this morning, and potato chips the rest of the day. I was making him a frozen pizza for lunch, but I contaminated it. So I had to put another one in. That one got burnt up in the oven after him cursing me-I figured he could take care of it himself. But that would mean he'd have to touch something to get it out, so that wasn't happening. SO then he just decided that since he couldn't find a gun, he'd starve himself and be dead in three days. A little while later he came out and said that he'd starve himself on another day that he wasn't so hungry, and proceeded to eat chips.
  12. My 13 yo ds, who started augmentin 2 weeks ago is now refusing to take it. He says he doesn't want to be on med. He has been off and on about it for the past week, but today just adamantly refused. Today has been a very bad day-depression, suicidal, not doing school work, refusing to go to school anymore, cursing me and his sisters. I don't know how to discipline him anymore. I don't know how to encourage him either-he makes me so angry with the way he treats us and is repulsed by usbthat I just don't want to be around him. I feel I have nothing left to bribe him with to take the augmentin. Reason doesn't work. I'm at my wits end and have no idea what to do with him anymore. I don't even know if it is Pandas/Pans or just wishful thinking that it is something that can be cured. But whats the point anyway if he isn't cooperative with the treatment. Sorry if this is confusing...my emotions are running wild and my thoughts are spewing.
  13. My son had had the Herpes 6 ran last year and it was positive. I was able to get an appointment last week with Dr. Tanya Murphy last week and I asked her about it. She seemed to think he was more likely to have strep as the etiology with the way he presented. I asked her about the Herpes 6 and perhaps trying Valcyclovir (spelling?). She said when it is viral like that, they are usually much more, gosh I don't remember her words, but like more acute and severe is what she I took from it. Dr. K said they was finding that PANS doesn't really exist...that it is all Pandas. So I'm not really sure what to think. Here are two top researchers in the field who are downplaying it, but clearly from the experiences of many here, there is a connection.
  14. My son had blood work done for Dr. K last week. He finally got it in today and his receptionist said he told her the strep titers were normal. She faxed it to me and this is the gist of it: Streptozyme screen-------Negative DNASE S Antibody--------<95 (Reference <376) He also ran an immunoglobin panel--everything was in range except Immunoglobin G ----- 694 L (reference 893-1823) Immunoglobin G Serum 729 L (reference 893-1823) Those don't seem extrememly low, so I'm not sure if they are significant. Was really hoping for a positive strep, even though I've heard it doesn't matter if it is negative, it could still be strep. Some more blood work was done on the same day for a different doctor. I called about those today and it will be about 3 more weeks awaiting the C4A, but she did mention something about white blood cells being low. Does that typically go along with Pandas? Thanks, Ginger
  15. Unfortunately I only have 10 days worth. So I'm hoping to see a change before then. I think that the 875mg is the highest dosage of Augmentin except for the XR--not sure how they compare. After this Augmentin, we are trying a steroid burst (if I can get my doctor here to give it to us), then if still nothing, I'll ask for the Zithromax.
  16. Feeling discouraged. My son started augmentin 875 on Wednesday and he still has just as many issues as ever. I was really hoping to see a change within a few days so I'd know if we were on the right path. I only have a 10 day supply and if no difference we are to do prednisone. But I don't know if the PA will be on board with that and prescribe it. Just wanted to vent a little.
  17. How did you get in on the study? Are they still accepting?
  18. What is C-diff? Simplyshine, what was the results of the swab?
  19. The dosage is 875 2X/day and my son is 110lbs (13 years old). I don't think I want to attempt the Sacc Boullardi at this point if there is a chance it could make my son angry...he is angry enough as it is. Is Augmentin upsetting to their stomachs? I'm afraid of that.
  20. I just talked to the PA who has seen my son and is more of an alternative practitioner. He agreed to call in the Augmentin with major reservations. He said it is an extremely high dose and is wondering why Dr. K did not mention giving him probiotics to keep the gut healthy. I'm concerned now that it is such a high doseage that my son will have ill side effects from it (upset stomach etc) and will begin to refuse to take it.
  21. Dr. K's office said that because he hasn't actually seen my son, he could not write a prescription. Did he see your child before prescribing?
  22. What would be 'approaching from an autoimmune standpoint'? Dr. K also said one band did not indicate lyme, but the practice that did the work up on my son last year are known for treating lyme(this is not my son's regular ped who refused to give the trial augmentin). And the PA felt that it was enough...so I'm not sure. I will ask about the Shoemaker Panel.
  23. I had a phone consult with Dr. K in Chicago yesterday regarding my 13 year old son.(I posted a more detailed description of his issues/bloodwork a few days ago under something like "neurological symptoms only-lyme".) Dr. K suggested he do a two week trial of Augmentin, followed by a steroid burst, if no improvement was seen while on the antibiotic. I was to call my pediatrician to request this. I just got a call from my ped's office saying that they will not give it to me. That she wants me to see a local infectious disease specialist, and that she looked up Dr. K and saw he was more 'alternative' and would not just give out medicine like that. I've got a call in to Dr. K to see what he recommends. I'm very frustrated. Has anyone else had issues getting their ped to go along with his, or another specialists, recommendations?
  24. He could have been bit--he was very outdoorsy. We just aren't in an area that is supposed to have lyme. But I've been told that doesn't matter.
  25. This blood was drawn a year ago and his Herpes6 IGG was 1:160 with a reference of 1:10. His Herpes6 IGM was <1:20 which was normal. Does anyone know if Dr. K is familiar with this particular virus? I don't mind traveling if that is what it takes. @3bmom--is your older son being treated and how is it going for him?
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