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Lkaanda last won the day on July 5 2015

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  1. We started the Mepron about 10 days ago. His TICS seemed to increase after a couple days. Today was especially bad. Trying to get him to sleep tonight was horrible. He could not stop moving, twitching, kind of gasping for air. He almost looked like he was having convulsions. He so wants something to help make it all stop. We actually reduced the amount of Mepron he was getting ourselves after reading some comments here. Especially since we couldn't get any help from the office. I mentioned what was happening to the nurse and she just suggested ibuprfren which we have tried and have not seen it help. Interestingly enough we got the results back from the lab and it shows that according to his levels an antibody for Babesia was not present and mycoplasma was negative. So I am really wondering if we shouldn't just take him off the Mepron. I dont know if he could just be having a negative reaction to the Mepron itself. I won't know more from Dr. B. until our phone consult on Sept. 9, the soonest we could get. Thanks for your help. Hopefully tomorrow will be a better day.
  2. Thank you all for replying so quickly. We came to the conclusion of doing the IVIG because we can't seem to get any relief from these tics. I know when I see what many other parents are going through I feel we are lucky that the tics are the worst part for us. But of course as he tics more and more and with school coming up so soon we feel so desperate to do anything that might help. MomWithOCDSon, the woman's scheduling the IVIG says she is amazed at how many times parents get to this step with out really understanding what it's all about. I guess they need to figure out a better system for explaining it all, cause Dr. B. is so busy all the time and must assume we already know all the information. One time he did show he was a little elevated for Babesia, so we are trying Mepron and Azith. So far I only see the tics getting a little worse. But then again that could just be the change in his tics and not really a sign of anything else. Still waiting for recent bloodwork. Of course even finding the results of that requires another office visit or phone consult which is a little frustrating. I will look more into the methylation that you mentioned llm, and see what that is all about. We are always looking for ways to help him. Tj21, when I do hear that someone has results with one that's what we were hoping for. Of course anything out of our network is not covered so this won't be covered for us. From what I understand he will not be taking any insurance starting in January so that will be tough for a lot of people. Thanks again for your help!
  3. Just recently had a visit with Dr. B.. We have been talking about doing IVIG for my son. We had tried to get it covered in the past through our insurance, which was denied.Each time we talked about it, my husband and I were under the assumption it was for a one time IVIG. Even this recent time we discussed the cost as being somewhere around $6000 which our insurance will not cover. While talking with the woman at the office to make the appointment, she is reading off his prescription and mentions "every 4 weeks" in the middle of it all. Of course I ask her what that is about and she says they don't do it only one time. She said doing it only once can actually cause more harm than good. This is news to us. If someone said he would be cured after so many times of doing it, of course we would find money somewhere. But to spend all that money not knowing if it will even help is tough. I though I have seen people on here say they have had it once or twice and some have had luck with it. Just wondering if anyone has had that experience. Dr. B. won't be back in the office til Monday so can't find info from him just yet. Thanks for your help.
  4. Thank you for your help. We have not done the Cunningham Panel yet. We talked about it, but did not feel it would change the outcome of the treatment. And of course since our insurance doesn't cover anything we are doing we have to really watch where we spend our money. Unfortunately the IVIG will be out of pocket which I believe he estimated at $5000. We are very hopeful that this will help him with his tics, its nice to hear that it has helped other kids. Now to figure out the allergy shot part of it. Thanks again for your quick replys!
  5. Hi. We have been seeing Dr. B. for a while now for my sons PANDAS. We have gone through most antibiotics, and have not seen great results for his tics. Emotionally he has gotten much better over time. We are at a point where IVIG is being discussed. For him the tics are the worst part. I am wondering if anyone has seen results with reducing tics after going through IVIG? I though I have read that it does not help with tics. Also wondering if anyone has had allergy shots made up through Dr. B. or another doctor and had to have them administered somewhere else? He tested positive for dust, trees and mold and we are discussing starting him on the shots. We just don't know who would administer someone else's shots and if it would be the same as our out of office copay of $50. That would add up fast. Thanks for your help.
  6. My son is pretty quiet and not so assertive, so we will have to work on him feeling confident enough to say something. Because its the first time he is being asked he is concerned about it. He has woken up the past couple school days very teary, worrying about someone talking to him about it. Luckily they are not being mean, just inquisitive as kids are. Thanks again for the advice, it's nice to hear from other parents who understand what we are going through!
  7. I think we will try saying its an allergy and if they press him for why he can't stop, then he could mention the idea of comparing it to blinking. Thanks for your advice!
  8. My son is 9 and has had PANDAS for a couple years now. His tics come and go and change. Most of the times, kids either don't notice, or don't say anything to him. Today a girl in his class asked him why he was making the throat clearing noise he has been making lately. It's more of a throat clearing with a higher pitched squeaking sound, so it's pretty noticeable. When l asked him what he said, he replied that he said nothing and stopped doing it. I am sure he may have been able to stop, but not for long. I am trying to figure out what is the easiest thing for him to say to his peers, if they ask him about a tic. What do your kids say? We have never had to get to the point of needing to come in and have a special talk with the class to explain things. Thanks for any help you can give us.
  9. Hi, I am also in Monmouth County. Have you started a group yet? I would love to know about it if you have. Thanks. Lisa
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