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danddd

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Posts posted by danddd

  1. Hi everyone,

     

    dd11 and dd6 saw my lyme doc. i was never thrilled with him, but he believes in chronic lyme, gives long term abx (has spoken at ilads conf.)so i thought it would be ok. but he does not understand pandas/pans and difficult children in general. (when i told him that dd6 was refusing meds, and having bad meltdowns over it, his response was for her to "keep taking the medicine") anyway, i am frightened to just go to another doctor, with this bad hospital stuff going on.

    i really do need a new llmd for them, but one that takes insurance. (as you all know thats another issue, currently have hp, but thinking to switch, we had a good run of ivig approvals with them, but i think we are at a dead end, cant even get office visits now)

    any suggestions would be much appreciated. thanks! i posted in the pandas forum too.

  2. Hi everyone,

     

    dd11 and dd6 saw my lyme doc. i was never thrilled with him, but he believes in chronic lyme, gives long term abx (has spoken at ilads conf.)so i thought it would be ok. but he does not understand pandas/pans and difficult children in general. (when i told him that dd6 was refusing meds, and having bad meltdowns over it, his response was for her to "keep taking the medicine") anyway, i am frightened to just go to another doctor, with this bad hospital stuff going on.

    i really do need a new llmd for them, but one that takes insurance. (as you all know thats another issue, currently have hp, but thinking to switch, we had a good run of ivig approvals with them, but i think we are at a dead end, cant even get office visits now)

    any suggestions would be much appreciated. thanks! i will post on the lyme forum too.

  3. so, we were doing a bit of research with our ins. broker about switching plans or carriers, and got some really bad news: harvard pilgrims most recent medical review criteria for ivig treatment, dated jan. 10 2013, specifically EXCLUDES ivig as a treatment for pandas.

     

    this is so bad, dd11 has been struggling since having a flu like thing, and abx arent cutting it right now.

     

    i dont understand how this can be, when it has helped so many children. i mean seriously, we dont push for our kids to have a 2 day iv with yucky side effects for no reason. things are bad if you need an ivig!!!!

    sorry for bad news, i am going to try and forget about this for tonight.

  4. dd11 was on biaxin (pandas and lyme), she had diarrhea for a month before telling me. Then we fought for another month over probiotics, she refused them. when we saw pandas doc we switched to azith and he told her to take probiotics. so, she is taking zith, and probiotics and she still has diarrhea every day. it has been @ 3 mo. i am not sure what to do. over the years we have tried many probiotics, she literally will only take the culturelle capsule opened and mixed with juice. has anyone had any luck with natural antibiotics, would it be enough to prevent strep and help with lyme?

     

    To add to the trouble she has been going downhill, and past couple days have been so bad. we havent had days like this in a loooong time. maybe she needs ivig agian? she did so well after 6 of them, untill recently was even going to school everyday (with accomodations). it was great.

    any ideas?

     

    thanks

    dan

  5. Yes! I totally agree with Ko's mom and LLM- a rally of some sort! Since beth is an attorney, she would know the legalities of it. has anyine run it by her? i dont think you can go near the hospital, we could get in trouble for getting in the way of emergencies and such (even if we are not). but if we all came together!! so many of us!! it would bring lots of attention, dont you think? we'd be respectful though, not rude or crazy.

     

    dan

  6. Hi everyone,

     

    not sure what the rules are around here anymore (as far as names etc.) so i will give as little info as possible.

    any one of you pro's can then fill in blanks for me if you know what i am talking about, and know what can be said (typed).

     

    for those of us in the boston area, i got a warning about a hospital and pandas. i am sure you can assume which one, we all know it.

    but this is really disturbing, anyone can p.m. me for more info.

    sorry if i make no sense

    good night for now,

     

    dan

  7. I un-knowingly had lyme for @20 yrs. one of my earliest memories of feeling "wrong" were food related. my family called them my moods, i would shut down and feel physically ill, ramdomly when it was mealtime. when the feeling was over, sometimes after lying down, i was back to normal. i lived off of fluffernutter and hoodsies for a while. my dd suddenly stopped eating everythig but strawberries cheese crackers and white fish when she was 3. she was a great eater before that, she is now 6, last year we found she has lyme too. i think it is a sensory thing for sure. she gets soo upset if she doesnt know what to eat, or if we want her to try something. she cant handle it. i have sympathy for her and everyones kids with this sort of thing, since my experience was different but still similar. i do worry though, at dance classes she looks so skinny, i am afraid of what others may say something out of concern. but then i tell myself who cares. hopefully lyme treatment and lots of encouragement will help (them all) gain weight!

  8. Hi all,

     

    We are having a hard time right now, dd11 has had 5 monthly ivig's, lyme treatment, and is still struggling. My plan is to take her out of public school-she misses so much for her appointments, and sometimes is too stressed out to function, so she is waaay behind and they would not tutor her. The plan for middle-school was to give her a resource room and the slow classes, (eventhough she is of average/above average abilities in her testing). I just cant send her to that when it is the environment that causes so much anxiety. The problem is, i dont want her home either. she drives everyone crazy, is destructive when she has bad thoughts or is bored. sure the social stress etc. would be gone, so maybe it ould work. I dont have a clue anymore.

     

    same with doctors, they all are so far (i am too sick to drive to most, so it takes 2 adults to get to them), and I cant find a decent lyme doc that accepts harvard pilgrim. cant keep putting it on the card, almost no room left. i dont know what to do.

     

    i am afraid pandas/lyme stress is really shortening the lives of the adults in the house (me, my husband, my mom and dad).

     

    any ideas? on anything, or just positive thoughts?

     

    dan

  9. Ok, so my dd11 has pandas, lyme and bart. and we got out of network approval for her to see one of the big pandas docs. he is great.

    But now dd6 has lyme and babesia, and so far no to pandas. problem is her sisters pandas doc is the one that found the infections (thank goodness, everyone else said "she will grow out of it"), we did not expect him to glance at dd6 and be concerned, but he did and was really concerned. it was very on the spot, unplanned. so now insurance has denied and told me to see a certain infectious disease dr. L at childrens.

    personally with my older one i never had luck at childrens, so i am asking that if anyone knows who i am talking about, or has anything to share, please let me know. I want dd6 to stay with the pandas doc, but i dont know, if anyone says "oh that doc at childrens is really good" them maybe i will make the app.

     

    p.m. me if you dont want to post.

     

    i will also post in pandas forum too

     

    thanks

    dan

  10. Ok, so my dd11 has pandas, lyme and bart. and we got out of network approval for her to see one of the big pandas docs. he is great.

    But now dd6 has lyme and babesia, and so far no to pandas. problem is her sisters pandas doc is the one that found the infections (thank goodness, everyone else said "she will grow out of it"), we did not expect him to glance at dd6 and be concerned, but he did and was really concerned. it was very on the spot, unplanned. so now insurance has denied and told me to see a certain infectious disease dr. L at childrens.

    personally with my older one i never had luck at childrens, so i am asking that if anyone knows who i am talking about, or has anything to share, please let me know. I want dd6 to stay with the pandas doc, but i dont know, if anyone says "oh that doc at childrens is really good" them maybe i will make the app.

     

    p.m. me if you dont want to post.

     

    i will also post in pandas forum too

     

    thanks

    dan

  11. We use someone I found on the IOCDF website who is really excellent, ERP trained, and she takes HPHC. But I can't remember where you live. She's in Wenham -- that may be too far for you. If you want her name PM me. Otherwise you may want to check out the therapist finder on the IOCDF site. I suggest you find someone who is ERP trained.

     

    I am not sure how far wehnam is from me, but i think it is a bit far. I will check. thanks

  12. a person i know stopped me this morning, distraught, telling me she is taking care of her ex. he had been going downhill, then hit bottom. one leg paralyzed, tingling in fingers, lesions on brain and spine, no memory, can not work or function much. when he was in hosp. with abx, it made his so much worse they were scared. i asked if he was tested for lyme, she said it was neg. i mentioned that i have lyme, and my kids,and we tested neg. lots of times; and that lyme can mimic m.s. and if she can watch "under our skin", there is a spot with a woman in a similar position but found lyme. she was so distaught and going a mile a minute, also wanting advise for disability, i dont know what she actually heard/ or maybe did not want to hear. i was going to send her a link to (i think it was)a lymenet page with lots of articles on this situation. any suggestions on what else to send? i dont want to come across as a "know it all" but this man is very very sick and it really strikes me as lyme. oh, by the way, i think she said she is a physician, so i dont know her stance on lyme, it may be touchy.

     

    thanks

     

    dan

  13. I am thankfull too, that I found this board 3 years ago. It gave me somewhere to go (as mentioned) in the middle of the night when the panic attacks were happening. You have given me names of doctors who have helped. Thankful for a place to talk with no shame or embarrassment. But most of all the re-assurance that i am not alone, and neither is my daughter. I will sit with the family I love tomorrow, but will also think of you guys, and how you all understand what my family is going thru, because you are going thru it too.

     

    happpy thanksgiving

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