caring mom Posted August 5, 2010 Report Share Posted August 5, 2010 Hi Everyone, Well, I just knew it would happen. The minute I open my mouth about how well my daughter is doing she turns on me. To recap, she was diagnosed with PANDAS 1 month ago and Tourettes 1 1/2 years ago. She is currently on Azith 2x/day, Fluconazole 1x/day and we just ended a 2 week run on Flagyl 7 days ago. I have been writing on the forum about what a miracle Flagyl was for her. Her vocal tics went from every 5-10 seconds all day long to 10-15 all day. I have been terrified that since we stopped the Flagyl she would go back to how she was before. She did fine the first 5 days off the Flagyl. I actually thought she may have declined a little when she got off it but it was so slight that it really wasn't worth a thought (maybe 18 tics a day instead of 15). Yesterday I definitely noticed she was doing worse but again it wasn't anything major so I was worried but not hysterical. Well, today she was definitely bad. I knew it the minute she woke up. I called the doctor and got another prescription for Flagyl (another 2 weeks) and am starting her on it tonight. I am terrified that she is not going to get better. I am trying to think of what else could be responsible for her decline. I started her on s. boulardii after she finished the Flagyl. She has had 6 days of it. Could it be a herx reaction? I think Phasmid wrote that her son also declined a week or so after stopping the Flagyl and had to go on it again and had success with it after that. I just want to breathe again and not dread getting up each morning because I don't know what will await me. This roller coaster ride that I have been on for 1 1/2 years is really getting to me - I want to get off the ride! I know that most of you have been through way worse than I have and I feel guilty for even admitting how I feel but I have no one else to talk to who understands. Thanks for listening. Any thoughts for me? Caring Mom Link to comment Share on other sites More sharing options...
Phasmid Posted August 5, 2010 Report Share Posted August 5, 2010 FYI, My son did not tolerate giving the super-engineered probiotics. Both Culturelle and Florastor (Sacharomyces boulardii) had horrible and immediate effect on him. Link to comment Share on other sites More sharing options...
caring mom Posted August 5, 2010 Author Report Share Posted August 5, 2010 Thanks Phasmid, I not going to give the s. boulardii to her anymore. Link to comment Share on other sites More sharing options...
momaine Posted August 5, 2010 Report Share Posted August 5, 2010 I don't have any advice to offer, but I do want to say I understand how you feel. I think we all sort of have post traumatic stress disorder....always waiting for the next bomb to drop. It's not a very fun way to live, for sure. I hope that some day this is all a distant memory. Angela Link to comment Share on other sites More sharing options...
lyme_mom Posted August 5, 2010 Report Share Posted August 5, 2010 Hi Everyone, Well, I just knew it would happen. The minute I open my mouth about how well my daughter is doing she turns on me. To recap, she was diagnosed with PANDAS 1 month ago and Tourettes 1 1/2 years ago. She is currently on Azith 2x/day, Fluconazole 1x/day and we just ended a 2 week run on Flagyl 7 days ago. I have been writing on the forum about what a miracle Flagyl was for her. Her vocal tics went from every 5-10 seconds all day long to 10-15 all day. I have been terrified that since we stopped the Flagyl she would go back to how she was before. She did fine the first 5 days off the Flagyl. I actually thought she may have declined a little when she got off it but it was so slight that it really wasn't worth a thought (maybe 18 tics a day instead of 15). Yesterday I definitely noticed she was doing worse but again it wasn't anything major so I was worried but not hysterical. Well, today she was definitely bad. I knew it the minute she woke up. I called the doctor and got another prescription for Flagyl (another 2 weeks) and am starting her on it tonight. I am terrified that she is not going to get better. I am trying to think of what else could be responsible for her decline. I started her on s. boulardii after she finished the Flagyl. She has had 6 days of it. Could it be a herx reaction? I think Phasmid wrote that her son also declined a week or so after stopping the Flagyl and had to go on it again and had success with it after that. I just want to breathe again and not dread getting up each morning because I don't know what will await me. This roller coaster ride that I have been on for 1 1/2 years is really getting to me - I want to get off the ride! I know that most of you have been through way worse than I have and I feel guilty for even admitting how I feel but I have no one else to talk to who understands. Thanks for listening. Any thoughts for me? Caring Mom Sounds like what happened to my cousin's daughter with Pandas. However she was taking flagyl for Lyme and she went downhill as soon as she went off it. Flagyl is a cyst buster that kills Lyme in the cyst like form. Bicillin shots helped her immensely too. Pm me if you want more info. Link to comment Share on other sites More sharing options...
lyme_mom Posted August 5, 2010 Report Share Posted August 5, 2010 Hi Everyone, Well, I just knew it would happen. The minute I open my mouth about how well my daughter is doing she turns on me. To recap, she was diagnosed with PANDAS 1 month ago and Tourettes 1 1/2 years ago. She is currently on Azith 2x/day, Fluconazole 1x/day and we just ended a 2 week run on Flagyl 7 days ago. I have been writing on the forum about what a miracle Flagyl was for her. Her vocal tics went from every 5-10 seconds all day long to 10-15 all day. I have been terrified that since we stopped the Flagyl she would go back to how she was before. She did fine the first 5 days off the Flagyl. I actually thought she may have declined a little when she got off it but it was so slight that it really wasn't worth a thought (maybe 18 tics a day instead of 15). Yesterday I definitely noticed she was doing worse but again it wasn't anything major so I was worried but not hysterical. Well, today she was definitely bad. I knew it the minute she woke up. I called the doctor and got another prescription for Flagyl (another 2 weeks) and am starting her on it tonight. I am terrified that she is not going to get better. I am trying to think of what else could be responsible for her decline. I started her on s. boulardii after she finished the Flagyl. She has had 6 days of it. Could it be a herx reaction? I think Phasmid wrote that her son also declined a week or so after stopping the Flagyl and had to go on it again and had success with it after that. I just want to breathe again and not dread getting up each morning because I don't know what will await me. This roller coaster ride that I have been on for 1 1/2 years is really getting to me - I want to get off the ride! I know that most of you have been through way worse than I have and I feel guilty for even admitting how I feel but I have no one else to talk to who understands. Thanks for listening. Any thoughts for me? Caring Mom Sounds like what happened to my cousin's daughter with Pandas. However she was taking flagyl for Lyme and she went downhill as soon as she went off it. Flagyl is a cyst buster that kills Lyme in the cyst like form. Bicillin shots helped her immensely too. Pm me if you want more info. Link to comment Share on other sites More sharing options...
trggirl Posted August 5, 2010 Report Share Posted August 5, 2010 If you don't mind me asking, what were the behaviors you saw that told you she was going backwards? Link to comment Share on other sites More sharing options...
faith Posted August 5, 2010 Report Share Posted August 5, 2010 (edited) oh mom, so sorry of this, ...but don't fret, because you know the flagyl was helping, and from what it seems like, is now that it is out of her system, she is getting symptoms again, the vocal, right? it is possible it is from the s. boulardi because that's what you added afterwards, so just stop that and see, but I am more inclined to feel it is a backslide from not having the flagyl. you recall I posted that one flagyl pill seemed to exacerbate my son's vocal to a peak, so I am too chicken to continue. he did back down somewhat, but this morning, even without the flagyl, he is seeming to have some more continuous vocals, I don't know what the heck to make of all this. (to remind, I hve had no testing, so was only doing this per hunch and with DAN docs guidance, they feel it is okay to go in and treat without proof)...... I know its difficult, but I think you may have to do some investigating as to why this abx seems to help and why. I don't know how long you can stay on this one. so far it was for clostridium, right? now I'm just wondering why that wouldn't be eradicated after a two week course. but if it is a stubborn thing, perhaps it multiplies pretty fast and you need something more, so see how it goes with another two weeks. it would be very interesting to see if it backs down again.....then you'll go from there. at least you have more flagyl...... oh, one more thing, are you still giving the flucanazole? or that was ended too? maybe the fluc alone is not good? maybe causing too much die off and the body can't handle the toxins? not sure, this is just speculation. good luck, faith Edited August 5, 2010 by faith Link to comment Share on other sites More sharing options...
bubblegum Posted August 5, 2010 Report Share Posted August 5, 2010 I know how frustrating it is,you have a good day and then you think wow the treatments/meds are working,thank you God,and then the next day back to more symptoms and screaming.I hope that you find what will work for your child!I was talking to Elizabeth last night and it is helpful to talk to someone who understands and "has been there"Give yourself a hug for being a Great MOM. Link to comment Share on other sites More sharing options...
melanie Posted August 5, 2010 Report Share Posted August 5, 2010 Danny is on flagyl and seems good calmer the past 2 days.He definitly cant take those specific probiotics!!They make him ,well ,not good!! Melanie Link to comment Share on other sites More sharing options...
caring mom Posted August 5, 2010 Author Report Share Posted August 5, 2010 (edited) Trg Girl - she started ticcing more. I also noticed she was a bit more emotional than normal for the 2 days before the ticcing really increased. Edited August 5, 2010 by caring mom Link to comment Share on other sites More sharing options...
caring mom Posted August 5, 2010 Author Report Share Posted August 5, 2010 Hi Faith, Yes, it is the vocals that are back. Not as bad as before we started the Flagyl the first time but definitely increased from the 2 weeks when she was on the Flagyl (she was at 90% before and now she's at about 65%). I did stop the s. boulardii but I too am inclined to think that it was backsliding from the Flagyl. It's just so frustrating because I feel like I'm just never going to get a handle on this. I had a miracle for 2 weeks and now the miracle was taken away from me. I started her back on the Flagyl last night - so far she's had 2 doses. I can't tell anything yet. I just don't believe that the 2 weeks she was on the Flagyl was a fluke. She is continuing on the Fluconazole (she's been on it for 3 weeks now)so I don't think it's die-off. I have a phone consultation on Monday with her DAN doctor to discuss all of this. Lyme Mom brought up the possibility of lyme but everything that I've heard about treating lyme (not that I've done extensive research on this by any means)talks about big herxing when you start treatment. We've had the opposite reaction. I guess at this point all I can do is wait and pray that she starts responding again. I'll let you know. I don't blame you for being chicken to continue on the Flagyl with your son. When things are bad you just can't fathom making anything worse. Where are you thinking of going from here? I wonder why he had such a bad response? Are you rethinking Lyme at all? Caring Mom Link to comment Share on other sites More sharing options...
caring mom Posted August 5, 2010 Author Report Share Posted August 5, 2010 Momaine and Gatito, Thanks for your kind words. I do feel traumatized by this whole experience and the worst part is that I don't know when or if things will ever change. It's so hard to live with this kind of unpredictability all the time. Especially when you are working soooo hard to make life better for your child and you seem to be getting nowhere. Your understanding means a lot to me! Caring Mom Link to comment Share on other sites More sharing options...
caring mom Posted August 6, 2010 Author Report Share Posted August 6, 2010 Hi Melanie, What is Danny on Flagyl for? I noticed you wrote he is doing another IVIG - I think today. Best of luck to both of you. I hope you see great results! Link to comment Share on other sites More sharing options...
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