SpenceOhana Posted March 16, 2013 Report Share Posted March 16, 2013 My topic title came from a comment left on one of my previous threads. So DD9 has been on two rounds of zith (5 days on 5 days off). After the first round, 5 days out her symptoms returned. Tomorrow we are 5 days out from second round and we are noticing her symptoms returning again . Hyper active talking, fear of being truthful, crying a few times (once over wanting to read, another over worrying about God being upset with her), germ/contamination phobia, incessant praying...and dilated pupils again. We noticed dilated pupils right before we started each round of zith. So I am assuming this is another flare? Why do the pupils dilate, what causes that? Good thing is psychiatrist called to check in today. She said she understands why our ped is concerned about prescribing longer term antibiotics....but DD9 obviously needs it. With each round her symptoms would significantly subside by day 2-3. So can the psychiatrist herself prescribe antibiotics? Or does that have to come in from our ped? Also think I will request more bloodwork (strep negative bloodwork normal last time). As I was typing this DD9 got out of bed emotionally upset saying she can't sleep because for the last hour she has felt the need to keep praying over and over again. Link to comment Share on other sites More sharing options...
SpenceOhana Posted March 16, 2013 Author Report Share Posted March 16, 2013 Oh and I forgot to say psychiatrist was pleased to hear her symptoms subsided with antibiotics. She was going to call 3 other peds and another psychiatrist who treat PANDAS and talk with them about longer courses of antibiotics. So I am thankful she is willing to research into this. She said she is treating one other patient with PANS/PANDAS but he isn't responding well to antibiotics. Link to comment Share on other sites More sharing options...
Broo100 Posted March 16, 2013 Report Share Posted March 16, 2013 Have you thought that the improvement with antibiotics could be due to their anti inflammatory properties? Why don't you play a bit with anti inflammatories instead? Link to comment Share on other sites More sharing options...
Ebersolk Posted March 16, 2013 Report Share Posted March 16, 2013 Can you get an appointment with a Pandas doctor? I do think your daughter may need longer antibiotics and she may need different types. She could have PANS and not have it only be treated by strep but by viruses or lyme etc. Link to comment Share on other sites More sharing options...
SpenceOhana Posted March 16, 2013 Author Report Share Posted March 16, 2013 Scheduled with a PANDAS neurologist in May. :/ Yes for now her psychiatrist suspects PANS, since strep was negative. DD9 had a respitory/sinus infection before this all started. Psychiatrist is waiting to hear back from other peds and psych who treat PANDAS patients, she called them on Friday but she has not heard back yet. Spoke with her this morning, she said for now give her ibuprofen in the morning and evening. She doesn't want to push her ped for another round of antibiotics and have her develop a superbug. Hoping the ibuprofen helps with any systematic inflamation. She also wants DD9 to come in for a counseling session, teaching us more cognitive and behavioral techniques. She said sometimes cpt psychotherapy can help remit symptoms. Did any of you do this? Link to comment Share on other sites More sharing options...
Broo100 Posted March 16, 2013 Report Share Posted March 16, 2013 With my ds, I treated the inflammation (after treating him for strep and mycoplasma). It wasn't until the inflammation had been dealt with that everything went back to normal. Of course, the other shoe could drop any second but he has been now 3 months antibiotic free Link to comment Share on other sites More sharing options...
SpenceOhana Posted March 16, 2013 Author Report Share Posted March 16, 2013 With my ds, I treated the inflammation (after treating him for strep and mycoplasma). It wasn't until the inflammation had been dealt with that everything went back to normal. Of course, the other shoe could drop any second but he has been now 3 months antibiotic free And to treat his inflammation, did you just use ibuprofen? For how long? Link to comment Share on other sites More sharing options...
Broo100 Posted March 16, 2013 Report Share Posted March 16, 2013 We have a family if ulcers in my family so I used motrin sparingly at the beginning. When he was in them the tics stopped so I felt I was on the right track. He has never displayed much of OCD except being very fussy about his drinking glasses because they could "be contaminated". Then I tried curcumim without much success. Then I discovered Anatabloc an that worked amazingly. I am not sure why more people in this board are not familiar with him. dr T knows about it and warned me about possible MAO properties and to avoid certain vegetables and cheeses but we have not had absolutely any problems. Link to comment Share on other sites More sharing options...
pr40 Posted March 16, 2013 Report Share Posted March 16, 2013 for inflammation we use ibuprofen, ds had a steroid taper as well. liver needs to be monitored for a longer term use. cbt seems to be very helpful for most kids. we find it not working DURING a flareup. you are lucky that you found a psychiatrist willing to treat with abx. Link to comment Share on other sites More sharing options...
SpenceOhana Posted March 16, 2013 Author Report Share Posted March 16, 2013 We have a family if ulcers in my family so I used motrin sparingly at the beginning. When he was in them the tics stopped so I felt I was on the right track. He has never displayed much of OCD except being very fussy about his drinking glasses because they could "be contaminated". Then I tried curcumim without much success. Then I discovered Anatabloc an that worked amazingly. I am not sure why more people in this board are not familiar with him. dr T knows about it and warned me about possible MAO properties and to avoid certain vegetables and cheeses but we have not had absolutely any problems. That Anatabloc sounds interesting. I see it's sold at GNC. How did you know how much dosage to give? Link to comment Share on other sites More sharing options...
Broo100 Posted March 16, 2013 Report Share Posted March 16, 2013 My son weighs 84 pounds so I gave him half of the adult recommended dose. 1 tab 3 times a day at the height of his tics. When the tics came down I lowered it to 2 then 1 and now he only takes them maybe once a week if he is having some tics. He has not taken any this week. I have posted about this before and I am very surprised that not more people know about it. Definitely ask your doctors. It is new and it is expwnsive but it works and is OTC. Link to comment Share on other sites More sharing options...
Pandasphilly Posted March 16, 2013 Report Share Posted March 16, 2013 My son weighs 84 pounds so I gave him half of the adult recommended dose. 1 tab 3 times a day at the height of his tics. When the tics came down I lowered it to 2 then 1 and now he only takes them maybe once a week if he is having some tics. He has not taken any this week. I have posted about this before and I am very surprised that not more people know about it. Definitely ask your doctors. It is new and it is expwnsive but it works and is OTC. Broo100 Was your child on any meds when you tried anatabloc? For example augmentin, any other antibiotics? Any regularly dosed supplements? Link to comment Share on other sites More sharing options...
Broo100 Posted March 16, 2013 Report Share Posted March 16, 2013 No. I had finished the amixicillian and biaxin. When I tapered him off the tics came back even if the infection had cleared. I assumed that the problem was a lingering brain inflammation. Tried motrin and it worked very well so I started investigating stomach "safe" anti inflammatories and this one was a magic pill for my son. I would love to hear from other people that are using it. It is new and makes me nervous but it has been amazing for him. I cannot believe I am the only one. Please ask Dr T about it Link to comment Share on other sites More sharing options...
SpenceOhana Posted March 16, 2013 Author Report Share Posted March 16, 2013 for inflammation we use ibuprofen, ds had a steroid taper as well. liver needs to be monitored for a longer term use. cbt seems to be very helpful for most kids. we find it not working DURING a flareup. you are lucky that you found a psychiatrist willing to treat with abx. I'm sorry I'm still new here and not hip with abreviations yet, what does cbt stand for? Link to comment Share on other sites More sharing options...
SpenceOhana Posted March 16, 2013 Author Report Share Posted March 16, 2013 No. I had finished the amixicillian and biaxin. When I tapered him off the tics came back even if the infection had cleared. I assumed that the problem was a lingering brain inflammation. Tried motrin and it worked very well so I started investigating stomach "safe" anti inflammatories and this one was a magic pill for my son. I would love to hear from other people that are using it. It is new and makes me nervous but it has been amazing for him. I cannot believe I am the only one. Please ask Dr T about it Did you buy it through GNC? Or can you get it elsewhere? Link to comment Share on other sites More sharing options...
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