melanie Posted January 15, 2010 Report Share Posted January 15, 2010 Danny had a great day today Do the kids usually do well so soon? Very little talking to himself very little Very good mood litttle tics He didnt go to school but he did go to work and did his school work without any problems at all he doesnt want to go to school tomorrow he thinks he will "flip out" so I think he will go to work again. Melanie Link to comment Share on other sites More sharing options...
dut Posted January 15, 2010 Report Share Posted January 15, 2010 Yeh, we noticed an improvement within the 1st day for our dd... glad it's helping him... Link to comment Share on other sites More sharing options...
melanie Posted January 15, 2010 Author Report Share Posted January 15, 2010 Yeh, we noticed an improvement within the 1st day for our dd... glad it's helping him... How long did the good stuff last? Link to comment Share on other sites More sharing options...
dee45 Posted January 15, 2010 Report Share Posted January 15, 2010 Hey Malanie, great news. i hope Danny continues to do well. Have a good night. Deanna Link to comment Share on other sites More sharing options...
Megs_Mom Posted January 15, 2010 Report Share Posted January 15, 2010 We had results one day 1, improving every day. She only had 5 days, and OCD came right back on day 6. How many days are you doing? Some here do report good results with longer use. It is very diagnostic that he is good already - but I'm sure you know that! Keep us posted - hope it keeps on going -you both deserve a break. Have you tried Azithromyacin? Our immunologist & neurologist feel that this is anti-inflamatory for our daughter. Link to comment Share on other sites More sharing options...
dut Posted January 15, 2010 Report Share Posted January 15, 2010 Hello Our dd6 (65lbs) did 60mg per day for 5 days. We were in the first throes of an epsiode.. not awful but had marked OCD with hyperness/more difficult to discipline/more labile. On a scale of 1-10 (10 in our house was high-moderate OCD, some ticcing, lots and lots of behavioural stuff, sensory stuff, sleep disturbance, defiance and on and on) she was only at a 2 or 3 before the steroid but ramping up fast (over 24 hours). By the end of the 1st day on steroids we were at a 1 or less. By the day after we finished the 5 day burst she was symptom free. 6 weeks later we are still symptom free almost. At 4 weeks 1 worry per night at bedtime crept in and I have noticed she is slightly more likely to cry over stuff. But so not noticeable to anyone else. Dr T also said that if she were to ramp up again, we could repeat the burst... Hope it lasts for you..... Link to comment Share on other sites More sharing options...
melanie Posted January 15, 2010 Author Report Share Posted January 15, 2010 Hello Our dd6 (65lbs) did 60mg per day for 5 days. We were in the first throes of an epsiode.. not awful but had marked OCD with hyperness/more difficult to discipline/more labile. On a scale of 1-10 (10 in our house was high-moderate OCD, some ticcing, lots and lots of behavioural stuff, sensory stuff, sleep disturbance, defiance and on and on) she was only at a 2 or 3 before the steroid but ramping up fast (over 24 hours). By the end of the 1st day on steroids we were at a 1 or less. By the day after we finished the 5 day burst she was symptom free. 6 weeks later we are still symptom free almost. At 4 weeks 1 worry per night at bedtime crept in and I have noticed she is slightly more likely to cry over stuff. But so not noticeable to anyone else. Dr T also said that if she were to ramp up again, we could repeat the burst... Hope it lasts for you..... Ill get a better feel at the end of the day,He did go to work again instead of school.Hes 15 so he likes to work.My husband has a buisness so thats been a life saver.I did notice last night tons of focushe laughed and had a smile on his face .He was calm didnt eat as much as normal ,thats ok maybe .I hope this continues.I see Dr T on monday weve been seeing him fo r while.I hope this works untill we do the IVIG again .I know that the steroids are a great diagnostic tool to see if the IV will work,hes already done the IV so we know it will work>What schedule did you use how much did your child weigh? Melanie Link to comment Share on other sites More sharing options...
dut Posted January 15, 2010 Report Share Posted January 15, 2010 Our dd is 65lbs and we did 30mg in the am and 30 mg in the pm for 5 days, no taper.... Link to comment Share on other sites More sharing options...
T_Mom Posted January 15, 2010 Report Share Posted January 15, 2010 Our dd is 65lbs and we did 30mg in the am and 30 mg in the pm for 5 days, no taper.... Interesting, that seems much higher than what is being done by Dr. K or Dr L for steroid dosing. I had the impression that what Dr K was using was considered already "high" and it was about half of what you are using, (as I remember.)?? Is that 60 mg of Prednisone ? Link to comment Share on other sites More sharing options...
memom Posted January 15, 2010 Report Share Posted January 15, 2010 Melanie, I think my dd17 started her steroids the same day your son did. She also had a great day on day one. She told me she had no repeating, no thoughts, first time since her last steroid treatment in October. She feels so much better on the steroids, I so desperately want someone to let us do IVIG. Are you on the 5 day or one month path? Ellie Link to comment Share on other sites More sharing options...
melanie Posted January 15, 2010 Author Report Share Posted January 15, 2010 Melanie, I think my dd17 started her steroids the same day your son did. She also had a great day on day one. She told me she had no repeating, no thoughts, first time since her last steroid treatment in October. She feels so much better on the steroids, I so desperately want someone to let us do IVIG. Are you on the 5 day or one month path? Ellie Hi Ellie Im not sure what Im doing Im seeing DrT monday and Ill stay on 2- mg 2x a day untill I see him I guess..That will be 5 1/2 days .Danny is 15 so our kids are in the same age area.He did the IV in sept and were waiting to do another It was great It worked like nothing else .Where do you live?Have you seen any of the mds talked about on this forum?How much steroids is your ds on? Isshe on antibiotics? Melanie Link to comment Share on other sites More sharing options...
melanie Posted January 15, 2010 Author Report Share Posted January 15, 2010 Our dd is 65lbs and we did 30mg in the am and 30 mg in the pm for 5 days, no taper.... Interesting, that seems much higher than what is being done by Dr. K or Dr L for steroid dosing. I had the impression that what Dr K was using was considered already "high" and it was about half of what you are using, (as I remember.)?? Is that 60 mg of Prednisone ? \ What is dr l and dr ks dosage? Link to comment Share on other sites More sharing options...
GatsMom Posted January 16, 2010 Report Share Posted January 16, 2010 Danny had a great day today Do the kids usually do well so soon? Very little talking to himself very little Very good mood litttle tics He didnt go to school but he did go to work and did his school work without any problems at all he doesnt want to go to school tomorrow he thinks he will "flip out" so I think he will go to work again. Melanie Melanie and Ellie, May I ask the dose of steroids you're using so successfully for your kids. I have an appt with a new doc (here we go again) on 2/3 and I'm trying to have all available ducks in a row prior. Printing off Dr. T's latest post was a huge help. Many thanks, Gayle Link to comment Share on other sites More sharing options...
melanie Posted January 16, 2010 Author Report Share Posted January 16, 2010 Danny had a great day today Do the kids usually do well so soon? Very little talking to himself very little Very good mood litttle tics He didnt go to school but he did go to work and did his school work without any problems at all he doesnt want to go to school tomorrow he thinks he will "flip out" so I think he will go to work again. Melanie Melanie and Ellie, May I ask the dose of steroids you're using so successfully for your kids. I have an appt with a new doc (here we go again) on 2/3 and I'm trying to have all available ducks in a row prior. Printing off Dr. T's latest post was a huge help. Many thanks, Gayle hI Dans on 20 mg 2x a day this is the end of day 3 and compared to monday its like a new kid .Im not sure if its a good enough dosage I think its probably low Dr T knows im very nervous about this but hes doing very well.We just got back from the movies He really was great Its nice to see him happy.I hope this will last until the iV can get set up. Melanie Link to comment Share on other sites More sharing options...
dut Posted January 16, 2010 Report Share Posted January 16, 2010 T.Mom.. yeh it seemed high to me but when I looked at some of the dosing used for the month long bursts it was about the same but concentrated into 5 days. Also my dd is only 6 but 95th percentile for height and weight (65lbs). Our ds2 who weighs 32lbs ish, got 30 mg per day for 5 days. I am just so happy with the result and no negative side effects except some bad temper that I think we will stick with that dose for future bursts should we need them... Link to comment Share on other sites More sharing options...
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