texascatholic Posted September 1, 2010 Report Share Posted September 1, 2010 I actually think I see some little differences after 2 large doses of zithromax. She actually started the night off in her own bed last night instead of demanding to sleep in ours. However, today there were some OCD behaviors, and few meltdowns (less than before). Wondering when most people see a big difference. Also, does anyone have a good probiotic recommendation??? Thanks in Advance... Holly Link to comment Share on other sites More sharing options...
Megs_Mom Posted September 2, 2010 Report Share Posted September 2, 2010 We saw a difference in about 3-4 days. We were doing ERP therapy, and suddenly the work was so much easier. It took care of a lot, but not all - but was a big difference, and got even better over time. We use "Attune" Chocolate bars - the only thing we have found that she'll actulaly use - and we can stick in lunch box with an ice pack & still trust her compliance. She LOVES the Chocolate Mint ones. They are a little pricey . I am not sure if they are really better or worse than other products, but we have to go with what our dd will tolerate taste wise. Glad you are already seeing a difference! Don't be shocked by some bad moments - I think their brains get trained to have OCD - and some of it is habit based after a while. So you may see a flair up, but we found if we stayed calm, that they are short lived, and not repetitive. Good luck! Link to comment Share on other sites More sharing options...
texascatholic Posted September 2, 2010 Author Report Share Posted September 2, 2010 Thanks for your encouraging reply! Tonight was a tough one. Mega meltdown after I accidentally spilled a little water on her duvet cover. Oh well, day 4 is tomorrow. God Bless! Holly Link to comment Share on other sites More sharing options...
kimballot Posted September 2, 2010 Report Share Posted September 2, 2010 I actually think I see some little differences after 2 large doses of zithromax. She actually started the night off in her own bed last night instead of demanding to sleep in ours. However, today there were some OCD behaviors, and few meltdowns (less than before). Wondering when most people see a big difference. Also, does anyone have a good probiotic recommendation??? Thanks in Advance... Holly Holly - for us it took us a few days to start seeing results on zith. Can you give ibuprofen to help decrease inflammation while you are waiting? Keep us posted- I hope she does well! Link to comment Share on other sites More sharing options...
airial95 Posted September 2, 2010 Report Share Posted September 2, 2010 It took us about a week or so to see results - and it was mostly with temper. The violence and the rage were the first to go. Within about 2 weeks, the meltdowns were still there, but they were managable, no longer debilitating. We still dealt with OCD - but it continued to lessen over time. I've found that the OCD is our hardest sypmtom to beat - it's like his brain just "got used" to doing and having things a certain way. But even so - there was a remarkable difference in the anxiety levels and meltdowns when we didn't give in to the OCD. Hang in there - we've been on azith for just over 8 months now (2 1/2 at full dose - now at half) and we continue to see improvment every day. Link to comment Share on other sites More sharing options...
Fixit Posted September 2, 2010 Report Share Posted September 2, 2010 It took us about a week or so to see results - and it was mostly with temper. The violence and the rage were the first to go. Within about 2 weeks, the meltdowns were still there, but they were managable, no longer debilitating. We still dealt with OCD - but it continued to lessen over time. I've found that the OCD is our hardest sypmtom to beat - it's like his brain just "got used" to doing and having things a certain way. But even so - there was a remarkable difference in the anxiety levels and meltdowns when we didn't give in to the OCD. Hang in there - we've been on azith for just over 8 months now (2 1/2 at full dose - now at half) and we continue to see improvment every day. Really?!?! that is great.... i don't remember ...did you do ivig or pex Link to comment Share on other sites More sharing options...
airial95 Posted September 3, 2010 Report Share Posted September 3, 2010 Nope - no IVIG or PEX. And the only antibiotic we've done continually has been Azith. It's been a long - slow recovery, but we keep going in the right direction. If he's exposed to strep, we usually have a spike in behaviors for about 2-3 days, but then he goes right back to where he left off...so we've been lucky - but he is quite the canary. He has gotten strep 2x now on the azith, both times he went back to square one - but after each infection, his "rebound" time to get back to where he was pre-infection has been shorter. He just finished 10 days of Omnicef last week for this last infection - and he's already back to about 70-75% (I'd say he was at about 85% pre-infection and still improving) I think the behavior therapy we've been doing has really been helping too. Link to comment Share on other sites More sharing options...
texascatholic Posted September 3, 2010 Author Report Share Posted September 3, 2010 To Arial95, Were you doing 500mg per day for 2.5 months and then 250 per day? I searched the forum for posts about Zith and PANDAS. Folks back then were saying that Zith was considered liver-damaging and that they were told to do 1 week on and 1 week off, or something like that. I wonder if ideas about Zithromax have changed? Thanks for the replies, everyone Holly Link to comment Share on other sites More sharing options...
airial95 Posted September 3, 2010 Report Share Posted September 3, 2010 Holly, my son had just turned 2, and was barely 25 lbs when we started on zith - so his full dose was only 100mg based on that. And now he does 50mg per day. It's always been hard for me to compare dosing info on here since my guy is so young and small. I asked our dr about side effects/long term effects of the zithromax, and what we should be looking out for. He did mention the liver damage potential, but he didn't think that it was a very common effect or overly concerned about it. I know he's willing to keep him on abx as long as we need to, but does want us to go off as soon as possible. We've already tried taking him off 2x with disasterous results. Dr. Murphy has now confirmed for our pediatrician to keep him on long term - and while she prefers omnicef for the abx, she advised us to stick with the azith as long as it's working, and if our improvement plataus - then make the switch. Link to comment Share on other sites More sharing options...
mom love Posted September 3, 2010 Report Share Posted September 3, 2010 Ariel 95, do you mind sharing the age and weight of your son and what the full dose was and what the 1/2 dose is now? Is the half dose considered a prophylactic dose? And is Dr. Murphy managing the zithro or your ped? How did you find out that zithro worked best for him? thanks again Link to comment Share on other sites More sharing options...
mom love Posted September 3, 2010 Report Share Posted September 3, 2010 editing because I just saw your reply to Holly about dose. thanks Link to comment Share on other sites More sharing options...
tygertoo Posted September 4, 2010 Report Share Posted September 4, 2010 my DS has been on both Zith and Augmentin and now currently on prophelyctic dose of Zith (400mg 2x weekly). Yes both abx have helped with my DS symptoms (no more bedwetting, very little anxiety or meltdowns, much more social and adventurous (less fears) and fewer tics). The OCD is the hardest because it has now become like habit - the way his brain is wired...so we do CBT therapy with him which definately helps. Link to comment Share on other sites More sharing options...
tpotter Posted September 4, 2010 Report Share Posted September 4, 2010 We saw it overnight (MAJOR calm down from rages). My DS also said he definitely felt different. Link to comment Share on other sites More sharing options...
tygertoo Posted September 4, 2010 Report Share Posted September 4, 2010 also forgot about the probiotic - Florabears http://www.amazon.com/s/?ie=UTF8&keywords=florabear&tag=googhydr-20&index=hpc&hvadid=3532817867&ref=pd_sl_931akbautj_b they also sell them at whole foods Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now