Minnesota Mom Posted July 11, 2011 Report Posted July 11, 2011 I am new to the PANDAS world and let me tell you it has been a whirl wind as I'm sure most of you can relate to. We are in the PANDAS research study through the NIMH studying the long term effects of IVIG in PANDAS. We had our first treatment, not sure if it was IVIG or placebo. I honestly can't see any change yet. We are post 1-1/2 weeks since the treatment date. Any input on how long we should expect an episode of PANDAS to last. Our son's inital onset was May 27, 2011 and it has been very intense with some good days inbetween. Also, any feedback on IVIG and how soon you started to notice a change.
michiganpandas Posted July 11, 2011 Report Posted July 11, 2011 I am new to the PANDAS world and let me tell you it has been a whirl wind as I'm sure most of you can relate to. We are in the PANDAS research study through the NIMH studying the long term effects of IVIG in PANDAS. We had our first treatment, not sure if it was IVIG or placebo. I honestly can't see any change yet. We are post 1-1/2 weeks since the treatment date. Any input on how long we should expect an episode of PANDAS to last. Our son's inital onset was May 27, 2011 and it has been very intense with some good days inbetween. Also, any feedback on IVIG and how soon you started to notice a change.
JAG10 Posted July 11, 2011 Report Posted July 11, 2011 Hi- welcome & sorry! Were there any side effects from ivig? Any headache or nausea? Any change in activity/hyper level? My dd was 10 at the time of her first ivig and sick for a very long time prior. Some changes were noticed right away, other symptoms would come and go for a period of 10-12 weeks. You might get a better idea from someone with a child of similar age and new onset. Jill
Minnesota Mom Posted July 11, 2011 Author Report Posted July 11, 2011 My son is 10y, he did have a headache and some nausea for a few days after the treatment. What has been your experience with the waxing and waning of the OCD symptoms. We are going on 8 weeks. My son is taking Prozac and was just started on Penicillin since the treatment a week and a half ago.
momaine Posted July 11, 2011 Report Posted July 11, 2011 My son is 10y, he did have a headache and some nausea for a few days after the treatment. What has been your experience with the waxing and waning of the OCD symptoms. We are going on 8 weeks. My son is taking Prozac and was just started on Penicillin since the treatment a week and a half ago. Hi, My dd is a bit of a complicated case with PANDAS and Lyme/Bartonella infections. But when she had her first ivig (we didn't know about the lyme/bart then), she showed improvement overnight with mood and attention level but it took a couple of weeks to see an improvement in OCD. Then after two weeks and moving forward, she continued to improve in that 8 week period. (gets complicated after that but that should be enough infor for now) Best of luck to you. My dd was never on Penecillian and she did not do well when she went off Zithromax and Augmentin. Now we know that was probably due to lyme. Our immunologist's nurse recently said something that made me thing a large percentage of her pandas kids are showing up positive for lyme.
SSS Posted July 11, 2011 Report Posted July 11, 2011 I wanted to add: I think the headache and nausea are a huge sign you got the real deal instead of placebo! Unless they give the placebo kids something to give them a headache and nausea too--that would be nasty tricky. Hang in there--it can take awhile.
Minnesota Mom Posted July 11, 2011 Author Report Posted July 11, 2011 This helps a ton. Every kid no matter if they get placebo or IVIG get tylenol and benadryl during the treatment to help keep the side effects at a minimum. Did you see the symptoms change every few days such as; motoric hyperactivity then evil thoughts then fear of contamination? This is how I see things with my son. One symptom dies down and a new one explodes. I wanted to add: I think the headache and nausea are a huge sign you got the real deal instead of placebo! Unless they give the placebo kids something to give them a headache and nausea too--that would be nasty tricky. Hang in there--it can take awhile.
JAG10 Posted July 11, 2011 Report Posted July 11, 2011 My son is 10y, he did have a headache and some nausea for a few days after the treatment. What has been your experience with the waxing and waning of the OCD symptoms. We are going on 8 weeks. My son is taking Prozac and was just started on Penicillin since the treatment a week and a half ago. There is such a diverse buffet of symptoms...it really looks so different child to child. For my dd, the overt OCD/tic symptoms were the first to disappear and barely resurfaced with re-exposure. Her more significant symptoms were in the cognitive realm; attending, math regression, dysgraphia, behavioral regression, word retrieval. You may have heard the term "flipping back the pages?" So for each child they may have a symptom set that is their main nemesis (for some it is primarily motoric symptoms, some cognitive, ect) and this may have been one of the first symptoms to surface, but as time marches on, other symptoms pile-on the child. You may see these symptoms resurface and then disappear in reverse order as is you were flipping the pages of your child's story from present back in time. Prior to ivig, my dd was on a cocktail of 3 different psych meds in many different combinations, none of which provided lasting or adequate symptom relief. SInce that first ivig, she has been off all psych meds. She obtained 75% symptom relief with one ivig. We have since pursued multiple ivigs in hopes to get her the rest of the way there and shut down her auto-immune faucet. She is now estimated 90% with some mild lingering memory and anxiety that still ebs and flows toward remission-we are looking for that to stop and for her to be the girl God intended for her to be; in control of her mind and her destiny. The headache and nausea are a typical side effect of ivig. Jill
JAG10 Posted July 11, 2011 Report Posted July 11, 2011 This helps a ton. Every kid no matter if they get placebo or IVIG get tylenol and benadryl during the treatment to help keep the side effects at a minimum. Did you see the symptoms change every few days such as; motoric hyperactivity then evil thoughts then fear of contamination? This is how I see things with my son. One symptom dies down and a new one explodes. I absolutely saw this, only my dd was pretty bad so I don't know if explosion is the word I would choose. I saw it more as a pendulum swinging from one symptom set to another, losing energy with each swing. But some stuff, off the bat, just vanished-TG!!!! I agree, my hunch is you got the real magic juice
nicklemama Posted July 11, 2011 Report Posted July 11, 2011 My DS 7.5 yrs old is 9 wks post IVIG. We see a waxing and waning, although this far out, the tics are gone and he's got some minor ocd and anxiety (bad thoughts, ect..) left. He's beginning to see that the thoughts are PANDAS thoughts. He's doing really well, but he got worse before he got better. My DS had IVIG 1y7mo after PANDAS hit him. It took us a yr to get him diagnosed properly. I'd say you got the real deal. Headache and nausea are very common post IVIG. My son also received benadryl during IVIG. No motrin though. It was started when his head started hurting. He had headache and threw up several times about 24hr after the 2nd day of IVIG. Headache lasted a few days. Vomiting only the one day.
melanie Posted July 11, 2011 Report Posted July 11, 2011 I am new to the PANDAS world and let me tell you it has been a whirl wind as I'm sure most of you can relate to. We are in the PANDAS research study through the NIMH studying the long term effects of IVIG in PANDAS. We had our first treatment, not sure if it was IVIG or placebo. I honestly can't see any change yet. We are post 1-1/2 weeks since the treatment date. Any input on how long we should expect an episode of PANDAS to last. Our son's inital onset was May 27, 2011 and it has been very intense with some good days inbetween. Also, any feedback on IVIG and how soon you started to notice a change. HI We have done infusions for about 1 1/2 years with 60 grams IVIG every 21 days.We have gpne from horrible horrible misrable to very good .My son has other issues too but the PANDAS symptoms were the worst. Some times after the infusions things are great sometimes not so great its the long run.I guess there are some here that have been cured with 1 or 2 infussions but we arent them.weve had probably 30 so far give or take.I stopped counting.I dont want to stop them they are helping him soooo much. Let us know how your child is and thanks for being a part of this study. Melanie
Iowadawn Posted July 12, 2011 Report Posted July 12, 2011 Thanks for being part of the study. The headache & nausea--for our boy it was like the flu-flu--pretty common. When we were treating the PANDAS with IVIG it was like rapid cycling of symptoms--you name it. Two to 3 weeks of bleck and then positive trending. BUT, his wasn't sudden onset and then we went on to discover tick-borne infections. Like someone else said, each person is unique. I think you'll know if you got the real deal--if you didn't, you will be allowed to get it at 6 weeks? I forget. They are allowing psych meds during the study? Just curious. Best wishes. Dawn
T_Mom Posted July 12, 2011 Report Posted July 12, 2011 Hi Minnesota Mom--Thank you for being in the NIH study, I hope your son gets better (much better) soon! We are 8 weeks post IVIG and we basically saw "glimmers" of our daughter again within the first 48 hours after IVIG. We have also seen "flipping back of the pages", with some reappearing symptoms coming and going. (tiredness, swimming in a chlorine pool,both have affected this we think) Did you say that your child is starting Prozac now? Is that allowed in the study? Is it part of the study? I would have thought that they would want to isolate the effects of IVIG alone for awhile? Interesting--
cynditk Posted July 12, 2011 Report Posted July 12, 2011 My son is 10y, he did have a headache and some nausea for a few days after the treatment. What has been your experience with the waxing and waning of the OCD symptoms. We are going on 8 weeks. My son is taking Prozac and was just started on Penicillin since the treatment a week and a half ago. Hi, My dd is a bit of a complicated case with PANDAS and Lyme/Bartonella infections. But when she had her first ivig (we didn't know about the lyme/bart then), she showed improvement overnight with mood and attention level but it took a couple of weeks to see an improvement in OCD. Then after two weeks and moving forward, she continued to improve in that 8 week period. (gets complicated after that but that should be enough infor for now) Best of luck to you. My dd was never on Penecillian and she did not do well when she went off Zithromax and Augmentin. Now we know that was probably due to lyme. Our immunologist's nurse recently said something that made me thing a large percentage of her pandas kids are showing up positive for lyme. Hi, Who is your immunologist and where are they? What are you doing to treat Lyme and is your daughter stable yet?
cynditk Posted July 12, 2011 Report Posted July 12, 2011 Momaine: Who is your immunologist and where is he/she? What are you doing to treat the Lyme? Is your daughter stable/recovering yet?
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