Mary M

Please know you are in my thoughts...no one should ever have to experience what we experience with our children. May the medical profession be guided with wisdom and compassion.

I wish there were answers...hopefully the information you glean from the amazing contributors on this forum will help you to work through some of this. I have worried about the ramifications of this into adulthood. I just don't think there's much information about PANDAS into adulthood at this time and that makes connecting the dots particularly difficult for you. But this supportive forum is at least a step in the right direction.

My non-PANDAS daughter had a severe reaction post DPT and was hospitalized for observation overnight. No one in the medical community would ever state that her reaction was due to the vaccination but they could never rule it out either. We refused DPT from there and have never again allowed pertussis, whether acellular or not. Our PANDA has never had the pertussis vaccination...based on what I've read here, it sickens me to consider how it may have effected her. I can't imagine her PANDAS any worse.

Oh, thank you for sharing this. I've been trying to understand the science behind this.

I think the control issue is huge for her right now. She feels totally out of control of everything (the OCD is so all-encompassing right now). She actually said a few days ago "I just want to feel like myself again" so I think there's also some sorrow/depression, loss of self...it's hard to watch isn't it? Thankfully our upcoming visit to Dr K is less than 5 hours and we have relatives in Chicago who she adores so that is making the trip something to look forward to for dd.

DS complained a bunch at one point. I realized, after questioning him, that the taste and smell of the refill we got was different because we'd switched pharmacies and they used a different manufacturer. When we went back to the original for the next refill he was fine. could that be an issue? Different abx entirely so perhaps that's the problem as well. If the new abx isn't working as well, I'd definitely see if switching back to Augmentin helps. We started with Augmentin with some improvement but ended up needing to switch because he still got an infection. His dr. wanted to go with Omnicef as his second line treatment. That particular abx made EVERYTHING worse. I had never seen DS so full of rage and hopelessness and it really scared me. 24 hours on Biaxin produced a totally different child and made such a huge positive difference I wouldn't have believed it if I hadn't seen it. It wasn't that the Omnicef wasn't working, it was actually increasing the problems. It is so individual for each child. I wouldn't wait to finish the course after watching how much worse the wrong abx made things for us. The last few days have been terrible so we have taken everyone's advice and switched back to augmentin. Thankfully our pediatrician will do anything we ask for right now...and I keep telling her I'm getting my info from all of you, thank you!

Thank you for that advice, we got a script for aug today... but I will keep the rest of the ceph in the event we need it in the future. I don't think I would have thought of that right now as we are in such an exacerbation. This forum is so helpful to me.

We should be receiving our kit via fedex in the next day or two. Keep posting so that when our results come in I will have already learned how to understand it from all of you! Thanks in advance for helping to keep me educated and informed.

I am so grateful to both of you for sharing your story.

I can so relate to your sadness...my daughter's birthday was Wednesday...and it came and went with extreme exacerbation all day and night. We can be hopeful that at least our children may not remember what they've missed...only our mother hearts will carry that sorrow. I'm glad to hear that for some...it does get better...we can look forward to that.

DS complained a bunch at one point. I realized, after questioning him, that the taste and smell of the refill we got was different because we'd switched pharmacies and they used a different manufacturer. When we went back to the original for the next refill he was fine. could that be an issue? Different abx entirely so perhaps that's the problem as well.

The first 20 days was liquid augmentin. Then she was off abx for 4 days waiting for ped appt and then waiting for Rx to get the abx in. We will never have a gap again as I believe the gap in time really made a mess of things for us. The ped prescribed cephalexan for this 20 day round and asked dd is she'd like it in liquid or pill form and dd chose pills (4 per day-2 am, 2 pm). I do not think the ceph is working as well as the aug...she's so controlled by ocd right now.

Why is she refusing? Are they causing gas or stomach upset? Or is it some sort of "principal" thing, as in, she's old enough to make that kind of decision so she's doing it? How long has it been since she started refusal? If you give it a day or two, do you think she might come back around to realizing that she feels better taking them than not? This is a tough one! She has not had any side effects. She is angry and defiant and said " I am going to teach you a lesson mommy....because you interrupted me today."

My dd 12 has an appt with Dr K on May 26. Is on her second round of abx and is now refusing to take them. Does anyone have any suggestions to encourage her? Symptom exacerbation is huge...kind of at a loss here...DNAse titers are rising on abx and I read those are the antibodies that breech the BBB.

I can't tell you what your post means to me. Thank you so much for sharing. It is important to hear the parents' perspective but to hear yours is such a support to me (us). I wish you continued success and hope you will post again.

is really watching how much "screen" time he gets. We have discussed the screen time issue at our house as well. Research says you burn fewer calories watching TV than sleeping but the screen time seems to ramp my daughter up too...does anyone know the root cause of this TV/behavior issue?

I'm sorry...I know how those good little moments just make you feel so hopeful.

I appreciate everyone sharing their experiences...more than anything it helps to know others are experiencing similar circumstances.

here is a website that may help http://www.talkaboutsleep.com/circadian-rh...n-correctly.htm Thanks for the website. I read it all. Some much to learn.

At this point, we'd volunteer to participate in such a study.

We are so hopeful for IVIG with Dr K after our initial visit May 26...really need that visit today but I'm glad to learn from you that sleep may return. It just seems that sleep deprivation would only makes our kids' symptoms all worse. We tried melatonin one night this week but she stayed awake so long we thought maybe it was making the insomnia worse, perhaps we'll try it some more. I would imagine it would take a few days to get any effect from the melatonin.

I was actually grateful to read your tagline and know someone was having a good day (even relatively)...there have been so many challenging posts the last few days...

turning all the lights on in the house nonsense The brain is facinating isn't it? My dd turns all the lights on...I just thought it was her. I so appreciate this forum...makes me feel less isolated, still sad...for all of us... but at least less isolated.

The diagnostic criteria from Dr K indicates sleep issues as a component of PANDAS but does anyone know if this has to do with a change in the child's biological clock/circadian rhythm? Does anyone have a suggestion to help improve sleep? Dd has progressively extended her bed time hour this week from 10pm to 5am..in 4 days she's shifted her sleep schedule by 7 hours. Thank you in advance for any suggestions....

What is up? I honestly questioned the full moon the day before yesterday...dd off abx for 4 days, full blown exacerbation and then non-PANDAS dd starts with cold symptoms...too many variables....it is too hard to know the root cause from day to day.