What would be the reason for random good days?

[ajcire]

My ds is not on any medications at all right now. What would be the reason for a sudden mellowness? Why would he go from having a long period of time of extreme nastiness towards his sister to a sudden day of being back to a normal tone and attitude? Is it even stranger that it is correlating with my dd (non pandas) telling me she has a sore throat yesterday? Calm before the storm? The eye blinking is still there/occasional throat clearing... subtle but there.

 

 

And just a vent... when out with the kids at a kids fun place my well meaning family pointed out to me that the place was full of children who had some attitude/behavior issues going on or who just were not nice.... Just a vent cause they obviously aren't getting that I don't think my ds's the worst behaved child ever and that I do recognize some behaviors are consistent with ones seen in non pandas kids.... grrr... I'm going by a whole picture, not one isolated symptom. Plus yesterday was just an exceptionally good day for my ds... and so far this morning he seems to be off to another good start. It's actually making me nervous.

[thereishope]

First, my family (not immediate, but extended) seems to now remember my son's whole childhood prior to PANDAS as being OCD-ish, tempermental, overly shy, etc. That's interesting because they barely saw him as a toddler. Maybe once a year. So they don't really know what he was like. Also, I can easily point out other family member's children as having mannerisms that would be considere "odd". Not they have PANDAS, but why is my children looked at different all the time? So frustrating! I really have come to the conclusion that I will correct them when they say something way off mark, but for the little things, I take a deep breath and just complain about it to my husband in the car on the way home.

 

As for the calmness in the house. Well, some have said that their children actually behave better while they are sick and PANDAS kicks up afterwards. So keep a hawk's eye on it. Also, there's a chance, he's just doing better! Either way, enjoy the calmness and pray that it stays. I hope it does for you.

[ajcire]

Thanks Vickie. Yeah, a well meaning person was trying to get me to see that my son is just fine... great. I actually am having the opposite issue than you. My thing is not that anyone is looking at my ds as different and trust me I don't want them to see him as different but hearing that he can't possibly have pandas because the other kids are being meaner and clearly can't all have pandas just cause of that is aggravating. I just keep trying to get them to see that I don't think my son has pandas because he can be not nice. There is SOOOO much more to it than that. I would much rather think my son just needed an attitude adjustment than that he has swelling in his brain... grrr....

 

So for some kids does just time heal even without antibiotics? He was on a month and a half of amox back in sept/oct but it didn't put a stop to the throat clearing and behavior (tone, argumentativeness). You know, the other day I was asking about him talking in different voices and I just realized that not one time yesterday did he not use his normal voice.

 

 

For those of you who document all this, do you just use a notebook or calendar? I just realized I really don't keep good info... and maybe in writing it will tell me the whole story.

 

 

 

 

First, my family (not immediate, but extended) seems to now remember my son's whole childhood prior to PANDAS as being OCD-ish, tempermental, overly shy, etc. That's interesting because they barely saw him as a toddler. Maybe once a year. So they don't really know what he was like. Also, I can easily point out other family member's children as having mannerisms that would be considere "odd". Not they have PANDAS, but why is my children looked at different all the time? So frustrating! I really have come to the conclusion that I will correct them when they say something way off mark, but for the little things, I take a deep breath and just complain about it to my husband in the car on the way home.

 

As for the calmness in the house. Well, some have said that their children actually behave better while they are sick and PANDAS kicks up afterwards. So keep a hawk's eye on it. Also, there's a chance, he's just doing better! Either way, enjoy the calmness and pray that it stays. I hope it does for you.

[thereishope]

My son continued to improve and eventually got back to 100% himself w/o being on long term abs. The doc would only give them to get rid of the strep infection. So, it is possible, but I would still highly recommend long term abs to everyone. If I could have gotten them, I would have.

 

As for documenting, I would keep a journal on the computer. Sometimes, I would just leave note paper on the counter and write one word blurbs about what I saw to help job my memory at a later time when I could write more detail. You really can forget a lot in a short period.

[Suzan]

As for documenting, I would keep a journal on the computer. Sometimes, I would just leave note paper on the counter and write one word blurbs about what I saw to help job my memory at a later time when I could write more detail. You really can forget a lot in a short period.

 

I do that too. I just have an ongoing Word document where I write the date and day and make any notes about dd's behavior, good or bad, any symptoms that appear, break through's, dr. appts, unusual activities, etc.

 

Erica, there can be a gradual improvement after being on antibiotics so you may be seeing some of this. After my dd's first obvious episode in January of this year when she had strep, she did get gradually better after a week on zith. But the strep came back so it didn't last. Also, we can have good days and bad days and I don't know what does that either.

 

Susan

[ajcire]

Susan, good point. I definitely have my bad days.

 

 

 

As for documenting, I would keep a journal on the computer. Sometimes, I would just leave note paper on the counter and write one word blurbs about what I saw to help job my memory at a later time when I could write more detail. You really can forget a lot in a short period.

 

I do that too. I just have an ongoing Word document where I write the date and day and make any notes about dd's behavior, good or bad, any symptoms that appear, break through's, dr. appts, unusual activities, etc.

 

Erica, there can be a gradual improvement after being on antibiotics so you may be seeing some of this. After my dd's first obvious episode in January of this year when she had strep, she did get gradually better after a week on zith. But the strep came back so it didn't last. Also, we can have good days and bad days and I don't know what does that either.

 

Susan

[bronxmom2]

Hi Erica-- my son definitely experienced a "calm before the storm" effect-- PANDAS symptoms disappeared just before he was actually sick.

 

Many times, before I knew about PANDAS, I would experience the strange sensation of my son "returning" to me when he had a fever-- I would be suddenly talking to this wise, calm, tender creature. It is also officially documented... during his first really intense exacerbation, when his school insisted that I have him evaluated for ADHD, he was taking the WIAT (weschler achievement test) and the tester came out during the break and excitedly told me "this kid doesn't have ADHD, he can absolutely focus beautifully"-- an hour later he stumbled out of the testing room with a 104 temp and a raging strep infection.

 

From what you describe, I would say... get him on antibiotics asap.

[Suzan]

Today, my dd was complaining of leg and joint pain which she has not had trouble with since she started on her antibiotics. While this was going on, her eyes were big and dialated. Later, she said her pain was gone and I looked at her eyes and they were back to normal. Something happened during that time, I don't know what that was all about but it reminded me of the coming and going factor. I wonder what it is.

 

Susan

[bronxmom2]

Hi Erica-- my son definitely experienced a "calm before the storm" effect-- PANDAS symptoms disappeared just before he was actually sick.

 

Many times, before I knew about PANDAS, I would experience the strange sensation of my son "returning" to me when he had a fever-- I would be suddenly talking to this wise, calm, tender creature. It is also officially documented... during his first really intense exacerbation, when his school insisted that I have him evaluated for ADHD, he was taking the WIAT (weschler achievement test) and the tester came out during the break and excitedly told me "this kid doesn't have ADHD, he can absolutely focus beautifully"-- an hour later he stumbled out of the testing room with a 104 temp and a raging strep infection.

[bronxmom2]

oops, it posted twice for some reason

[ajcire]

Ok, I think I am getting a little nervous now. My dd (non pandas) told me tonight at bedtime that her throat still hurts.. will get her cultured tomorrow.. if positive I need to get her into an ent because she had strep in early Sept, the end of October and if it's again...

 

I need to try to figure out insurance stuff and get my ds in to see Dr. T.

 

 

 

 

Susan, can the dilation be part of her body's reaction to pain?