Thank you fcefxer

[peglem]

Nancy, sorry to see that your daughter is having such a tough time right now. I am praying for her to improve. But, I wanted you to know that your minocycline post, w/ the study sites listed got me to do a little more research and give it a try for my daughter.

 

We started yesterday evening and she got another dose in the AM and today has been the best day we've seen in probably 3 months. We've been dealing with fight or flight meltdowns w/ aggression against self and others several times/day for quite some time. Also, something wanky w/ vision (photophobia? distortions?) and migraines. The only ibuprofen I had to give today was this morning and really only because I was afraid not to. She spent the day with her eyes open and no meltdowns. Thank you so much- even if we only got this one day out of it, what a gift one day can be when things have been so bad!

 

I have seen some reverting back to old OCD fixations that we haven't seen in a while, but maybe that's just because she's seeing things again!

[peglem]

Well, its been a week and the improvements are holding steady- a few blips, but so much improved!

 

How's the augmentin working out?

[sosudden]

peglam, you mention distorted vision... just curious about this because my 9 year old daughter had issues before IVIg and then again starting bad about 2 weeks ago. This is how she describes it: Black circles that she can not see through, sometimes a few, sometimes everywhere!!! Dark shadowy type "figures" It was SOOO bad before IVIg you could just watch her physically startle, it was very distressing to her Is this from brain inflammation? My daughter is just in a bad spot right now and I am back to researching and making connections like crazy...

Thanks for your thoughts!

[peglem]

peglam, you mention distorted vision... just curious about this because my 9 year old daughter had issues before IVIg and then again starting bad about 2 weeks ago. This is how she describes it: Black circles that she can not see through, sometimes a few, sometimes everywhere!!! Dark shadowy type "figures" It was SOOO bad before IVIg you could just watch her physically startle, it was very distressing to her Is this from brain inflammation? My daughter is just in a bad spot right now and I am back to researching and making connections like crazy...

Thanks for your thoughts!

My daughter is non verbal, so my info is conjecture from observing. At first I thought it was sinus trouble because she would pinch between her eyebrows. But then I noticed that she would only open her eyes to look if the object was upside down- or she'd tilt her head upside down to look if the object could not be turned. For the desktop computer she would use dvds to reflect the image upside down and look at that instead of the screen. She spent a lot of time covering her eyes, with them closed and not looking at anything. It may have been autoimmune inflammation of the optic mechanism (uvietis? retinitis? IDK) Sinus probs were ruled out by the ENT...could not get appointment to opthalmologist until next week- but the problem has largely resolved w/ propranolol and minocycline. I think its more the mino that did the trick, since we started the propranolol a few weeks before it and did not see improvement of that symptom until after the mino was added. Before that I had been giving a LOT of ibuprofen (like every 4 hours around the clock), which I hated, but it did seem to give her a little relief from the discomfort or pain and I had nothing else. For the last 5 days she's only had 2 doses of ibuprofen and one of those was for menstrual cramps. So I am hopeful this is finally an answer for us, although it seems like every time we think we have it figured out, along comes another stupid problem that makes us re-think everything.

[sosudden]

OK PEGLAM there just has to be something to this as well, another PANDAS-proof connection...

My daughter before IVIg WOULD CONSTANTLY HAVE TO BE UPSIDE DOWN!!!??? She was always pushing on her eyes, closing her eyes, MIGRAINES...

It was actually one of the things that got me saying "there is more to this than just sudden onset OCD and TICs!!!" Her psychologist saw that too, that there had to be something medical wrong). She was upside down or in painful yoga-type poses ALL DAY!! Even in the car she would climb in and stand on her head (of course had to wait for her to turn and sit right and buckle in which would take a while as we know with these kids;) AHHHH!!!

She would be upside down every chance she got! She couldn't even sit at the kitchen table - she would have to slither along the floor or just lay on her back and stick her legs up in the air. Oh so crazy STUPID PANDAS!!! I just want to cry remembering how bad it was and that she had to suffer so badly :(

IVIg put a stop to that(headstands)immediatly!!!

The "dark circles" took longer to disappear, but not too much longer...

They have come back tho since June 5th :(

Before PANDAS Sara was a totally normal (though super high intelligence) 4th grader....

Had to do homebound school starting in January (although missed more than 20 days of school before that)...

Was able to finish her last 3 weeks of 4th grade with her class, going in about 10:30am!!!

SOOO slow steady improvement until June 5th...

[hugs2day]

Just wanted to share some common symptoms my son is experiencing so I am sure it is PANDAS related.

My youngest son is in a flare and he is pushing his eyes (hard) and telling me they hurt. He also appears to be having vision problems like moments of being unable to focus. He is watching TV in the reflection of the windows. Scared of the dark again.

 

Also getting sharp pain in legs like a bug bite. Neuropathy of some kind. I asked Neurologist and he was clueless. I increased his magnesium incase its RLS.

 

I increased his Azithro, giving ibu and will start steroids today for the PANDAS flare and hoping it does the trick.

[Pandasphilly]

My son also complains of eye pain. Feels like they are bulging out of his head. Also says they keep re-focusing on him. This is quite often. The ophthalmologist found nothing. I realize he also has heightened sensations.