C_deangelis got a reaction from Robinhubb in Intrusive thoughts - content
Hi there! I’m 25 now but was diagnosed at 7. I had intrusive sexual thoughts, thoughts of hurting others (these were rare and mainly about the people who took my blood because I was entered into a testing program since PANDAS was new-ish), intrusive thoughts about my parents dying (I think this is where a lot of the separation anxiety comes from for PANDAS kids because I was afraid
to say the stuff out-loud in case it came true, I didn’t want them to get hurt I was afraid of losing them every moment of everyday), intrusive thoughts about really bad things happening to my dog (I remember fighting an OCD urge to make a symmetrical mark on my
paper in first grade and suddenly I heard a yelp (I had hallucinations as well) and my brain kept telling me she was dead, intrusive thoughts about people coming to hurt
me or take me away in the night.
If you have any other questions I’d be happy to answer any of them. And if it helps at all, I’m a functioning adult (I work in an OR and i’m pursuing being a physicians assistant). I know it’s terrifying but I promise you, you and your kiddo are strong and will make it through this ❤️
C_deangelis reacted to Cmac in Length on Antibiotics
Pennmom—yes, his intrusive thoughts were the last thing to go. He had hallucinations (he saw werewolves all over the place), ocd—lots and lots of rituals like running in front of the back door a certain number of times before he could enter the house, extreme separation anxiety and extreme anxiety in general, and emotional lability. Those symptoms began to ease up gradually between 3-7 months from the time of the first onset in August 2018.
The hallucinations and accompanying hand movements were the first clue that something was terribly wrong in August 2018. Looking back it seemed like there were some minor signs from earlier in the summer, too. I had never heard of PANS/PANDAS before all this.
As for your original question I think we started to see some improvement after about 8 weeks on a certain combo of antibiotics (biaxin and augmentin) and then dr switched up antibiotics to get the myco p. Although no two kids’ path to recovery is the same it does seem like it takes awhile to get better. (I had such high hopes for our first 10 day course of amoxicillin that the pediatrician put him on when she discovered the strep).
Hang in there—it’s going to get better.
C_deangelis reacted to MamaOnAMission in Magnesium Made Things Severely Worse
when i was reading your post, i thought it was written by me!!! My child flipped on magnesium but flips on EVERYTHING we have tried. It turns out that she went crazy on everything because she had severe yeast/fungal issues. She is now on Amphoceterin and doing well and also tolerating more supplements/vitamins. It was a hellish 13 years and now we are finally seeing some results. Also possitve for lyme/bartonella. We treated her with the bactrim and mino. and she was a mess. Again, I think because yeast was out of control. Hope this helps.
C_deangelis reacted to AlwaysWorriedMom in Does chlorine affect your PANDAS child?
Just curious how many of our PANDAS kids are affected by swimming in chlorinated pools.
Last year when my son was at his worst (we didn’t yet know what was going on) we noticed a dramatic worsening of his tics as soon as he started swimming. We then didn’t try having him swim again until this weekend, 7 months after that last time (he has since been treated for his PANDAS with antibiotics). We were terrified his tics would start again, but this time, thankfully, there was no negative effect.
With camp around the corner, I do worry about him swimming every day, though. I asked the camp to have him shower both before and after he swims, just in case.
So I’m curious how many of us have PANDAS kids affected by chlorine. Please also include information about where your child is in their recovery.