The Obsessions, Insights and Observations

[LordChallen]

I have found it profoundly enlightening to read about some of the obsessions and what parents thought were associated to them.

I know some of these things are pretty personal, but finding patterns and possible solutions can be very helpful.

 

So, my DD is 10. She was diagnosed with Sensory Processing Disorder when she was about 3. My daughter was adopted at birth from my niece. We believe she was exposed to several drugs during pregnancy, and the father was a heavy user.

She is "normal" from all first impressions, but she was obsessive about intense events. Like she might get hit by another child and she would not let it go for months. Then it was things like "a child threw up on the rug" and she would never sit on the rug again. But basically, it was very manageable and I that concerned. We had therapists for her for anything we thought she needed.

She did seem to get sick easily. And she got strep, and pneumonia, even the H1N1 (we think all did) she started getting a little worst. She also have a couple of stays in the hospital for UTI's and blockages. She was diagnosed with gastro-paresis  was one low doses of amoxicillin for motility from a very young age. Eventually that stopped working. So we went to an antihistamine called cyproheptadine. She is still on it.

She has been on antibiotics several times, for ear infections, pneumonia, etc. She had blood work a couple of times and developed a phobia of needles. I had major heart surgery she was about 5 and that might have affected her. With the last time we needed blood work, she had a major panic attack, hyperventilating, etc.

Mostly, her major obsession was with getting a fever. She needed me to check her forehead at least 2-4 times an hour, all day, every day. Then it was fear that she would throw up. Every 15 minutes she would say she was going to throw up. She got sick at Applebees about 3 years ago and everyday something reminded her that event. She didn't want to go out to eat because it reminded to her of that. Needless to say, we never went back to Applebees. Going from appointment to another would trigger major anxiety, but once there, she was fine.

I started her on a powder probiotic, 5 billion, called Culturelle, about 3 weeks ago. She started having better days, but also somethings got worst. She seemed to get more fearful of others and their germs, but less about her forehead. But, she started playing for friends again.

I started her on Renewed Life 30 billion, and her anxiety seemed to almost go away. But her ability to process her frustration also disappeared. One night she physically violent with us, the next day she attacked another student (her niece) in school for not getting out a seat she wanted.

My Pro-Kids (Pro- 15) got here the next day and I stopped the Renewed Life and gave her the new Pro-Kids. Everything seemed to just settle and calm. She had a wonderful day. She went to her gymnastic lesson without complaint, she played with her niece, (got annoyed but worked through it) and went to the store with us without complaining. She kept saying how good she felt, her stomach didn't hurt. I began to question about things like, "did she feel spoiled" (a common one), did she feel anxious, (very common), was anything reminding her of Applebees, (very common) and she answered "no" to all it. She checked her forehead once today.

Even though I'm pretty excited, I know this stuff is never really over. But, the idea that there is hope is strong with me.

Edited May 27, 2018 by lordchallen

[bobh]

Watch out with probiotics.  I used to think our child's reaction was very rare, but the more stories I heard, the more I realize that PANS kids getting worse on probiotics does not seem to be that rare.

After being on various probiotics for about 2 years, I got suspicious when we accidentally missed some doses (I thought the child might be better).  Then I did qualitative measurements (how much soap he used daily, which I had been monitoring for a while anyway) with him on, off , on and back off again (when it is just one on and off, it might be co-incidentally something else).  With a little work, I showed that he was quantifiably worse on the probiotics.  We did this with both gutpro and culturelle - both made him worse, not too dramatically, but statistically noticeably.

One explanation might be SIBO (Small Intestine Bacterial overgrowth) - if that is a trigger, then probiotics could make that worse.