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Dd sick and I'm back to worrying


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Things have been going great. Eating again, responding to CBT with new therapist, no behaviors to speak of. Last night dd came down with a nasty thick sounding cough. Stayed home from school today. This afternoon, she was here with my mother, and when I came home I asked her (dd) if she still wanted to go to her acrobatics class. This class is her competition class, very important to her. She started whining, saying she didn't feel good, her stomach hurt, etc. My mother to,d me that she had been fine until then.

 

Now, she sounds like she has heavy chest congestion, and undoubtedly she doesn't feel great. But this is the same girl who, even through the past year with PANS, and 8 months of virtually not eating, etc. she has not missed a single dance class (and she dances 3 nights a week) in probably 3 years. Even when she's been sick in the past, she still went to dance.

 

She hasn't been "sick", with the exception of a few days of sniffles/sneezing/light cough for a quick couple of days in July since this started a year ago.

 

Not only did she not go to dance, but tonight she had some odd behaviors, ran away from me/wouldn't talk to me, was being "mean girl" to her brother, etc. she hasn't been this way in quite some time now.

 

I don't know what to do. She's on full doses of Zith, Mino & Bactrim, Cla-k detox and Drainage Tone. Awaiting results for spectracell, mold, Cunningham. MTHFR.

 

I felt an immediate wave of anxiety myself when she started acting this way... I think I'm still struggling with PTSD from last year. I can't go through this again, I just can't. I'm trying to remind myself that it's only one night, maybe she just wasn't feeling good and that's that. I also feel like I should've made her go to school, and then dance to keep her routine. She told me later that she "was worried that she would get sick at dance". Legitimate concern, or OCD? Now I'm wondering if I enabled that rotten ocd monster :/

 

I feel like I can't subject her to any more bloodwork right now, since we just had so much done, but any recommendations/things to do or watch for (other than usual) ?

 

I'm praying this was just a fluke, and tomorrow we'll be back on track. Please, please let that be it!

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With all the abx she's on, it sounds like the congestion may be viral. Viruses can also triggers PANS symptoms but hard to say whether adding an anti-viral is needed. If it were me, I'd give lots of Vitamin C (we take 1000mg daily), zinc (30mg or zicam 3-4x/day), l-lysine (500mg 2x/day) and vitamin d if she tolerates it (not all kids do well on Vitamin d supplements). All are available at a local grocery store or health food store. These are my go-to supplements when cold symptoms appear. Since she's already congested, they probably won't stop things dead in their tracks but may shorten the duration of the cold and help her not get as sick. If she's still getting worse on Monday, call Dr M and get his thoughts. Good luck!

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Thanks for the reply.... She still has many food issues, so I know I won't have any luck trying to supplement :( she won't take vitamins.

 

Odd/mean/anxiety behaviors again first thing this morning. I am trying to keep it together, but this isn't good. Last night it was not wanting to go to dance, today it's suddenly not liking Girl Scouts. ( she loved it last week)

 

I'll definitely be calling Monday if this doesn't subside before then ( I still have a little hope anyway).

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We have at time seen smal blips due to illness; maybe 3-4 bad days- then they pop out of it. If it were to go longer than that- I would be concerned.

 

We have found that treating quickly and aggressively is the best bet. We do not (have not had to) chase infection; my kids recover normally from infection, but it does sometimes trigger autoimmunity. For them steroids have been the answer.

 

Have you tried steroids before? Any possibility of getting her on a burst on Monday?

 

Hang in there- the good news is, you recovered her before- you will again- you have learned a lot- you will do it faster!

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We've never tried steroids... Bythe time we got around to considering trying them she was improving and we didn't want to disrupt that since it was going in the right direction.

 

I'm frustrated, especially since she was getting so close to being back to herself. She's been adding new food items and has really connected with her new therapist (who, of course, is taking this coming week off). It's the same exact time of year that this began too, which for some reason makes it worse in my mind. The good news is that she doesn't seem to be pulling back on eating through this flare, but it really bothers me that she didn't go to her dance class last night. I should've made her go. I hate hindsight!!!

 

I managed to get her to go on the Girl Scout hike, and she seemed to enjoy it, although she did get tired. Shortly after we got home the raging started (over a video game with her brother) and spun out of control- hitting, kicking, scratching, the works. It was really depressing.

 

I sure hope she snaps out of this quickly. I gave her a dose of Motrin tonight, figured it couldn't hurt. Any other suggestions?

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No real suggestions, empathy and good thoughts--- and,

if she's sick (and agree with LLM, viral)

why feel guilty or the need to push her to go to extra curricular activities?

Maybe let her know she's got a viral infection, it's not making her feel well/ not herself,

it's okay and just temporary, let her rest and not pass it to others.

My dd9 caught a cold a few weeks ago (she's also on antibx)

and it did 'ramp her up'

not to rages (thank God) but yes, return of mean and verbal lash outs.

I increased vit C capsules, Zinc, and bought Sambuca/ Elderberry

they make Sambuca/ Elderberry gummys (wholefoods, they taste good)

and Echinacea drops (didn't actually use, but now have them).

Hang in there---

Edited by sss
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I initially had the same thoughts- that she wasn't feeling well, so I didn't push the activity. But like I said, she hasn't missed a class in 3 years, even through 8 months of severe pans symptoms.... I'm pretty sure now it was ocd talking, not how she felt. :( because shortly after the class started and she was still home, she was fine ( doing acrobatics in our living room),

 

So far so good today.... No problems. Hoping and praying in was just a 2 day viral blip.

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I suppose allergies are possible, but seems viral, especially since 3 of us in the house got sick.... She had a better day yesterday, started to have some oppositional/aggressive behaviors but I was able to divert her quickly and head it off, so maybe she's turning the corner. Was told to give her 400mg 3x a day for 1 week.

 

Wish us luck ;)

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