Not sure what to make of this.....

[BeeRae22]

So, I've posted about my dd several times now-- "daughter with emergent condition". Took her to a specialist, who agrees she has PANS symptoms and suspects possible Lyme coinfection. Well, she has now been on antibiotics for 48 hours, and for the first time in 3+ weeks she just ate something other than bread and ice cream!

 

So, she ate almost a whole hotdog. Now, this was one of the foods (one of the only foods) she would eat for awhile, until she eliminated that and went to strictly bread and ice cream. She was terrified to eat anything else. Not that she didn't want to, but she was terrified.

 

I don't want to look a gift horse in the mouth, but is it even possible to see improvement in symptoms in 48 hours? Or is this a psychological effect, having gone to the specialist and getting the "medicine that's going to make you better" ????? I have to wonder... I'll take it, either way, I've never been so thrilled to see someone eat a hot dog!!! what's everyone's experiences been with starting treatment? I'm sure I'll never truly know the answer to my question, but I sure would like to!

 

The doctor also told me that there might be a flare up of behavioral symptoms, and that that would actually be a good thing, because it would more accurately pinpoint the idea of a Lyme coinfection. Right ow, we're not exactly sure what we're dealing with. The Lyme test she had was negative, but I was told that that doesn't necessarily mean she doesn't have PANS. I've had several different sources tell me that there are a few different coinfection s that result in psych symptoms. The restricted eating was not her only symptom, she's had a number of other behavioral symptoms and personality changes as well.

 

It might be my imagination, but she seems a little more "lively" and animated today than she has been, and the school psychologist actually commented on how smiley and happy she seemed today....

 

Breathing big sigh of (hesitant) relief. For the first time in several months, I feel like there's hope for recovery..... What a difference a hot dog can make!

[Hopeny]

Awesome! We did have some pretty spectacular results very quickly with antibiotics of the psych stuff, though it is a long haul don't get discouraged. I think even within 24 or 48 hours of starting Doxy, when that happened I knew we were on the right track. Lyme physical symptoms (pain, muscle stuff etc) took longer. The fastest working abx for us were Doxy, Augmentin and Biaxin. With Rifampin/Zith combo it was more like a slow but steady result. I found we had a really big improvement like 60-70% quickly and the rest has been the long haul. Of course there is hope, with the right treatment, prayer, perseverance and commitment she will get better. With Lyme & co, the spirochete changes forms and so do some of the con infections so you go up and down a bit according to the life cycle and herxing. I frequently felt like I was playing whack a mole. Sometimes it's two steps forward and one back. Just keep learning and watching.

Edited January 17, 2014 by hopeny

[qannie47]

I am smiling for you! We all know how good it can feel to see positive changes! You will find as you navigate Pans/Pandas that each episode can be unique onto itself. Eventually, you should start to connect the dots and find some form of pattern....that takes some time, but it will bring some sense of control to the situation. I am glad that your child seems to have responded so quickly!

[mama2alex]

Whichever it is, so glad to hear this! Sounds like you're in good hands.

[Mommy2MCL]

Yay! I've been wondering about your daughter since your last post. I think you should take it as a sign of a positive treatment. I just wanted to add that while you may see quick progress it can also slow down so please don't be discouraged. To me as I began this disorder I had so much doubt. But each small step of progress helped to diminish that. Thank you for updating.

[nicklemama]

It's a positive sign. Just prepare yourself for the ups and downs that there will be.

[Rachel]

Thanks for sharing your progress.

Rachel

[BeeRae22]

So, I was so thrilled that dd ate something new,... Yesterday and today we're back to basically nothing. Now I'm wondering if that was a psychological effect or not. I'm sure that the bad cough/cold she has is not helping at all. She did ask for a cheeseburger last night, but didn't eat it. but I suppose that having her even ask for something is progress, since she wouldn't even try before.

[ktdommer]

My son is in process of PANS testing. We blame bartonella for most of his pysch issues. All bipolar issues cleared up at 3rd month of IV rocephin. Anxiety went away. Depression improved. At 9 months everything was so much better but not perfect. Now he is backsliding.

Herxing from antibiotic treatment can be severe. Learn how to detox. You may also want to look into MTHFR testing, if you haven't. There is so much to learn about Lyme. I hope you are having testing done through IgeneX Labs in CA.

[MomWithOCDSon]

We, too, saw dramatic improvements within 48 hours of commencing abx, but similar to your observations, it was not a clean, clear trajectory back to "normal." Many of us have experienced what we call "saw-toothed healing" whereby there is improvement, then perhaps a re-emergence of the negative behaviors, only to improve again a day or two later. There also are frequently plateaus where you think maybe it's gone as far as it is going to go, but then you stop the abx and things slide backwards again.

 

I would encourage you to journal . . . just a few notes each day about your DD's behaviors. Things that you notice. And while you have to take things one day at a time, keep your eye on the bigger picture . . . a 3,000-foot viewpoint, if you will. I think you'll ultimately find that, despite the ups and downs, the overall trajectory reveals improvement. The journal will help you keep your eye on the prize, especially when there's a less-than-stellar day in the mix.

 

All the best!