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Normal for symptoms to come and go on ABX?


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Hello!! As you all know I am very new to the PANDAS world. Isaiah was started on Cephalexin 500mg twice a day this past weekend, I started seeing a change in him a couple of days ago and was very optimistic that it was working and he was getting back to his "normal" self, however yesterday was a rough day, his symptoms returned almost completely. I was just wondering if it is normal for that to happen while on ABX, or does that mean that this ABX might not be working for him? It is too early to tell today how he will be, so far this morning we haven't had any episodes of crying, anxiety, ect, so I am hopeful. Again, sorry if this is a silly question, I'm just confused! Thank you so much!

 

Tiffany

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i'm new, too and wonder all the time if my daughter should be on abx....she has been slowly getting better w/o them....so last week we tried them for 6 days....i think i was A LOT more relaxed while she was on them, but I really didn't notice much of a difference for her...she had good times during the day and scared times during the day which is exactly the same as she was before on them....so we are not opting for abx as of right now.

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Hi --

 

What you're seeing might be what many of us call "saw-toothed healing pattern," and yes, it is common for many of our PANDAS kids. If, however, you don't see a return to healthier behavior in the next few days, you may want to check with your doctor about a change in abx.

 

Make sure you chart or journal your child's behaviors daily, even if it's just basic shorthand notes, up and down arrows, etc. That way, before you decide for sure that some change is warranted, you can take a look through the full body of notes and see what the overall trajectory really is. If it's two steps forward and one step back, you're probably okay and heading in the right direction with the right intervention. But if, after many good days, you hit a bad one and the bad ones just keep rolling, one after another, without abatement, then you'll know for sure.

 

FWIW, when we first started abx, the positive changes were so fast, and so dramatic, we sort of got "tricked" into expecting the healing trajectory to continue on that dramatic incline. But it didn't, and it probably wasn't appropriate to expect it to. Maybe he was so bad off when we began, that any relief felt like monstrous relief, know what I mean? When he plateaued the first time, we took him off the abx, thinking maybe it'd done all it could do; within 8 days, though, his behaviors got dramatically worse again, and once again improved when we re-instated the abx. He's continued to improve over time . . . but it's been a long time: almost 2 years now.

 

So, I personally think time is part of the formula here, too. When our kids seem to "go crazy" almost overnight, we want the healing to occur just as instantaneously. Perhaps for some, whose PANDAS gets caught quickly and receive treatment early, the healing is quick. In our experience, unfortunately, it's a longer road.

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I agree with Nancy. We saw some return of symptoms as well while recovering. For my son, I would say the worsening of symptoms (when not being induced by another strep infection) would only last for about 3 days then it's like he would reset himself and be back to where he was in recovery prior to the blip.

 

Other things can also cause a worsening of symptoms like stress, exposure to someone else having strep, allergies, viruses.

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Others have provided good answers to your original question. I'll offer up my way of charting my son's symptoms (below). Formatting won't look right after I post it but essentially I use it as a guide to rate his OCD, behavior, and anxiety on a daily basis. The scale is appropriate for my son, yours will likely vary and you may not even use these three categories. The real benefit for me is that it was real easy to talk about documenting my child's symptoms but for me, really hard to carry out on a regular basis. It is very easy for me to plot a number down at the end of the day. You may want to create a chart that captures scores by morning, afternoon, evening - or by the hour if you are really energetic. I use excel and create graphs against time noting dates when medications are changed.

 

Documenting your child's symptoms, especially as their medicines change can be very beneficial to you and your doctor(s).

 

Hope this helps. bill

 

 

 

OCD

Shut Down 9

8

Others Contaminated 7

6

Functional but Persistent 5

4

Functional with Triggers 3

2

Not noticeable 1

 

Behavior

Raging/Must be Restrained 9

8

In Face/Won't Yield 7

6

Angry/Defiant but Yields 5

4

Pain in the Butt 3

2

Happy 1

 

Anxiety

Cocooning all Day 9

8

Some Cacooning/Constant Fingers 7

6

Picking Fingers Often 5

4

Some Finger Picking 3

2

None 1

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Totally normal, if you look at the data that I left in the tracking spreadsheets I sent you, you can see how my son saw the same thing. What we noticed through our detailed scoring however, was that the "peaks" or highs kept going down with every sawtooth spike. That's how we were truly able to gauge if the abx were working of if we needed a change.

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Thank you all SO much!! I think charting is definately my best bet, I just wasn't sure how to do it, but Bill's example makes sense as to having different catergories and assigning numbers. Today has been another rough day unfortunately. Hopefully we can be on the upswing again soon. It makes sense the "saw-tooth" pattern that Nancy explained, and although I would love for him to be back to 100% I know it will take time, this has been going on for a long time, I can't expect immediate results as much as I would like them!!! Thank you all though, this has made me realize that this is something that happens sometimes, and that we are still on the right track.

 

airial95- You sent me a spreadsheet?? I looked through my email (tiffnsonny@hotmail.com) but did not find anything? Would you be willing to resend it? It sounds like it would help me greatly!

 

Thank you all again, I am so thankful to have found you all!

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