managing PANDAS

[colleendonny]

Just wondering, does anyone have a PANDAS child who has started and remained mild to moderate with symptoms? Or do exacerbations tend to get worse each time? And for those who have been dealing with this for a while, the sooner you treat symptoms with exacerbations, does it usually lessen the intensity/ length of them?

 

Just curious. I know each kid is different and I cannot predict my DD's future, but was just looking for experiences. I just feel like it can get better, but then again I read so much of things not getting better, even worse. I feel as if my family, even my husband, doesn't get the seriousness of PANDAS, because my DD is not in a bad place right now.

[airial95]

We have been in a management state, I think, since our initial journey started. Although we do we have chronic strep infections(I think we're up to 18 since 1/10 - but I,m losing count)

 

We've only been able to get him consistently to 85% with abx, the only time we were at 100% was for a few weeks post T&A lat November. I absolutely believe that early intervention at each sign of infection was important to keeping him functional. And I think we've done a good job of keeping him functional. We've been happy with that for the last two years and have become effective managers of this condition. We started severe, but our episodes have gotten milder because of early intervention.

 

we were happy managing things and with just keeping him functional because he was so young when this started we didn't want to try more aggressive treatments. I can see why many families, for various reasons, would be happy with that and want to keep that going - financial, other health reasons, fear of rocking the boat and loosing the functionality they have. It's a personal choice for you and your child, and in our case it has served us well for 2 years.

 

Now, that being said, after 2 years, now that he's 4 1/2 and has one more year before starting kindergarten, we are starting to explore a more aggressive path. What changed for us was seeing him at 100% after surgery. We now had proof that he could get beter, and by being satisfied with managing functional we were short changing our child. I can honestly say, without seeing that, I'm not sure we would be changing course. We were firmly in the "don't rock the boat" category. We're also starting to see it impact his happiness, kids asking about the tics, the OCd affecting some interaction with his playmates. I think we were also happy with functional because he was happy. The few things we see now, will only be magnified when he started mainstream kindergarten (he's in special-Ed pre- k now). So we're going to try to take advantage of the extra year his late birthday gives us to get aggressive.

 

I support those who are in management mode, because I understand it completely, in outr case, it has worked for 2 years.

[LNN]

My kids' initial episodes were by far the worst. Truly horrific. Now that we know more, it is far easier to manage and keep things from getting out of hand. But you do need to address underlying issues in order to get to 100%, IMO. That may include treating chronic infections, vitamin/mineral/amino acid deficiencies, food allergies, mold, metals, yeast... Every kid has a unique profile.

 

My best advice is to neither panic nor "wait and see". Take it seriously, get with the right doctor(s), treat promptly, and stay balanced. Your DH and other children have needs too, as do you as a person. It's like preparing Thanksgiving dinner. The bird can't get all the attention. It's about balance and turning your attention to a full array of needs of everyone in the family. Yes, your DD needs treatment as quickly as possible. But if that means waiting a few weeks, she isn't going to be permanently damaged. Try not to go to that dark panic place.

 

In addition to medical treatment, I highly recommend both cognitive behavior therapy and family therapy. For many, this disease is much more than just infection=>neuropsych behavior and abx/immune suppression=>full remission. Treatment needs to cover a full range of issues, in my experience. It's the combo of professional therapy, daily home therapy, lots of communication, supplements/diet plus medical treatment that has helped us avoid explosions as bad as the first one.

[MomWithOCDSon]

I would say that we are in a "management" phase. Our case is a little different from Airial's, though. Our DS15 was diagnosed with "regular OCD" at the age of 6, and we went another 6 years treating that before we were able to definitively make a strong enough link between strep and severe ramp-ups in his OCD behaviors to convince someone to help us treat PANDAS. He's been on an improvement path since about November 2009, but it has been a long, slow slog with points of dramatic improvement followed by a plateau, followed by subtle improvement, followed by a regression, followed again by dramatic improvement, followed by plateau . . . well, you get my drift.

 

Today he's off the abx, still taking low doses of a couple of psych meds, though. But fully functional at school, socially, happy, intellectually curious, even-tempered, etc. In our case, because, unlike Airial, we weren't able to identify and treat the PANDAS quicker, I'm not entirely certain if some OCD (hopefully mostly sub-clinical) might not always be a part of who our DS is. I guess I haven't see "100%" in so long, I'm a little wary that it might be an illusion in our case. Truth be told, I think his anxiety and PANDAs commenced a LONG time before even the OCD was clinically identified . . . probably about 2.5, not unlike Airial's DS . . . so I continue to hope for the best but stay committed to learning to "manage" the present.

 

In the end, I can see that between the interventions (however delayed they unfortunately were) and his physical, emotional and mental maturation, he is becoming the good, strong, happy, capable person I've always hoped he would be. Personally, I think that when it comes to first identifying and treating PANDAS, time is not necessarily your friend; thinking and acting quickly can be key. But once you've gotten your head wrapped around it and learned to counter its punches with a right jab of your own, time can be in your favor. The kids' minds mature, as do their immune systems, and nature can start to cover some of the ground that they were previously defenseless in trying to hold onto!

[JAG10]

 

It's like preparing Thanksgiving dinner. The bird can't get all the attention.

 

The Analogy Queen strikes again!!!

 

God loves you, Laura.

[LNN]

 

It's like preparing Thanksgiving dinner. The bird can't get all the attention.

 

The Analogy Queen strikes again!!!

 

God loves you, Laura.

Winter sweat pants yielding to shorts = treadmill and diet. Guess I have food on the brain

[thereishope]

.

Edited September 30, 2019 by Vickie

[oivay]

In our case, each exacerbation was worse. The first one was pretty bad though, and lasted the longest. But by the time the second one rolled around, we and her doctors were better able to treat it and pretty much knew what it was.

The third one was pretty bad, but initially responded to treatment. By the fourth time (which was an extension of the third time), I think we were more "accepting", and knew what to do, but it was also clear that it wasn't going away this time. That's why we did the PEX.

[colleendonny]

I know the future is unpredictable. I need to just live in the moment and stop worrying what the future holds. I find it is hard hard getting me into that mindset, though.

I read stories here of many teenagers who are having such difficult times and I can't help bit to imagine our future and times ahead with illnesses. And I still have 8 more years till DD is a teenager!

 

I went to her school yesterday to register her for kindergarten. Her nurse was looking over her immunization records and was talking about if she needs any special utilizations for her autoimmune disorder. I told the nurse she has PANDAS, and she had never heard of it. I found myself trying to explain it, but I couldn't really express what is going on. I know lots of kids have letters sent home if there was a strep infection going on, which is great, but my DD's sudden onset wasn't from a strep infection. I can't ask for a note to be sent home for any and every illness that goes around.

 

Thanks Laura, reading about your kids makes me excited that I will be using the same doctor as you

. He does seem great and I am very much so looking forward to our appointment with him.