Questioning recovery...

[BeeRae22]

Undoubtedly, my daughter is doing much, much better than she was 2 months ago.... She is eating again after 8 months of severely restricted/not eating which is HUGE, odd behaviors have stopped, she hasn't raged in a long time and is overall happier and well.

 

We had a little folate mishap (at least that's what I think it was) about a week ago-- I had increased folate drops from 2 to 3, for 2 days and not thinking, had also given her a multivitamin (more folate!) and she had a few episodes over the course of the following 6 days or so. The day of the last episode she was also very tired from a sleepover which definately didn't help.

 

Here's the thing though.... I was thinking about the last "episode" and the fact that she was incredibly tired, and I'm starting to question (and worry!) if she is actually doing as well as I sometimes think she is, or is the summer schedule, sleeping in, doing what she wants, etc. just "accommodating" her stressers? When school starts in the fall, is the anxiety (and therefore, the odd behaviors, etc) going to all start back up again when she's tired and "scheduled"? I'm trying my best to stay positive that this school year is going to be much better than last, but aside from her eating, what if the rest of it is just "on summer vacation"?

 

We had started minocycline at the beginning of June, and it was 12 days later that she started eating again.... The rest of the behaviors also improved/diminished for the most part, with only very few and very brief flashes of odd "moments". .... But also, this was the end of the school year too! I wish there was a way to clarify or measure her improvement. The eating piece is a huge indicator, and I'm not dismissing that, but she still has a LOT of hangups about foods, and still doesn't eat many of the things she used to enjoy.

 

I want to have a plan for the fall, in the event that the raging and school refusal, etc. returns, but I'm not sure what that plan should be. I want to be optimistic, but also realistic. Last school year was horrendous-- a complete nightmare. It nearly tore our family apart, and I honestly don't think that my relationship with my husband could survive "another round". I also don't want her younger brother to be subjected to all if that again-- I can't believe he did as well as he did and we may not be that lucky next time. But we're already in disagreement about how to handle it. I feel like I am fully prepared to pull her out of school should things become really bad again, he doesn't think that's an option, and doesn't want to talk about that right now. I feel that we should discuss it and make a plan. I am at a loss, and am really beginning to dread school! And if course, I am the one that primarily has to handle it all.....

 

Anyone have any thoughts on any if this? Maybe I'm just looking for some encouragement

[Missmom]

You can make a plan B. and even a plan C. Even if your DH does not want to agree or acknowledge it at least you would feel better about being prepared for all the what if's. Just tell him that you probably won't even have to use any alternative plans but if it makes you feel better and calm your nerves what can it hurt. Just look into all of your feesable options such as home school programs, smaller private school, tutoring, etc..... Check out all of your local resources and figure out what is available and at what cost you can afford. Talk to other moms and you may learn of things you did not even think of. Hopefully your daughter will continue to improve and you won't even think twice about any of this again but in order to save your sanity and possibly your marriage and family you have to do this. Good luck and take care of yourself.

[airial95]

_{We found sleep to be critical to my son's overall recovery. We found that he was more suceptiblie to exposures and even mild setbacks when he was tired. Mid year last school year I changed my work schedule to have the kids home after school instead of doing after care. He would nap 2+ hours at least 2-3 days per week and the change was astonishing. He had his last IVIG over Christmas and his teacher asked if they used something different because it seemed to last longer this time around - nope, only change was the naps.}

 

_{Our pediatrician explained it to us this way - their immune system is wonky, and because it thinks a protein in the brain is strep, even in the complete absence of strep - the body still thinks it's fighting infection. Lots of the stuff we are doing (abx, anti-inflammatories, IVIG) help, and if we can prevent the antibodies from crossing the blood brain barrier (by reducing inflammation) we can see recovery of symptoms, but it takes time (and the IVIG) to help stop the immune system from thinking there is strep in the body. Basically, the body continues to think he is sick, when he is not.}

 

_{And when you get sick, what does your body need most to recover? Rest. So the more he was getting extra rest, the stronger we saw him become. He had his first strep infection (and subsequent flare) since December a couple of weeks ago - got strep during the week of Vacation Bible School - when he was staying up later (it's in the evenings) and his schedule was fuller than any other week of the summer so he wasn't getting the "down time" he had been getting.}

 

_{So it's very possible that the extra rest is making a difference for you. We are often looking for supplements, abx, oils, other infections, additional testing to help us while sometimes overlooking some simpler solutions that could make all the difference in the world. We've known for YEARS that my son does better when he has additional rest (naps, etc...) We figured that out with our daily logs and journals early on, but as he's gotten older (and better), we moved away from being as diligent about keeping daily scores and notes - we went back to it in the fall when he started Kindergarten, and that helped us realize that the extra rest was something we had moved away from, and it was exactly what he needed.}

Edited August 5, 2014 by airial95

[MaryAW]

Here are 2 posts regarding homeschool. I do homeschool my PANS daughter. It has made an amazing difference because she isn't tired all the time, not exposed to all those germs, and not exposed to all the stress. The past two years has shown amazing improvement. My husband was against homeschool at first. I kept saying to him "This is her life," and her life sucked at the time. The counselor at school thought homeschool was a great idea too. She said, "This is your daughter's mental health we're talking about." She knew that my DD was not getting the help she needed in school. My husband will tell you that homeschooling her was THE BEST decision we have made in helping her to recover. He is a total believer now. She is symptom free about 70% of the time and her flares are much milder than before. Good luck!

 

http://latitudes.org/forums/index.php?showtopic=22591&hl=homeschool#entry173745

 

http://latitudes.org/forums/index.php?showtopic=22102&hl=homeschool&page=2

[dcmom]

Beerae-

 

Hang in there!

 

I would say summer is likely to make life with pandas less complicated- but it will not really diminish issues. If your daughter is fully participating in her normal summer life and activities- I think you should feel confident for fall.

 

At the same time- with pandas- it is best to have a few plans for what ifs . Use this quiet time to get you and husband on same page, and have medical/psychological drs lined up. I would speak to them about plans and schedule appts for mid Sept- just in case.

 

Seeing your daughters psych with just you and husband is a good way to make plans together.