Gratituesday- Good Doctors

Well, I figured it was time to spill on the news with Jacob and what is going on with him. First, though, I just have to say how grateful I am for good doctors. Before we even took him to his appointment, Dr. Hayes and Dr. Hoerning had discussed his case, and Dr. Hoerning had done some research on this condition. We were really encouraged by that. Dr. Hoerning said that he has no doubt that this conditon is real; and Dr. Hayes has actually seen cases of it.
When he first came into the room, I guess Jacob was jumping around in his seat and tapping his feet and just really fidgeting (which has been the case with him). He noticed that right away and instantly said that, "Yeah, Jacob had definitely changed from what he used to be;" it was that noticeable). He agreed with us on what the condition is; it's a condition called PANDAS (Info 1; Info 2; Info 3).

Basically, what had happened, was that Jacob caught a Strep infection (hence the fever and rash he had had a few weeks ago; I could kick myself for not catching it), and that strep infection had brought on an autoimmune neuro disorder that causes sudden symptoms of OCD. Now we are talking sudden, as in overnight here....that was the scary part with all of this. He woke up a changed boy; he was suddenly worried about germs, washing his hands several times a day, and he became super hyper compared to what he was before (can't sit still, can't focus on any one thing, has a hard time focusing on anything because he's too worried he might have touched something or got into something, sleeping a lot, separation anxiety, irritability, complained of tremors in his arm, etc.). This has made certain activities really hard; for example, we were doing a little bit of school one day, and just to copy down something that really before would have only taken him maybe fifteen minutes to do, took about an hour and a half. Vacuuming the kitchen the other day took him thirty minutes; just the kitchen! I have to say, though, that he did an excellent job (I feel like we are, in essence, raising Adrian Monk; not to make light of it, but that's how it feels). All of this happened, literally, in the blink of an eye, which was what clued me in that something wasn't right; the Mama Bear began to emerge. (I will be honest here and say that I've struggled on my own with a form of OCD, but since Jaden was born, I've really been able to fight a lot of it off and have changed so much from the way I used to be; you can ask Dan.:)) From what I've read, if the family history shows OCD in it too, then this condition is also more of a possibility if a strep infection occurs. He has also been putting off going to the bathroom because he doesn't want to deal with it, but he has to go a lot and will sometimes have little accidents. It has been a nightmare, and I don't think that explaining it in words here can really make you see what has been going on with him.

Anyway, the doctor put him on antibiotics for two weeks, and in that two weeks, we are to watch him and see if he improves....his symptoms should get better over time, but if he does get another strep infection, he can relapse. He may struggle with this for the rest of his life, but on a lesser basis, once treated with the antibiotics. Dr. Hoerning said that we caught this pretty early, so treatment should go well.

The scary part with PANDAS is, that if not caught right away, it may go on untreated for the rest of that person's life. A lot of doctors will only do a throat culture to test for strep, which will come out negative if done way after the symptoms have abated. Strep can go away on its own within about a week's time. Jacob's was negative, which was why the first doctor thought we were crazy (obviously, if she were really a good doctor, she would have known this). If you think your child has this, then you should ask for the strep antibody titer test, which they have to send to a lab. It will test for antibodies in his blood. Jacob's antibody test did come back negative, but again, it has been quite a while since his infection....

I say all of this and bear this all out on the table just to say that I'm grateful to Dr. Hoerning for giving us a chance....and I also want to caution other parents. I know that there have to be kids out there who the doctors have misdiagnosed and just signed them up for therapy right away; there may be something else underneath the surface going on; a real medical condition causing their problems or symptoms. Don't be afraid, as a parent, to pick that baseball bat up, and fight for your child. If one doctor won't listen, find one who will.

So far, Jacob has shown an inkling of improvement since being on the meds. He has actually been able to get through, at least, half a day without asking us if he needs to go wash his hands or if he did such and such.....my hope is that he will continue to improve. I just have to remember that God is in control, especially on those difficult days, where I am about to pull my hair out with it all.

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