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A heavy load...


MMWG

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Hello wise and supportive friends--

I feel so much on this board the weight this condition has on all of us...that we have been put in the position to not only be parents, but doctors and teachers and case managers. Just when we think we are the right track, something triggers and episode and we find ourselves back where we started, or sometimes, even farther back than that. After 2 yrs, I felt that we were being proactive in having my son on preventative abx, and proud of myself for requesting them from our pediatrician and making a coherent enough case to be listened to. We were doing pretty well, well enough that we were all happy, not stressed, and enjoying life, and felt like we were in control of this condition, rather than it controlling us.

In the blink of an eye, it all changed again. We started kindergarten--something millions of kids did a month ago. We weren't even too concerned about it, although that was naive, as school has always been a stressor. But it was liking throwing my child to the wolves. In the weeks that have followed, our lives are 180 degrees different. We have no idea whether it was bacteria, or stress...but it was something.My child is horribly anxious, and for the first time I have begun to see how that anxiety is manifesting in his difficult behavior (the thread this week about anxiety manifesting as refusal and defiance hit very close to home for me), his tic has returned like wildfire for the first time in two years, i have seen signs of ocd for the first time, and he is agitated and hyper much of the time. My little boy has gone away.

Every second of every day since this happened I have been trying to figure out how to stop it, and how to turn it around. We pulled him out of school. We took him to his doctor. We put him on anxiety medicines (two different ones now, neither of which are working), we tried a heavy course of antibiotics (did not work--but doc wanted to try a different type than has worked in the past). We have tried to create a low stress environment. We have told our family and friends that he needs extra love now, that there are many things going on with him that we are trying to help him through. We contacted a CBT that knows about PANDAS and asked for her suggestions in helping him with his behaviors. She gave us some great resources and we plan to see her in the next few weeks to see if she could help give him some more tools to help deal with his feelings. I don't know what else to do.

Every day I think of something else that maybe I should ask about, or request, or do. Maybe he needs the old kind of antibiotic that worked for him in the past (he was given it only because we thought he was allergic to penicillin). Maybe that would drive our doc over the edge and he would be less willing to work with us next time. Maybe I should have him tested for other infections. Maybe that is not right. Maybe there is some magic abx or dosage or treatment or test that if I just think enough or read enough or search enough, I will find it, and I can have my boy back.

There are days I wonder if we are crazy, and whether there is something else going on altogether, though we have several confirmed past strep tests that have coincided with surges in behavioral symptoms. That even though I know it is probably unlikely that a tic, severe anxiety. severe handwriting problems, agitation, emotionality & touches of ocd would occur in one little child concurrent with confirmed strep infection and it would be something other than PANDAS, I still question myself.

I saw the locked thread up earlier, and I saw myself in every post. I feel like it is all on me to get him back. I feel like every decision--to call the doc, to not call the doc, to discipline him and hold him accountable or to decide his behavior is out of his control, to test for something else or not test, to give him probiotics or not, to give him probiotics with s. thermopo-whatever or not to bother looking, is up to me. To listen to the people that swear he just needs some diflucan and some supplements and he will feel much better, or to ignore them because my doctor and the health food pharmacist tell me that is not the case, to surf on this board at 11 pm at night or to step away because sometimes it is too much, to keep looking or to stop, to keep pushing or be patient--those are all my decisions. When I see progress, I am so happy I am smart enough to know the direction to pursue. When I don't see progress, I beat myself up for not doing enough, and not having found the key to the puzzle.

We are a month out from this episode beginning, and no end in sight. Somehow, he is happy, but tells me he is not normal, that his gears are not working right...things a 6 yr old should not have to say. I cannot remember how long it took us to crawl out from under this the last time it was this bad, as I have blocked most of it out. I do not know whether I should just give it time, and try to be patient, or whether I have missed something and should be making another phone call or reading another article, just in case it helps.

This is more than anyone should have to deal with. There are many, many days, when I cannot get up and do this again, but I do. There are many, many days when I want to scream at how unfair this all is. I see my husand and myself slipping away, not taking care of ourselves, despite knowing we must to take care of him. But all of our energy is spent.

 

I love my boy more than anything in the world. and more than I knew I could love another person. He is worth all of this. I just wish it wasn't so hard for him, or for us.

 

Much love and support to everyone fighting this battle.

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(hugs)

 

What antibiotic was he on as a preventative, what dose and how often?

 

Was he tested for strep when his PANDAS behaviors came back? Were family members tested?

 

If positive, what antibiotic was he given (again, dose and frequency, and length of time)?

 

Have you seen a PANDAS doctor before?

 

I'm really sorry that you are suffering right now...I pray every day for our kids. I know the feeling of floundering...it was weeks of indecision, and concerned glances shared with my husband...and hours and hours of dissecting every thing my PANDAS daughter did -- but we were finally showed that IT was back when she became a crying, huddled mess in the bottom of her closet because she couldn't decide what to wear. It's like being kicked in the gut.

 

My daughter was on pen vk....this shouldn't happen...

 

For us, Omnicef and prednisone pulled her out of it in a matter of weeks...thank God!

 

I'll just keep on praying...

 

I'm signing off for the night, I'll check back tomorrow.

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I am so sorry things are so difficult for you and your son right now. All the doubt, questions, and fears you so eloquently expressed capture what we go through in trying to help our children. It is painful enough to have a child who is suffering, but then to not know how to help, what to try next, is beyond stressful and exhausting. I have the same questions Kayanne asked about antibiotics--what was he on as prophlaxis, what was he given when the exacerbation started--dose, duration, etc. What abx helped him in the past? When the exacerbation started did you have titers checked?

You mentioned he has tried two different anti-anxiety meds. Which meds are these? Kids with PANDAS can be very sensitive to psychotropic medications. They can actually make things worse rather than better if the dose is too high. The normal dose for a non-PANDAS child is most often too much for a PANDAS child. If he did not start at a very low dose perhaps the meds are causing some issues? Or possibly even if he was on a very low dose they would cause some issues. These types of medications can sometimes not work properly in a PANDAS brain. Just trying to think of other things that might be contributing to what is going on with your ds. Is his dr. experienced in treating PANDAS? If not, have you considered a consult with an expert? Where are you located? Perhaps someone can suggest a dr. in your area.

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