Am I foolish to think that my daughter is going to get better?

[ibcdbwc]

THE PEACE OF WILD THINGS

When despair for the world grows in me
and I wake in the night at the least sound
in fear of what my life and my children's lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting with their light. For a time
I rest in the grace of the world, and am free.

— Wendell Berry

[PIK]

YES I can tell you firsthand, I got better. I am probably not the typical case. I had PANDAS in my early teens, rheumatic fever, OCD. But the poop hit the fan at 28 after glomerularnephritis. I supposedly (according to my psychiatrist that doesn't want to admit he was wrong) have some type of special unique schizophrenia that only responded to Anafranil (OCD med) and NO antipsychotic therapy, that was very late onset of 28, though absolutely no one has schizophrenia in my family and my ASO was completely ridiculous at like 1600. I don't buy it one bit. I actually have an appointment with a PANDAS specialist this coming Monday, so I will be certain to post then. I disagree with Dr. Swedo that people "outgrow" it - maybe some people do, but that wasn't my experience, as mine seems to have exploded at 28. In any case, it took three years but I got better (with the introduction of Anafranil) and now, almost 8 years later, just a few weeks ago on Good Friday,something clicked in my soul, and everything went back to normal. Call me schizophrenic, crazy, whatever, but I firmly believe that part of it was a religious experience for me (not trying to persuade anyone) but whatever one believes, I think it's important to have faith in God, Christ, the Virgin Mary, Allah, or some higher power. PLEASE don't give up on your kid. My mom certainly didn't, and this certainly helped me a lot. When I was first hospitalized the doctor said that the most my family could hope for for me would be maybe working at McDonald's in some kind of occupational therapy "special kid" program, but HE WAS WRONG, and my mother appropriately just ignored his opinion and persevered.

Edited May 10, 2014 by pik

[ktdommer]

It helped me to actually grieve the loss of my son as he was as a youngster. Even if he comes fully around in the future, the illnesses will have changed him. He is fortunate to have made huge strides with Lyme treatment and 9 months of Iv abx. Now onto IVIG. In the Lyme world treatment is compared to peeling back layers of the onion. We are still peeling which gives me hope that we will get there. Many layers down, more to go.

Keep fighting the fight, learn all you can, try new treatments. Believe wellness can happen!

K

[BeeRae22]

Thanks to all of you for your kind words..... I am still struggling with dd not responding to treatment. Se has been flairing lately and hasn't eaten a regular meal in 6 months, and I haven't, don't want to, and cant, move to a place of acceptance with this, at least not now. I try really, really hard to not let it get me down, but it does. I am feeling like every aspect of my life has been infected with Pans and I don't know what to do about it. My work, my colleges classes, my finances, my house and my family are all suffering with it. It's not helpful to acknowledge that it could be worse-- I'm aware of that. Just wanting to wallow in my grumpiness for now I guess! I haven't been in this place emotionally since this started-- I've been certain to this point that we would figure it out and that she would get better. Now I'm not sure that I believe that any more, and it's a really depressing thought.

[MaryAW]

Perhaps your child does not have PANS or needs a different protocol. Are you working with an excellent PANS doctor? You can see PANDAS Network suggestions or search here on Latitudes for other doctors.

 

http://pandasnetwork.org/resources/providers/provider-list/

 

 

[BeeRae22]

Hi Maryaw, yes, we are seeing one of the doctors on the list. While I really like him, I can't say that's feel that he's been very aggressive with treatment. Or maybe I'm just growing impatient, I don't know. How often should meds be switched? In 4+ months, we've only tried 2 antibiotics, and herbal drops. I think I may post that as a topic now that I'm thinking about it!

[MaryAW]

It sounds like you need better guidance. What about vitamin D, fish oil, probiotics? You should post your protocol and your lack of progress and ask for suggestions. I would also post your location, so people can suggest some other doctors. Personally, if i was just starting my journey with PANS, I would seek out Dr. Murphy in Flordia or someone from her department. She is absolutely the most knowledgable doc out there as to what works. Taking care of you PANS child is a full time job. You are going to have to spend every spare minute you have researching this disorder, finding the right doctor, meds and supplements for your child.

[mommybee]

My child got better. Now 100%