Taking risks

[1tiredmama]

My son has an appt with a PANDAS specialist in a few months. In the meantime, I need to find out which, if any, of his current doctors will carry out a recommended maintenance treatment plan, if needed. From what I read, the PANDAS doctor in my area isn't very good with follow-up. I know I'll need someone else that I can go to if my son doesn't respond or becomes symptomatic again.

 

I have three choices: our pediatrician, his rheumatologist, or his neurologist. We saw one of them this week. I am grateful to this doctor for ordering lots of labs for me, including the specific ones I requested. And, I am happy that he isn't a "non-believer." But, here comes my rant...

 

Dr. #1 is willing to oversee abx treatment if called for, but not PEX or IGIV. We had a conversation about risks (along with the fact that autoimmune disorders run in the family.) I was nice when I explained my thoughts on risk, but I wanted to shout. I have a 17 year old child who hasn't attended most of three years of high school! If he were a working adult, he'd be considered disabled. He can't drive, work a part-time job, or socialize normally! He has been ill since early childhood, crippled during exacerbations by his symptoms. What kind of life is that??? I've been following doctors' orders for years, drugging my son to address symptoms, but never the cause! I've tried supplements, chiropractic care, prayer, organic foods, OT and PT, only to watch my son get worse and worse as he grows. I'm done playing it safe. I'm ready for a little risk.

 

Shoot, I've been risking it for years anyway! Each drug he takes comes with a risk. Every vaccine I allow is risky. Giving consent for anesthesia, scopes and biopsies is required in ink because of the risks involved! Raising a sometimes violent, sometimes suicidal child is risky for the whole family! You know what? I don't want to talk about risks at this stage of the game! Why pick and choose, now?

 

And, furthermore, I don't want to be judged for thinking outside the box, for doing my own research, and for wanting to try something a little risky. Safe providers, and some downright lazy ones, have done little to give my son the chance at an independent life. As things stand, my child will not be able to live any farther from me than an in-law suite! He won't be able to keep track of activities of daily living, drive, or support himself! Sorry, but I'm not ready to wave the white flag! It's time to up the ante here. He's 17!!!

 

Thank you for letting me get that off my chest. I feel better already!

Edited February 18, 2012 by 1tiredmama

[nicklemama]

You deserve to vent. Every point you made is very valid. I'd be tempted to make a copy, take in to a doctors visit and read it to the doctor.

[PowPow]

Hi 1tiredmama-

I do not know who your PANDAS doc is (or will be)- but I might have a guess

If they are not good with follow up- I have 2 pieces of advice for you:

1. make follow up appointments BEFORE you walk out of that office. Seriously. If the doc does not tell you specifically when to come back; ASK. If you still do not get a direct answer- make an appt for 4 weeks then 8 weeks out. Cancel if you do not need them.

2. Do not be afraid to call the office. Call more than once. Do not assume they are "working on" whatever is it they are supposed to be working on. Some of these offices sees dozens of sick, sick PANDAS kids- with only 2 staff members and also have a normal medical practice outside of PANDAS. I cannot even imagine how they keep up. They care, ALOT, about our kids, but there is only so many hours in the day to do all the stuff they do.

 

Your child sounds alot like mine. Though mine is 3 years younger than yours-- but just as disabled. Pex has been the most help. Dramatic improvement. sadly did not last.

 

I have not searched far & wide for pex outside out of the PANDAS specialist, but I do not think you will find more than 2 PANDAS specialists who do pex. Pex is done lots of places for lots of things, but not for PANDAS.

 

I so appreciate your rant. I think I have probably said the same things. It is terrible and I understand how you feel. I just wanted to offer the advice I have learned from our experience.

[Kiera]

Way to go 1tiredmama!!! You just get yourself to the right ivig Dr and persue all treatments you want to persue. Love your post. I usually have all those great thoughts AFTER leaving the Dr's office, but I'm going to go in armed next time! And you're right, there's no waving the white flag on this forum either! There are many avenues to try and us mama bears never give up!