All I Want To Do...

[MMWG]

is stay home and take care of my little guy. We are homeschooling him now, so I am already home more than normal. But here it is, 6 am, and I have not given thought one to work. I just want to stay here and make sure he is okay, and wrack my brain for the millionth time to see if there is anything else that we could do to get him out of this exacerbation. Nobody gets it. I don't like knowing more than doctors. I don't like having to explain my child to people. We are having company this week (relatives) and it is the last thing I want.

 

I just feel like if I work hard enough at this, I can find the thing that will help him. For so long, I've been trying to figure it out. When he was little, we thought he just needed a regular nap. When he got a bit older, we thought it was sensory sensitivity. It was always a mystery why he was so intense and why certain days or weeks he was so agitated and others he was not. Still is a bit of a mystery, even with our pandas diagnosis. I don't know whether our last episode was stress induced or bacteria induced. I don't know anything.

 

And I see these other parents in back to school bliss, signing up kids for soccer, not thinking twice about whether their kid could handle certain things or whether certain environments would make them sick...i think probably i should talk to someone to deal with how sad all this makes me, for him and for us...but you know what? then i would end up explaining it to a psychologist--this is what happened with my psychiatrist. we spent most of the time with me answering her questions about his condition. The only thing that would help me is finding someone who could help him.

[dcmom]

I am sorry for what you are going through. You are not alone. When my kids go into exacerbation, it is very sad. But- you will get your son back. Do you see a pandas doc? What has helped his episodes in the past?

 

I will tell you, I have two girls with pandas. They were diagnosed 2.5 years ago, and have had several episodes each. It stinks. But, I have to say, we have focused on maintaining their quality of life (with some minor modifications) and they do well. They both go to public school. I don't go bananas with hand sanitizer and hand washing (well, they present with ocd, so that would be a mistake on so many levels). They participate in extra curriculars, do all of their homework, excel in school and have tons of friends.

 

For them:

 

we do CBT/ ERP therapy

we encourage social life- but we do not over book

early bedtimes and healthy lifestyle

we work on having them accept they have an illness, and have to take care of it, like MANY other kids

 

For me:

 

I work on accepting that my kids have an illness, that I have to make some modifications (mostly to avoid having them get run down/ and to avoid accomodating ocd)

try to enjoy life with them every day

work on having a game plan in place for future episodes

 

You are in a tough spot now, but your son will get better, and he will blossom....

[airial95]

We handle things similarly to dcmom. We try to keep a healthy lifestyle, while not trying to go too overboard on hand washing/sanitizing etc...so as not to create an OCD monster. We also try to encourage as much of a normal social life as possible. Birthday parties, outings, etc. Does everything always go to plan? No, not at all. Are we more careful? yes always. Our close friends are aware of what is going on, and have often cancelled outings with us at the last minute because one of their kids is sick, has strep (but is already on abx), etc. They always notify us and give us the choice to participate or not. They are also very understanding if we back out of something at the last minute.

[LNN]

DCmom is right. Accepting the illness, letting go of the expectations to be "like everyone else" (tho they also have problems - you just can't see them), finding joy in small things...all very important to your family's emotional health. That doesn't mean you accept things you can change, and many of the medical symptoms can be managed or eliminated. But it means accepting where you are in the journey and finding gifts, not just sadness. For all the soccer games lost, there are snuggles on the couch that can be cherished, for all the socks thrown aside because of their offending seams, there are lines of communication built (and ERP tools practiced) after the tantrum that can last a lifetime. It may seem impossible to believe, but there are many gifts you can nurture through all this.

 

I have been exactly where you are now (aside from home schooling). It's a heavy load to carry. Because you mention things early behaviors that don't seem linked to full blown episodes, small "hints' if you will, you may want to step back a bit. A few years ago on this forum, we old timers were united in thinking all of our kids had this one disease called Pandas, one trigger - strep- and there was one magic key that would help them all. We collectively researched, some tried plasmapheresis and reported back, some tried IVIG, then repeated IVIGs, and reported back. Some kids got better and their parents are gone. Some of us are still here. Along the way, the group found other things beside strep that were making some kids sick: mycoplasma, lyme/tick borne illnesses, candida/yeast, mold, mineral or vitamin deficiencies (zinc/copper, B vitamins, D). Sometimes there was passionate and even hurtful debate. Sometimes there were "AHA" moments for some parents and they proceeded to find the missing piece for their kids. I know you were around for part of all this. What we have now is a forum with less clarity, a humble understanding that PITANDS/PANS is much more complicated and less homogenous than we once thought.

 

Multiple causes of similar symptoms means multiple treatment options that will be better for some kids than other, depending on their unique issues. And unfortunately, it leaves a lot of parents feeling very adrift. Few doctors who look at more than once slice of the pie, conflicting advice from other parents and all you want to do is make your child better so he can have the childhood you always dreamed he'd have. From a medical perspective, I'd suggest you research the laundry list above and see if the symptoms associated with the illnesses strike a chord. There are blood tests you can do for all of them that may not be definitive but at least tell you whether it's a possibility.

 

From a management perspective, I second DCmom's advice on ERP - a huge help regardless of underlying cause. And from a sanity perspective, try to believe that there is no deadline, no point of no return where your son will be permanently damaged. My son has been at these for 3 years now, and each year he has taken steps forward. I was once firmly convinced he had Pandas. I know believe he has other things going on, some things like a zinc deficiency, since toddlerhood that contributed to other insults along the way. But he is so so much better. I was just telling DCmom privately that it's hard to remember the really dark days now (and they were very dark).

 

The bad memories fade. My son doesn't remember a lot of it. But we have a bond now and he has tools now that will stay with us for a lifetime. Cherish your son and be easy on yourself. Your love for him will carry you through and you will find answers. Along the way, just focus on the essentials of life and savor each hug and smile. Success will come.