7 years of PANDAS

[AmbersMommy]

Hi all,  I haven't posted here in a long time.  Maybe a year or so.  Not sure exactly.  My daughter has had PANDAS since she was 6.  She is now 13.  Our life sucks.  I don't get to sleep at night.  She gets up at night all night.  Last night it was about 2:30 in the morning and she never went back to sleep.  She yells all the time.  She has very obsessive odd thoughts and the list of symptoms go on.  She has been diagnosed with an intellectual disability.  Who knows if it is part related to her PANDAS.  I surely don't.  I am tired.  I don't want to be her mother anymore.  I have no life left.  I can't work.  We went bankrupt.  We lost our house.  There is no end in sight.  We have tried antibiotics, IVIG, essential oils. You name it.  We have tried it with some success, but not nearly enough.  I have tried my best.  I am just so tired now.  I am seriously considering giving up our parental rights and handing her over to the state.  I would never have considered it before because I thought they wouldn't be able to help her.  The thing is I don't think we can help her either.  I just can't do this anymore.  Why am I posting this here?  Because I now think that there is a point when you have to say uncle.  I never in a million years would have imagined that there was.  I entertained the thought that I am a terrible parent.  You know what?  I am not.  I gave up everything for her, a career, a home, my life.  There is nothing more I can do or give.

 

 

[MomWithOCDSon]

Oh, Ambersmommy!  I am so sorry to hear what you've been through and continue to go through.  We went through a multi-year PANDAS journey of our own, and I had many, many days when I had your same thoughts.  It is so tough, and with these really treatment-resistant cases, the feelings of helplessness and isolation are nearly as devastating and debilitating as the disease itself.

I hear you on the destruction of your finances and the lifestyle you once had, too.  Are you alone in trying to handle all of this?  Do you have family or close friends or some sort of support system (a faith community)?  This forum helped me through a LOT over the years, but we are (mostly) distant and not physically there to hold your hand or rub your back or take your DD off your hands for a few hours to give you some respite.  Are there any charitable groups or local agencies that could take some of the weight off of your shoulders, if only for brief periods at a time?

I won't launch into "have you tried this" or "have you tried that" here, as I don't think that's what you want or need to hear.  You feel you've exhausted your resources, it sounds like, so all of my thoughts/suggestions are leaning toward replenishing yourself.  I want to tell you not to give up, that there is hope and there may yet be healing, but also that if you empty yourself with no opportunity for refilling or tagging someone else to substitute in for you now and again, that's an unsustainable system.  I'm just hoping there's something between surrendering your DD to the state or surrendering your life to terminal dysfunction.

Sending much light your way!

[ABdualPT]

Hi ambersmommy 

My heart goes out to you. You sound like such a strong, caring, amazing Mom. I hope that you can lean on your friends, family or community services like respite care to allow you time to sleep and take care of yourself.

A million positive thoughts and love to you. 

 

 

[PANS-mom]

I am so sorry of you and for your child having to go through this.

 

If my son stops taking the antibiotics (Zithromax) he gets sick again. See if  your daughter can stay on them long term and ask for tiny doses of clonidine to help her sleep through the night and help her anxiety. Also, Prozac has been very helpful too. 

I'm sorry you are at your wits end. No one will judge you if you need to get extra help. Also, being a PANDAS parent can cause PTSD in parents so don't feel bad if you need to get help too. I needed to go on Prozac myself to help manage the stress of it all. When you feel better, everything is better.

I am sending hugs and strength your way.

 

[tj21]

I too am so sorry to hear what you're going through and feeling.

Before we had the PANS dx, our son had one psych. hospitalization, then we ended up sending him at age 12 to a thx. boarding school out of state. (We reached an agreement for part of it w/the school district, and part of it through insurance, the rest was out-of-pocket. I realize how fortunate we were to have the means at the time, and good insurance though not anymore.) It about killed me to do it, but I too was so burnt out even with support that we couldn't sustain the chaos anymore (horrible tics, manic and psychotic-like episodes, broken glass, holes in the walls.) That said, he's been home for four years now undergoing PANS treatment (abx, IVIGs, etc. etc.) and doing better but no where near recovered, and may never be. I called the suicide prevention line 2 months ago, just feeling so trapped again.

You are okay to feel like, and consider,  asking someone else to 'take over.' Is it possible to find a crisis intervention team (most police departments have them), short term crisis treatment home near by, or an in-patient psych. facility? I sometimes call our crisis line just to talk, myself.  With the hospital we could visit every day to keep an eye on things and staff, and had even a short time to regroup at home.

Hugs and comfort to you.

[dasu]

You have a heartwrenching story.  I do understand the feeling of wanting to give up.  This torture goes on for years, it seems that most of the health care industry, insurers and even friends and family are fighting against appropriate care.  It seems there are few success stories.  I totally agree - you are not a failure as a parent.  You sound like you have poured all of yourself out into the bottom-less pit of PANDAS.   I hope that you can find some rest and comfort in this time and that your daughter can one day find recovery.

[bigmighty]

I am so sorry.  It sounds like you've already tried pretty much everything, but I have to ask - do anti-inflammatories help at all?  My son was helped tremendously by steroid taper.  Prior to that, he did much better on ibuprofen 3x daily.  Presently, he takes turmeric capsules 2x daily and that seems to keep most of the symptoms at bay.  I realize it's not a real solution to reduce inflammation rather than address the inciting problem.  But I suspect you'd take anything you can get at this point.  If you can get her to take ibuprofen either capsule liquid 3x daily for a few days or take the turmeric and see if she feels any better, maybe you all could get a small measure of relief.  Again, I am just so incredibly sorry.