DD Released from Hospital After Two Weeks

[NancyD]

Hi all,

 

My DD14 was finally released from the hospital this week. I would like to thank everyone who sent posts, PMs. emails, text messages, and phone calls during this very difficult time. It really helped to keep me going. Between the insurance, medical, and mental health care ineptness, red tape, broken systems, and endless road blocks, I could not imagine a worse nightmare for any child or parent to endure! It was truly a sad reflection on our healthcare system. My daughter has had some pretty bad PANDAS exacerbations over the past 11 years but this was truly the worst. I'm sure the stars were aligned to perfection -- saw-tooth healing from the last IVIG infusion, a series of viral and staph infections, her period, and normal teenage stress. I will spare you the gory details, but sufficed to say it was a life changing experience. Every possible system failed us...and here I thought Boston was supposed to be one of the top cities for medical and mental health care. The damage from this ordeal was horrific and it will take a long time before we can heal fully. If I only had one takeway nugget to share with you, it would be: Do whatever you possibly can to treat your child's PANDAS aggressively before s/he reaches puberty. You do not ever want to go through what I did!

 

Today was the first real day of normalcy since our ordeal began and I still feel pretty shell-shocked. I know it's just a matter of time before the dam breaks and the tears begin to flow...

 

Nancy

[memom]

Dear Nancy,

 

I am sorry to hear about your ordeal. Here's wishing you and your daughter a beginning healing.

 

Ellie

[NancyD]

The subhead was supposed to read...

 

If you aren't nuts when entering the system, surely you will be when exiting!

[Stephanie2]

So, in other words it's a self-perpetuating system!

 

I am sorry to hear about your horrific ordeal. I am feeling shell-shocked myself! I call it "PTSD in the midst of trauma" b/c it never really seems to end!

 

Anyway, both of my boys have had horrible pandas exacerbations in the past few months and my husband has been out of town the whole time. I ended up having to send one child to grandma's b/c they totally broke me. They are both doing better now, but you are never really out of the woods with this illness so I am trying to heal and not feel like the world is going to fall apart again at any moment! Such a hard disease...

 

Sending healing vibes your way!

Stephanie

 

The subhead was supposed to read...

 

If you aren't nuts when entering the system, surely you will be when exiting!

[kimballot]

Nancy - Thank you for sharing and for your advice. It was very good for me to read that and it put a fire under my butt to keep moving forward in getting this treated ASAP! Kudos to you and your daughter for survival. I hope you can all take some time to heal.

[Mary M]

Nancy,

 

I wish there were words to help... You are such an advocate for your daughter, for this awful disease, and for the rest of us. I will heed your warning as my dd is 12 and we are suffering such an extreme exacerbation at present. I am hopeful that you will have some time now to heal. Thank you for sharing your painful ordeal.

Mary

[Joan Pandas Mom]

Nancy, I'm sorry to hear you had to go through that ordeal. I agree with you completely, treat PANDAS aggressively before puberty. I went to Boston 6 1/2 years ago when this nightmare started and left with a diagnosis of guess what, OCD. I hope things continue to get better for you and your dd.

Joan

[wornoutmom]

Nancy:

 

we had to go that route with our son 2 years ago and I completely understand the intense emotions that you are experiencing. I really felt traumatized for a long time, and I can only imagine how he felt. My thoughts are with you and your daughter.

[melanie]

Nancy, I'm sorry to hear you had to go through that ordeal. I agree with you completely, treat PANDAS aggressively before puberty. I went to Boston 6 1/2 years ago when this nightmare started and left with a diagnosis of guess what, OCD. I hope things continue to get better for you and your dd.

Joan

 

 

I totally agree !!!!If there is something I can get out of this nightmare it would be to let moms and dads of younger kids know that you must aggressivly treat your children.Dont assume anyone even MDS will help you .Danny wasnt dxed untill 14.I always knew it was something but no name\

 

 

melanie

[forjpj]

I'm so glad you guys are home Nancy!! I hope you guys get a chance to catch your breath, and heal a little bit!!

A few years ago, my father with Alzheimer's was hospitalized for 6 weeks in a psyche ward, it was horrible!! The sweetest, most caring man in the world...an educator, a veteran, father of five, an all around person was given very little respect. I can't imagine going through something similar with your child!! It left a very bad taste in my mouth for the mental health community, and there resistance to treat the body as a whole. How did mental health become so separate? Our medical system is so unprepared for this rising trend in Alzheimer's, autism, pandas, or whatever else crosses that imaginary barrier between the mental and the medical communities. Oh gosh...this probably isn't making you feel any better!! Sorry...didn't mean to go off on something we all already know!!

 

Like I said, I'm so glad your home, and you can look to the future!! Let me know when you are scheduled! I think we are heading for IVIG now. We had a beautiful three weeks with our son to reconnect, and enjoy him without pandas. He went back to school, and there was strep in the classroom. So he went backwards ever so slightly. Dr. L switched his antibiotic, and if it doesn't help we will do IVIG in a month. We might be up there at the same time anyway!!

Good luck, Sarah

[momto2pandas]

Nancy, so sorry for you and your daughter that you've had such a rough ride of it. The stories of teenagers always break my heart the most, because those are the ones that I identify with. I know that some say that PANDAS gets better at puberty, and it seems to for some of the boys I've known, but for me, puberty set off the worst and longest episode ever. I just wanted to say something about hospitalization, though - I was hospitalized several times for PANDAS (not recognized at first) as a teenager - a total of almost 2 years (some of the length was due to complications of anorexia nervosa) - and it doesn't have to be a bad thing. One of my hospitalizations, incidentally the one in Boston, was a nightmare. However, a couple of my other hospitalizations were terrific, safe healing experiences for mind and body and I made deep friendships with other people going through similar things, learned a lot of great coping skills, and emerged much better in many ways than I entered. I felt like I should add this because I don't want people to see hospitals just as "jails" that one ends up in when all else has failed. They can actually be places of great healing. It pays to choose well, though. The ones that wound up being bad were when I was just admitted to wherever my doctor had privileges. The good ones were places my family hand-picked because they were so good with mental health issues.