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So, coming out of the blue to say that Kevin (my nearly 8 yo son) is having a medical procedure Fri/Sat in an attempt to greatly help relieve his PANDAS.

Quick background notes:

"PANDAS is a pediatric autoimmune disorder characterized by the dramatic onset of neuropsychiatric symptoms such as obsessions, compulsions, motor or vocal tics. PANDAS is thought to be similar to Sydenham Chorea where there is dramatic symptom exacerbation following a strep infection (Kevin was diagnosed nearly 4 years ago and reacts to ANYTHING that upsets his immune system)

PANDAS is thought to be caused by the following sequence of events in this order:

  • The production by the immune system of an antibody that can interact with neuronal tissue
  • A failure of the immune system to suppress this antibody
  • A breach of the blood brain barrier such that the antibody reaches neuronal tissue
IVIG stands for Intravenous Immunoglobulin. Immunoglobulin antibodies, type G, are extracted from donated blood. These antibodies are transferred to the recipient through an intravenous line. IVIG is used in many auto-immune diseases but the exact nature of how it works is not known. IVIG is highly anti-inflammatory and may help T-regulatory cells become re-activated to help remove anti-host antibodies. In addition, some of the infused antibodies may help recognize infected cells or bacteria that was missed by the recipient's own antibodies.

Most of the studies and certainly parents on this forum report that IVIG and PEX are helpful in putting PANDAS in remission, but don't "cure" PANDAS. There are many reports of PANDAS symptoms returning after re-exposure to GABHS. This is why many parents use long term prophylactic antibiotics. It is also important to mention that some parents report that antibiotics used aggressively at initial onset of symptoms seem to put PANDAS in remission."


Kevin has been on prophylactic and acute care doses of antibiotics since he was diagnosed. They are helping less and less. Plus with him, he reacts to anything that upsets his immune system not just strep (GABHS). He just got a horrid virus back in July and has been in a bad bad flare since (urine/wetting obsession, grabbing his crotch and sniffing his fingers to check, seeing/smelling pee everywhere).

I will be with him both days. The IV itself isn't going to be that big of a deal, actually. I've had plenty of them and heplocks with all 3 kids, so I've been able to describe them in detail to him. I got a child's education kit with real IV bags and lines and stuff from the company that prepares the immunoglobulin, so today we went through all the steps and practiced. It will be at an out patient surgical center, so they will put a hep lock on the line and send him home overnight. He's looking forward to watching movies (they have portable dvd players...I'm going to introduce him to The Goonies!), playing UNO, reading books to himself and me reading to him (we're in the Lemony Snickett series now, playing games on his educational gaming system, writing Thank You cards for his and G's bday party (well, maybe not looking forward to that!), and listening to his iPod. I, on the other hand, have spent nearly two weeks with him nonstop at this point, and the idea of being in a little cubicle with him for 6 hours on 2 days in a row, entertaining him and dealing with his OCD, is making me twitchy. I will have my laptop, a book, and they said I can escape to Starbucks across the street (for a tea, i hate coffee) for an hour so and they will watch him.

I'm not worried about the procedure itself. I am getting very nervous about the weeks after the IVIG. A large percentage of kids, as the faulty antibodies die off and exit the system, experience what is called "a turning back of the pages." Or as the doctor calls it "a suicide period for the parents" where the kid goes and had a resurgence of all their old tics and obsessions and symptoms in a hardcore way. But then again, some people don't, some people have it at a lesser level. I will be taking him to the chiro a lot in the weeks after it, doing bentonite clay and activated charcoal and epsom salt baths, and lots of vitamins and flax oil and sleep and good nutrition to try to support his system during this reset.

I'm also terrified about him getting exposed to anything during the crucial weeks after it. School starts on Aug 28 for him. *cringe* I do have an excellent relationship with the school nurse and his 2nd grade teacher was handpicked for him and has had another PANDAS student, so I know that should be good, but I keep thinking about germs germs germs. *twitch* If he gets very sick, it could negate the whole thing.

I'm also dreading fighting the insurance company. They might pay 80% or they might pay nothing. And then we are out a HUGE chunk of money. Which I would pay in a heartbeat to make my son better, but still. We all know the fun phone calls and letters that await me.

And what if is one of the 5% in his age/duration of illness/symptom group who at 3 months does not have significant improvement and needs another round? My sister's condo still hasn't fucking sold, so we are still paying for that.

Anyway, please think thoughts of strength for me and thoughts of healing for him.
Hey, Chicago area folks, please pass the word around about my sister's condo.  That is how it will get sold in this economy.  Plus, if your tip leads to it being sold, I'll bake you my famous pumpkin cranberry bread!

*********************
My sister recently died, and I am selling her 2 bedroom condo in N. Riverside (intersection of 22nd and Des Plaines).  The building was totally rehabbed and converted to condos right before she bought it in April 2007.  Beautiful hardwood floors, granite countertop, neutral walls and trim, new appliances, new windows.  Laundry room in basement.

http://www.dgillian.illinoisproperty.com/remaxil/modules/agent/agent.asp?p=findahome.asp&selected=mls&listing=true&mlsnumber=7311038&mlsid=271

Selling price is $125,000.  Please contact our agent Dorothy Gillian at 708-386-1400 ext. 124 if you are interested.

Update on me.

Sorry I haven't been here. My emotional energy is at a low point by the time the kids get in bed and all I have brainspace for at that point is a sentence rarely posted to FB or a game of online boggle.

And then it boils down to, what can I say? It's the same stuff day after day. After three deaths in five years, there are few people who want to hear it anymore. Some people actually actively avoid me now because they feel so awkward--and I don't even talk about it with them in the first place, for crying out loud. And thanks to the Zoloft and Wellbutrin, I very rarely cry and am usually quite functional, so it's not like I'm weeping and frightening people.

And honestly. I don't even fucking know what to say. The Zoloft and Wellbutrin make this experience very different than Zach and my mom's death/grieving. I rarely cry, maybe once every 3 weeks. It's like part of my mind goes "this is just so fucking unbelievable, there is no way this really happened, i reject your reality and substitute my own." A vast part of my brain seems to be sticking its fingers in its ears going "la la la, she's not dead, can't hear you, la la la"...while at the same time being totally okay and allowing me to clean out her condo, do all the life insurance policy paperwork, file her will, put her condo on the market, etc. My brain has totally disassociated itself....just a big disconnect between the two sides. I don't know if it is strictly the meds or just survival mechanism after 3 deaths. And it's different than my mom because then I had only Kevin...and now I have Gabriel too. So I can't afford to lose my shit--Auntie Gail isn't here to pick up the slack. Pete and I are all the kids have, so I have to keep it together.

Anger drives me too. Anger at her. Anger at the total pit she let her condo become. Anger at her not filing for my mom's $15,000 life insurance policy or paying my mom's lawyer's final bill. Anger at her total disarray of paperwork so that I can't find the title to her car or several important bank statements. Anger that she didn't let me or Pete help her with her condo, with getting her phone line fixed, with doing the paperwork, etc. Anger that she didn't even ask. Anger that she didn't take care of herself physically. Anger that I found collection notices strewn in her paperwork and that I'm having to clean up those messes--and they were over bills that could have been straightened out and health insurance would have paid them after a simple 2 minute phone call, she had the money, dammit. Anger that now my boys have nothing and that Gabey is too little and he won't have memories of her. Anger that she left his whole mess for me to pick up. Anger that she didn't let me in to her heart. Anger that so many of my family's stories are now lost...gone....and I have so little to share with the boys.  Anger that we gave her a fresh start up here and she totally squandered it. Anger that she was so damned dysfunctional. Anger that Kevin has to go through yet another loss, another pain when not even 7 yet (Sept 11).

No one else will love my children like she did, in the same way I did. No one else wants to hear every piddling detail of their day, no matter how disgusting. At least 4 times I day I find myself thinking "Oh, I gotta call Gail and tell her that Gabey just....oh....shit. Can't." I still carry my house phone around with me in the evenings out of habit, and when I put it away to charge at bedtime, I'm reminded that it wasn't necessary, she won't be calling. I got into celebrity gossip after my mom died so I would have something to talk to Gail about that was light hearted--so now, every time I hear what the Gosselin's are doing or that Kendra Wilkinson is pregnant, my first instinct is to call...and I can't.

I'm still going through papers and stuff. And having to go through stuff of my mom's that Gail didn't go through back when we moved her and she said she would once she got her place. And seeing notes that Mom left for Gail, trying to help her organize things and make sure Gail would be set up if she died.

I just couldn't stomach having a third urn in the house, so I ordered a huge cloissonne urn with red maple leaves all over it and had the funeral home put Mom, Gail, and Zach together in there with a name plaque on a chain. The urn is in the dining room.

Dark humor gets us through it. God, Kevin is going to be so warped. The other day he looked at the urn in the dining room and commented that for the first time ever Grandma and Auntie would be on time for Thanksgiving dinner. *bwahahahaha* That's my boy. :-)

I got rid of my dining room set because it was too painful. We got that in 2000 when we bought this house and needed a table for our first Thanksgiving here. We thought, okay, we need a table that can seat 8--2 for us, 2 for our future kids, 2 seats for Mom and Gail, and 2 for Pete's parents. That never ever happened. I'm using some of the insurance money to redo the dining room and also buy a new set, so that by Thanksgiving it will be a new room, and we can try to start again.

I got my nose pierced and dyed my hair much more red--both things she would have hated and that I didn't do because of her. It's my childish way of getting revenge. :-)

Just gave her car away tonight to a friend who can make good use of it.  I just want the condo to sell and the paperwork to finish so I can try to remake my life again.  *sigh*

Sep. 10th, 2009

Thoughts of Liam, Helen, Bree and so many others whose lives are so ingrained with the attacks on 9/11/01.

Thoughts of my son Kevin's 7th birthday tomorrow (9/1/02).

Aug. 3rd, 2009

Hey, I've got a 3 day pass for Lollapalooza that I need to get rid of.  Things have changed since I bought the ticket and now I can really only go on Friday night.  I hope to sell the 3 day and buy a 1 day.  Let me know if you are interested in buying it from me--I'll make you a deal!
Sorry I haven't been back to post more information.  I just haven't had the energy/time/strength to write.  So, forgive me while I copy what someone else wrote for me on a board we belong to and I'll just add notes:

"Gail hadn't been feeling well for a few days and on Sunday (July 5th) went to urgent care and was diagnosed with pneumonia (and given antibiotics and an inhaler).  (On July 6th Pete, me and the kids went on vacation to MIchigan City, IN, about an hour and a half away.  Gail told us to go ahead and go, she had her meds and she couldn't be around us or the boys because she was contagious.  She was supposed to be coming over to our house once we left to cat sit.)  She continued to not feel well and ended up calling 911 (on the afternoon of July 8th) because she had passed out a few times (she called me on my cell at the farm we were at to tell me this...and that she it had taken her an hour to call 911 because she had crawled from her bathroom to the door of her condo unit so she could open it and yell up to the teenager upstairs to open the door to the condo building so that the paramedics wouldn't bust it down....and since she kept passing out it took an hour.  My cell phone coverage was awful and when the paramedics arrived they didn't know where they would take her.  I waited 45 minutes and then started calling around....it took me over an hour to find her.  She called me once from the ER to tell me she was doing okay and that they wanted to make sure she didn't have blood clots in her lungs like she had two years ago, but that they thought not.  She told me she'd probably be admitted and be there for several days, and then a nurse came in and she had to go.  We decided to feed, bathe, and put the kids to bed.  I kept waiting to hear from the ER while we were doing that, they didn't call, so I called them at 8:45 once the kids were asleep.  They told me she was having a procedure done and to call back in 20 minutes.) . In the ER, apparently her oxygen level was good, (the xray was good, the CAT scan came back fine and they decided to do a 3rd less common test where the patient inhales radioactive dye and it helps them to see oxygen flow. As they were doing this test, Gail passed away.  (When Steph called back twenty minutes later like they said)  a doctor spoke to her and literally out of the blue told Stephanie that as she was getting that oxygen test done, Gail died. No lead in, no hint in her voice that this was coming. How horrible!

Stephanie and Pete woke up Kevin and told him and packed up their car, woke up Gabe and drove home, arriving back at 2:30am that morning. Kevin, understandably, was upset about his Auntie Gail and also upset that their much planned vacation had changed.

Steph is overwhelmed obviously, by the sheer depth of losses that have occured in her life over the past few years and the fact that she did not want to have 3 urns lined up on a shelf in her house. The funeral director is going to mix the ashes of Zach, her mom and her sister (and put them all together in a big cloissone urn with maple leaves on it.

Gail had a 2 bedroom condo with an enormous amount of stuff in it- no boxes were unpacked from when she moved in 27 months ago and she also has been collecting all sorts of papers,coupons, etc, so there is a small path to walk through the entire apartment. Steph and Pete have to face cleaning out the condo and getting it on the market. They will work with the same realtor who helped them buy the apt for Gail. "

********

And then Gabe's second birthday was July 10th.

They found a massive blood clot in a major artery in her lungs.  Our doctor said that due to the size and location there was nothing they could have done to save her if they had noticed it even a few hours earlier.

I swear to God if my sister weren't already dead, I'd have to kill her (no matter how much I love her). Cleaning out the 27 months worth of every piece of paper/mail and cardboard food box she ever got her hands on plus every grocery shopping bag nearly killed me and my best friends (took two nights with 3 people working). It was a total pit over there with an 9 inch wide path winding through it--she never let me come over after she moved in.   Pete and I have spent hours on the phone tracking down bills and life insurance policies (finding out she never cashed my mom's life insurance policies or finished paying her lawyer).  We are sorting through billions of papers and bills and records trying to find what we need.  The only that has been easy is that right after my mom died my sister wrote a will, made me executor, and put me on all her bank accounts.

Those of you who know me, know that July (despite Gabey's bday) is a hard month for me.  Zach would have been 5 next Friday.

At this point my mind is so overloaded by all of this that I am firmly in the "this is too surreal, so I'm going to do all the stuff that has to be done, but my emotions are going to be locked away because this didn't happen" place.  Hurrah for the brain and it's self protective mechanisms.  Oh, and hurrah for Wellbutrin with a touch of Zoloft--I didn't have those when Zach and Mom died.   Everytime I make some silly limit for myself, life makes me push through that limit and explode that myth.  Can't go into a funeral home again, hah.  Can't touch another dead body, hah.  Can't explain the death of a close family member to my children again, hah.  Can't deal with the terrible twos and grief again, hah.  Can't spend another hour on the phone chasing down paper trails, explaining this over and over, hah.  My grief counselor and parenting counselor hardly know what to say.  I haven't gotten many sympathy cards, because there aren't any that say "Dear God, again???"  There is no one left in my family now.  And I'm only 36.

We did manage to pull off a good birthday for Gabey.  I'll try to post a pic.  And he and Kevin have a joint big party next week.  We've been trying to minimize the impact on the kids as much as possible.  But at least 10 times a day Gabey asks for "Auntie" and I don't know what to say other than "Yes, we miss her."  I haven't told him yet because I just don't even know what to say.  Kevin is doing mostly okay.  *sigh*  We're going to try to go on a short vacation next month to help the kids.

Me.  I'm here.  Putting one foot in front of the other, doing what needs to be done, swearing at the urn in the dining room a lot, and hitting a wall (metaphorically speaking) every once in a while.  I don't really have any other choice, now do I?  Bless our friends A&T (sorry, no brains for lj tags) for babysitting and helping with the physical mess.  Tons more to go--we haven't even gotten into her boxes yet.

I just don't know what to believe or think anymore.



My sister is dead.  I am on vacation. I can't take this.

K made me do it

1. Your Middle Name:
2. Age:
3. Single or Taken:
4. Favourite Movie:
5. Favourite Song or Album:
6. Favourite Band/Artist:
7. Dirty or Clean:
8. Tattoos and/or Piercings:
9. Do we know each other outside of LJ?
10. What's your philosophy on life?
11. Is the bottle half-full or half-empty?
12. Would you keep a secret from me if you thought it was in my best interest?
13. What is your favourite memory of us?
14. What is your favourite guilty pleasure?
15. Tell me one odd/interesting fact about you:
16. You can have three wishes (for yourself, so forget all the 'world peace etc' malarky) - what are they?
17. Can we get together and make a cake?
18. Which country is your spiritual home?
19. What is your big weakness?
20. Do you think I'm a good person?
21. What was your best/favourite subject at school?
22. Describe your accent
23. If you could change anything about me, would you?
24. What do you wear to sleep?
25. Trousers or skirts?
26. Cigarettes or alcohol?
27. If I only had one day to live, what would we do together? (If you have no idea, just say something crazy, it'll entertain me!)
28. Will you repost this so i can fill it out for you?
Random weird thought (yah, I know I never post but I'm trying to get back into by warming myself up over on Facebook):

Am I the only one who hates the phrase "screamed like a little girl?"  I know in some ways it is referring to a male shrieking and it being so high pitched that it sounds feminine.  But still...to me it wraps in connotations of someone being weak/a scaredy cat/etc...and links it with the concept of "girl."  I find it just as offensive as "pitches like a girl."  And I make sure I don't say it to my kids.

Pete said it today and I discussed it with him tonight.  He hadn't thought of it in that way.  I'm curious if I'm the only one who thinks of it in that way.

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gremlin44
Your little gremlin
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