Pandasmom's Blog

living with PANDAS, not the furry ones…

How do you get rid of excess hospital energy? May 29, 2010

Filed under: Uncategorized — pandasmom @ 12:02 am

After sitting in a hospital bed for 10 hours a preschooler has LOTS of energy.  Luckily preschoolers also have great imaginations.  A was so excited to be out of the bed yesterday and all she wanted to do was run and climb.  We found all the escalators in the hospital and rode each of them several times.  I had on a pedometer yesterday and noticed that we walked 2000 steps just on escalators alone.  Here is a picture of a happy A.

escalator 2

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Wondering Why? May 28, 2010

Filed under: Uncategorized — pandasmom @ 8:52 pm

18 months is a long time to go through all these ups and downs. Last night when I was faced with making the decision of whether to admit A to the hospital again or not I felt overwhelmed.  I felt that hospitalization is such a HUGE decision.  It is a huge undertaking and not one to be taken lightly.  I just sat in my car trying to take deep breaths and prayed for the ability to make the right decision.  Poor A didn’t ask to be put in this position.  A position where she ends up in the hospital for 2 days every 15 days.  Am I equipped to be making these decisions for her?

Of course this is not my decision alone, but I was by myself when I was having all these thoughts.  I was driving to meet John where we were able to talk about this. 

I am way past the “Woa is me” part of all of this.  I realize that everyone has a cross to bear in life and this is just our family’s cross.  But the part that I am truly stumped on still is wondering what we are supposed to be learning from this long, drawn out, non stable situation.  Just when it seems we might have a plan in place for all of this, we let our guard down for a second and then we get the wind knocked out of us.  Anyone else in this situation have advice for John and I on the lesson we are supposed to be learning?  For some reason I feel I would be less anxious if I had insight into that. 

 

Back to the hospital May 27, 2010

Filed under: Bad days,medical — pandasmom @ 9:55 pm

It has been 15 days since we left the hospital and here we are back in again.  During our last treatment, John and I watched in horror as our sweet girl seemed to disappear before our eyes.  We were so shocked at what seemed to be happening that we couldn’t bring ourselves to believe that she was actually getting worse while she was receiving the treatment. 

Everything about this disease is gradual.  Aside from the initial onset that is.  But the return of the symptoms and even the dissipation of the symptoms: both are gradual.  Enough so to make John and I think we are crazy for even questioning the state our daughter is in.  Is she healthy?  Is she sick?  Are we nuts? 

After a week of watching her get worse and worse, we had an appointment with our ped to attend. It was previously scheduled so the timing was good.  Our ped was shocked by A’s state and asked if we thought she could handle a blood draw.  The ped is well aware of how traumatic needles are for A so she didn’t take this request lightly.  I tried to gear my mind to getting blood results that said all of her titers and other numbers were normal and that this up and down business is just going to be our life.  However, I was really quite thrilled when the results came back that her DNASE-B was sky high.  In fact, it was the highest it has ever been. 

We had already started her on Augmentin and hadn’t seen an effect yet.  So our ped wanted to do steroids.  We are very hesitant to do steroids for A because we have seen a lot of side effects from them.  But, in this case, we didn’t feel we had a choice.  The steroids did have a slight impact on A but it was very short lived.  And back to the hospital we go…

 

Preschool graduation May 25, 2010

Filed under: Uncategorized — pandasmom @ 8:16 pm

Today was the last day of preschool for A.  I’ve been sad about this day for quite a while because I know how much A will miss school.  She thinks preschool is the best place in the world.  Each time I’ve thought about the end of preschool though, I only looked at it from A’s perspective.  I never spent any time thinking how I might feel.

Today’s pickup was extremely emotional for me.  I was shocked at my response!  The teachers gave the children photo books of themselves throughout the year.  The pictures were beautiful and simple candid shots of preschool life.  Looking at the pictures was extremely painful for me though.  In at least 75% of the pictures, A either has puffy cheeks from taking steroids or she has her IV line still in her hand from having just been discharged from the hospital.  She still looks so happy in all of the pictures though! 

And just like at the beginning of the year, all the parents were teary.  But I was teary for a different reason.  I certainly wasn’t teary because my child is a whole year older.  Who has time for that thought?  I was beyond emotional because preschool has been the one constant positive in our life over the last year.  A has looked forward to going to school each and every day.  She acts appropriate there.  The staff understands her and is caring towards her and she is simply free to be a child at preschool.  I think it is the one place I felt safe too.  And now it is over for the summer. 

Will next fall find John and I crying because we aren’t sure A can attend?  Or because we are sad that our child is a year older?  Wouldn’t it be wonderful to cry because she is a year older…

 

“You are breaking my heart” May 21, 2010

Filed under: Bad days — pandasmom @ 10:39 pm

Our life is very routine because that is what works best for A.  Fridays are usually our most fun days because we get to all be together and have a lot of fun.  Usually after art class we go over to the open play class for the girls.  The same children are there every week and the children have their own routine.  A is having an extremely hard time right now and was showing a lof of inflexibility.  Most of the parents have watched us go through this horror show and are somewhat aware of what is going on.  We’ve done well to hide things and reduce our public image over the past several months so our issues might have been forgotten a bit. 

However, A was quite hyped up this afternoon.  There was also a boy there who only comes about once a month and he changes the dynamic when he is there.  These 2 things made for a bad situation for us today.  After about 90 seconds, I knew we had made a bad choice in going to the open play.  I quickly warned the girls that we would be leaving soon.  Somehow a clique seemed to form and A felt alienated.  She started howling “You are breaking my heart” to her 2 friends.  It was heartbreaking to me.  How can a 4 year old say such things?

A was unable to move except to cry.  Luckily when I told her I was going to help her she accepted it. Usually this will amp her up even further.  But she let me pick her up and carry her out to the lobby this afternoon. 

I felt very alone during all of this.  All of us parents have been attending this play gym since the children were born 4 years ago.  I certainly don’t expect them to solve my problem, but when my child is screaming “You are breaking my heart” to their child, I would expect them to at least hang up the phone!  I was shocked and saddened.

 

I don’t understand strep May 16, 2010

Filed under: Uncategorized — pandasmom @ 3:04 pm

Until last year, I thought strep was really just a step above a cold in the realm of sicknesses.  Today, I think it is a seemingly benign sickness that is anything but!!!  The word strep strikes fear into me as much as diseases that the general population are terrified of. 

Has anyone heard about this story below?  It is from AOL News.

(May 14) — After his wife was seized by a rapidly advancing infection shortly after giving birth, a Texas man agreed to have her limbs amputated in a last-ditch effort to save her life.

On Feb. 10, 41-year-old Katy Hayes delivered a baby girl, Arielle, at the Kingwood, Texas, home where she lives with husband Al and their two other children.

"She was in a lot of pain after the birth," family friend Michele Dykstra told KIAH News. "It was a home birth, no drugs, eight hours of labor, almost a 10-pound baby. So a little pain is to be expected, but the pain kept getting worse and worse."

By Feb. 14, Valentine’s Day, it had gotten so bad that Al took his wife to Kingwood Medical Center. There, doctors confirmed a diagnosis of invasive group A streptococcal disease, a rare variant of the bacterial infection known as strep throat. But while the latter can be successfully treated with antibiotics, the type of infection Katy suffered from is far more dangerous and, if left to develop, much harder to treat.

Within hours of arriving at the hospital, Katy suffered massive organ failure; on Feb. 15, she lapsed into a coma.

"Her doctors told me that she had less than a 5 percent chance of surviving," Al told ABC News, "and that ‘nobody comes out of this,’ because once the snowball effect happens of organs shutting down, there is nothing medical science can do to reverse it."

The only hope of saving his wife’s life required a terrible decision: to authorize doctors to remove her uterus, where the infection had begun, as well as all four limbs.
There was no guarantee the drastic measure would work, but it was the only choice Al felt he really had. So, he pushed ahead.

"I decided that I loved her so much that the risk was worth it," he told WFAA News. "That if we came out and I had to spend a lifetime taking care of her that the risk was worth it, to not say that I gave up on her."

In the end, doctors were also forced to remove Katy’s ovaries, as well as portions of her colon and stomach.
On Feb. 24 she was airlifted to Parkland Hospital in Dallas, where a special burn unit could help tend to her skin, which had also been ravaged by the infection.

Spending virtually every moment at the hospital as his wife underwent a seemingly never-ending series of follow-up operations, Al started a blog called Katy Is Strong to keep friends and family updated.

"I hope that everyone will understand why I did this," Hayes wrote on the blog on Feb. 27. "I hope Katy will forgive me. I hope that I can forgive myself."

Katy’s condition experienced ups and downs, all of which Hayes chronicled on his blog. Eventually, on March 12 she regained consciousness. The last thing she could remember was giving birth.
"My baby doesn’t know me yet," she told her husband.

"That’s why we’re fighting," Al responded, according to the Houston Chronicle.

As Al tends to his wife’s daily needs in Dallas, Dykstra is caring for Arielle while Betta Phelps, Al’s sister, helps with the couple’s other children, Amber, 16, and Jake, 6, at the Hayes home.

With luck, Katy will continue on her path to recovery, and her doctors say she should eventually be able to be fitted with prosthetic limbs.
Before the illness and its myriad surgeries, Katy was a self-employed massage therapist. Al works as a freelance music teacher, but neither has health insurance. Through his blog, Al has reached out to strangers for financial help.

Fundraising events have helped raise money to pay for the daunting medical bills, and the pop band Maroon 5, who heard about Katy’s story, donated a guitar and $2,000.

"The community has really stepped up, really come together," Phelps told KIAH News.

As to the question of whether Al Hayes made the right decision, his wife has an answer.

"I’m so grateful. I wouldn’t be here for my kids, you know, if they hadn’t taken the arms and legs," a tearful Katy told WFAA News, adding, "I’ve got three beautiful children, so I’m doing good."

 

An ask to my readers May 15, 2010

Filed under: medical — pandasmom @ 2:03 pm

It has been a full year now since we came upon a true diagnosis for A.  We’ve been dealing with her symptoms since she was 9 months old, but have only had a diagnosis since about May, June and July of last year.  There is only one test available at this time to provide a definitive answer to whether a child has PANDAS or not.  The test is being done at a research facility at the University of Oklahoma.  We worked with this group last summer and they were kind, efficient and helpful in a time of desperation for our family.

It appears that PEPSI is donating money to worthy causes each month.  I would love to ask you all if you could take a look at this page and vote for PANDAS.  There appear to be over 1000 causes up for competition. I’d love your vote for PANDAS but you might also find another cause that is near and dear to your heart.  The voting closes at the end of this month.

Here is an excerpt of the research being done by the group that will receive the funding if they win: Dr. Cunningham is a research director at the Univ. of Oklahoma. She has been tirelessly researching the autoimmune process involved in PANDAS. She is on the verge of a medical breakthrough, which will help 1000’s of children suffering with tics, ocd, etc. receive the proper diagnosis and treatment.

And here is the link to vote: http://www.refresheverything.com/PANDAS

Please let me know if you have any questions!  Thank you so much!