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A new change in direction – prolonged qt

I have wanted to start this blog for 3 reasons.  First is to document my daughter’s life through journaling.  Second, is the hope that others in similar situations will be able to give information to help my daughter as she takes this journey in life.  Third, is that my daughter’s story will be able to help others.  I also hope that one day she will also be able to add her own perspective to this blog also.

I wanted to start this blog a while ago.  I started with giving the story of how my daughter’s life began.  It was a busy first year and is a little hard to do because I have to think back and recall all that went on.  I went to a blog conference recently and was discussing this blog with another fellow blogger.  She suggested to make the beginning story of her life a separate page on the blog and just begin writing about life right now on the home page.  I don’t know why I never thought of that.  So, the beginning years will be on a separate page on this blog and I will add to it as I feel I can go back to that part of her life.  It is also very timely that this fellow blogger gave me the suggestion when she did.

Back in January of this year Sassy passed out.  It was early in the morning.  We had just all started to awake and head downstairs for breakfast.  Sassy was grumpy, which tends to be the norm in the morning.  She was walking around whining and crying as I tried to start to get breakfast.

She kept complaining that she didn’t feel good, which also was a normal occurrence.  She walked in the kitchen and then fell to the floor.  The first thing that went through my head was, “that fall seemed quite graceful”.  Then I thought, ” I wonder if she is acting like her older brother who frequently pretends to fall hoping to get our attention”.  I went over to her and rolled her over only to discover a limp child with blue lips.

I begin to yell and shake her, trying to see if I can arouse her and then I yelled to my oldest son to call 911.  She began to awaken only to pass out and become blue again.  At this point, my husband is running down the stairs to see what all the ruckus is about.  My son hands the phone to my husband as the receiver is now ringing in our attempt to reach emergency personnel.  My daughter begins to come around and my husband without thinking hangs up the phone.

My daughter is now awake, walking around again telling us that she doesn’t need to go to the doctor.  Then the phone begins to ring.  It is 911 calling back to make sure things are alright since the call had been disconnected.  I let them know we were fine and would be driving my daughter to the hospital to be checked out.

I tried to explain to my daughter that she needed to be seen by a doctor.  I tried to tell her by saying, “something in your body isn’t working right and your body is trying to tell us the doctor needs to see what is wrong”.  By this time, my body has been pumped with an adrenaline rush and I am feeling shaky.  I always get shaky after a burst of adrenaline.  I recall feeling this way after giving birth to each of my children.

So we go to the local emergency room and they check her out.  My first thought was it was diabetes.  This is a common occurrence in girls with Tuner Syndrome.  I figured with her just waking up and not having anything to eat yet, it must be diabetes.  I  now start to mentally convince myself that this must be the cause.  I can deal with that because the other causes are a place my mind doesn’t want to go yet.

So at the ER they do the usual examination you get from any doctor – check your heart with a stethoscope, have you breath, etc. They also prick Sassy’s finger to check the glucose level in her blood and an EKG.  We see the doctor and give him all of Sassy’s medical history, the meds she takes etc.  He says that he wants to consult with a pediatric doctor at Primary Children’s Hospital.

After some time passes, the doc is back to tell us we need to follow up with a neurologist up at Primary Children’s and everything else looks fine.  So we leave with plans on getting a neurology appointment.  We decide to go to the store and buy Sassy one of her favorite treats – a maple doughnut.  She hates going to the doctor but we can usually bribe her and get her to do it without much of a fuss.  Life continues on.

We eventually get a appointment with a neurologist and meet with him to explain what happened.  We inform him that the hospital we went to performed an EKG but everything was fine.  So the neurologist  decides to take a look at the test performed at the other hospital.  The doc comes back and informs us the test was not completely fine and tells us he wants to have a cardiologist take a look at it.  He also gives us an order to get an EEG done.  So we head down to get the EEG scheduled.  We set up an appointment for a sedated EEG because there is no way Sassy would let them do that to her, let alone be able to sit through the whole 1 hour test.

We decide to focus on the EEG and get that done and kind of put the EKG and cardiologist on the back burner.  However, since the EEG is a sedated test, Sassy has to be healthy to have the test.  We had to keep rescheduling the test because she gets bronchitis all the time between Sept. and May, and it takes her forever to get over.  Several months later we also finally get around to doing the EKG.  The neurologist gets the results and tells us we need to see a cardiologist because the test was abnormal.

So now we see a cardiologist, where this time they do another EKG along with an echocardiography.  We meet with the cardiologist immediately after these test are done.  She tells us Sassy has an enlarged aorta and a prolonged qt – both things that can occur in girls with Turner Syndrome.  We are told that there are a few medicines we should work to change that Sassy takes.  She takes an ADHD med, an anxiety med, and an inhaled med for her reactive airway issues from having RVS when she was one month old.  All these meds can contribute to the prolonged qt issue.

She also tells us they want to do a 24 hour EKG.  So they send Sassy home hooked up to a 24 hour small and portable little thing that we are suppose to leave on for 24 hours and then ship it back to the doctor’s office in a prepaid UPS envelope.

It did take some coaxing to get Sassy to wear the little EKG thing.  There was crying and there was a lot of use of the word NO.  However,  after telling her how cool it was and that she could pick a treat out at the store after she is done wearing it, she’s OK with the whole thing.

So we do the test.  Sassy keeps lifting up her shirt to show everyone how cool her “little back pack” is that she gets to wear.  She still has no idea that it isn’t really appropriate for girls to be lifting up their shirts to everyone.  We finish the whole 24 hours and send off the stuff to the doctor in the mail.

We now are finally able to get the EEG done too.  It is now May and Sassy has not been sick for several weeks.  We do the test and Sassy does well.  They are able to get her to sleep and she stayed asleep for the whole test.  Now we have to play the wait game for the results.

Shortly after that, I get a call from the cardiologist’s physicians assistant.  She begins to tell me the results of the 24 hour test.  I grab a paper and begin to take notes.  I have learned to take notes because I will forget all of what they tell me after I get off the phone.  So she tells me the prolonged qt is longer than expected in turner’s girls and we need to get Sassy off her meds as soon as possible or her meds could kill her.  Not something you want to hear!

My mind immediately goes back to what Sassy was like off meds and I think of how she will have to be off them for the rest of her life.  This is not a pretty picture.  She was finally able to potty train at age 4 thanks to her ADHD meds.  She was also finally able to sleep at age 5 thanks to the anxiety meds.  Before that, she was only sleeping 5-6 hours a night.  Off meds she could be out of control.  I relate it to being like a pinball in a pinball machine, just bouncing all over the place and unable to learn anything.  She also at times can seem like a wild animal.  Completely out of control and when you speak to her it doesn’t compute.  She just laughs at you and continues to run around.

I try to focus on what the PA is telling me but it is hard.  She tells me there are no medications to change to.  All the ADHD meds have issues with the prolonged qt and we just have to deal with her behaviorally.  My heart is now crushed.  I don’t like what I am picturing in my mind as Sassy’s future.  Would she be able to learn?  At her age now, we still are struggling with the alphabet and numbers.  Am I ever going to get any sleep?  Will Sassy begin to do the whole 5-6 ours of sleep again each night?  While crying, I now go to tell my husband the news.

We have no choice.  Sassy has to be off her meds.

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2 comments to A new change in direction – prolonged qt

  • Sonya Peterson

    laura,
    I read your cooking blog everyday, so when I read you were starting a new one I was curious. My daughter Callie was born with several heart issues. She has had 2 heart surgeries and continues to see a cardiologist at primarys. I cannot completely understand what you are going through with Turner Syndrome and ADHD, but I do understand that most kids do not have one birth defect. My daughter has a few other issues as well as her heart. I am a member to a Support Group for kids with Congenital hear defects. Many of them have similar issues that both our daughters have. If you would like more information about this group you can email me and I would be glad to share their information (petefamily1@msn.com) I am sorry for what you are going through. I pray that things work out for your family and daughter in the way that you want.
    Sonya Peterson

  • Carrie

    Laura,

    My heart bleeds for you. My thoughts and prayers are with you and your family. I have enjoyed your site for so long, I feel like I know you and your family :)

    I know you have researched everything extensively on ADHD and Turners Syndrome. My husband has Celiac Diease and his only treatment is a gluten free diet, and I know alot of other kids who have ADHD benefit from the same diet. And since we already know you have a love of cooking and your daughter can not take medication to help with her sypmtoms, I didn’t know if a Gluten free diet could help. This is a GF blog that I like to visit alot and it also addresses ADHD kids and their concerns.

    http://welcomingkitchen.blogspot.com/

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