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Tag Archive: The Cleveland Clinic

Apr 25 2013

Hello @ClevelandClinic, we’re here for a swallow study

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Cleveland Clinic, Lizze

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April 25, 2013

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We have finally arrived at our second to last appointment for this week.  Very early in the morning we will get up and make our way to the Cleveland Clinic’s main campus.

This particular appointment is Lizze’s once again and is with radiology.  She will be having a swallow study done to find the reason why she so often chokes while eating. 

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They explained that her esophagus is really pretty narrow and likely the reason for her choking so often. 
They will be doing a barium swallow study to observe the process and better understand if there is a biomechanical problem taking place when she tries to swallow.

On the way home, we have to devert to the Cleveland Clinic’s Brunswick location to pick up Lizze’s special knee brace, before finding our way back home.

After these two appointments, we will finally be done for the week.   Not a moment to on soon because I’m so incredibly tired of driving and I’m completely exhausted. Lizze is having a rough time keeping up with this week.  She’s burnt out right  now and needs her rest.


This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-)

Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-)

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Apr 24 2013

WTF…… Seriously? Are you friggin kidding me?

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Autism, Cleveland Clinic, Lizze

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April 24, 2013

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OMG, today have been a trying day. 

As you know, Lizze had her appointment with Orthopedics at the Cleveland Clinic this afternoon.  She’s been having problems with her knees for many years, steaming from a major injury during years as a gymnast. 

We are in desperate need of a break from bad news. 

It’s kinda like bad news and good news are divorced parents that can’t seem to ever come to terms with anything.  They completely ignore the visitation schedule that states that we want to see the good news along with the bad.

Unfortunately, that’s not what happens in our lives. 

So here’s what went down today. I swear I couldn’t make this shit up if I tried. :-(

This morning, Lizze got another email from her new OB/GYN at Cleveland, informing her that her vitamin D levels are dangerously low.  She’s at a 15 and from what I’ve read, a healthy level is anywhere from 30-110. She has to go back on prescription strength vitamin D. 

While we were on the way to Lizze’s appointment, I got an email from babble.com telling me that my Facebook page is in the top 30 of Autism related Facebook pages.  I was pretty excited as I’ve been trying really hard to improve the Lost and Tired fan page.

I was feeling pretty good as we arrived at the Cleveland Clinic today.
The whole vitamin D thing with Lizze can be corrected and I just won an award. 

Before I can walk in the door of the hospital, I get another email from babble.com, retracting the previous email as it was a mistake. Man,  that sucks but life moves on and today was about Lizze and not me. 

Lizze had her xrays done and we got back to see her new doctor quickly.  The doctor said that the film looked pretty good and only showed very minor signs of arthritis.  Hell yeah!

Finally, some good news. 

I was totally afraid that she was going to need surgery. She was diagnosed with something called J band syndrome. While this is very painful, it can be worked on in physical therapy. 

Did I say hell yeah already?

We arrive to my parents house to pick up the boys and head home.  The moment Emmett gets into the car and for about the next 45 minutes,  he literally screamed and screamed and screamed.  He did eventually stop but only to become super hyper and has been bouncing off of everything in sight.  :-(

After we finished dinner and had sorta come down from the almost hour of screaming, I get a phone call……

It’s Lizze’s new orthopedist. She is personally calling because after reviewing her xrays a second time, she found something wrong with the tip of her femur.  It’s something to do with a divit and cartilage honestly, as soon as I realized it was bad news, my brain just shut down.

In 5 minutes we went from everything is okay to needing an MRI and possible surgery…. 

Fucking shit……….. Goddammit… Son of a bitch.


This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-)

Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-)

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Apr 24 2013

When the light at the end of the tunnel is a train

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Autism

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April 24, 2013

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I’ve been absent today, at least as far as blogging is concerned. The truth is that we have had the today end on a really bad note.

This afternoon while I was at speech and OT with the boys, Lizze got some very disturbing/concerning news.  Her new OB/GYN at the Cleveland Clinic sent her an email with some lab results from Mondays blood work….

The was told to contact the clinic and make an appointment for two weeks from now and they would explain further.
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Late this afternoon we got a call back from the doctors office.  They wanted to explain in further detail what was going on and what the lab results mean. I’ll do my best to explain this to you but please keep in mind that I’m still trying to wrap my brain around this myself.

Here’s what we know so far.

Luteinizing hormone is the focus of everything at the moment. Follow the link for a explanation of the function of this hormone. Basically, it regulates the menstrual and ovulation cycles.

During the reproductive years, typical levels are between 1-20 IU/L.  After menopause the levels will rise above 20 IU/L.

Lizze’s LH levels are 64 IU/L.
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The nurse that Lizze spoke to this afternoon said that she’s definitely in menopause and that with numbers that high, her ovaries are either missing (as in removed during her hysterectomy, which they weren’t supposed to be) or they have completely shut down.

Lizze is completely devastated and neither one of us know what to think at this point. 

If her ovaries are indeed missing, they were removed against her will during her hysterectomy.  We signed papers specifically saying that they would not be removed. With her old doctor still refusing to turn over any records things are looking very, very suspicious. 

Lizze was told today that this is not normal at all, for a woman that still had her ovaries. 

It should be said that it is possible that her ovaries simply shut down after the surgery. However, from what we’re being told, that’s not common.

At this point, Lizze and I are are experiencing a wide rage of emotions. Among those feelings are fear, anger, concern and worry. If her ovaries are indeed missing you can add betrayal and feeling violated to the list as well.

Right now, Lizze will return to the Cleveland Clinic in two weeks for  follow up lab work and to discuss what we are going to do.

Please say a prayer for Lizze that we can get everything figured out and that regardless of the reasons she’s entered menopause almost 2 decades early, we can find away to provide her some relief, without entangling her life. 

It’s important to remember that because of Lizze’s history of blood clots, she can’t safely receive hormone replacement therapy…

I have no idea what we are going to do or what this will mean for Lizze’s future, or even her present for that matter. She’s really upset, scared and panicked. 


This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-)

Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-)

For more ways to help the Lost and Tired family, please visit Help the Lost and Tired Family.



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Apr 22 2013

Our search for answers at the @ClevelandClinic

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Cleveland Clinic, Lizze

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April 22, 2013

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Today is the first of many appointments for this week.  In many ways, this is likely the most important one of the week as well.

Shortly we will be heading to the Cleveland Clinic. 

Lizze will be visiting a new OB/GYN to find out for sure if she’s entering early menopause and if not, what’s causing all the identical symptoms.

The Cleveland Clinic has one of the top OB/GYN clinics in the country, so I’m confident that we can finally get a handle on what’s going on. If she is indeed going through early menopause (which is something prominent in her family), that could explain much of what she’s been suffering from. 

I realize it’s probably bad luck but to say this now but I think we may finally get some long sought after answers.

Please keep Lizze in your thoughts today.  She’s really   nervous but anxious for an end to all the hot flashes.


This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-)

Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-)

For more ways to help the Lost and Tired family, please visit Help the Lost and Tired Family.

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Apr 15 2013

Operation Hope: Enter the Alpha Blockers

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Operation Hope

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April 15, 2013

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I just got off the phone with the Cleveland Clinic and it’s been decided that the best course of action, at least for Gavin’s elevated heart rate is to begin using alpha  blockers. The goal being to lower his resting heart rate out of the 130′s.

They reiterated that Gavin is dealing with an adult diagnosis and that very little is known about this on the pediatric side. 

Everything we are doing is basically guesswork, educated guesswork but guesswork nonetheless. 

This is a very complex situation and unfortunately, all we are able to do is chase the symptoms because there is no way to fix his brain (from an Autonomic standpoint). That’s incredibly frustrating to know that all we can do is address his symptoms. 

Right now, I’m feeling so overwhelmed that I can’t seem to focus on anything.  I’m extremely worried about Gavin and yet my hands are tied and I feel helpless to do anything, especially from a distance.

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My instinct is to get him back to the cardiologist for a check up.  He’s due anyways but this really isn’t a cardiac issue.  I mean part of it is, but it’s secondary to the autonomic dysfunction. That just means that while his heart is beating too fast, it’s not because of there being something wrong with his heart. 

Having said that, Gavin has been having chest pain for years and tests always come back that he’s fine. 

However, he’s not been back to the cardiologist since the autonomic stuff began last year.  It would be comforting to know that everything is still okay with his heart. 

He’s supposed to have an echo done every year around his birthday because on his biological fathers side of the family, there is a history of aortic ruptures at a very young age.  Gavin has never shown anything to be wrong, physically but is always dealing with chest pain. 

It’s time for a follow up.

After we begin the alpha blockers, we are supposed to check back in at the two week mark and let the Cleveland Clinic know what’s going on.

Hopefully, the new meds will help………


This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-)

Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-)

For more ways to help the Lost and Tired family, please visit Help the Lost and Tired Family.

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Mar 14 2013

At the Strongsville branch of the @ClevelandClinic 🙂

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Cleveland Clinic, Lizze

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March 14, 2013

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We are at the Strongsville branch of the Cleveland Clinic to see Lizze’s new Gastrointerologist.  Her current gastrointerologist retired and so it made sense to make the move and keep everything all in one place. 

The Cleveland Clinic is amazing.  We weren’t in there long enough to really even sit down before they brought us back. 

I mean, I have waited in line at McDonald’s longer than it took her to be seen by her new doctor.  :-)

Huge plus to the Cleveland Clinic for running like a friggin well oiled machine.  :-)

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This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-)

Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-)

For more ways to help the Lost and Tired family, please visit Help the Lost and Tired Family.



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Permanent link to this article: http://lostandtired.com/2013/03/14/at-the-strongsville-branch-of-the-clevelandclinic/

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