Autism, Aspergers, Rob Gorski,Special Needs Parenting, Reactive Attachment Disorder, Fibromyalgia,

Tag Archive: Clinic

Dec 01 2012

The Leap of Faith: We’ve heard back from the @ClevelandClinic

PinterestLinkedInRedditShare/Bookmark

I wanted to share the information we received from the Cleveland Clinic‘s exclusive Pain Rehabilitation Program coordinator yesterday.

Lizze got the call yesterday afternoon.

Here is what we learned.

image

The soonest Lizze will get in to the program is going to be late January. There is a waiting list and they are requiring Lizze to have her sleep study -for apnea- and her follow up appointment with her sleep neurologist before she enters the program.

Her sleep study is this coming week and her follow up appointment is still a couple weeks out.

We also got a breakdown of expenses as well. This is the list of known expenses as of this point in time.

1) Cheapest Hotel is $70/night x 15 nights = $1,050.00.

2) Various textbooks will be about $50.

3) Food (breakfast, lunch and dinner) is out of pocket. Total expense unknown.

4) If commuting, fuel will run about $200+/week x 3 weeks = $600+.

5) Actual cost of the program itself is $10,000/week x 3 weeks = $30,000.

6) Miscellaneous expenses are unknown.

7) Several trips to the Cleveland Clinic for additional evaluations prior to knowing what insurance will agree to cover.

At this point in the game, we still don’t know what, if anything, insurance is going to cover. This has to be submitted first and then we will hear back with an answer.

I’m doing my best not to let this new information deter me from focusing my efforts, on making this happen.

I’m going to remain positive and continue to push forward.

Permanent link to this article: http://lostandtired.com/2012/12/01/the-leap-of-faith-weve-heard-back-from-the-clevelandclinic-2/

Nov 27 2012

Lizze is being admitted to the Cleveland Clinic for 3 weeks

PinterestLinkedInRedditShare/Bookmark

As you know, we spent yet another day at the Cleveland Clinic this afternoon. Lizze finally got in to see their award winning Headache Clinic.

Getting to this moment seems like it took forever and a day but we finally arrived.

We we’re in the appointment for maybe 15 minutes before the doctor stopped and said,”I think it’s best that we just skip to the chase.For the record, it’s not usually a good thing when you hear that from a doctor.

There are a ton of details but I’m going to cut to the chase as well.

Lizze is in bad shape. 

image

Basically, the medications that her local neurologist had her on have completely screwed her body up and we’re talking bigtime screwed her body up.

She should never have been on at least 4 of her medications, especially not at the same time and they are very likely the cause of her year long migraine.

Essentially, what has happened is that Lizze‘s body now interprets everything as pain.  The specialists are saying that her pain receptors have basically been rewritten by the combination of medications and the amount of time she’s been on them.

This is something that, as you know, I’ve been worried about for some time

I didn’t think about the whole pain receptors part but I have been concerned that the medications we’re a big problem.

This isn’t Lizze‘s fault at all. She’s doing what her doctor had been telling her to do. She never once abused anything and essentially trusted her doctor. I’m actually really, really angry about that and believe me, this will be something that I will be seeking advice on. However, that’s for another day.

The best and only option Lizze has is to go through their extremely intensive, chronic pain rehabilitation program.

This program will require a 3 week admission and a huge financial, emotional, physical and logistical commitment. We will learn more details about this program and said commitments in the morning because we have to return once again for her intake evaluation.

What we do know for sure is the program runs from 8am – 5pm Monday thru Friday for three consecutive weeks. 

She will safely be detoxed off the medications she’s currently on, so she can avoid any withdrawal symptoms. She will also receive physical and psychological rehabilitation as well. 

They are going to help he learn to take control of her pain without needing to be so heavily, perhaps even dangerously medicated.

She will have an entire team of top tier doctors looking after every aspect of her health.  Their only goal is to get Lizze her life back. Needless to say, that would be a miraculous event and one that would be a long time coming.

That’s about all we know at this point and this is where reality sorta bitchslaps us right in the kisser.

We have already agreed to this, as what other choice is there?  She needs this and I will make this happen for her. The problem right now is that I have no friggin idea how we will pull this off. 

The most likely scenario will be to simply commute.  The word simply is probably very misleading.  We will have to drive over 3 hours per day, during rush hour traffic at the cost of at least $200/wk in fuel. That doesn’t include meals. We don’t know food works yet. I would suspect that she would eat there because they are going to be likely adjusting her diet.

There’s one other small problem. 

We have 3 special needs kids, 2 of which are in crisis at the moment. Gavin with his everything and Elliott with his anxiety and current hunger strike, due to his new tree nut allergy and fear of eating now.

Lizze and I are barely and I do mean barely holding it together as it is.  How can we possibly take this on as well?

At the same time, how can we not take this on?

We’re only talking 3 weeks but I am willing to say, with relative certainty, that this will be the longest 3 weeks of our lives. Lizze is totally worth the effort.

I’ve already talked my parents and Lizze has spoken with hers.  I told my mom that we will need any and all help possible in order to get through this. My sister commutes to work in Cleveland everyday and may be able to help with some of the transportation, as she drives burgers Cleveland Clinic on her way work. 

That’s about it. 

I can’t remember the last time I was this stressed out.  Lizze is totally freaked out and the boys are completely overstimulated and Emmett is just beginning a new flare up and his mouth is filling up with painful sores.

God, I think you have seriously overestimated my abilities on this one.  I mean, I know I’ve said that before but holy crap, I’m in so far over my head at this point.

Permanent link to this article: http://lostandtired.com/2012/11/27/lizze-is-being-admitted-to-the-cleveland-clinic-for-3-weeks/

Nov 26 2012

Operation Hope: The 11 month old migraine

PinterestLinkedInRedditShare/Bookmark

This is a huge week for the Lost and Tired family. Lizze will be returning to the Cleveland Clinic on Thursday. This time she will be visiting their headache clinic.

We have both been waiting for this

image

appointment for many months now.

For those of you unfamiliar with what’s going on, Lizze has had a migraine for most of 2012. She’s literally had this migraine for almost 11 months now and it’s been horrible for her. 

The past few months have been the worst though. She is in so much pain that she’s getting sick all the time and can’t eat without getting nauseous.

Come hell or high water, I’m getting her to that appointment.

She deserves relief and I’ll do what I must to help her obtain that relief. Even if that means weekly trips to the Cleveland Clinic.

Permanent link to this article: http://lostandtired.com/2012/11/26/operation-hope-the-11-month-old-migraine/

Jul 11 2012

#Autism and Autonomic Testing: Arrived in one piece

PinterestLinkedInRedditShare/Bookmark

We just arrived to the Cleveland Clinic and have checked in. Gavin survived the car trip okay. Besides sleepy and pale,  he was fine.  Thank God for small favors.

The testing process is two parts and will last at least two hours.

Gavin ate breakfast but hasn’t had anything else because eating is was triggers the blood pressure crashes,  at least most of the time.  Needless to say,  he’s hungry and sleepy but in a good and hopefully,  cooperative mood.

I’ve got a bunch of pictures because the Cleveland Clinic is an absolutely beautiful campus.

Thank you all,  so very much for your support,  thoughts and prayers. I’m truly grateful and I will keep you all posted.

image

**Thanks for reading**

       -Lost and Tired

Please join our Autism Help Forum

Look for “Autism Help” app at the Google Play Store

MyFreeCopyright.com Registered & Protected

This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct is working against me.

Permanent link to this article: http://lostandtired.com/2012/07/11/autism-and-autonomic-testing-arrived-in-one-piece/

Jun 27 2012

I can’t win for trying

PinterestLinkedInRedditShare/Bookmark

They say it comes in 3′s,  hopefully this will be the end of it for awhile.

I just got off the phone with the Cleveland Clinic.  I was calling to make Gavin‘s appointment with the head of pediatric psychiatry.  This is the guy that has worked with Gavin in when he was admitted for a week,  about 2 years ago for delirium.

Instead of being able to actually schedule the appointment,  I was told that he has transferred out of state to Massachusetts.

WTF?  This is the 3rd doctor this month and the 2nd of the day,  that we have lost.

I don’t know what to say at this junction. There isn’t another doctor,  that we are aware of that is qualified to treat Gavin. Thankfully,  the staff at the Cleveland Clinic are going to reah out to our newly departed doctor and find out who he would recommend that we see,  whether in the Cleveland Clinic or outside of it.

It’s safe to say that morale is pretty friggin low at the moment. If fact,  this is the lowest I’ve felt in a very long time.
May was a horrible month for the Lost and Tired family.  June, while better at first is very quickly going down the proverbial toilet. That’s not the kind of water ride I was expecting and certainly not one that I enjoy.

**Thanks for reading**

       -Lost and Tired

Please join our Autism Help Forum

Look for “Autism Help” app at the Google Play Store

MyFreeCopyright.com Registered & Protected

This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct is working against me.

Permanent link to this article: http://lostandtired.com/2012/06/27/i-cant-win-for-trying/

Jun 27 2012

We just lost another doctor

PinterestLinkedInRedditShare/Bookmark

The mail arrived bring us news of yet another doctor leaving for a new location. This time it’s our developmental neurologist and she’s leaving for the Cleveland Clinic.

In all my years as a special needs parent, we have lost this many doctors at one time.

We have to now decided if we move with her to the Cleveland Clinic or if we start all over from scratch with a new doctor. Both ways have their advantages and disadvantages. 

If we follow her to the Cleveland Clinic than we don’t have to start over with a new doctor. At the same time however,  the expenses involved with following her to Cleveland are likely to be outside of what we can afford in a regular basis.

If we start over with a new doctor,  we have to get to know them and they have to get to know us. On the other hand,  it could be of benefit the boys to have a new set of eyes looking into their developmental needs. Maybe they will see something our old doctor didn’t and be able to improve upon the quality of life of our boys. It’s also a much more affordable and convenient option as well.

It’s never easy to lose a doctor,  especially one as important as a developmental neurologist.  Having said that,  we can change what has happened so all we can do is make the best of it.

**Thanks for reading**

       -Lost and Tired

Please join our Autism Help Forum

Look for “Autism Help” app at the Google Play Store

MyFreeCopyright.com Registered & Protected

This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct is working against me.

Permanent link to this article: http://lostandtired.com/2012/06/27/we-just-lost-another-doctor/

May 17 2012

Dysautonomia: Arrival at the Cleveland Clinic 05/17/2012

PinterestLinkedInRedditShare/Bookmark

We have arrived at the Cleveland Clinic,  exactly on time. Traffic was horrible and Gavin is already out of it

We are all checked in and waiting to go back.

image

**Thanks for reading**

       -Lost and Tired

Please join our Autism Help Forum

Look for “Autism Help” app at the Google Play Store

MyFreeCopyright.com Registered & Protected

Related Posts Plugin for WordPress, Blogger...

Permanent link to this article: http://lostandtired.com/2012/05/17/dysautonomia-arrival-at-the-cleveland-clinic-05172012/

Older posts «

Switch to our mobile site