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

Tag Archive: doctor

May 03 2013

A post about hope and Mommy parts

Shortly after publishing my last post, Lizze’s doctor called and they spoke for a bit about what’s going on. 

We received some clarification of a few things and learned some new ones as well.  This was really a good news/bad news kind of phone call.

The good news is that as of right now, she’s not yet in menopause.  :-)

While her LH levels are really high, her FH levels are normal, indicating that she is not in menopause. She has something called……..crap, I can’t remember what it’s called now. 

Dammit.

Anyways, here’s where the good news/bad news comes into play. 

image

Basically, her ovaries aren’t working right.  That’s the bad news.  The good news is that she has ovaries.  That’s actually really, really good news. 

Essentially, the doctor said that her ovaries are acting as though they are in menopause at times and this is wreaking havoc on her body.  At this point we don’t know why this is happening but basically, sometimes they work and sometimes they don’t. 

Unfortunately, she can’t be treated with estrogen because of her history of clots. 

I know I’m forgetting something but it’s been a long week and my brain isn’t quite firing on all cylinders right now.  

Her doctor did say that this going to require a team approach.

This team with consist of her (OB/GYN), an endocrinologist and a psychiatrist.  She also said that she wants Lizze back in next week because the longer this goes untreated, the more damage is being done to her body. 

Right now she’s a total mess and I mean that in the most loving and respectful way but it’s true. 

She’s um……how to put this lovingly…..really sorta grumpy. That totally outside of her control, but it’s not much fun for anyone. Her hair is grey and falling out, she has a serious vitamin D deficiency, there’s concern about bone loss, she’s not eating, can’t sleep at night but can’t stay awake during the day, is in a great deal of pain and severely depressed.

On the bright side, a lot of this is linked to the hormone imbalance but with any luck and if there is indeed a God,  we may be able to finally get her some relief.

Again, I know I’m forgetting some of the details but this is a good way to begin the weekend. 

Lizze feels like she’s knows more and has a direction to go in.  If I’m not mistaken, there may even be a glimmer of hope left after all.  :-)


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.



Permanent link to this article: http://lostandtired.com/2013/05/03/a-post-about-hope-and-mommy-parts/

Nov 27 2012

Lizze is being admitted to the Cleveland Clinic for 3 weeks

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/

Jul 20 2012

Behavioral Crisis: Update 07/20/2012 (6pm)

We just met with the doctor and few minutes. He was really nice but I don‘t know that he believes us.  Honestly,  I don‘t know that I would either.  It’s not a common situation and Gavin is not your typical child.

However,  like I said,  he is very nice and Gavin admitted to everything when questioned.

The doctor is meeting with the social worker and the attending right now and then we’ll know where to go from there. At least in theory.

**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/2012/07/20/behavioral-crisis-update-07202012-6pm/

Jun 27 2012

I can’t win for trying

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

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: Summing things up 05/17/2012

We made it home safely. The return trip was much easier then the trip up there. We met with the doctor for about an hour and had a very interesting conversation. He took an extensive background medical history.

After the history,  he did a through physical exam.  Believe it of not,  the doctor actually found Gavin’s lower reflexes.

What he showed us is that Gavin’s reflexes are actually there,  however they diminish as they get lower.  While I don’t know that I agree with this entirely,  it was clear that they are still present above his knees. When you go below his knees, that’s when they become even more diminished.

Basically, we are going to have to go through all the testing at a later date.  We actually go back in early July for a series of autonomic.

He also gave us an order for a chromosomal micro array. This is extremely detailed genetic testing. It will look for something like 2000 different genetic disorder.  He will have the test itself done at Akron Children’s Hospital in the morning,  prior to his infusion.

The doctor told us that if he for some reason tests negative for Dysautonomia,  and the genetic testing doesn’t reveal anything useful,  this is most likely mitochondrial in nature. We learned that neurologically, while he is diminished,  he’s otherwise normal.  This of course,  is not referring to things on a cognitive level though. He is clearly regressing in that area.

We were also informed that mitochondrial disease can present with Gavin’s symptoms.  A person can experience regression and it can be progressive in nature,  like Gavin’s.

That’s where stand at this moment. We are in for another waiting game :-(

< em>**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

Permanent link to this article: http://lostandtired.com/2012/05/17/dysautonomia-summing-things-up-05172012/

Mar 25 2012

The big question: Do I have pneumonia?

Lizze finally got me to go to the doctors today.  I haven’t been feeling really good lately but I haven’t been so bad that I thought I needed to be seen.  However,  Lizze,  in her infinite wisdom,  loves to remind me that when I do, on occasion,  get sick,  I end up in the hospital.

So I went to Aultman North, this morning.  It’s basically like going to your regular doctor when you can’t get in to see your regular doctor.  It’s a step down from the ER.

If I’m being honest,  I was getting concerned because I have an occasional cough.  However,  when I do cough,  my chest feels like it’s on fire.  I felt that before but only when I have a really bad cough that is almost constant.  I was worried that maybe I was actually getting really sick.

That being said,  I’m happy-ish to say that I only have a respiratory infection. The doctor says these are lasting 5-21 days right now. 

Hopefully,  I don’t get any worse because we have a week full of appointments ahead of us. I need to be functioning enough to be able to pull all of this off. If I don’t get any worse,  I should be just fine.   :-)

Here’s to hoping……

image

image

**Thanks for reading**

       -Lost and Tired

Please join our Community Autism Support Forum

MyFreeCopyright.com Registered & Protected

Posted from WordPress for Android so please forgive any typos as auto-correct and I don’t see eye to eye. :-)

Permanent link to this article: http://lostandtired.com/2012/03/25/the-big-question-do-i-have-pneumonia/

Older posts «

Switch to our mobile site