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

Category Archive: Doctor's

Jul 20 2012

Behavioral Crisis: Change of plans


We were ready to make the trip out to Youngstown to Belmont Hospital.  I said Belleview before but I had been watching Law and Order recently and they say Belleview all the time. 

As we were getting ready to leave,  Gavin complained that his vision was blurry.  We don’t know what that means and don’t want to take any chances.

We diverted to Akron Children’s Hospital for help,  once again.

The other place we were supposed to go to doesn’t do medical care and because of Gavin’s health issues,  he needs medical supervision.  I called them back and they agreed that this was the right thing to do. 

So we have just arrived at Akron Children’s Hospital and are waiting to meet with the PERK worker.  I don’t remember what PERK stands for but they do the intake evaluation.
There is a chance that we could be sent home,  admitted here or referred to Cleveland, Youngstown,  Pittsburgh or Columbus.  However,  where ever we would go to would have to be a medical facility.  If we get bounced out of Akron and referred somewhere else,  Cleveland would be my first choice. 

His autonomic doctor is up there and they may need to be involved.

I’ll let you know when we have more information.

Thank you for all the support….. :-)

**Thanks for reading**

       -Lost and Tired

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Jul 19 2012

Tough decisions that many won’t understand


There was a showdown in the Lost and Tired corral this afternoon.  Gavin has been having issues throughout the day, most of which we have let slide.  We did so to try and keep the peace.

Lizze nor I have the energy to deal with meltdown, if it can be avoided.

However,  as we were sitting down to dinner,  Lizze had asked Gavin a question. It was an it was a simple question and instead of answering her,  he screamed at her. 

That was it,  I had run out of patience.

When we spoke with Dr.  Pattie on Tuesday, we had decided that we must cracked down on his treatment of Lizze. His disrespectful attitude towards her will not be tolerated. It would be the same for any of the other boys.

Something else that Dr.  Pattie mentioned was that Gavin had many qualities of a child with attachment disorder.  That will be a whole other posts if anything ever comes of that.

The moment he screamed at Lizze,  I pulled him aside and told him that he would be having oatmeal for dinner.  I explained that we had been very patient with his behavior today but he will not disrespect his mother.
Of course,  that led to a massive meltdown.  Self-injury,  stomping,  screaming and flinging himself around,  we’re all on tap. 

It took Lizze and both a little while to get him to go upstairs.

At one point, as I was walking with him up the stairs,  he turned to me and screamed as loud as he could,  right in my face.  I carefully,  and I mean carefully,  pinched his cheeks to stop the screaming.  At this point I had to tap out and let Lizze step in because I didn’t want to lose my cool.  Lizze and I always back each other up in these situations so that of one of us gets pulled in to deep we can tap out before we lose our temper.  It’s worked out quite well over the years.

Eventually Gavin went to his room and we let him chill there for about 30 minutes. 

The boys were visibly and understandably upset so we fed Gavin dinner,  after the boys had already had a peaceful dinner. 

After Gavin finished his dinner,  I told him that he would not be playing with his brothers tonight and that he would need to go read his book until it was time for bed.  When he was that out of control,  we tend to keep him as isolated from the boys as we can,  at least for a while. We just want to play things on the safe side.

Lizze and I are going to talk tonight and try and figure out a plan of attack.  Something has to change and change significantly. These meltdowns are getting more and more violent.  He’s also engaging in more violent play and seems to enjoy scaring his brothers.
I forgot to mention that when we picked him up from the hospital on Monday and we’re on our way home after picking up the other boys, Gavin told Elliott that the hospital tortured him

Lizze shut him down but Gavin kept scaring Elliott. Elliott is already terrified of the hospital and doctors in general.  Gavin knows this.

I fear that we have some tough decisions ahead of us.

Our love for Gavin is never in question,  however,  our ability to cope with his behavior much longer,  is.

**Thanks for reading**

       -Lost and Tired

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Jul 13 2012

Gavin hospitalization update: 7/13/2012 (11am)


I spoke with Lizze this morning and things have changed a bit for Gavin. He had another bout with chest pain last night.  Akron Children’s Hospital has wisely decided to treat Gavin as a cardiac patient.  Until they can confirm that nothing is wrong,  they are going to treat him as though something is. 

The cardiologist came in today and explained to Lizze that Gavin’s 12 lead EKG was abnormal. 

He said that it could simply be that because Gavin’s heart is in the center of his chest,  it through the EKG off hut he’s going to compare it to Gavin’s previous EKG’s to make sure. 

At this point,  Gavin is resting and being monitored for seizures.

Gavin is also being worked up for something called Marfan Syndrome.  This is a rare disorder of the connective tissue. Gavin’s doctors have been concerned about this for a little while now but it hasn’t been as big a concern,  only because he had more immediate things to worry about.

Not very familiar with Marfan Syndrome,  but I know it’s not a good thing.

Right now,  Lizze is waiting for Gastro to visit to discuss Gavin problems with swallowing his food or drinks.

That’s all I know at the moment.   Right now I have 2 very hyper kids at home giving me a ride for my money.  My plan is to maybe try and take the boys to a movie later on.  I’m waiting for the mail, and hoping my paycheck shows up today.  If it doesn’t,  than we aren’t going anywhere.

Please continue to keep Gavin in your thoughts and prayers.  I will keep you all updated as I myself get updated.

**Thanks for reading**

       -Lost and Tired

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Jul 08 2012

I’m sooooo tired


I think I managed to obtain about 3 or 4 hours of very restless sleep before Mr. Emmett John woke up.

Lizze was sick,  all night long and remains so now.

I was going to try and walk this morning because it’s been too hot during the day and evening.  Yesterday, we had a heat index of 112°F. That’s a bit in the way to frickin hot to walk side of things.

On the positive side of things, if I have to find something to be positive about, Emmett woke up in a really good mood.  At least I have that. He could be screaming right now but he’s just in a snuggly mood instead. 

If Lizze doesn’t feel better soon,  I don’t know what that will mean for this coming week.

I suppose,  the only thing that has to happen for sure is Gavin’s infusion on Monday morning. Every thing else could be rescheduled if absolutely necessary. Having said that,  this week really needs to go off without a hitch because Gavin is going down hill and we need to get him whatever help we can.

**Thanks for reading**

       -Lost and Tired

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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

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Sep 12 2011

Lizze sees her PCP this morning


Lizze and I have been wondering if maybe she has the same type of immunodeficiency as Gavin. That would explain why she is always sick and was frequently sick as a child. 

There is a genetic link to PI (primary immunodeficiency) and Gavin had to get it from somewhere. She actually goes to she her primary care physician this morning and is going to discuss this with her.

I’m very interested in what she suggests and I also think it makes sense to look into this a bit further.

  It would be nice if we found something that could be addressed.  We coukd finally improve her life, at least in quality.

I’m not suggesting that she has PI,  but I do think that it’s worth looking into.  As far as I know,  this is something that has never been looked at before and it requires very specific testing. In other words,  this isn’t something that would just show up on routine blood work. 

We need to figure out whether or not we can do anything to help her.  I really want her to have an improved quality of life,  if at all possible.

- Lost and Tired

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Sep 01 2011

Back to Akron Children’s Hospital 9/01/2011


We are at the Ear,  Nose and Throat doctor (ENT). We are meeting to discuss the next step for Emmett with these chronic fevers likely related to PFAPA. 

We are expecting to hear that his tonsils and adenoids need to be removed.  Hopefully it’s not going to need to be done but we have already been told it’s the next likely step.

Fun.. Fun

image

- Lost and Tired

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