What a Difference A Diagnosis Makes

[LNN]

I was doing a little research for a project when I came upon this story. I thought many could relate...

 

What A Difference A Diagnosis Makes

 

I supported a 16 year old girl during a mental health crisis a few months ago and then my youngest son during a medical crisis right after that. What a difference a diagnosis makes!

 

Both were brought to the emergency room. My son was taken immediately into a room to get his vital signs taken; the young lady was stripped of all her possessions and was told there were cameras watching her. She cried.

 

Both needed to report on their past history. During the first hour my son’s medical history was looked over and questions were asked and answered by his parents. The young lady and her father sat in a small locked room. They cried.

 

Both had a diagnosable disorder. During the second hour, my son’s medical history was discussed right away and the nurse wanted to hear about the events that led up to us being there. The 16 year old sat in a small locked room and cried.

 

Both needed to know that they were going to be safe and okay. During the third hour, my son was administered an IV and asked if he needed anything to make him more comfortable. The young lady sat in a small locked room and cried.

 

Both needed to be assessed and a course of treatment needed to be administered. During the next several hours my son was taken in and out of the ER to have tests done. It was determined he needed treatment and was being transferred to the Pedi ICU. The teenage girl sat in a small locked room and cried.

 

Both needed to get healthy so they could go home and get back into the game of life. My son was quietly and respectfully taken for a ride to the Pedi ICU. He was seen by several doctors and nurses and given all the support and treatment he needed. I was invited to help myself to the family kitchen area and make myself something to eat and drink. The nurse came in and made the pull out chair bed for me and gave me a nice pillow and blanket. The young lady was given a glass of water and after 10 hours in a small locked room, her insurance company determined she could get the help she needed. Behind the administrative locked doors came two EMTs and the doctor. They told her to jump right up on the stretcher, right in front of several other youth and family members so they could be take her away. After 12 hours of sitting in a small locked room, she was finally going to get the emergency treatment she needed. She didn’t cry, she ran out of tears. I cried for her.

 

What a difference a diagnosis makes!

 

Parent Professional Advocacy League

[PowPow]

This is a good, though very sobering reminder of reality. Thanks for posting this.

I am sure many of us have similar painful stories to share. Thanks, LLM.

[dcmom]

Thanks LLM- gave me chills, and hurt. How long is the stigma against kids/ people with mental illness going to last? As WE are learning, most of it has a biological cause- but, frankly even if it didn't- why is one person's life worth more than another? Hopefully this will change in our kids lifetime.

 

 

Oh and BTW- as I am sure you all know, parents teach this to their kids. My dd has a special needs child on her bus. I imagine, by what she tells me, that he is high functioning autistic- but I don't know. The kids are cruel to him. They set him up to ask a girl out, they tease him, etc. Only she and one other girl (her friend) stand up for him (they went to a guidance counselor). When I asked my dd what he was like- her response was- I don't know, maybe kind of like I was when I was sick.

[peglem]

This is how my daughter was treated after her autism dx. Could not even get decent medical treatment for non-autism related stuff. And mom was treated like she was some poor sap that just couldn't accept that her child was autistic (translates to hopelessly debilitated and not worth the time and trouble to help). And what really shocked me is that this attitude was most prevalent at the local children's hospital.

[WorriedDADNMOM]

I can remember my oldest dd wigging out when the whole neighborhood kids and parents watching as she cried and ran back in the house, not wanting to get on the bus and go to school, due to very high anxiety and separation anxiety post strep and amox abx. Then my dd ticcing post strep. The embarassment in my mind is gone thanks to the denial of the docs and nurses. Just makes me more determined and has changed my own attitude. I don't give a.................(pick an expletive). As a dad and mom, we will fight and keep talking about this stuff till the day someone walks on the sun. This denial in the medical community is starting to crack. In just the year we have been dealing with this, more and more stuff is coming out and getting into the media.

 

Thinking of the twelve girls in NY with tourettes like illness. Our doc subtly told us that tics can be from untreated strep, did blood work which confirmed strep then later said the long term penicillin that took care of the tics, could have a "placebo" effect. Why the change???? Any thoughts???? Sorry for the soapbox.

[tpotter]

I was doing a little research for a project when I came upon this story. I thought many could relate...

 

What A Difference A Diagnosis Makes

 

I supported a 16 year old girl during a mental health crisis a few months ago and then my youngest son during a medical crisis right after that. What a difference a diagnosis makes!

 

Both were brought to the emergency room. My son was taken immediately into a room to get his vital signs taken; the young lady was stripped of all her possessions and was told there were cameras watching her. She cried.

 

Both needed to report on their past history. During the first hour my son’s medical history was looked over and questions were asked and answered by his parents. The young lady and her father sat in a small locked room. They cried.

 

Both had a diagnosable disorder. During the second hour, my son’s medical history was discussed right away and the nurse wanted to hear about the events that led up to us being there. The 16 year old sat in a small locked room and cried.

 

Both needed to know that they were going to be safe and okay. During the third hour, my son was administered an IV and asked if he needed anything to make him more comfortable. The young lady sat in a small locked room and cried.

 

Both needed to be assessed and a course of treatment needed to be administered. During the next several hours my son was taken in and out of the ER to have tests done. It was determined he needed treatment and was being transferred to the Pedi ICU. The teenage girl sat in a small locked room and cried.

 

Both needed to get healthy so they could go home and get back into the game of life. My son was quietly and respectfully taken for a ride to the Pedi ICU. He was seen by several doctors and nurses and given all the support and treatment he needed. I was invited to help myself to the family kitchen area and make myself something to eat and drink. The nurse came in and made the pull out chair bed for me and gave me a nice pillow and blanket. The young lady was given a glass of water and after 10 hours in a small locked room, her insurance company determined she could get the help she needed. Behind the administrative locked doors came two EMTs and the doctor. They told her to jump right up on the stretcher, right in front of several other youth and family members so they could be take her away. After 12 hours of sitting in a small locked room, she was finally going to get the emergency treatment she needed. She didn’t cry, she ran out of tears. I cried for her.

 

What a difference a diagnosis makes!

 

Parent Professional Advocacy League

 

 

I had one too many of these in the local ER when we would come in with severe pain (one time it was pancreatititis, another time it was enlarged spleen), tics that made it very difficult to breathe, etc.) Because the doctors didn't know what to do, & they know he's diagnosed with PANDAS, they would leave him lying there for extended periods of time.

 

The last time, I got really upset with them, and had reached the point of: "why go to the ER, even with chest pain & severe palpitations...they won't do anything anyway." So, I called the ER department, and asked to speak with the director of the ER. I didn't hear back, and then I called again, and mentioned about the palpitations and chest pain. He called back.

 

I had a very long discussion with him, that I was tired of DS sitting there, not getting help, and the fact that I had actually not brought him to the ER with severe palpitations, because he would't get help anyway. He asked me what the ER could do to help, given the fact that "there are several kids with PANDAS who have been coming here!" This opened the perfect opportunity to discuss our needs with him, how listening to the parents was critical, and that I would send him documents and names of doctors who could give him some additional information.

 

I think it was very supportive (we haven't been back since, so we'll have to see if it helped in the end.)

[bronxmom2]

Sent chills down my spine.

I was treated this way, 25 years ago, when I became suicidal in what was almost certainly a PANDAS exacerbation.

I was locked in a room and left to cry alone.

[cobbiemommy]

This is how my daughter was treated after her autism dx. Could not even get decent medical treatment for non-autism related stuff. And mom was treated like she was some poor sap that just couldn't accept that her child was autistic (translates to hopelessly debilitated and not worth the time and trouble to help). And what really shocked me is that this attitude was most prevalent at the local children's hospital.

 

This is how my son was treated also by ID duck at local children's hospital. "It couldn't be Lyme, we don't have that in Missouri. Let's focus on the Asperger diagnosis." My reply was fine, but what about the pain in his feet, his shins, his shortness of breath, his weight gain, his extreme fatigue????? She pawned me off on an endocrinologist, which actually was better for my son. Depending on what we find out with Dr. B next week, you know I will be writing her a letter stating what is really going on with him. Including the Lyme, Bart, Babs, and Ebstein Barr Virus. She kept saying those weren't meaningful tests, not accurate, etc.

 

I get angry just thinking about it!