Frustrated & Disgusted Vent

[susiestar]

I am just disgusted and frustrated with all of the medical care Jessie has been receiving.

The pediatrician doesn't want to do ANYTHING with/for Jessie. For this problem or for any other problem. She did the referral to the neuro and is done.

Neuro says nothing showed on his tests so he doesn't want to deal with her. Is rude and condescending on the phone. Tried to YELL at me about addiction.

(Are you aware that children who are properly treated for pain with narcotics have a less than 1% risk of addiction?)

No one cares that she is in agony.

She is unable to handle the online school. She is trying to do just math. I NEED a docs note to do this, but no one will write or sign one. They tell me to go ask the other doctor.

I am just about ready to scream.

Jessie WANTS to do schoolwork. She just simply isn't capable of a 6 or even a 2 course load.

IF her pain was managed and fairly well controlled she would be able to do much more. But the docs don't want to treat ANYTHING relating to her right now.

I am making an appointment iwth a psychiatrist for her because the pediatrician and neuro both SWEAR that this is probably anxiety and she can 'get over it on her own'. BOTH have used that exact wording and I want to yank their lungs out through their nostrils!

Thanks for the vent. It just hits me hard when the docs just refuse to help.

 

[KTMom91]

I'm so sorry, Susie. Fingers crossed the psychiatrist will be more supportive and helpful. Hugs to you both.

 

[hearts and roses]

Oh Susie, I'm so sorry that you're having to deal with this type of treatment. How awful for Jess. I just don't get doctors sometimes. It's like in all their training, their common sense and bedside manner go right into the dumper.

Sending prayers that she gets some relief and you get some answers~

 

[susiestar]

It gets WORSE!!!

I have now called 8 psychiatrists and 4 therapists. NONE of them will see her before late DEC!!!

I am truly flabbergasted. What the heck are we supposed to do to help her in the meantime? I think her state of mind is holding up fairly well for now, but by Dec she will have had more than 5 MONTHS without adequate treatment.

I am not sure just how to make these people understand that she needs real treatment, and real pain management as a part of that.

This is just so strange and bizarre to me.

and scary.

 

[trinityroyal]

Susie, I'm so sorry that all the docs are continuing to be so unresponsive.

I wonder...is it possible that Jessie's strength and ability to cope might be getting in her way? In the eyes of the docs, she's not melting down or having hissy fits and she's still able to function so it can't be that bad.

My Grannie had what I call "healthy face". She didn't ever look ratty when she was ill, and pain didn't show in her face at all. As a result, all her docs missed the pancreatic cancer until it had metastasized through her body and it was too late to do anything.

As a fellow healthy-face sufferer, I have learned to be demonstrative with health professionals when necessary, in order to get the treatment I need. This includes kicking an orthopaedic surgeon in the shins when he was dismissing my badly mangled arm as malingering to get off work. He yanked on it, it hurt like billy-o, and I kicked, purely out of reflex. BUT after that I got to see the neuro-surgeon, physiotherapist, and a team of other specialists.

I guess the point of all this is that if Jessie is trying her best to be stoic about it, then the medicos might not recognize just how badly she's feeling, despite the evidence that's right in front of them.

Maybe she needs to show them her agony, so that they can see and understand it. Maybe then they'll start to acknowledge and deal with it.

Sending all the strength I can muster for both of you, and a pair of my old steel-toed boots for kicking hineys as appropriate.

Trinity

 

[DammitJanet]

Trinity has a point. I have the same problem with being stoic. I dont cry. Ok..rarely and crying for me usually means Im mad or sad not in really bad pain. I didnt even cry in the rehab when I was in such bad shape that I couldnt handle the PT they were giving me and my lung capacity was down and I went what they called "limp noodle" on them and practically passed out and they found out I had both DVT and a PE. I almost died again but I didnt cry from the pain I was in. I simply kept telling them I was so tired and I was hurting. They thought because I wasnt crying that I was ok. Uh...no!

Even now when I go in to docs and just wince they think its not that bad. I tell them up front...I dont cry, I dont scream...If I grunt or wiggle or raise my hands or something like that...Im in pain!

 

[Shari]

Sus...Wee difficult child has an appointment with your Tulsa man on Tuesday.

Could you make that work at all??? I know he's not on your insurance anymore...but if you can somehow make it work, I will somehow give you that appointment and jump on a cancellation list. We don't have any immediate concerns and I have to go back later in Nov, anyway, to get the testing results.

 

[Mattsmom277]

Medical professionals who dismiss our health issues that are limiting our lives is so frustrating. Just as bad is the way that many in the field are paying so much attention to addictions rates from abuse of pain medications that they often nowadays flat out refuse to treat pain. I am so sorry your Jess is being neglected. I truly do believe this is neglect.

I went through YEARS of being dismissed for ongoing health issues. I was in ER so much or doctors office, I should have had a permanent exam room just for me. Debilitating bladder spasms that would seize my bladder so completely I could not urinate and would require a catherer. Ummm, problem? I'd say so. Solution? Sit longer on toilet to try to fully empty bladder more often. Are you kidding? Tingling in fingers, then entire hands, then toes, then feet, eventually complete numbness in limbs with loss of strength in my hands (couldn't hold a fork or spoon, tie shoes etc). Solution: destress, its anxiety. Okay then why was it at that point it was MONTHS of this and my left leg was literally like it was dead. Could have put a ice pick through my calf and I wouldn't have felt it.
Esophagus spasms that had the ER doctor so panicked she didn't know what was going on so ordered a surgical consult and had OR prepped just in case, she couldn't imagine anything that would cause that level of pain (worse than childbirth with me screaming in a way I didn't birthing kids). Solution: chew your food slower. Umm, ok. I have a surgically altered stomache that is one ounce in size. About equal to 5 grapes. If I overfill or don't chew, I projectile vomit. Not to mention, I hadn't eaten at that point for 2 days as the pain escalated to the point of the ER visit. On and on it went, with back spasms, chest pains/spasms. I lost my vision three times! As for pain with any of these things, take a ibuprofen. PFT!

Finally a ER doctor did a simple neurological exam after pulling up my chart of the previous few years history of visits. Asked me about 10 questions. Then told me, why hasn't someone sent you to a neurologist? Something is really not right here and you're young. All of these issues even statistically are more than likely related.

Did I get a neuro referall from my doctor after the ER sent his report? Nope. I got sent to a different type of specialist, and was told off for showing visible annoyance that it wasn't a neuro referall. I was asked why I would WANT something neurological as a answer? Umm, huh? Okay doctor. Yes. I want some godawful answer. Maybe a nice big fat juicy growing brain tumor or something. Please, pretty please. Give me a break. Of course the specialist said in my first and only visit they would see me, why are you here, you need a neurologist. DOH! Please put it in writing to my doctor! Eventual answer, Multiple Sclerosis with massive lesions on brain on spine. Did the doctor show any shame for disregarding years of progression of a debilitating disease that could have been prevented? Nope. Maybe he thinks its a psychosamatic display of my anxiety!!

Whew! I'm so glad those days are over. I am so glad your Jess has you in her corner. We are not stupid people right? If you know and Jess knows something is going on that needs intervention, my bet is on you are right. Doctors give zero credit for people knowing their own bodies. I think many have god complexes. That fancy degree can get to their heads. I wish it was like days of old, where doctors toiled out of true commitment to well rounded treatment of small practices. I swear as patients nowadays we are all just sheep they herd as their bank accounts grow so that they can retire young and leave their patients behind without doctors in the long run. I guess I'm jaded.

Keep at it. Someone has to finally listen and do something concrete for your Jess!

 

[totoro]

I am so sorry for all of this carpy treatment! I know you can't do this, but that was why we had to pack up and leave our dream home and move just for better health care and schools.
We like it here but I don't see myself spending the rest of my life here, but K and N are doing much better as far as Doctors and School. Despite the debt and our house not selling now for 2 years!

Even Jeff went through some of the same things, no-one knew how to help his severe arthritis issues, because guys in their 30's don't have his issues. He also doesn't show how much pain he is in.
They won't give him pain pills either.

Our system just flat out needs an overhaul in so many ways.

Poor Jessie, she is way too young to have to suffer like this with no-one understanding and treating her like this.

 

[Hound dog]

Susie

Trinity made a very valid point. One that I learned the hard way.

When I was first diagnosed with the kidney diseases my urologist was an awesome guy who really "got" that kidney disease is painful.....at times excruciatingly painful. I never had to ask more than once when I needed something.

Since this was in my early 20's......Stupid me thought all docs would be that reasonable and understanding. So I was in my late 20's the first time I went into acute renal failure. My doctor was out of town.....the one I got instead was both a moron and did not get that I'm not a complainer.....and I can be basically dying in pain...and you'd never know it if I didn't want you to see it. The jerk nearly killed me before a nurse I knew well from past admissions told me I was acting too "well" for this particular doctor.

Sure enough.......once I let down my stoic face......he jumped into action.

When I take my kids to the ER/docs and they're sick.....if they're not acting sick.....I tell them to knock it off......the doctor can't tell how sick they really feel if they can't see it. I find this more true today than I ever did 20 yrs ago.

Nichole is really bad with the stoic face too. And it's why over and over docs don't take her symptoms seriously. On the occasions where she couldn't tough it up.....they were jumping to find out what was wrong.

When I go to a doctor.....if I'm sick, in pain ect.....I don't dress up, wear my comfiest clothes, don't care how my hair looks (he's lucky to see it combed)....never wear makeup........ You'd be surprised at how many docs won't believe your sick if you bother with makeup or your hair. Stupid but true.

I know it's horribly frustrating. Nichole's been going thru something similar for about the past 3 yrs. She's still dropping weight for no reason (eats like a horse) and has some other very disturbing signs and symptoms. And she still has huge issues with docs taking her serious. Last one told her it was anxiety. Uh, no. Nichole doesn't have anxiety issues and hasn't for a very long time.

(((hugs)))

 

[susiestar]

Thanks all. I am going to make her practice looking sick to Daddy and Gpa. Neither of them has a clue how bad this is. husband believes firmly that if you are in that much pain the docs put you in a hospital and fix it the first time.

Yes. He IS an idiot about this. He is a little better after all these years with me, but not a lot.

We are going to drill and drill and drill it into her head that she must LOOK sick and NOT suppress the tremors in any way. I would be OK if she exaggerated them if they were not at their worst. problem won't need to though..

Hugs to all of you.

 

[GoingNorth]

I'm bad with the stoic stuff as well. I actually had symptoms of a partial intestinal obstruction for nearly a month.

I figured I was constipated or something. Then, when the projectile vomiting started, I went to the ER and all they did was give me a shot of anti-nausea medication and two bags of IV fluids.

It was the next day when I was so sick I barely managed to make it to the phone to call an ambulance that we ALL figured out I was literally dying.

Part of my small intestine had become gangrenous and was leaking into my abdomen. I was told I should have been in AGONY for several days before it got to that point.

I was very lucky. I'm short a goodly length of intestines, managed to survive the peritonitis afterwards, but I will have intestinal problems for the rest of my life due to scarring and the part of the intestines I lost.

My whole problem was that I didn't "present" with the usual symptoms of that sort of illness. I honestly thought I just had a 'belly ache"

Kids go two routes with this sort of pain; either they flip out, or they 'slurp it up' and try to act normal.

 

[Wiped Out]

Susie,
I'm sorry, this is so frustrating and I so feel for Jessie. Praying that someone will be able to help soon and help rid Jessie of her pain. Hugs.