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#113262 by philbymon
Wed Jun 02, 2010 4:33 pm
Okay....most of you ppl know that my grandson, Jace, has had some huge problems - arachnoid cyst on the back of his brain causing his fine motor skills to be underdeveloped, a shunt was put in to compensate & relieve the pressure, then he started getting sick from it all with migraines & vomiting.

We've been dealing with this sh*t for over a year. His migraines are getting worse, so my son took him to a pediatrician, since the neurologist couldn't do anything more.

The pediatrician over-booked his patients the day Ian took Jace in, so after sitting & waiting for nearly three hours, he got to see a nursing assistant.

That stupid asshole put him on some anti-depressants, to be taken, you guessed it - DAILY! Since then, Jace has been sick every goddamned day. I had to leave work to go get him from day care after the preschool bus drove him back to day care cuz he was vomiting on the bus.

Yesterday, Ian had to pick him up from school cuz he vomited on some kid.

I think I'm gonna go with them next time they see a doc. If they try any more of this stupid guinea pig sh*t on him, I'm just gonna kill someone.

I'm so sick & tired of this "give 'em a pill" mentality in this f*cking country. If he doesn't see a real doctor soon, I fear the worst for him. How much of this sh*t cqn a little kid take? I dare anyone to tell me that we have the best health care in the world, cuz that's just so much f*cking BULLSHIT! We have some of the very WORST in the goddamned world, & until our health care pro's get out of the pharmaceutical co's pockets, it will continue to deteriorate.

I'm gonna turn some doc into a punching bag real soon if this sh*t doesn't change for the better.

#113263 by Metal D
Wed Jun 02, 2010 4:39 pm
Holy cow, Phil! I had no idea about any of that. I agree with you as well about how doctors just think that a pill fixes everything. IT DOESN'T FIX ANYTHING AT ALL!!! My prayers are with you and your family. I hope that the little guy has a big turn-around soon. After reading that...I'm sickened, sad, and angry all at the same time. Being a dad really hits home. God Bless...

#113264 by philbymon
Wed Jun 02, 2010 4:51 pm
Hey...sorry if I seem a little over the top about it all.

There is nothing in the world more helpless than a parent with a sick child. My son makes me so proud, being a single dad, & he does a stupendous job with his lil 3 year old son.

He's been to Dr after Dr with all of this crap. I used to go & assert some harsh reality into the equation, but I've backed off over the last cpl months, letting him handle things.

But he doesn't have the experience with these f*cking quacks that I do. We had some issues with Ian when he was small, & it took some serious face-offs with a doc or two before things got straight.

I WILL be there at the next apptmt & get the doc to see some f*cking sense. I think Ian is too trusting of the med community.

I threw a doc up aginst the wall, once, when they found out my mom had leukemia. That asshole tried to rip me a new one, calling me negligent for not taking her in sooner. Stupid ass didn't know that he was the THIRD quack I'd taken her to, & by then she was nearly dead.

The two previous quacks had sent her home with vitamins & told her she was lazy or had phlebitis. I wish I could have gotten my hands on them once the truth was found out...perhaps it's better that I didn't.

#113266 by 90 dB
Wed Jun 02, 2010 6:04 pm
Sorry to hear about your grandson's illness. The quality of medical care is directly related to location. Is he being diagnosed/treated in W. Va?

You are only about 85 miles from Johns Hopkins in Baltimore. If it were me, I would get him to Hopkins ASAP. One of the finest bunch of docs in the world.

#113267 by philbymon
Wed Jun 02, 2010 6:19 pm
That's where I took Ian as a wee lad, 90db.

No, Jace is going to the UVA medical center, which is also highly touted as being one of the best. He was operated on by the son of the doc who treated Christopher Reeves, the guy who played Superman & broke his neck. John Jane, Jr is the head of pediatric neurology, there at the UVA, in Charlottesville, VA.

I think Hopkins will be our next stop, though. This sh*t's gotten quite old.

#113269 by KLUGMO
Wed Jun 02, 2010 6:36 pm
90 is correct about location. I have been dealing with the medical community for years and have learned many things the hard way. I have nearly lost my wife a few times. Diligence is your strongest ali. Your son shouldn't have excepted seeing the PA. There are good and bad and very good and very bad Doctors. When you find a very good Doc you will know it. Until then look in Northern Virginia for specialists. That area has top notch doctors in every field. I know a renowned Neuro Surgeon that I will give you his info. if you contact me off board. He has proven himself to me many times.

#113271 by 90 dB
Wed Jun 02, 2010 6:41 pm
Jane may be good, but he is very young, and he is a surgeon. What your grandson needs is a top-flight Pediatric Interventional Neororadiologist. Hopkins has the best. I would start by trying to get an appointment with Gailloud, he's the director of Pedi Neuro. ... %20Faculty

#113275 by philbymon
Wed Jun 02, 2010 7:52 pm
Thank you, 90db & Klugmo. I'll look that guy up, 90.

I just wanna meet with ONE sunnuvabitch who wants to CURE something, rather than "treat it" indefinitely!

#113276 by Chippy
Wed Jun 02, 2010 8:05 pm
Knowing your problem as I do I cannot offer any advice at all and even if I could I am not in your shoes. It's good that you talk about it man. So many people don't. I hope you find a solution soon.

Best regards as always.

#113289 by gbheil
Wed Jun 02, 2010 10:30 pm
Here's my end of the deal. Where I've worked for >10years we used to get 4 patients per nurse. Now it's 7 and they are MUCH sicker . I work my ass off and all I get is sh*t and complaints. I'm so f**k tired of selfish thankless assholes I am ready to give up nursing forever.

If your an asshole to a nurse who is over booked and doing there damnedest to keep someone else alive while you complain about having to wait for a coke remember that when you get to the hospital and all you get is 20 year old incompetence for a nurse ... it's your fault!!

This is not pointed directly at you Phil, though it may sound like it.
I hate the throw a pill at it lack of health care as much, maybe more than you.

But I'm tired of it.
I doubt I'll be a nurse much longer.
f**k it!

Wed Jun 02, 2010 11:10 pm
This has got to be one of the saddest posts ever put up here. You all think about it.

#113295 by philbymon
Wed Jun 02, 2010 11:34 pm
I can certainly understand your point, sans.

I can see that the powers that be in the health field are all working hard as they can to increase profits, &, as you know, therein lies the problem. It has resulted in understaffing, the hiring of incompetant office help at the lowest of wages they can get by with, & overwork & underpay for most ppl in your field. It has also caused this current dangerous trend of tossing pills at a problem instead of trying to CURE it.

In no way has anyone said anything different, least of all, me. And believe me when I tell you that my son is not one to make a big stink, as a rule. I doubt very much that he gave anyone any guff, deserved or not.

If it were me, I prolly wouldn't have given the PA a complaint, but I would have created quite a scene in the waiting room with the stupid twits who caused my son to have to sit there for three goddamn hours, only to NOT see the Dr he had the apptmt with.

But as a consumer, & as a patient, all I can say is this is seriously f*cked up.

We have here a 3 year old, who cannot speak for himself, in agony nearly every day, who, in lieu of being cured, has pills thrown his way to treat him indefinitely, instead of anyone actually attempting to FIX the problem.

That, sir, offends me to my core, & I cannot & WILL NOT accept it. Not from a Dr. Not from a nurse. Not from an insurance co. Not from ANYONE!

Somebody's going to show me some f*cking effort on behalf of this little guy, or I'm gonna start causing a whole lotta ppl a whole lotta pain, inconvenience, & any other troubles that I can, up to & including legal action, which also offends me to the core, but whatcha gonna do?

Somebody's just gotta DO something. Don't you think?

This poor little kid has had one day in the last 9 that he didn't barf & cry out in pain from migraines, so they tell me. His balance totally goes when he has these episodes, & they can occasionally disappear as fast as they come. Today was the worst I've seen, though, & I'm more than a little concerned.

#113298 by philbymon
Thu Jun 03, 2010 12:22 am
A little more info, for those of you who may be interested:

A cyst, like the one Jace has, is caused by a wrinkle in the membrane surrounding a section of the brain. This wrinkle effectively plugs up the membrane, so that the fluids that normally flow in & out of the area affected cannot escape. Thus, pressure builds up in the affected area.

In Jace's case, the affected area includes the brain stem, & the section of the brain that controls the finer motor skills. There is no finer motor skill than speach. Thus, Jace cannot talk. He can communicate with hand signs, but they are pretty limiting. He also has trouble handling things like forks & spoons. His balance is also affected. The pressure in his skull also caused some rather alarming growth in his head size. He has a big head, but it isn't all that noticeable. The shunt, if it works, will slow the growth of his head, & eventually he will be in a more normal head size range...if it works.

Dr Jane put in the shunt, which is basically a valve that is supposed to allow the fluids to escape into a tube, which runs down his neck & into his abdomen, where they are absorbed. Over the last 6 months or so, we've noticed that the tube in his neck sticks out like a finger in the skin of his neck every once in awhile. I suspect that the tube is crimped, & therefore, the fluids cannot be drained from his brain. The Dr doesn't seem to be too concerned about that, although he's had Jace go through an x-ray, an MRI, & finally, a CT Scan. The results of these things were all inconclusive. In other words - nobody knows if the shunt is even working at this point in time.

The CT Scan would have told us all that we need to know, supposedly, but we had to go through the x-ray & MRI before we could try the CT, thanks to the assholishness of our insurance company. Every test comes with a co-pay, &, at this point in time, Ian owes well over $6K, in spite of paying for coverage every goddamned paycheck.

The state of WV has decided that Jace needs special attention, & they require that he go to pre-school, even though he's only just turned 3. Of course, they've sent him home more days than he's attended, because he gets sick so often.

Since my schedule is more adaptable to change at the spur of the moment than either Ian's or my wife's, I spend a LOT of time with this child, & I am more than ready at the moment to start kicking some medical ass on his behalf. (Sorry, sans!)

Thos sort of cyst can also cause seizures similar to those seen in epilepsy. He is very sensitive to light & sound, as it is. It breaks your heart to see this child, who, on a good day, is so full of life, so active, & so happy; to be reduced to a tearful whining helpless being who can do nothing but hold his head in agony, & then throw up, & then sleep. I can see when it's coming on. His eyes droop. His mouth goes a little slack. Yet through it all, he tries his very best to keep moving, to keep having fun, to keep learning or playing or whatever he can to ward it off, only to fall into it all, over & over.

Makes you wanna kill somebody, but who can you blame? God? Okay, I could find it in me to hate a god that lets this happen to a little kid in my life. But it doesn't help much at all. All I can do is to ask - what can we do next? And make him as comfortable as I possibly can.

#113299 by Stringdancer
Thu Jun 03, 2010 12:48 am
Couldn’t help be sadden by your post unfamiliar with this disorder I looked it up and from what I understand there’s no established procedure or treatment for it, according to the medical web site most doctors shy away from this disorder and those who make an attempt to do something inevitable prescribe pills to alleviate the symptoms without addressing the root cause as you pointed out already.

Our healthcare system is profit based as you all know meaning doctors process as many patients with valid insurance coverage possible in any given day plus doctors get bonuses from pharmaceutical companies for proscribing as much as possible their products whether the patient needs it or not while proper treatments and cure take back seat in the equation.

I’ve run my own automated robotic installation and repair machinery business most of my life and my motto and policy are “If we don’t fix it the customer doesn’t pay” perhaps we should demand the same from heath care providers.

I hope your grandson as he grows stronger overcomes some or maybe even most of the terrible symptoms afflicting him also hope that the ongoing research on this disorder yield sooner rather than later results.

#113305 by gtZip
Thu Jun 03, 2010 1:44 am
I can't tell you how much that sickens me, sadens me, and brings on a boiling rage.
How do you pronounce the little guys name?
Last name montgomery?

I'm going to pray whether it offends you or anyone else reading this.

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