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        New Message Board Archives >> 2007 General Board Posts >> Need suggestions/help (Updated)
        
(Message started by: catlind on Mar 9^th, 2007, 8:27am)

Title: Need suggestions/help (Updated)
Post by catlind on Mar 9^th, 2007, 8:27am

Does anyone have any ideas on how to get a psychiatrist to learn about clusters?

We have another meeting today, and I'm bringing the brochures that are for friends/employers etc. but yesterday this guy really got under my skin by telling me "Don't go putting labels on him, we'll get an MRI done".

Meanwhile, his pediatrician has already diagnosed clusters based on an attack in her office, and one of her nurses has a husband with clusters, so she's very knowledgeable about them as far as any pediatrician goes.

They are trying to make Alex work through 'assignments', group sessions and therapy sessions when he is getting hit, and it is, of course, making his life hell. He reacts much the same as any of us would, and gets beligerant and defiant, and down right mean - they of course aren't doing anything to help the headaches, and because of his behaviour, they have him on a lock down - I can't sign him out of the hospital without a court order.

He needs to be in the hospital to get help for being severely depressed and suicidal, but they aren't acknowledging that some of his behaviour is because of his head pain.

I am at my wits end with this, it's hard enough to try and get him help for being suicidal, let alone having to fight the psych staff over acknowledging a diagnosis his pediatrician gave.

I am seeing the ped. today, and will talk to her as well, but if any of you have any idea on how to educate the staff I would be thankful. They just assume I'm an overprotective parent, and have said - and I quote - "you love him too much".

Please help....

Cat

Title: Re: Need suggestions/help
Post by Brewcrew on Mar 9^th, 2007, 8:31am

Cat - The first two words that jump into my mind, without thinking it through, mind you, are "new psychiatrist."

It sounds like more of a personality disorder on the psychiatrist's part.

Title: Re: Need suggestions/help
Post by nani on Mar 9^th, 2007, 8:34am

First words I thought of were...
Lawsuit.
They are denying him treatment for a diagnosed medical condition? They are asking him to "work through" an attack? See a lawyer asap.
BIG hugs to you, Cat.

Title: Re: Need suggestions/help
Post by ClusterChuck on Mar 9^th, 2007, 8:39am

Where is that 2 X 4 that you always threaten me with? JUST to get their attention, mind you ....

Seriously, though, how about bringing the pediatrician in to the meeting with the psycho shrink? Possibly the pediatrician can get thru their thick skulls?

Hang tight, dear

Chuck

Title: Re: Need suggestions/help
Post by Gator on Mar 9^th, 2007, 9:32am

I've read where some research doctors think placebo controlled trials for CH are unethical because of how painful it is.

If they are denying medical treatment for a diagnosed condition - especially CH, that is cruel and inhumane treatment.

Try what Chuck said first and if they still refuse to listen then sue their happy asses.

If you can, I would get a new shrink.

Title: Re: Need suggestions/help
Post by The mad viking on Mar 9^th, 2007, 9:32am

Cat my dear friend

Something here tells me you should get a neurologist to diagnose Alex "ch"I have a hard time believe a ped or a brainwasher are capable to do that,Beside that i am still speachless and sending all the vibes and good thought me and Bente can muster from here.

Svenn

Title: Re: Need suggestions/help
Post by karma on Mar 9^th, 2007, 10:09am

Got an I Pod or a laptop?
If so down load some of the U tube videos and take them along with you. If not try and get online during the meeting and cruise on over here.

Title: Re: Need suggestions/help
Post by Gator on Mar 9^th, 2007, 10:39am

You could also inundate them with stuff like this:

http://www.achenet.org/news/older/121999.php

ACHE Headache News, December 1999

Quote:

Cluster headache is uncommon in childhood but does occur and is easily misdiagnosed, according to a case report appearing in the December issue of the Archives of Diseases of Childhood. The report describes the symptoms seen in four children, two boys and two girls, who developed cluster headache-like disorders between the ages of 6 and 15. All of the children had a history of thrashing around or bizarre behavior during attacks, and the two boys had been expelled from school. The behavior disturbances distracted attention from the headache complaint and probably contributed to a delay in diagnosis that ranged from a few weeks to 6 years. The authors state that cluster headache in children may be mistaken for pseudo-seizures or some type of behavioral disorder, and that a history of thrashing around, combined with headache, should prompt a search for other features suggesting a cluster headache-like disorder.

Title: Re: Need suggestions/help
Post by deltadarlin on Mar 9^th, 2007, 2:17pm

How old is Alex? Does he have a patient advocate available to him? Can you get his pedi to issue a letter confirming the diagnosis? Barring any of this, it is against the law for them to deny him medical treatment and/or force him to comply with treatment when he has another medical condition.

You/Alex need an attorney to represent his rights.

Title: Re: Need suggestions/help
Post by Melissa on Mar 9^th, 2007, 2:24pm

Oh Cat, this must be just killing you right now! I so wish I was there to help you out, I'd put some logs on the fire to help him any way I could!

Big hugs and hopes that things turn his way rightly quick!

love u,
mel

Title: Re: Need suggestions/help
Post by Karla on Mar 9^th, 2007, 3:46pm

I know that when I was in the phyc ward that they would not give me any narcotic injections for pain for migraines but they had no problem with giving me imitrex for ch. I have signed forms giving my neuro, my dr, and my shrink permission to talk to eachother. This keeps them all on the same page. I think my dr and shrink have gotten the point of how severe the ch pain is when I have had torn rotator cuff repaired, gallbladder removed, ovary removed because the tube twisted 3x and killed it. I pointed out that despite how severe the pain was for these 3 insidents it was not as severe as my ch pain. I explained it was the ch pain /disease that made me suicidal. I would have your dr write a letter or call and talk to the phyciatrist and interceed for your son. Make sure the dr tells the shrink that he can not function when getting hit. I will be praying for you and your family.

Title: Re: Need suggestions/help
Post by Peppermint on Mar 9^th, 2007, 4:36pm

on 03/09/07 at 08:27:29, catlind wrote:

xxxsnipxxx
They are trying to make Alex work through 'assignments', group sessions and therapy sessions when he is getting hit, and it is, of course, making his life hell.
xxsnipxx
They just assume I'm an overprotective parent, and have said - and I quote - "you love him too much".

Morons! Tough love will not heal cluster headaches.
>:(

If you can do it, I agree that you might need a lawyer on your side. It's absurd that they would ignore a legitimate diagnosis. It might be best to to have the pediatrician contact them directly first, to avoid having to go the legal route.

But - if they insist on remaining ignorant, which to this point it sounds like - you have to whip out the 2x4 and get the lawyer. Much as you might hate it, in this day and age people like that make lawyers necessary.

Wish I knew someone out there I could put you in contact with directly. Anyone?

Title: Re: Need suggestions/help
Post by E-Double on Mar 9^th, 2007, 6:34pm

contact Sheftell..........He's a psychiatrist

Title: Re: Need suggestions/help
Post by Charlie on Mar 9^th, 2007, 6:46pm

It isn't easy getting MDs to consult on some things. I'd keep at them and get a little more serious with them each time until they do. If not, it's time to make it known that your next step will be a lawyer.

Maybe that will make them squirm and pay some attention. They like to keep things simple only for themselves.

Of course the psychiatrist that I saw blew his head off about 40 years ago..... :o

Charlie

Title: Re: Need suggestions/help (Updated)
Post by catlind on Mar 10^th, 2007, 2:15am

We had a family counselling session today with the staff on the floor, and I had an appt with his pediatrician.

The therapist that worked with us was excellent. She took down all the info I told her and put the handouts on clusters into his records. His pediatrician (damn but I love that woman - she is AWESOME) sent over a diagnostic sheet along with recommended treatment options for the interim until he can get in to see a headache specialist - not just a neuro.

They have gone ahead and changed his meds to what she suggested and they added in a preventative. I believe the prevent is periacton, and I can't remember the name of the 'abortive' - think it started with a B, I'll have to check on it and get the name written down tomorrow. He has a heart murmur and a mild mitral valve prolapse so she wouldn't let him use triptans until he has a full evaluation by a pediatric cardiologist here in Omaha - his last evaluation was done in Upstate NY 4 years ago. I think it's a combination anti-emetic analgesic that she recommended. It won't work long term, but at least for the short term it will help take the edge off. They don't have Oxygen on the floor, but they let me bring in my small tank and they are in the process of inspecting it and when it passes hospital inspection they will fill it and keep it at the nurses station for him.

I can't ask for more than that under the current circumstances. I just don't want him to have to deal with his head on a 24/7 basis when he's trying to deal with depression as well. He did say that he feels his depression is in part caused by the headaches. This is now the 2nd year in a row that he's started having these headaches - same timeframe, same pattern, tearing eye and nasal congestion and his words "feeling like my eye is going to explode and hurting so bad I feel like I can't breathe".

His pediatrician wrote out the diagnostic sheet so that he could get the headaches at least partially addressed while he's in the hospital; she was clear that she isn't putting it as a diagnosis in his charts yet - she wants him evaluated by a headache specialist and she doesn't have the MRI results yet. I was actually pretty happy she did it that way. I don't want him to have that label if he doesn't have to have it. This will allow him to have some manner of treatment for his pain while he's inpatient, but won't lock him into a CH diagnosis so that no one looks any further at his situation.

All in all he seemed to be doing much better when I saw him tonight. I am emotionally and physically exhausted, and I appreciate all your messages, prayers and support.

This family is great :)

Cat

Title: Re: Need suggestions/help (Updated)
Post by ClusterChuck on Mar 10^th, 2007, 2:58am

GREAT news, Cat, m'luv!!! He finally is at least getting something for the beast, if that what it works out to.

Remember, I am just a phone call away, if you or anyone needs to talk. I remember the pain and agony and self accusations I went through, when my daughter tried it. It has now been about four years, and things HAVE improved a lot. I am sure, they will for you too.

Keep up YOUR strength, and quit blaming yourself. As a family, you WILL work through this. I have faith in all y'all in getting through this.

Chuck

Title: Re: Need suggestions/help (Updated)
Post by LeLimey on Mar 10^th, 2007, 4:30am

Well if they want statements from other ch'ers as to how depressed WE all get you could have 100's by this afternoon. Sometimes I despair of some doctors - can they not see that insufferable pain will depress people?

I know its not the sum of it but when you can't think straight you can't deal with anything else either. I'm so glad you are managing to finally get him some help but it is awful that its been such an uphill struggle for you and what terrifies me is this happening to someone else who hasn't got such a strong and ch educatedadvocate as you.. it just doesn't bear thinking about. :-/

Lots of love to you and yours Cat
Helen xxx

Title: Re: Need suggestions/help (Updated)
Post by Melissa on Mar 10^th, 2007, 7:36am

Thank you for the update Cat, I'm so glad that the ball is rolling now on getting Alex the help he needs!

BIG hugs!

Title: Re: Need suggestions/help (Updated)
Post by Mastifflvr28 on Mar 10^th, 2007, 9:53am

Still sending mass amounts of vibes from here,
love ya's Cat and fam,
Mast

Title: Re: Need suggestions/help (Updated)
Post by minnie on Mar 10^th, 2007, 12:37pm

My prayers and vibes going out to Alex and the whole family.When I first read this I couldn't write what I thought should be done.All the things I'm sure went through your mind but violence won't help in this siuation >:( . sounds like things might start to be going the right way.Anyone dealing with cH is awful but kids :'( that just breaks the heart.I'm here if you need to talk.I think you have the # otherwise I'll I.M. It to you.i'm here anytime.......
Love to you all,
minnie

Title: Re: Need suggestions/help (Updated)
Post by BarbaraD on Mar 10^th, 2007, 2:14pm

At least the doc didn't say "take two aspirins and call me in the morning." ;;D

Seriously, glad he's doing better and fingers crossed he will get more better and more better.

Hugs BD

Title: Re: Need suggestions/help (Updated)
Post by Callico_Kid on Mar 11^th, 2007, 4:58pm

Requesting special prayer for you both tonight at church. Hang in there. We're all behind you.

Jerry

Title: Re: Need suggestions/help (Updated)
Post by catlind on Mar 11^th, 2007, 5:21pm

Update:

I'm at the hospital with Alex again all day today. He is doing MUCH MUCH better.

They had decided to put him on imitrex, but I spoke with the nurses and told them Alex has a heart murmur and a mitral valve prolapse, so they are going to wait to see the doctor thinks it's safe to try while he's in hospital - that is the safest place if they are going to try IMO.

In the interim they have started him on amatrytaline (sp) Elavil which is a good sign they are listening to his pediatrician since that is one of the first drugs they try.

Hopefully all with go well and he will be home with us on Monday :) :) :)

Thank you everyone for all you support, it means more to me than you know :)

Cat

Title: Re: Need suggestions/help (Updated)
Post by LeLimey on Mar 11^th, 2007, 5:35pm

You and yours mean more to us than you know Cat, you'll be in our thoughts and all well wishes heading your way until you have all the answers and results you need
lots of love
Helen xxx

Title: Re: Need suggestions/help (Updated)
Post by ClusterChuck on Mar 11^th, 2007, 6:11pm

WOOHOO!!!!

Fantastic news, Cat!!!! I am SO happy for you!!!

It is about time they started to listen to reason, and act responsibly!

My prayers are still headed out to you!

>Happy dancing !!!<

Chuck

Title: Re: Need suggestions/help (Updated)
Post by Charlie on Mar 11^th, 2007, 6:59pm

Ah.....better. Much better http://e.deviantart.com/emoticons/b/boogie.gif?SSImageQuality=Full

Charlie

Title: Re: Need suggestions/help (Updated)
Post by BB on Mar 11^th, 2007, 7:03pm

What a challenge you are facing Cat. Its hard to make yourself heard and understood sometimes but you are doing a great job and I am so happy to hear that Alex is doing better.

Sending vibes and prayers and a big hug.

Annette

Title: Re: Need suggestions/help (Updated)
Post by lionsound on Mar 11^th, 2007, 9:30pm

thank you so much for keeping us updated. Cat, you are doing a great job.:)

Title: Re: Need suggestions/help (Updated)
Post by alienspacebabe on Mar 11^th, 2007, 11:13pm

[smiley=hug.gif]