Need to vent

rentascout

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Okay guys I am just posting this so I can get it off my chest, no need to reply to this one. I took my 11 year old daughter to the doctor yesterday because she has started to have seizures, and the doc ran a EEG on her to look at the function of her waves. Well the front tempol lobe cam back not good. He did not say it was epilepsy, but my family has a real bad problem when it comes to tumors. I have lost one brother, cousin (age 8), 2 Aunts and a grandmother to tumors and to be honest I dont know what to do.

It has been getting worse for about 6 months and we took her to KC to the children mercy hospital there and the doctor was in the room a total of 5 minutes and 42 seconds, look at her eyes and said nothing was wrong. My wife and I thought it was trash and he failed to do the eeg like he was suppose to. So we asked for another doctor to check it out and he found it. Wht bothers me is that the time between the last doctor and this one was 2 months. I know that does not sound like a lot of time but I know the earlier you find something the better chances you have to fight it off or kill it before it comes worse.

I am trying to get her back in ASAP for the MRI that the new doctor wants to look at now. He is trying to see if there is anything inside that is causing it. At this point it is a double edge sword; if there isnt anything in there then she might take the chance of having epilepsy for the rest of her life. But then again if there is something can they remove it safely? The part that is effected is the Mass memory cell, and any damage to that will cause a lost of both long and short term memory.

I am not sure what is to come of it, but I will continue to use this thread to keep the updates and my ability to vent under control. I know everything happens for a reason, or atleast in my eyes it does so I cannot do anything simply sitting here and worring. Lets go fishing.......

 

Steven Harris

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Out thoughts and prayers are with you and your struggle to find out and help what is wrong with your daughter.

My wife and I have gone through similar circumstances many years ago with our daughter. We were at first told nothing was wrong but with our insistance we managed to convice a nurse who in turn lined us up with a another doctor. He too thought nothing was wrong at first but at the end of that first visit became convinced and sent us to a specialist.

Our daughter had a severe and inopperable brain tumor which eventually took her life. Let's pray that whatever the issue is it will be diagnosed in short order and that a proceedure will be available for her help.

Keep us posted.

 

hyena429

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My thoughts and prayers to her and all of your family....And that is a scary thing..We allways hope the doctor does the right thing..But you can never trust them totaly..My cousin best freind hit with a brain tumor...Inoperable...Gave him less than 6 months too live.....Its now 15 years later and he is still going...He lost some movement and such...But he still doing pretty good for some one who was suposta be dead 15 years ago..Docs cant explain it..And vent all you want!!..And any time you wanna chat about it...let loose.

Enjoy a bit of fishing my self...Allmost time for me to get a new license.

 

Boss1Ray

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I am sorry to hear your daughter is experiencing seizures.

I went thru a similar situation with a very good friend's daughter. I finally got so frustrated I asked to step in for the family.

The doctor kept putting off any real testing and trying to explain to patient and family that the seizures were not real but what they called "psuedo-seizures".

I became irritated and requested a meeting with doctors and family. After much talk and frustration, doctors finally agreed to perform some serious monitoring/testing. After one full week of monitoring and testing including EEG and MRI, they agreed that the seizures were indeed occurring. They adjusted her meds and now she is rarely having them any more!

I hope and pray your daughter is well soon.

Ray

 

Detector

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Hang in there rentascout. As someone who works in a hospital, only a network administrator but I see and hear lots and have made good friends with many professionals, I can give a little advise.

Never take the prognoses of one doctor. Always get as many other opinions as you can. Remember, there is a reason it is called a medical practice. All doctors are going through a learning process themselves. Scary thought I know, but that is the way it is done. They see a patient and if they don't know for sure they take a guess and learn from the results.

Doctors often need to rely on other professionals. In the case of an MRI, for example, your doctor is not qualified to take or read those results. A radiology tech will take the imagesradiologistgist will view/read those images, the doctor reads the results determined by the person who read the imagUnfortunatelyntly you hear a lot about hospitals making mistakes in giving the wrong stuff to the wrong patients and the likes? this is why. Today a simple process can pass through many hands before it gets to you. Gone are the days when your doctor did it all.

Don't be so alarmed when you don't get seen by your doctor personally or for a very short meeting. It does piss you off because you're paying extremely good money to see a doctor you might only see briefly if at all. They see so many patients theassistantsstents to do most of the gathering of information they will then use to decide what happens next. Again, I know it isn't very comforting to wait hours only to briefly see your doctor, but it has become pretty common, and your health care is still being looked at pretty throughly.

Lastly, that doctor works for you not the other way around. People are used to being told what they will do by their "professionalfessinal" they just take it as their only logical option. You have the right to tell that doctor what you want done. Don't be afraid to ask questions when you don't feel you're getting what you need or what you should be getting. Ask them why they are doing what they are dois. It ios your right to know and either tell them what you want, or don't want, done.

 

71_badmach

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As a father of a 7 year old, you have my utmost sympathy and I can't add much more than what the others have said here... I know for me prayer would offer the most comfort while going through this, for you, your family, and for the professionals trying to help. Also, just another great reason to belong to this community of friends on this forum... Thanks guys!

 

Don65Stang

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My prayers go up for your daughter and family. That is a heavy weight to carry & then when the docs act all stupid...well rant away, I get it & understand the frustration.

 

whitesoc

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My thoughts go out to you and your family......as a parent...I don't even want to imagine a situation like that. Feel free to vent anytime!

 

not2old

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Our good thoughts go out to you and family. As parents and grandparents we know when something is not right. So glad you questioned the 1st doctor and moved onto another before more time was lost.

 

Tnfastbk

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:angel: Good luck :angel:

 

droptop73

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I don't know what to say. Keep advocating for your daughter until you get good answers, whatever the answers are. I am praying all works out for the best.

 

OLE PONY

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It sounds like you have done the right thing so far to get your daughter healthy again. Keep pursuing the best answers to your questions from the professionals. Lot of good advice here to. Above all spend plenty of quality time with your daughter and family! My prayers are with your daughter, you, and your family.

 

Go Time

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I will pray for you and your daughter, I don't like to give advise because I'm not qualified to talk on most matters. My oldest son (21) Just finished radiation treatment about 6 weeks ago at the Cleveland clinic for a malignant brain tumor. He had movement problems in his left leg and thought it was a pinched nerve. He was doing the chiropractor thing but it was getting worse. In July this past year he married the daughter of a pastor in Ft Wayne, Indiana. Through this church he met a man who was a doctor in training at a neurologist group. This man got him right in in November. It went like this Tuesday Nov 8 they met with the Neurologist, He sent them for MRI's on Wednesday the 9th, they met with the Neurologist again on Thursday the 9th, and we all met with the Surgeon on Friday the 10th. The tumor was removed Nov 21st and he had 6 weeks radiation in December an January. He is doing very well and we are praying that this will be the end of his treatments. We actually go back to cleveland clinic this next Wednesday the 21st of March for another MRI to see if there is any further treatment needed. After all that background (and I apologize for all of that) I can only suggest you start hitting your contacts or calling some of the Neurologist in your area just to start ruling out things out. He just called this guy he had met and asked his opinion and this guy got him right in. I will pray that you find a doctor that will take the needed steps to rule out some of these things and find solutions.. and believe me when I tell you ,I will pray. please message me with updates on your progress. Dennis

 

marks73

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Guys, I ran calls as an EMT for years. And the first thing I learned was that a man that got through medical school averageing a "D" is called DOCTOR! The reason I got into it was to not be one of the people not knowing what to do and have to wait for those that did. Saw it in a lot of faces over the years and yes, let some of them down. Learned this:

#1 God decides if we are knowlegeble and skilled enough to save them.

#2 Can't change rule #1

NEVER, NEVER, NEVER think physicians are a higher life form. If you don't like what you hear Please keep asking until everyone agrees and then......

 

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My prayers and thoughts to you and your family, be persistant untill you are satisified all involved in the medical field are doing what they need to do.

AJ

 

rentascout

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First and Foremost, Thank all of you very much, your kind words and thoughts are truly heard and will not be forgotten. It is a very crappy deal and that first doctor will get his, and I just hope no more kids go through him and have to deal with the headache of no answer. The worst part is watching it unfold and not being able to do anything besides watch.

I will keep this post open in hopes to only give you guys better info in the future. Again thank all of you for your support and I know my daughter is safe and I pray she stays that way.

 

rpmcarter

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I'll be politically uncorrect here... I dont have any "good thoughts" to offer. I don't believe in them.

We will pray!!! God Bless your child!

 

sm3570

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:(

My daughter is 7, almost 8. She's the center of my universe. I can't imagine what you are going through. It's times like this that we all need to be thankful for what we have and the time we have with those we love.

I'm not big on asking the "big guy" for stuff, but I'll ask him to help your family out.

 
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