Pediatric Brain Aneurysm - 10 years later

[DigiSLR]

I'm tired of seraching the internet and reading everything I can on the subject, so I come to all of you for any guidance and support.

My son is just about to turn 13. He will be going to 7th grade this year and he wants to play football. He's 5'8", 145 lbs, and your typical soon to be teenage boy. I am trying to get his sports physical signed off on by a doctor and here lies the problem...

When he was 18 months old, it was discovered that he had a brain aneurysm. The Texas Childrens hospital repaired the aneurysm using platinum cois and medical adhesive. (Back then it was a brand new procedure, but now it's fairly common...) MY son had a few follow ups and was told that everything was fine. It was reccommended that MAYBE he should have an MRI or CT scan in a few years if there was any sign of complications.

Fast forward 10 years... there have been no complications, no problems, nothing abnormal... the family doctor will not sign off of his sprots physical and referred me to a pediatric neurosurgeon. The Neurosurgeons office won't do a "sports release" as its not something they do. My son's medical records are apparently on microfish at Texas Childrens but getting them has proven to be imposible. Their microfishe reader is broken and there is no ETA for repair.

As a father I don't want to have any chance for any injuries to my son due to his past procedure, but I don't want to blindly limit him for his entire life if I don't have to. I never though this would become an issue and now I'm having difficulty dealing with it.

Anyone have any advice, or might be able to point me in the right direction? (or if nothing else, thanks for just listening to me get this off my chest...)

[mmuhlenkamp]

Sorry to hear all that, I wish I new where to point you. So the doctor won't off on his sports physical at all? or maybe saying he can't do contact sports (like football unfortunately) but can do stuff like track or swimming?

Hope you can get it figured out

[brewercm]

Even if the neurosurgeon won't do a sports relief they should still send back a professional opion to your family practitioner so he can sign off on it. They should be reporting back to your family practitioner any way so the results are put into his records so there's an all inclusive record and everything isn't spread out all over the place.

Maybe a Dr is a member here that can answer for sure but that's how my records are handled.

[dmcantrell]

Originally Posted by DigiSLR

My son's medical records are apparently on microfish at Texas Childrens but getting them has proven to be imposible. Their microfishe reader is broken and there is no ETA for repair.

This seems to be the root cause of the hold up. This is an unacceptable situation, and a ridiculous reason for the delay. An organization can't simply stop analyzing records because their own equipment is inoperable. Can you just keep calling up the chain of command until you talk to a decision maker? Better yet, schedule a face-to-face appointment with one of the higher-ups through their assistant to talk about this issue in person.

[DigiSLR]

AS far as the records go... his mother and I divorced about 10 years ago. I only received custody of him 2 years ago. The procedure was performed at Texas Childrens hospital in Houston (I live in far North Dallas).

The family doctor won't sign off on his sports release becuase she isn't an expert on the pediatric aneurysm. That's why she referreed me to speak to a specialist.

I can't even dig anything up on the internet about long term restrictions or sports clearance after an aneurysm repair.

[Cajungaltx]

We deal with this every year with Tori. Open heart surgery at age 7 to fix ASD and abnormal pulminary valves.

They expect me to take her to TCH for a checkup every year... Ummm... No! The problem is fixed... It's repaired...

She gets the full workup every five years.. They did a patch and there is a 'slight' possibility her growth rate might result in her hole outgrowing her patch... Very... Very slight.

But get the ct/MRI - if it's the first release - cover your bases...

The neuro can write a simple letter to your doctor:

Did an MRI, treatment conducted < insert date 14 years ago> to repair whatever the medical name of his problem was - is still functional.

This part has to be specific:

The following activities are limited: none

Your doctor can fill out the release, and attach the letter from the neuro, regarding the aneurism...

We have a five year letter for tori.... I just use it every year for her physical...

The first year was a pita... Brad said that it's like telling them she broke her leg when she was seven...it matters not at all now... If it was 'repaired' why do we have to keep bringing it up... It's not an ongoing issue...

[kimberley]

Im so glad your son is doing well....

As a mother of a child who has a neurological issues I understand where your coming from....my 15yr old has Epilepsy and when he was first diagnoiced they told him he had to quit sport, he was an competive gymnast ( Olympic calibar), we were devistated, we went to see the neuro and she said quiting was crazy and quality of life sometimes outways worrying about what could happen, she is awesome...okay off my tangent...he didnt quit :)

But that being said....first I would make sure the issue is okay meaning its okay and safe for him to play an an aneurysm isnt anything to play around with and a big blow to the head is Im assuming dangerous ( for anyone) I would talk to his neuro and ask him if he feels its safe for him to play, get it in writting and then bring that back to the ped...MRI would be best!

I understand about not wanting to limit them, we havent tried to not limit our son with anything, the only we have told him no onis driving, which is the biggest thing in a boys life but its a safety issue....

good luck :)

[carrbowl]

Matt, are you comfortable with him playing at this point? Do you want to have a doctor sign off? For me, it's more about if the parents are comfortable...because everyone has different levels as to what is comfortable for them. My kids have a heart condition, same as my sister-in-law, She is not comfortable with them swimming because they may pass out. My feeling is, if they are going to pass out, they are going to...life goes on. I have several connections at TCH, if you want me to see if I can get someone to help you with records I can see what I can do. Give me a call 21-507-2162. I was just there today, and appears I'm hanging out there alot in the next month... : (

[Wil_Bloodworth]

Matt,

Find another doctor. There's got to be one who will sign that release. It's been more than a decade and he's fine. Best of luck to you!

Oh, how about getting a new family doctor and not mentioning the aneurysm... and then just getting a normal physical. That should do it. God knows the school doesn't care where the signed paper comes from!

- Wil

[Rson]

i can get you a fiche reader...pm me

[revjvegas]

Originally Posted by dmcantrell

This seems to be the root cause of the hold up. This is an unacceptable situation, and a ridiculous reason for the delay. An organization can't simply stop analyzing records because their own equipment is inoperable. Can you just keep calling up the chain of command until you talk to a decision maker? Better yet, schedule a face-to-face appointment with one of the higher-ups through their assistant to talk about this issue in person.

You may also want to go ahead and contact the Texas Medical board to see what, if any, help they can offer. At least they may be able to provide you with what your rights are as to compelling the medical facility to produce the records.

I would think that so long as the records have not been destroyed, they are obligated to provide you with a copy. Equipment issues are not your problem.

[Rson]

Requesting Medical Records - How to Request Your Medical Records

What hospital, I bet I know the records manager there. it is my profession.

[carrbowl]

All the above is why I asked if he thought he really wanted a doctors permission or was justing wanting to get a signature. You can easily get someone to sign the form, but if he wants to make sure his son is well enough to participate, that's another story.

And I agreed to help find someone to get him his records because there is not reason for his nightmare...he just needs to find "the right person" that gives a crap.

[DigiSLR]

Thank you to all who have replied.

I want to be perfectly clear, yes it has been a decade, but I have no knowledge of the workings of a brain, and I would NEVER put my son into harms way. I would love for him to play football, but I would never not tell a physican about the aneurism, nor would I get someone to sign the paper.

After many calls to TX Children's Hospital, I finally reached a HUMAN and was forwarded along to a manager. I pretty much raised Holy Hell and demanded the records, mentioned a few legal words, and said the lawyer word. IT wasn't more than 30 minutes later that I received a call back stating they were physically taking the microfish to a different hospital to have read and they were sending the records to my local family doctor.

Today I'll be calling my local doctor and finding out what the next step is. Maybe I'll get a quick clearance and all will be OK, maybe I'll need to go talk to a Pediatric Neurosurgeon, maybe I'll need to have an MRI or CT scan done again, either way, progress has been made.

Thank you all!

[carrbowl]

Go Matt!!! I hope you didn't think I ever implied that you would put your son in harms way. With my kids, there is a line as to what the doctors are willing to be liable for. My kids could literally die from their alarm clocks startling them in the morning and killing them. I'm not willing to surrender my sanity and their normal life to be frightened so much every day that they can't live. You have to find the middle ground that you as a parent can life with. If you felt you child was well enough to play sports and the doctors were just afraid to sign the paper for fear of getting sued, then I go around the signature. Those physicals are a waste of time and money as far as I'm concerned anyway.