What to do next...for my dd

[sheryl]

My dd continues to have problems and she takes it out on my dh and I. Honestly, if she continues like this I shutter to think where she'll end up with poor choices.

 

Her behavior is so wild and extreme...opposite sometimes.

 

Here's my real question.

 

We are pleased with our current pediatric neurologist and her child psychiatrist. There was a short stint with the first neurologist...this doctor was not proactive enough and not sure if she was homeschool friendly, so we left. As I said the 2 doctors we're currently seeing for my dd are great. My 11 1/2 yo dd will be seizure free 3 years this Feb! As a result she has behavioral issues and the ped psychiat has prescribed meds.

 

Right now there are no plans to leave the practice of either dr, but I listened to a little local community show featuring another ped neurologist and I'm very interested in speaking with him for a 2nd opinion.

 

Will insurance cover a 2nd opinion? Would I have to have her current records shared from current neurol to this dr/2nd opinion? How would that make her current n feel? Would this 2nd op dr even be interested? Is this a good thing to do? She does have controlled epilepsy (medicated). But, her behavioral issues are NOT.GOING.AWAY and this dr looks at the WHOLE.PERSON when diagnosing and treating. I agree with that. Instead of only looking at the clinical.

 

I'm wondering if he'd see things in a different light and after appropriate tests given, he may "find" the "root issue".

 

Is this wishful thinking on my part? What do you say? Sheryl <><

 

I'm really at my wits end and don't know what else to do. My dd needs help.

[Ottakee]

I would seek a 2nd opinion. We did and our neurologist even refers us on to someone else about every year or so for a 2nd opinion as he admits he doesn't know all.

 

That said, I will climb on my soap box again and ask if the pdoc has really considered bipolar for her. The extremes of behavior are just SOOOOO common with bipolar. Treatment can be difficult and often requires 1-2 mood stabilizers and an anti-psychotic (and often no meds for ADHD at least in the beginning) but life can be so nice when they are stable----both for the child and the family.

 

The insurance should pay. As to records, there might be a copying fee, sometimes not. You can get results of any tests right from the place you had them done at.

 

Another option might be to test her for genetic/mithocondrial disorders as ones like POLG-1 have seizures, behavioral issues, and other things very common with it.

[Tiramisu]

We have sought 2nd opinions and insurance always covered them with a referral written by our pediatrician, just like any other specialist visit.

 

I have both shared information and held back information from a previous specialist. I share all lab work and radiology images and reports because it speeds the process along. I never walk out of a radiology center without a CD or films and submitting a request for the report to be sent to me. I also have learned to request all lab work results sent to me. Then I can keep a file of all information to bring to any new appointments. As far as holding back information goes, if I want a specialist to approach my dc in an unbiased way, I may not share the opinion of an earlier specialist, at least right away.

 

FWIW, I also saw several surgeons when it was becoming clear that a dc needed major surgery and insurance covered them all. I shared all films and radiology reports but I didn't tell each surgeon what the other surgeons said because I was looking for, first, an unbiased consensus that the surgery was really necessary and, secondly, to know all my options for the type of surgery. This process could make your head spin, but it allowed my family to face the risks of surgery knowing we were making the absolute best choice.

[sheryl]

I would seek a 2nd opinion. We did and our neurologist even refers us on to someone else about every year or so for a 2nd opinion as he admits he doesn't know all.

 

That said, I will climb on my soap box again and ask if the pdoc has really considered bipolar for her. The extremes of behavior are just SOOOOO common with bipolar. Treatment can be difficult and often requires 1-2 mood stabilizers and an anti-psychotic (and often no meds for ADHD at least in the beginning) but life can be so nice when they are stable----both for the child and the family.

 

The insurance should pay. As to records, there might be a copying fee, sometimes not. You can get results of any tests right from the place you had them done at.

 

Another option might be to test her for genetic/mithocondrial disorders as ones like POLG-1 have seizures, behavioral issues, and other things very common with it.

 

 

I was planning on searching as I know you've asked in the past about bipolar and I could've sworn I addressed this already, but maybe not....

 

Pdoc is that pediatrician? Her ped does NOT prescribe her meds. Her neurol. prescribes and her psychiatrist. It's just been recently with a track record from the psy that the n will now prescribe those behavioral meds.

 

Her psy insists she does not have bipolar. This psy comes with about 30 years of medical experience. With that said, I was watching a tv spot today (rare for me to watch tv) and their was a local ped neurol being interviewed. He went on the say that so many of these conditions and their symptoms "overlap" and/or mimic one another. That even other conditions mimic seizure type symptoms.

 

So, this got me thinking about my dd's issues. Maybe she does have bipolar and she's been misdiagnosed...I just don't.know.anymore!

 

She had a sleep study (no, not eeg) the big overnight sleep "study" last Mon. Our f/u with n is Dec 6 and we'll learn more then.

 

We are suspecting that she is being overly medicated on one b/c her blood level comes back high. The other med is too low and we can increase that.

 

:confused:

[Ottakee]

This is really tough as there are SO many things that it could be and likely it is a combination of things that all interplay.

 

Pdoc is the psychiatrist. If the doctor is older (which assuming when you say 30 years of experience) then they might not be up on the newest research on bipolar in kids. It does NOT look like the typical adult bipolar that most of us know as "bipolar".

 

I would go to http://www.bpkids.org and http://www.bipolarchild.com and look at the symptom checklists, etc. and see if this matches up. Of course, no child will have all of the symptoms but it can help you figure it out. The book, The Bipolar Child has a checklist you can print out and take along to the doctor.

 

There does seem to be some overlap with bipolar and seizures. Certainly you can have one and not the other but there is some sort of connection since the top meds for bipolar (all but lithium) are seizure meds.

 

Blood levels are good to follow as well as too much of a med can be just as bad or worse than not enough. They all inter play and then add in puberty and we were at the lab about every other week for a while:glare:

[sheryl]

This is really tough as there are SO many things that it could be and likely it is a combination of things that all interplay.

 

Pdoc is the psychiatrist. If the doctor is older (which assuming when you say 30 years of experience) then they might not be up on the newest research on bipolar in kids. It does NOT look like the typical adult bipolar that most of us know as "bipolar".

 

I would go to www.bpkids.org and www.bipolarchild.com and look at the symptom checklists, etc. and see if this matches up. Of course, no child will have all of the symptoms but it can help you figure it out. The book, The Bipolar Child has a checklist you can print out and take along to the doctor.

 

There does seem to be some overlap with bipolar and seizures. Certainly you can have one and not the other but there is some sort of connection since the top meds for bipolar (all but lithium) are seizure meds.

 

Blood levels are good to follow as well as too much of a med can be just as bad or worse than not enough. They all inter play and then add in puberty and we were at the lab about every other week for a while:glare:

 

Well, I can tell I need a 2nd opinion. The Pdoc is very experienced and she sees tons of kids which tells me she sees it all and all the time. I've asked her more than once if bipolar is a possibility and each time she says an empathic no. Still, it may be prudent for us to seek another opinion.

 

Yes, there's overlap with bipolar and seizures, autism and seizures and etc etc. The common thread are seizures. And, they can be manifested physically, psychological, etc.

 

WOW....I'm just overwhelmed. Prayfully her issue will be apparant so we can treat it, properly. Thanks!!

 

I was planning on searching as I know you've asked in the past about bipolar and I could've sworn I addressed this already, but maybe not....

 

Pdoc is that pediatrician? Her ped does NOT prescribe her meds. Her neurol. prescribes and her psychiatrist. It's just been recently with a track record from the psy that the n will now prescribe those behavioral meds.

 

Her psy insists she does not have bipolar. This psy comes with about 30 years of medical experience. With that said, I was watching a tv spot today (rare for me to watch tv) and their was a local ped neurol being interviewed. He went on the say that so many of these conditions and their symptoms "overlap" and/or mimic one another. That even other conditions mimic seizure type symptoms.

 

So, this got me thinking about my dd's issues. Maybe she does have bipolar and she's been misdiagnosed...I just don't.know.anymore!

 

She had a sleep study (no, not eeg) the big overnight sleep "study" last Mon. Our f/u with n is Dec 6 and we'll learn more then.

 

We are suspecting that she is being overly medicated on one b/c her blood level comes back high. The other med is too low and we can increase that.

 

:confused:

 

[sheryl]

We have sought 2nd opinions and insurance always covered them with a referral written by our pediatrician, just like any other specialist visit.

 

I have both shared information and held back information from a previous specialist. I share all lab work and radiology images and reports because it speeds the process along. I never walk out of a radiology center without a CD or films and submitting a request for the report to be sent to me. I also have learned to request all lab work results sent to me. Then I can keep a file of all information to bring to any new appointments. As far as holding back information goes, if I want a specialist to approach my dc in an unbiased way, I may not share the opinion of an earlier specialist, at least right away.

 

FWIW, I also saw several surgeons when it was becoming clear that a dc needed major surgery and insurance covered them all. I shared all films and radiology reports but I didn't tell each surgeon what the other surgeons said because I was looking for, first, an unbiased consensus that the surgery was really necessary and, secondly, to know all my options for the type of surgery. This process could make your head spin, but it allowed my family to face the risks of surgery knowing we were making the absolute best choice.

 

Yep, that's our technique too....so, I do understand. You do not want to

"plant" any ideas...you're seeking fresh ideas that are unbiased. That's how we approach meetings too. Like you, I do keep copies of medical records when I remember to ask for them.

 

There is alot of sorting out especially when it's a s.n. case. Thanks.