Update on ds....Neuro appt...poss. seizues??

[Holly IN]

Ok

 

Here is the update:

 

First of all, this dr is so YOUNG. :glare: Couldn't figure out that I am, my boy's, his mother.

 

He doesn't believe ds is having seizures. He believes he is having aura migraine. Ok I get that.

 

So no eeg's are ordered but wants him eval for ADD through the schools. I turned him down on that. He said well he can send us to a testing facilities. I said we will see. ds and I decided on the way home that no we will not test for it but will find help naturally and learn about how to study and how to do better at focusing and concentrating. He is a big medicine pusher. Typically young dr from my experience are medicine pushers. Not that it is a bad thing....Just from experience.

 

So I am a bit perturbed with no orders of EEG. MRI is still on and he will look at it once he gets it. He will call us with results.

 

He firmly believes that the rolling of the eyes and the fluttering are due to tics which should go away once puberty is gone. Also the lack of focusing and concentrating with poor school work is due to possible ADD. He is almost 100% sure he is not having seizures even absence. He said he knows when he is doing the eye thing which is what my ds told him. He is aware of it but sometimes can't prevent it. :glare::glare::glare::glare::glare:

 

So what say you? Is this dr for real???? Dh and I haven't talked about this yet. He knows what the dr said but we haven't discussed it.

 

Also he put ds on Imitrex for Migraines. Dh is not thrilled about this medicine as it has numerous side effects which outweights the pros. All of us have migraines except my dd. All of ours are different from each other. However according to this neuro he said ds has the worse kind of migraine which is the aura migraine.

 

I am curious to what you all think.

 

Thanks!!

 

Holly

[sheryl]

Ok

 

Here is the update:

 

First of all, this dr is so YOUNG. :glare: Couldn't figure out that I am, my boy's, his mother.

 

He doesn't believe ds is having seizures. He believes he is having aura migraine. Ok I get that.

 

So no eeg's are ordered but wants him eval for ADD through the schools. I turned him down on that. He said well he can send us to a testing facilities. I said we will see. ds and I decided on the way home that no we will not test for it but will find help naturally and learn about how to study and how to do better at focusing and concentrating. He is a big medicine pusher. Typically young dr from my experience are medicine pushers. Not that it is a bad thing....Just from experience.

 

So I am a bit perturbed with no orders of EEG. MRI is still on and he will look at it once he gets it. He will call us with results.

 

He firmly believes that the rolling of the eyes and the fluttering are due to tics which should go away once puberty is gone. Also the lack of focusing and concentrating with poor school work is due to possible ADD. He is almost 100% sure he is not having seizures even absence. He said he knows when he is doing the eye thing which is what my ds told him. He is aware of it but sometimes can't prevent it. :glare::glare::glare::glare::glare:

 

So what say you? Is this dr for real???? Dh and I haven't talked about this yet. He knows what the dr said but we haven't discussed it.

 

Also he put ds on Imitrex for Migraines. Dh is not thrilled about this medicine as it has numerous side effects which outweights the pros. All of us have migraines except my dd. All of ours are different from each other. However according to this neuro he said ds has the worse kind of migraine which is the aura migraine.

 

I am curious to what you all think.

 

Thanks!!

 

Holly

 

Hi Holly!

 

Good report. First I would suggest that you keep a journal...or almost a "tallying" type of check system. I did this for my dd when she was having absence seizures. And, well, actually the n office gave me one and I changed the format to achieve same results. Everytime she had an a.s. I would mark it with a tally stroke. This went on for about a year.

 

Can your ds identify "how" he feels before he's having an episode? Does bright/flashing lights, odors/frangrances, tastes set him into symptoms?

 

aura migraine is a neurological issue and "they" experts now say that migraine sufferers benefit from some anti-epileptic meds.

 

Identifying absence seizures is VERY difficult. It took months before my dd's n actually saw one during a routine office exam. My dh didn't see one for 2 months after I told him. I homeschool from a desire....so because she's always been home with me "I" saw the a.s. first. They are subtle and sometimes almost imperceptible....almost is the key word. When you know what to look for, then it's obvious.

 

Well, I would recommend a second opinion from another leading neurol. Drive if you must to find one good, experienced and knowledgable.

 

Many times seizure patients suffer from behavioral issues....that's why he wants your ds tested. I AGREE with this.

 

If it were me, I'd:

1. TELL a good neurol that you want your son to have an eeg (ambulatory and sleep=deprived) a few months apart from one another. Our n leaves it up to us. We have an understanding that my dd will have both eeg's twice a year. No questions asked.

2. Understand the mri results

3. Check into another n

4. Test for add

5. Holly, if you "must" give your ds med/s, be at peace about giving it to him.

 

Search my recent posts for related topics. My dd who is 2 years seizure free this coming Feb was recently diagnosed with add, adhd and odd. It's VERY, VERY, (did I say VERY!!!) difficult to help these children without med/s. Her psychiatrist said that parents can achieve "some" of the same results w/o med/s, but it takes much longer...all the while your ds's brain is "learning" to continue in the "rut" of add or whatever it is.

 

SHe said with med/s it helps the brain to "retrain".

 

I DID N O T want to give my dd meds as she takes 2 right now to control her seizures. BUT, when she went from A student to B (it's not bad, it's referenced to show a drop) and she couldn't process, remember, etc anything then we KNEW we had to MEDICATE.

 

I gave her a "dark" hershey's chocolate bar today melted in milk for hot chocolate....they say dark, bitter chocolate and the caffeine content helps with add.........well, we had a GOOD day today after she consumed the choc milk this morning.

 

If I can, I'll give her flavored coffee to save the calories from a choc bar everyday.

 

HTH Holly. On a closing note, your ds may NOT have epilepsy. But, the doctors should rule it out. Also, keep in mind that it could develop later....probably not, but just know that just in case. Ask Asta, she has adult onset. I'm sure you'll hear from Asta, Ottakee, Laurie and others who are experienced with this as well.

[Mom2GirlsTX]

I know that my daughters neurologist, the first time I saw him, I was taken aback how young he was. I mentioned it to the pediatrician and she laughed and said he was like a young Douggie Houser, MD. However, I have grown to love and trust my daughters Neurologist and he is now Chief of the Seizure center at the Children's Hospital.

 

Given that seizures and migraines are in the same family, he might be right. I am very surprised about no EEG though. Perhaps he is wanting to do the MRI first? My daughters neuro wanted the sedated MRI before he did the EEG. After you have the MRI maybe you hsould insist on the EEG.

 

If he is right, and it is Aura Migraines, then it may take the Imitrex to stop them. I had migraines at an early age, and that none of the medicines would stop them. Imotrex was a blessing for me when it came on the market, by that time I had migraines over twenty years so I was glad to have it. However, there are other medications that can be taken daily (usually anti seizure medications given at a lower dosage) that can prevent the migraines from coming on in the first place.

 

My daughter has both seizures and migraines, so it can be frustrating I know. She is 9 1/2, just about to turn 10. The seizures are getting better, but the migraines still are plaguing her occasionally.

 

I can tell you that what your Neuro told you is similar to what my daughters neuro told me 7 years ago. I mean it has been a long time since we had that first appt, but pretty much I heard similar. At one time they were not sure if it was migraines with auros or seizures but it actually ended up being she was having both.

 

If you really don't feel comfortable with your neuro, perhaps you can find another one. I'm certainly no expert, but your neuro doesn't sound that different than mine in the beginning. Once the MRI was done, then things really got rolling on ordering more tests, etc.

 

I wish you well.

Edited November 13, 2009 by Mom2GirlsTX

[Mom2GirlsTX]

Oh, I also wanted to add that once we got the treatment going for her seizures we had her tested for ADD by the neuropsychologist. She was off the charts in the hyperactivity dept. I was so against ADD medicine. I was so wrong!! ADD medicine (Focalin XR 15mg day) is only thing that helps her keep focused. She tells me every morning, "Mommy, I need my medicine so I can think". Don't beat yourself up over your son needing medicine, we have all felt guilty as parents, but the meds really help our kids.:001_smile:

Edited November 13, 2009 by Mom2GirlsTX

[unsinkable]

I've been told absence seizures are easy to spot with an EEG. The patient can bring them on by hyperventilating. That's what happened with my dd.

 

My dd stares, seems as if she can't hear, and then describes it as "being lost in my thoughts" or "I was just thinking of something."

 

It still kills me.

[asta]

I've been told absence seizures are easy to spot with an EEG. The patient can bring them on by hyperventilating. That's what happened with my dd.

 

My dd stares, seems as if she can't hear, and then describes it as "being lost in my thoughts" or "I was just thinking of something."

 

It still kills me.

 

Yes and no.

 

There are baseline brain patterns for different pediatric epilepsies (the kind that kids can be born with) that are easily seen on EEG, whether or not the person is having a seizure *while the EEG is being performed*. There are other types of seizures that simply don't show up unless the patient has an event either when the electrodes are on their head, or within a certain time frame of the test (seizures leave a type of "echo" pattern on the brain wave).

 

Hyperventilation sometimes works, sometimes not. I've had it work on one EEG, and then not work at the same facility 3 weeks later.

 

It's all such a cr@pshoot. :tongue_smilie:

 

 

a

[Ottakee]

I had our neuro tell us that a positive EEG means there ARE seizures but a negative one does not mean that there are no seizures---just that there were no seizures (or signs of them) during the EEG.

 

He is convinced that my 14dd has seizures but only 1 EEG out of the many showed them. Another option is that they are deeper in the brain and not being picked up by the EEG.