Blood tests and Seizures...

[myrose]

The neuro's nurse practioner called today....The test for the amino acids needs to be REPEATED! Apparently the blood was froze by mistake!

We are going to wait a bit..my daughter has been through enough and the blood thing was HORRIBLE for her.

The rest of the blood tests ordered that were related to the seizures came back okay.

The pandas test had to be sent out so thats not back yet.

 

The name given for my daughers seizures is: Complex partial seizures occuring in the right TEMPORAL and PARIETAL LOBES.

 

She remains on topamax 15mg, they want to increase to 25mg but until we see a new neuro I am too scared to increase. Her tics (if or not related to the seizures) are pretty much gone for the most part. Its really weird especially considering how BAD she was with the eye and head thing that started out of no wheres.

 

After the Pandas test comes back I am having her records sent to a new neurolgist. My husband and I talked it over and given the inconsisitencies in this whole ordeal, we will feel better hearing or might I say having another new neurologist verify all this new found seizure activity.

 

Although true...I am finding it harder and harder to believe that my daughter has been having seizures this whole time and not I, my husband, her teacher or friends and family saw any of this kind of activity at all. I know it could come down to a 10 second stare and thats it but we need assurance.

 

Not to mention that the 1st neuro never mentioned this at all.

 

Anyhow things are great here! My daughter is happy again and so far it doesn't seem we are having any problems with the topamax.

Just wondering if anyone could comment on the dose part for me....If topamax is given to stop seizures (and the dosing for this is obviously different for everyone)

then how do they know when the seizures have stopped? In other words wouldn't an EEG have to be repeated every time a dose increase is done to see what dose actually stops the seizures. If this is not done than someone could be taking a higher dose than needed??????

I am confused with this. Especially so being that my daughter cannot tell us when or if she is having a seizure and we can not even tell.

 

Any help in understanding with this would be great.

 

Hope everyone is well and doing good!

[peglem]

Well, an EEG cannot really tell if your child is having seizures or not, except for during the time she is hooked up to the machine. Sometimes seizure activity is so deep in the brain that the surface electrodes don't pick it up. We did an 8 day 24/7 VEEG , and my daughter never had one of the episodes that we thought were seizures and showed no seizure activity, although the EEG (according to her neurologist) was consistent with someone who does have seizures. It contained alot of unusual spikes and waves, but nothing that followed a seizure pattern. I liked that the neuro said, "I don't treat EEG's I treat the patient." We treated for seizures with lamictal, and very gradually increased dosage until we were no longer seeing those episodes (that probably were seizures). The eeg is just a tool that can confirm a seizure, if it occurs during the eeg, but it can not rule out seizures. Its usefulness is limited. My advice would be if your daughter is doing well on the dose of meds she is taking now-stay at that dosage. If she is still having little seizures that nobody notices and don't seem to interfere with her functioning...well, you might pick those up on an eeg, but, especially if you are uncomfortable increasing meds, you don't neccesarily have to treat them. Find a neuro that you are comfortable with, who answers your questions.

 

As far as the PANDAS testing, are you talking about titer checks? I hope somebody will correct me if I'm wrong, but I believe high titers only indicate that there has been a recent strep infection. The only real test for PANDAS is to establish a temporal relationship between strep infections and behavioral exacerbations (tic, ocd, raging). Susan Swedo, herself, acknowledges that they were never able to prove the autoimmune component of PANDAS. They never found an immune or autoimmune marker in the disorder.

 

The question I had, after reading your previous posts, is if the movements you thought were tics were actually seizures? Or does she have both tics and seizures? Or are they able to answer that question? My guess would be that if an antiseizure med resolved the tics, then perhaps they were seizure activity? Did they do a video eeg? That way they can correlate what is happening physically with the brain activity.

 

I'm not surprised that people did not recognize seizures in your child, most people think of seizure only in the "grand mal" sense and don't realize that sometimes, just spacing out can be a seizure.

 

One more question- Have they done, or are they planning to do an MRI? I just think this is important to see if there is anything structurally in the brain that could account for the seizures.

[myrose]

Hello Peglem,

 

My daughter went in to see the neuro last August. The reason was for mild twitching. He ordered a MRI, a 20 minute EEG and blood work for possible Pandas.

The blood work came back negative as the titers were not high.

The MRI showed injury to the white manor part of the brain. The reason explained for this was that it was common in premature infants and usually caused from head injury or lack of blood/oxygen during birth. My daughter has none of these and was almost 8 pounds when delivered (on time) but had to have C-section. Reason being for this is that my pelvic bone was too small.

We were told and shown that the brain re-wired itself around this injury and it had nothing to do with her tics. He said the only problem this would have caused would be vision issues (She passsed eye test with flying colors) So this was it with that. Also said it would not cause anything further.

Next was the EEG. The 20 minute sleep deprived one came back abnormal. We then had a 24 hour video one in which we spent the night there.

We returned home on a Saturday morning from this and the neuro called me laster that afternoon and said it came out okay.

She was then at this point dignosed with a tic disorder. She was put on Clonidine but afte some bad nightmares and learning about the drug we weaned her off and refused any others. She was doing great it seemed. Then all of a sudden my daughter started on Mothers Day with SEVERE head Jerking and eye blinking.

She cried everyday and our lives were being turned upside down. I ended up calling the Neuro's office to see if we could have something to relieve her of this for we could not possibly go on anymore. After the call I waited and a nurse practioner called me back stating that we should put her on Topamax because of the spikes and discharges in both EEG's performed.

I was in shock and this was the first we EVER heard anything like this. The neuro NEVER EVER mentioned this to us. We only refused drugs for the tics...NEVER for the seizures. We started on Topomaz that night (last Friday and after the second dose her issues were relieved. We went in to the office that Monday morning and again was met by thte nurse practioner who ordered Pandas blood testing and also blood tests for the seizure activity.

She said that my daughter was ABSOULETLY showing seizure activity in the EEG's and said they are complex partial seizures. We have never seen anything in my daughter and were in shock that the neuro NEVER mentioned this. We tried 2x to see the neuro since then and have felt like we have been put off. Its always another excuse.

My child now is doing wondefully. We probably see a little head jerk every once in awhile and maybe a few eye blinks but its hardly noticelable and an EXTREME difference in the way she was and has been from last year at the time of all these tests. The head jerk now is just a little tilt as before it was a VIOLENT slamming up the head upward. We were also at this time (On Monday) that the tics and seizure issue are TWO separate things. This was said by looking at her EEG activity.

Now they want to increase the topamax to 25mg and see if the head tilt completely dissapears but if the tics and seizures are two diifernt things than I feel uncomfortable in doing this for I do NOT like what I read about Topamax. If its needed thats one thing but if its just to control a little tic than I would rather not. She is not bothered now as she was before and is perfectly happy as of right now.

Confused as I am about the whole thing I called and asked if she even has to be on the topamax at all being that she has gone without it since last Spetember when this activity was seen on the EEG's. I wasa then told it is recommended for any abnormal EEG showing seizure activity because there is something that can cause a sudden death (I forget the name) from seizures. This is even more alarming to me again considering the fact that the NEURO NEVER mentioned this seizure activity to us after the 24 hour EEG.

None of this makes sense to us and we are to say the least extrmemely confused about this whole thing and STILL waiting for the neuro to return our call and explain whay he never informed us of this.

 

In the meantime as soon as the the bloodwork for Pandas comes back we are trasnferring everything over to a new neuro and we want to see what his take is on all this. Maybe then we will feel as though we at least understand things and possibly get to the bottom of everything.

In the meantime they have called her in the dose increase and we are to start it today but being that she is doing so well I am just unsure of what we are going to do......at least until we get into the new neuro.

Well thats it Peglem.......I am calling yet agin now to the neuros office to see if maybe he will come to the phone but I am almost positive I will be put off yet again!