I did some research tonite with Google's help.  Looked into both TIA's and Seizures.  I think Cara's TIA's occured before her surgery and they are further apart.  But I think what Cara is going through now is more of a seizure because....under "Complex Partial Seizures" it describes Cara's symptoms to the "T"....especially where it says..."funny face, a mixture of surprise and distress, a "stare", mouth makes odd movements as if tasting something...then it mentions "uncontrolable laughter"...she ROARS...and just can't stop laughing.  Says lasts from 30 seconds to 2 minutes...the person may be tired or confused for 15 minutes...and not be fully normal for hours.   Who gets them?  People who have a head injury, brain infection, stroke, or brain tumor, or had brain surgery.     Another source says a seizure may be due to a neurological abnormality...which is what MM is.  I'm no doctor but if that is what it is...maybe some seizure medication will ease some of it.   I printed up some of this stuff and taking it with me when I take Cara to see Dr. Bernes (pediatric neurologist) in the morning.  I'll keep you all posted.   Got to get to bed....I spend too much time on the internet tonite but was very interesting reading though.

Good night,  CarasMOM

Hi Roz....early morning as got to get two 9th grader boys off to school but they wanted french toast.  Thank you so much for your reply.

I got a reply from Dr. Meyers early this morning, too.  He said he has had MM patients that have seizures from several different causes - old small strokes or ongoing TIA's.  He felt that my thought was a very reasonable thought.  One good first steop would be to meet with Dr. Bernes (pediatric neurologist) (which we are this morning)...he may want to get a EEG.  The EEG may not show seizure type activity, but if it did that would be very diagnositic.  Often they would try an anti-seizure medication on a presumptive/diagnositic basis - and if the spells stop or improve, then by default we conclude that they are seizures.  He feels that it is a very reasonable approach but recognize that seizure medications can have side effects like sedation so one must balance off the benefits and side effects.  I'll see what Dr. Bernes sees...not difficult to trigger one but this morning Cara is kind of "laughing" and very wobbling , jerking...probably after all those spells yesterday.   I had put down on the calender the number of episodes she had each day...and just tally them up...was 51 times within two weeks !!!!  Will keep you all posted as I feel somebody could experience the same down the road and this may help.

Warm Hugs,  CarasMOM

Hi Guys...thanks Nancy for your reply...yes I agree that Cara's "on going "spell" situation" was bit extreme...no question about that !!!!!   I knew that was normal to have a TIA here and there after surgery...but this wasn't "here and there"...but rather "here, here, here, here and here".    We got back from Dr. Bernes office...he said she's having is simply having "it" too frequently to wait and see what the EEG says if it says anything.   He prescribed "Trileptal" for Cara.  He said a very mild medication, no side effects,  no effect on kidneys or liver...etc (I checked google on it when I got home).  Phx Childrens Hosp will call us with the EEG appt asap...probably first part of next week (Tues or Wed)...if the "spells" don't subside with this medication (to call him on monday)...she'll have her first half teaspoon dose tonite before bed..the next 3 nights...then on fourth day and on...one in am and one in pm.  She's had about four already today but is relaxing watching cartoons.  Nancy I was thinking the same thing as Ive read many posts including the one you mentioned and even saw some were put on "anti-seizure medication" then I remembered your most mentioned Dr. Steinberg saying that do you realize that the seizures she were having were related to MM (not in those exact words...) but I "remembered" reading that a week ago and went back into it...but all the research I did on "seizures" (there are different variations)...I read even further when I got home...on the drug Trileptal (which is carbamazepine that is the drug of choice) for Complex Partial Seizures but further research...Cara's symptoms are more of "Simple Partial Seizures" as that one is one is aware of it is happening and remembers before and after as Cara does...the Complex Partial Seizure one isn't aware of it happening and forgets what went on....Dr. Bernes didn't say what it was yet (Drs never do until further diagnosis anyway).  I felt good knowing that much stuff before seeing him.  I normally would just keep this quiet especially after I said Cara was doing good...but then felt I feel better getting this out in the open and for others to know about in case that ever happens especially when several sources say "Who gets it ?" and then lists several reasons and ends with "those who have had brain surgery.

Have a great weekend you all...I'll "try" to do the same. 

carasMOM

Oh Carol . . . . .  You must be exhausted with the events of the last few days.  I hope that Cara is doing better, and that you're able to find the Trileptal in liquid form without hitting every single pharmacy in town!

We've just returned from Stanford this morning.  Tara had her follow-up testing this week; SPECT studies on Wednesday and Thursday, angiogram yesterday.  She had a difficult time after the angiogram, and they decided she should stay overnight last night.  Fortunately, she is feeling more her usual self today, so they let her come home.  We are hoping for good news next week when Dr. Steinberg's office calls!

Your efforts really show how important it is for parents to advocate for their children.  With so many different specialties/doctors involved, our experience has sometimes been that conflicting instructions are given.  (i.e., Tara was put on an adult aspirin every day for the rest of her life following her surgeries.  Our discharge instructions after the angiogram were "absolutely no aspirin or aspirin products".  Rather than ask the doctor who did the angiogram for his opinion, I called the neurosurgery resident on-call for direction, figuring that he/she would be more familiar with MM).  That's a simple example, but we really do have to stay on top of things for our kids and ourselves!  I'm impressed with the amount of research you've done, and I'm sure it helps your communication with Cara's doctors.

Well, we're sure saying our prayers for you and Cara.  It will be nice to get things under control again, not to mention the peace of mind you must be badly needing.  Please continue with the updates, o.k.?

Warm hugs,
Jill

Cara's Mom,
            Mandy was on Trileptal for quite a while for pain in her arm that was affected by the strokes. When you touch her arm her brain tells her its pain instead of just touch, that was an affect from the strokes. After a while we realized it wasn't working as well as it should be so he switched her to Neurotin which helps much better, she still feels pain when she shouldn't but its not nearly as bad. I hope the med. works for her, you guys have been down a rough road and unfortunately I can relate. I just can't seem to get my life back on track after all this time. I feel for you it stinks, but ya do what ya gotta do for your kids and I'd do it 10 times over again. Good Luck talk to ya soon.
                        Nancy
     

Carol,

Baby steps, remember?  You're probably right to be cautiously optimistic because we never know what's around the corner.  But, what a great update!  We'll hope and pray for more days that are the same.  For now, I'm so glad Cara's feeling more like her old self . . . I'm sure the difference is amazing.

I definitely agree with your earlier post about wishing that you could through all of this for Cara.  I've felt that way for months (as most parents probably do) . . . HATING that Tara has had to follow this path!  Brings a person back to their faith, and reminds us that there is a reason for everything, even if we don't understand it.

We had a wonderful speaker at church this morning.  The topic was "attitude", and he spoke of how life-changing a person's attitude can be.  Mind you, this was a 23 year old man - my first thought was "How can he really know anything about life at such a young age?"  His story, in a nutshell:  His mom was 17 when he was born.  Mom, unable to handle it, took off and left him to be raised by his grandparents.  Grandpa died, grandma couldn't cope, so he was placed in at least 5 different group homes.  It was a terrible story of him being repeatedly abandoned.  By the time he was 18, he was in jail.  Remember, this was only 5 years ago!  He has since found God, turned his life around, married and now has spoken to over 1 million people all over the country about "attitude", and how a person's attitude towards the events in their life makes all the difference.

I won't continue rattling on.  Have a great Sunday evening, and I'll look forward to more Cara updates!

Hugs,
Jill      

Great to hear that Cara is doing much better. Hope the pharmacies were able to track down her medication in liquid form and that Cara continues to do well. I remember taking Phenytoin in liquid form - it was a bright, cerise pink syrup!

I was interested to note that a couple of other patients have had a similar experience (in terms of recovery) with the angiogram. I didn't react too well, coming round from my last one, when I was nineteen. It appeared to be seizure related but was never confirmed. I remember feeling the usual groggy sensation when you come round but then remember wanting to reach out and having some kind of convulsion type episode - my whole body shook/jerked violently. I do remember it though, so maybe it wasn't a convulsion. It was all a bit vague to me. They called the anaesthetist up who thought that it might be some kind of reaction to the dye and he also said that he hadn't seen a reaction like this before. This was the first time I'd had a reaction like this. Again, hopefully a one off (touch wood).

Jill, I was surprised to hear that Tara wasn't kept in hospital overnight as routine - whenever I've had an angoigram, it has been strict 24hour bed rest, some of which is complete, flat bed rest.

Best wishes to you all,

Roselyn

Hi everyone !!!  You all have been so awesome for me...so good to "just talk about" Cara's progress with her "spells" whether they "were" TIA's or Seizures.   

I'm suppose to pick up the "liquid form" of Trileptol today or tomorrow.  But am glad I went "all over the place" looking for someone to prescribe the "pill form of Trileptol"....which my Mom (who was keeping Cara for four days) crushed and put in a teaspoon with applesauce.   First 3 days ...just one dose before bed...each morning she had one "spell"....just one tiny one which compared to 4 to 8 a day is big difference.  Yesterday was first day of 2 doses (am and pm)...Mom said she slept until 9 and had one when she got up....so we figured 730am first dose would have prevented that one.   And give her other at 730pm....she is home now with me (GOSH I missed her so much even though I was popping in and out at my Mom's to see her.    As far as I am concern the "spells" she's been having has to be seizures for it to stop all of the sudden.    She still hasn't had the EEG and if she continues to remain the way she is I am going to request not to do it because I think they will have to put her to sleep and we all know that putting MM patient to sleep is risky especially if any testing is done at a facility that is not familiar with MM.  None of the athesitologists that Cara has had for MRA, MRI...minor tests were familiar with MM !!!  I made them go on the internet and read about it....they do it and come back to me...oh thank you for telling me especially with Cara's blood flow to her brain already being restricted from MM, and additional athesitia (sp) will further restrict it to possible dangerous levels promoting a stroke (I'm adding this info for newcomers to this website as I know you all are familiar with the importance of this).

Cara has had...now I have tallied it all up....78 seizures within 2 weeks !!!!!!   How extreme is that....VERY !!!!  Now I know, wish I knew...I could have gotten her medication a week ago...or she could have been on it as a "precaution measure"...like other patients of brain surgery.   I kept reading some others being put on anti-seizure medication...I kept wondering "why" not Cara.  She didn't really have any spells..."one here and one there".

The after effects....she has some "jerky" movements...mild though...kind of like after someone was "shocked with electrical current".  Im thinking my poor thing.  Then thankful that we're on it and now let her "heal".   And work with her getting her focus back, work with her increasing her amount of time doing a task as she jumps from one to another.  The physical therapist who saw her after her second surgery had to hold her down during the testing for speech therapy.  I told her I was familiar with ADD as two of my 3 boys have it but not as hyper as Cara.  The PT said that occupational (OT) therapy will help Cara but let her heal some more.  The speech therapist says the sounds Cara has trouble with are very soft ones..and want her to have a full panel hearing test (I have a prescription to have her hearing test at Phx Childrens Hosp)...but I was waiting until the swelling from surgery #2 went down...it has but the problem with the spells past few weeks made me wait a bit longer.  In a week or two I'll go ahead with that...by then she'll have her OT appts set up, Homebound program (teacher from her school comes to the house work with her) set up...and while it'll be a long road ahead....but we'll get there one of these days.......the line "we'll get there when we get there"...stands so true...I'm feeling 'goosebumps' as I type this.

Warm Hugs to you ALL...

So glad to hear Cara is continuing to do well on her medication. Long may it continue

Best wishes to you all.

I hope you get some answers soon.You must be exhausted .It does get easier though.I can say that now after 2 yrs.I don't think about Kathleen's MM every hour of every day now. There are times (even though the physical signs are still present from her strokes) that I forget about it.I never thought we would be able to relax for even a day.there are more days now that I don't worry that maybe she "looks different" or looks like she's drooling or leaning more.She still has good days and bad days but the good are winning.She eats good and sleeps good and has been extremely healthy ( we are down right obsessive now about germs and hand washing).I so hope that your family can benifit from knowing that things do get easier. You are doing such a great job learning all you can and being so in tune to your daughter I hope you have paused to "pat yourself on the back".Prayers that these "spells" are behind you soon.
Mary Grace

THANKS....just want I needed, Nancy N. and also to Shari on the other thread "blood thinners".

Nancy N....your post is what I remembered you mentioned previously in another post.  I can print it up and show my doctor.   When I was doing all that research about seizures...there were several parts about non-epiliptic seizures, too that fade away..maybe the medication "helps" those things that may have been something more of TIA's (even smaller TIA of a TIA)...something that has not been idenified yet but part the MM process either before surgery, in between surgeries, after surgeries.  Since the carotid arteries continue to shut-down and new arteries grow...process ongoing therefore bound to be some "stimulation" going on that could trigger the brain in various of ways.

Shari...I'm wondering if you remember what your TIA's were like that you had almost every hour in between your surgeries before you were put on heparin? 
The school nurse at Cara's school says when people have more than one seizure...they most of the time go to sleep...Cara with 80 of them within 2 weeks never went to sleep all day until bed time....so makes me think it's got to be something else.

CarasMOM