Another busy day

But today it was Izzy's turn to be busy.  We started off with therapy with her psychologist and then headed over to do her sleep deprived EEG.  She never did nap the way they wanted but the EEG tech did get her to lay quietly with her eyes closed so they could get the data they needed.  Unfortunately, her results were abnormal, showing activity in the right temporal lobe.  The neurologist was hoping she would have outgrown it but nope, still there.  We went up on her seizure meds again so hopefully some of those breakthrough seizures and symptoms she has been having will stop.

The Big Neurology Appointment

A few months back Baby W's pediatrician referred him over to the same neurologist B and Iz see but her schedule is always so full it was a wait to get a new patient appointment with her.  The main reason he was going to see her is his balance--he will be fine and really coordinated and then he'll go through periods, at least a few times a week, where he falls constantly, walks into things, even falls over while sitting or standing still.  B and Iz were like that as well but they also had moments where they completely blanked out and once those blank moments were identified as absence seizures and they went on medicine, their balance and coordination improved tremendously.

W doesn't have those other symptoms that would suggest seizures.  However, because two siblings suffer from seizures, W is going to do a sleep deprived two hour EEG (and won't it be fun to keep him awake!) just to see if there's anything going on.  For both B and Iz, their short EEGs (20 minutes for them) showed issues immediately and their 24 hour EEGs confirmed that they had active spots 24/7.  The seizure meds calm those spots down and the absence seizures and other symptoms improved.

If the EEG is fine and all of the lab work she ordered for W are fine, it will rule out some possible causes of balance issues.  She thinks, based on his symptoms and the timing of his "episodes" that he may possibly be having pain-free migraine activity.  I suffer from migraines and apparently that puts all the kids at a 50% risk of developing them as well.  Since he has been injuring himself, she is thinking we might want to try a migraine medication and if it stops or greatly reduces his "episodes" that would be a good indication that he having migraine activity.  We'll get through all the testing first before we make any decisions.

A trip to the dentist

With the boys, first dentist visits happened around eighteen months.  With Iz, though, I had so much trouble finding a dentist who would see her!  They hear "heart defect" and "open heart surgery" and they couldn't see her until she was five.  I wasn't too worried--until her front teeth started to discolor after several hard falls during some seizures.  I finally found a dentist a few months ago willing to see her.....and she was promptly fired as a patient after a very short first visit.  She was very anxious, would not sit in the chair, would not let them get a good look in her mouth.  Based on the quick look the dentist did get and my description of what happened and the timeline of the graying of her teeth, they advised I get her into a pediatric dentist who could possibly sedate her because she was probably going to need baby root canals to save the teeth to ensure her permanent teeth came in properly down the road.

Finding a pediatric dentist in my area that accepted our insurance was not easy.  But I finally found one and while we had to wait about a month to get an appointment, we went in today.  Iz was still anxious and not very cooperative but the dentist had several techs come in and between them and myself we held her arms and legs and head still so he could get a look.  She wasn't happy but she did get a very good exam and her teeth look great, even the damaged ones!  Much of the discoloration is actually now gone and they are returning to their normal color, they are not loose at all, there's no swelling in the gums above the teeth, and while he wants me to continue to keep a close eye on them, he believes she will be just fine.  Apparently you can bruise the tissue inside teeth--sometimes the blood that clots in there does kill off the tooth but if the circulation is good enough, it breaks up the clot and the discoloration goes away and the tooth is fine.  Looks like she just had some bruising and hopefully when we have her followup, the coloration on those teeth will be absolutely normal and that will be the end of it :p  Now that she is on a good dose of her seizure meds, she rarely has injury-inducing falls.  She falls, of course, she's only three, but when she used to fall due to seizures, she wouldn't put her hands out to break her fall and that's why she kept hitting her teeth.  Now, those hands come out and she sometimes gets a scrape or bump on her hands but that is way better than busting up her face :p

Tomorrow, we head up to the hospital for our new patient visit with the ophthalmologist (the one we've been seeing the past few years moved to California).  She is excited because she likes getting her eyes checked plus she packed up her snacks and things and can't wait to use the "lunch purse" we won from Mom on the Go's contest around Christmastime :p  S thought the lunch bag was a cool purse so they all call it the "lunch purse" now LOL 

Feeling frustrated.....

For years, my busy little B has had pretty bad meltdowns, to the point where he would need to be physically restrained and his preschool classroom sometimes had to be cleared out until he calmed down.  The severity of these meltdowns and the suddenness of their ending made his pediatrician wonder if he could be having seizure activity like his sister.  She referred us to neurology and we took him to the same neurologist Iz sees.  The neurologist thought seizure activity could possible explain the meltdowns as well (not positive but possible) and B's EEG showed similar abnormal brain activity like Iz's so B started medication.  His dosage has been raised a few times and the frequency of the meltdowns has changed--they are few and far between now.  He's never had one at school this year so the kinder teacher has never seen what he used to be like.  Now, though, he is on the opposite extreme--he will completely shut down, refuse to participate or talk or move.  Honestly, though, the shut down is a million times better than the meltdown--at least with a shut down I don't have to be worried he will hurt himself or others.

The shut downs don't frustrate me.  When they happen at home, we treat them much as we would a mild meltdown--we leave him alone once we've made sure he doesn't seem to be currently having a seizure and he's okay and that gives him time to collect himself and come back to us.  However, his teacher called me and wanted me to punish him at home for having a shut down at school :-|  THAT frustrates me to no end.  She in insistent that this is all control issue and that he will just not work at school and then I'll let him play all evening and she can't have that.  A control struggle with B looks very very different.  He may refuse to do something, he may even refuse to talk to you while he is refusing to comply, but he never stops moving.  He wiggles, he spins, he wriggles around while sitting down, he looks all over the room.  The hyperactivity part of his ADHD does not stop because he is trying to exert control over a situation.  A shut down, though?  He is still.

I tried to talk to her about what his shut downs at home are like, about his OCD tendencies that can kick in and make him lose it over things that normally are just routine, about his anxieties that flare up without warning.  But she just kept insisting its a control thing and I need to punish him.  I talked it over with B's therapist and she is feeling the same frustration I am!  She has seen B's meltdowns and shutdowns as well as him trying to exert control and yeah, a shut down is not a control move.

At the moment, I'm at a loss on how to get through to this teacher.  I need to figure something out :\

B goes to the neurologist

We had our neurology appointment this week--I was very nervous!  But we got excellent news--B's MRI was normal :)  None of the problems Iz has so that is a relief.  Dr. W did raise B's seizure meds a bit more (and told me the next dose up if I'm still seeing seizure activity after two weeks) so hopefully the new dose suppresses the seizures and we don't see any more episodes.  Iz has only had maybe one or two episodes since her meds were raised a few months back so I would love the same results for B.

We also talked about the ADHD and meds.  With S, we didn't even consider meds until we'd tried other avenues but B can get much more severe than S ever did and B's other issues can get triggered by the hyperactivity and impulsivity and in preschool it was not unusual for them to need to clear the room of other students until B got control of himself again.  B has already started weekly therapy and the seizure meds may help with the more severe behavior issues (sometimes seizures can cause them) so we are going to wait until closer to the end of the school year to give us time to find the right seizure med dosage and then talk ADHD meds.  If the weekly therapy and seizure meds bring him down to a more "normal" level, we might be able to postpone the meds but if he is still really struggling, we will go ahead and start.  He's already pretty far behind developmentally/emotionally/socially/educationally so if he's still at an abnormally high level even for a kid with ADHD, meds it will be.  One thing I like about Dr W is that he is just as cautious as our pediatrician when it comes to medication--he wants to make sure that the right med is being given for the right reason.  So if its the seizures causing B's brain to go haywire, he doesn't want to pile on unnecessary ADHD meds when all we really needed was the right seizure med (not that B doesn't have ADHD--I'm pretty sure anyone who spends any amount of time with him can see that he definitely does :p  But if you take away the seizures and the ADHD stands by itself, it may not be bad enough to need meds so young, if that makes sense.)

Well, looks like we have another.....

The neurologist called me personally a few minutes ago--B's EEG is abnormal, just like Izzy's :\  Her abnormal activity is on the right side, temporal and central.  B's are on the left, back part of the brain. Even though its a different area, its still a part of the brain that the abnormal activity can trigger seizures and with some of his symptoms, Dr W is pretty confident we are seeing focal seizures and is going to start him on Trileptal as well.  S has a podiatry appointment in the morning in another building so we will just walk over and get B's script as well.

Its an odd place to be.  On the one hand, you always hope the doctors find nothing, that everything is fine and there are no health issues.  But on the other hand, there is a sense of relief that these things that don't seem normal have a reason and a treatment. 

Busy busy busy!

Things have been busy around here--lots and lots of driving for therapies and appointments!  But its a good busy because things have been holding pretty steady and we are just in the rhythm of getting to where we need to be :)

Izzy's speech therapy has been going so well since she started the seizure meds!  She has met several of her goals and we may be finished for now in another month or so :)

Early Intervention has been evaluating her to see what her transition out of EI will be like since she turns three in the fall just as the programs are starting back up.  They are thinking she does not need the full-on special education preschool the way B did but they also are not sure how she would do in a completely mainstream classroom by herself.  But they would really like to see her moving on to some sort of program to continue working on speech and emotional/social development.  Perhaps a regular classroom with an aide?  They are checking to see what's available and hopefully we will have a plan in the next few weeks!

B had his transitional IEP meeting so I could meet the staff at his new school.  He's going into a special education classroom with a goal of hopefully being able to attend specials with the mainstream students and then over the next few years build up his time mainstream until he is there most of the time.  We are anticipating a rough transition, though, as he doesn't do terribly well in new and unfamiliar places so it may be a while before they attempt mainstream specials.  Maybe he'll surprise us and be just fine switching schools!

Both B and S have had evaluations with the new neuropsych so now its just time to wait for results and to get a plan in place to move forward :)

And that's about it :p

Oh, the changes a week can bring :)

It has been one week since our neurology appointment where the doc put her on meds for epilepsy. At the time, he said he couldn't say it was seizures 100% because her EEG didn't catch an episode. But based on the abnormal activity caught on the EEG and her symptoms, he was pretty sure she was seizing. He said if we start the meds and her symptoms begin to disappear, we'll know for sure it was seizures. The difference in Izzy is amazing. She no longer randomly falls--when she does fall, its because she tripped and those little hands come out to catch herself and she no longer injures her face/head. She doesn't have "blank" moments. She doesn't walk into walls or door frames or furniture. She sleeps better. She talks more and more clearly. Her comprehension levels have gone up. Her mood has improved--overall she is happier, more coordinated, and more vocal.