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.

W update

We went on a trip and it just threw everything off :p

W is making good progress in speech therapy--he even put together two words independently (more water) instead of just repeating phrasing he's heard us use often.

OT is also going well--a little too well, in fact, because his fine motor skills have progressed to the point he can get my gate at the top of the stairs open :\

Our PT is at a bit of a loss, though--W continues to be all over the place in balance and coordination, some days he does so well and other days he's constantly falling and running into things.  The neurologist did a bunch of testing and nothing turned up.  She thinks he might be having some migraine activity that is effecting balance, coordination, speech, etc instead of causing pain so we've started him on a daily migraine medication.  So far, it does seem to help as his periods of unsteadiness are shorter and further apart.

He turned two recently and seems to be determined to show is he is most definitely two with the stubbornness and the "I do it myself" attitude LOL

EEG results are in

And it was perfectly normal.  Which is good because hey, normal! But bad because we still have no definitive answers on why he has periods of extreme instability :\  Neuro is thinking migraines but there's not really anything at this age that will tell us yay or nay because he can't tell us about it so its all a guessing game.  I hate health guessing games :p

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.

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.)

Six month followup

Two years ago (and a few days), my Busy Little B had his ear tubes placed.  He had lots of ear infections and could not pass a hearing test and the ENT found he pretty much always had fluid trapped in his ears.  The tubes went in and he finally passed a hearing test!  His speech grew by leaps and bounds (although he is still behind).  We were told to expect the tubes to stay in for six months to a year but you know my kids--they are rule breakers ;)

B sees the ENT every six months and at our last visit, one tube was nearly out.  This time around, that tube is completely gone and there is no sign of fluid trapped in there.  The other tube is still in place and open but looks like it is working its way out.  Our ENT thinks maybe in six months it might be out and we can evaluate whether the fluid is staying out or if B needs a new set.

In a few days, B has his next neurology appointment and we find out the results of his MRI.  After Izzy's MRI results, I must admit I am nervous to see what's going on in B's brain.

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. 

Another EEG and stuff

My Busy Little B had his routine EEG the other day--he did really well!  He was very cooperative and managed to not freak out about having the leads set up.  He needed lots of reminders to stay still and  not try to touch the wires but he tried really hard to do what the tech asked of him.  She got everything she needed and he got to watch Bob the Builder :p

Dr. W, the neurologist, said if the results are normal, we will get him set up to do the 24-hour EEG the way Isabelle did, just to make sure he's not showing any seizure or abnormal activity because the routine one is only 20 minutes and can miss things.  With a family history of seizures and Iz having them, he wants to be sure.  They said we should have results in a few days so maybe Friday or early next week.

MRI is set up for next month--that one makes me nervous.  It will be sedated because of his age and anything with sedation gets my nerves going full swing.  But I am also nervous about results--we went into Izzy's MRI expecting maybe a structural issue causing the seizure activity but a good chance everything would be just fine and came out with numerous issues, including cysts that could require neurosurgery some day.  Nerves.  For the next month.  Fun times.

In happier news, B really likes his new therapist and has been cooperative with her in getting to know her and talking about behavior.  He has been doing really well in school.  The bus has been a bit of a struggle--he is supposed to be harnessed but they don't have one for him and then complained he won't stay in his seat.  Um, yeah, that's why his IEP discusses the need to be harnessed :p  They said they will get one to use for him so that should help.

He had his very first homework assignment tonight--he had to trace the letters in his name three times :)  He kept telling me "my arm is so tired.  it can't write anymore."  I told him then he'd better get to bed right away and fall asleep early so I could wake him up early tomorrow morning after his arm had a chance to rest so he could finish tracing.  He decided his arm wasn't tired after all and finished his homework ;)

Another visit to the neurologist....

But today it was my Busy Little B's turn.  When his pediatrician referred him to neurology, I asked that he be scheduled with Izzy's neurologist.  We had to wait a little longer to get his initial appointment but I had a couple of reasons for wanting to get the same doctor:  1) I really like him.  He's so good with Izzy, even when she's hiding under a table from him.  He's gentle and kind and patient.  He takes his time, he answers any and all questions, and he never makes me feel like I'm over sharing.  I have no idea what could or could not be significant to him so I mention all the random things I think maybe he might need to know.  And sometimes he does need to know and other times its just random stuff that doesn't fall into neurological symptoms.  But he never gives me that attitude you get from some medical professionals because you "wasted" their time going over something irrelevant.  He will take the time to explain what he knows and how it does or does not connect to his specialty. 2) I think being familiar with family history is important, especially if this stuff is genetic as everyone expects.  Dr W is familiar with Izzy and her testing and treatment and because B has some of the same symptoms and Dr W already knows Izzy's history, I figure we might get to shortcut some of this stuff :p  And I was right--with Iz, we did a wait and see while she did some therapy before we moved forward with testing.  With B, we are going straight to testing to see if he is also having some seizure or unusual activity in his brain.  He's been referred for the short EEG (and we will followup with an overnight one if the short one is clear or if he has unusual activity that isn't clear-cut seizures) as well as an MRI (to check for structural issues since Izzy has several).

The neuropsych also referred B to a neurologist for medical management of his mental health diagnosis, particularly the ADHD so the timing of the pedi already referring him was kind of perfect :p  We already had an appointment coming up and I could just hand him the neuropsych report and just like that, B is his regular patient and eventually his followup visits will be synced with Izzy's so we only have to come up once for both of them :p  they can't sync just yet, though, since he needs to see Bryce sooner than Iz due to his upcoming testing.

Monday again

Monday again--how did that happen?  It seems as though time is creeping by and yet disappearing all at the same time.  We have a busy week coming up!  B sees Izzy's neurologist tomorrow.  Tomorrow is also Izzy's third birthday so she has been busy picking out what she wants to eat and what kind of cake and waiting for us to shower her with presents :p  Later this week the boys also have therapy. And then I am hoping to hit up the farmer's market this weekend and let the boys do some choosing and cooking with me :)  So not a very busy week as we've had plenty busier but busy enough, eh?

A little bit of this, a little bit of that

The randomness of my mind, in bullet-point form!

• School got off to a rather harried beginning.  B's bus is supposed to come at the same time I have to be driving S to his school.  So I enlisted the help of my Dad who puts B on the morning bus for me.  I get B ready to go, take his first day of school pictures, and leave him waiting on the corner with my Dad while I take S to school.  S's school does not have bus service so all kids are dropped off.  Doors open ten minutes before class starts and let me tell you, that isn't enough time to get all the cars through the drop-off line so there are always kids getting dropped off after school has begun because we've been sitting in the line for ten minutes.  First day of school is even more insane because so many want to park in a very very very tiny lot and take the kids inside to do pictures and stuff.  I take the pictures at home and I drop my kid off at the door just as we do every other "normal" day because it is INSANITY.  People were parking in the drop off lane so it was really hard to get through.  Took about twenty minutes to get in and out of the lot. I go back home and B and my Dad are STILL at the corner.  *sigh*  Apparently they added B to the bus route too late and the driver didn't know to come get him so I drove him to school and was assured that all would go smoothly after school and the bus would be here at four.  Nope.  They put him on the wrong bus.  The driver didn't know what to do with him, didn't even have an address for him, and she didn't even have any stops in our neighborhood.  When his bus didn't show up by 4:10, I called transportation and by the time they figured out where he was and had the bus drive over to our house, it was 4:45.  You know, if that had happened to S, I wouldn't have thought too much of it because kids get on the wrong bus sometimes. But B is a special needs student in a special needs classroom riding a special needs bus.  He always has an adult with him--they take him off the bus and escort him to the classroom and then he's to be escorted from classroom to bus.  While his speech has improved, he is still limited in his communication abilities and the bus driver couldn't understand much beyond his name and asking the aide to sit with him.  This is most definitely a mistake that should never have happened :|  He is not supposed to be on a regular bus and gosh, it sure does scare me to think he could have gotten off at a regular bus stop as part of the crowd :(  The head of the special needs transportation section got involved and it has gone smoothly the rest of the week.
• S's personal goal for the last year or so has been to read a Magic Treehouse book himself.  He is finally at he point where his skills are high enough that he has begun reading one of the shorter ones to me for his nightly reading time.  He is so proud of himself and I'm so proud of him!  He has worked really hard to get better and it shows.  He is hoping maybe he can catch up to his classmates this year and be on grade level by the time school is out (he is behind several years and gets extra help at school one-on-one.  Part of his neuropsych testing shows two learning disabilities in reading and math).
• Izzy had her rescheduled neurology appointment (they had called me the day of her appointment last month because her doctor had a medical emergency--turns out it was for the birth of his daughter :)  And excellent reason to reschedule your patients!).  When she started the trileptal, the improvements were swift--she was more coordinated, her speech was better, her falling episodes were much further apart and sometimes not as severe.  She was still having some seizure activity but not even close to what it was before.  But the last month or so, she's been having some odd things happen that I wasn't sure was even connected to neurology but I told him about it anyway, just in case.  The major thing is that most of the time she speaks fairly clearly and then sometimes she sounds like she is speaking another language.  Repeating herself or asking her to slow down doesn't seem to help.  Other times, she will get "stuck" and repeat the same syllable (or two) over and over.  Neuro says that sometimes when you start seizure meds and you get the main seizures to stop or at least be less severe, you might find minor seizure activity spreading to nearby areas of the brain.  The unusual activity in Izzy's brain is very close to her speech centers and he believes that the episodes of incomprehensibility and getting "stuck" are minor seizures, especially since she is still having random absence/focal seizures.  So we upped her meds and will see if this new dose is high enough to bring them to a stop.  We are going to slowly up her dose until we hit a level where she is seizure free. 
• Izzy has fallen in love with Garfield--if I would let her, she would just watch Garfield cartoons all day long :p  I should track down some Garfield stuff for her upcoming birthday (four more days!!)
• We went to the zoo last weekend and now Izzy is convinced every time we leave the house that I am taking her to see the "namimals"

Brain Dump

• Izzy's neurology appointment was postponed due to a medical emergency for the doctor.  I hope whatever the emergency was, all is well.  So we go back in two weeks to see how she's doing.  I had planned on seeing neurology before she ran out of meds so I hadn't refilled it in case he wants to change what she's on but she is running out so S and I ran over to the children's hospital pharmacy today while we were up there for his podiatry appointment and got her new bottle. 
• S was referred to podiatry a while back because I was concerned about how his feet roll inwards--he wears out one side of his shoes completely while the other side looks barely used.  It took a long time to get an appointment but we got one about six weeks ago and the podiatrist wants S to wear custom inserts.  We went in today to get them and when the tech pulled them out of the package, they were so small :p  Somewhere along the way the shoe size was mixed up.  So they took a new set of casts and are sending the too-small inserts back and getting the correct size made.  We go back in a month to get the (hopefully) correct pair. 
• Izzy is still on the wait list for preschool.  We've been planning on her doing the weekly playgroup if she doesn't get in to continue getting support and working on social skills but we met with her EI worker earlier this week and they keep changing the program around and changing the criteria to qualify for group.  She is pretty sure Iz will still be able to get in but we won't know for sure until next month or maybe the month after.  Oy.
• We moved!  We are technically farther away from the hospital but its a straight shot up the highway so its actually quicker than before.  Plus I don't have to drive an extra almost two hours every appointment running kids in the wrong direction for babysitting.  Logistically, this will make things much easier for me :p  And with three kids needing shuttling to specialists and therapies nearly an hour away, two school aged kids with homework, my own homework, and all the other things that go with just normal life, anything that makes things easier is a very good thing ;)
• My cat has become even more protective of the kids lately.  He has taken to sleeping outside the boys' bedroom door and guarding it.
• I hate humidity.  Please go away
• Have a fantastic weekend, everyone!

More referrals!!

My busy little B had his yearly checkup today and he was having a good day :)  He was cooperative and talkative and his pediatrician was so pleased with the progress he's made from when she first met him.  Those two years of special ed preschool have done wonders for him.  There is still plenty to work on, though, but she is also feeling hopeful about things because Dr. B (neuropsych) has made more progress on diagnosing him so he can get therapy in the last few months than I've been able to do in the last three years.  You get the right team and you finally start getting somewhere!

One thing we talked about is his excessive sweating.  You look at him wrong and he sweats.  His teacher often has to change his clothes at school because he is soaked.  Everyone else will be fine and he will be bright red and dripping.  When he was younger, it was bad but not quite this bad.  It has a fancy name, hyperhydrosis, and our first step if seeing if it is just "normal" for him or has a medical reason is to send him over to cardiology.  I wanted him evaluated by cardiology anyway, just in case, so two birds and all that, right?

I also brought up sending him over to neurology and she said she was going to ask us to go so she and I are on the same page there :)  B used to have the same symptoms as Iz that led to her epilepsy diagnosis and while it doesn't happen as often to him, I still see some of those things.  And Dr. M (pediatrician) said sometimes the extreme meltdowns and sudden end of them are actually seizure behavior.  So we'll have him checked over and see what happens.

Progress :)

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.

More diagnoses......

Izzy had another neurology appointment the other day and we were there a very long time :\  There were many things to talk about.

We got the full results of the MRI.  It showed two cysts in her brain.  The Rathke's Cleft Cyst near the pituitary gland I was told about over the phone and another cyst on her pineal gland.  The pineal cyst needs to be watched because if it grows, they will need to remove it since it would prevent fluid from draining out of the brain if it grows.  It can also affect sleep so that may possibly be while she isn't the best sleeper.  She rarely sleeps through the night. 

Her neurologist was able to pull up the results of her endocrine panel and everything looks good so the Rathke's is not affecting her pituitary gland function.  yay!  We also talked about the myelin sheaths--they are not as developed as they should be but it is possible that, given time, they will catch up.  In one year we need to repeat the MRI to check the cysts and the myelination.  At that time, they will also need to get a contrast MRI of her pituitary gland. 

The MRI also showed a structural abnormality.  I forget what it is called but the part of the brain that connects the two hemispheres is too short.  Dr. W said that this is often seen in patients with genetic conditions so he's hoping genetics will find something because a diagnosis will guide him in how to continue treating her.

Her 24 hour EEG isn't completely processed but he was able to look through parts of it and get a treatment plan going.  One of the reasons we did the original short EEG and MRI was Izzy's falling.  She has your normal toddler falls where she trips over things but she also will fall for no apparent reason.  Sometimes she will be walking and just fall over or she will be standing or sitting still and fall.  When this happens, she also does not put her hands out to stop the fall so she hits her head and face a lot.  She also randomly walks into things (walls, doorframes, furniture).  While her eyesight is borderline for needing glasses for her age, she can see well enough to not walk into walls, you know?  And sometimes its like she "pauses" after a fall or walking into something--she will just be still and staring for ten to thirty seconds before reacting. Her EEG shows that a small portion of her brain misfires. A lot.  More than your "average" person with epilepsy.  While we did not catch one of her episodes on the EEG, her unusual brain activity coupled with the falling, the pausing, not putting her hands out for those falls, etc tells him that she is having focal seizures.  The abnormal brain activity she is having in that part of her brain is known for causing seizures so he believes that the falls where she does not try to catch herself and "pauses" are a seizure.  And he thinks when she walks into something she should be able to see, she is seizing--he said in some focal seizures, just one part of the brain shuts down so while she continues walking, the part of the brain that would stop her from walking into a wall has stopped.  So she walks into the wall and doesn't react to that until her brain "wakes up".  So we started a low dose of an anti-seizure med used for epilepsy.  We will up the dose after a week and then give it some time to see if it works or if we need to up the dose again.  She will be on it for two years and then they will check to see if we can wean her off or if she needs to stay on it. 

Poor kid just can't catch a break :( 

A trip to the pediatrician

When I spoke to neurology about the MRI results, they told me they were sending the report to the pediatrician and to follow-up with her as the next steps would be handled by Izzy's PCP.  So yesterday we set off to see the doctor :p  The nurse gave her stickers while we were waiting so first she hid under the exam table with them:

When she came out of hiding, she wanted to show off her stickers

And then she decorated the diaper bag :p

So, there were a few things on the MRI report.  First, it appears there's some abnormalities with her pineal which I'm told regulates the production of melatonin.  This might explain why she's a poor sleeper :p  But its "normal" enough that there are no recommended treatment plans at this time.

Then there's the Rathke's cleft cyst.  Recommendation is to run an endocrine panel (which her doc already had an order written up and we went for that lab draw after the appointment) and to also, at some point, get an MRI with and without contrast of the pituitary gland. 

There is also some concern about the myelination in her brain and they are asking we do another MRI in one year to check her growth and development and make sure the myelin sheaths are where they are supposed to be.

Now, Iz is not showing any outward signs of a problem with the pituitary gland but we have a pretty good track record of "just in case" checks turning up a problem so we are going to go ahead her endocrine function.  If any of the numbers are off, she will be referred to an endocrinologist and we will set up the MRI of her pituitary gland.  If her numbers are fine, we will wait on the pituitary gland MRI until it can be combined with the one in a year for the myelin.  Unless some problem develops, of course. 

So now we just wait to see what her labwork says!

Our schedule is getting way too full.....

Its like the floodgates have opened.  I spent so long trying to get referrals, trying to find places that could give us some answers, trying to find out the reasons behind why I had this feeling things were "off".  And since we switched to this new pediatrician, things have slowly trickled in.  We got therapy started for Iz and S for their anxiety, S has been getting special ed services at school to help him with his problem areas, S went to cardiology (where we found out those symptoms chalked up to "FTM worry" all those years ago were actual due to a CHD), we got a referral to genetics for all three kids, a referral to neurology for Iz, we started the evaluation process for B (and kept hitting roadblocks *sigh*).  Seems like a lot, eh?

But now?  All of that stuff up there was over the course of almost a year.  But now we have Iz getting a full genetic workup and the geneticist is referring her to neuropsych to get some evaluations.  We discovered a problem neurologically so she's got that 24 hour EEG coming up plus her MRI found that cyst in her brain so she has a pediatrician appointment soon to follow-up on that and decide whether we are going to test her pituitary function.  Her Early Intervention coordinator and EI playgroup teacher are moving forward with repeating her evaluations to see if she qualifies for special ed services next year to keep her in the program because of her speech/social/anxiety issues.  And she has her ophthalmologist appointment coming up as well.  B had his intake appointment with neuropsych and is scheduled for a full evaluation.  S is scheduled for an intake appointment with the same neuropsych.  I finally found a dentist willing to see all three kids (as soon as they hear heart kid, ADHD/SPD, and autism-like behaviors, the dentist offices are "full" or "not equipped") so those appointments are coming up, too.  Plus all of our normal appointments :p  The next month is busy busy busy busy busy :p

MRI results!

When Iz came back from her MRI, she did NOT want to wake up.  Kiddo just wanted to sleep and sleep and sleep.  Her nurses (she had two at this point) and the doctor joked that she exhausted herself fight the sedation so now she needed extra sleep :p  And she did fight it, right up to the end.  One of the nurses remarked on how surprised she was Iz was still awake and moving so far into the medication drip.  But she did eventually go to sleep and went back for her MRI. And in recovery, she slept and slept and slept :p

It probably didn't help that this was during her normal naptime as well.  Eventually we got a few stirs from her but she'd crack one eye open, peek at me, and then go right back to sleep.  Even sitting her up didn't rouse her much.

Eventually, though, she did wake up enough to agree to a Popsicle, followed by teddy grahams and a water (she didn't want the juice the nurse offered but was all for a bottle of water!).

 

Up until this point, she had only said a few words to me in a whisper but I think the medications were making her a little loopy because when she finished her teddy grahams, she belted out in a clear loud voice "ALL GONE NOW.  I WANT TO GO. I WANT MY PAWPAW."  LOL  They could hear her all over the recovery unit :p  So we packed up and off we went to the car.  I had her stroller, which was a very good thing as she was nodding off while we walked and I'm pretty sure she was asleep before we even left the parking garage.  She was a little wobbly the rest of the day and part of the next but I was told the meds would be in her system for about 24 hours so expect her to be a little "off".  That didn't slow her down--the doctors orders to sit and watch tv?  She wasn't having any of it.  We had her running around in my dads yard so at least when she fell over, it was in the soft grass :p  She wasn't going to just sit around!

I got the call late yesterday afternoon with the results.  She has a cyst in her brain near the pituitary gland called a Rathke’s cleft cyst.  Neurology says that these cysts are normally harmless if they remain small but can interfere with the pituitary gland.  Next step is to talk to the pediatrician and see if she wants to do some lab work (endocrine panel) to see if the pituitary is being affected.  I'd prefer to do the panel, just in case.  Neurology also said it is very unlikely that this cyst is causing her abnormal EEG so no answers there--next up is May's 24-hour EEG.

She speaks!!

When we went to playgroup on Wednesday, I thought it was going to be a rough day because the first thing Iz did when we arrived was to hide behind me.  And then she laid on the floor and covered her eyes (in her mind, no one can see her if she covers her eyes).  She did eventually start to play a little but if anyone spoke to her, she would cover her eyes. 

She moved over to the play kitchen (one of her favorites) and started to play with me and she didn't leave when other kids came over!  She interacted with them a little bit but mostly played by herself but not leaving when they came over is pretty big for her :p 

The EI teacher in charge of her playgroup is concerned by her lack of social skills and the big regression we've seen as far as speech and anxiety and is recommending Iz get another full evaluation for services to see if she qualifies to move into the next program to get extra support to help her reach her social/emotional developmental milestones.  She's not sure its severe enough to get her into B's program, which is a special education preschool program, but she may qualify to move into their "regular" early childhood education program with extra support.  We talked a bit about Iz's unknown neurological issues and the teacher is thinking we should do the evaluations towards the end of the year to give neurology time to do their tests and try to figure out what's going on so we know if the neuro issues could be causing the social/emotional issues (Iz has also started having outbursts than can rival B.  This is around the age it started with B so there is some concern that she could have whatever B has--he's got an appointment with a neuropsych coming up so we can try to figure it out!  Iz could just me mimicking his behavior but who knows :\).  So we'll see what happens.

At one point, all of the students and parents were on one side of the room and Iz led me over to the other side to play with her and she started talking to me--last week, not one word out of her the entire time (hour and a half) so her talking to me while we were in the room was great :)  Her favorite little girl came over and Iz talked a little to her as well.  She talked a little on and off the rest of the session so that was nice!  And she sort of participated in some of the songs/games during circle time :p

Yesterday was speech therapy and she opened up there and spoke to Miss Emily, too!  We are apparently on a roll this week :D   The first word she said to Emily was an accident, I think.  Up to that point, she'd been pointing or grunting or mouthing words with no sound.  But a word popped out and it seemed to open the floodgates because a few minutes later, after trying out single words here and there, she was talking up a storm.  Emily is impressed with her grammar LOL  She may not be able to say the words clearly but she knows how to put them together ;)

Her therapist (who we saw Tuesday) is going to try to come to a speech session so she and Emily (and I) can coordinate to try and get Iz over this anxiety that is keeping her from speaking.  She couldn't make it yesterday because she couldn't rearrange her schedule but she's trying to shuffle some things around to make it next week.  If she can't, we'll try to move one speech session to a time all of us can do and then go back to our normal time.

We've got several things coming up!  In a little less than two weeks we have Iz's MRI, B's neuropsych appointment, Mr. Piper is coming for a week, we have another genetics appointment, and then in a little over a month we have a 24-hour EEG.  I was told the EEG was an overnight but when they called to schedule they said nope, full 24-hours.  Yikes.  Luckily, we were able to schedule it during a time Mr. Piper will be home (not til May, though) because I have to have a second adult there.  I wish I had thought to ask some more questions :p  Will she be tethered to a machine in her room?  Because keeping a toddler in a hospital room is not fun.  Or is there some sort of portable machine so she can walk around the hospital and go to the playroom?  Guess we'll find out when we get there in May!