Been a while...

Let's see...

Cardio...Miles is doing well cardiac wise. His next check up is in February. He gets tired alot but I am not sure if that is behavioral or heart stuff. His fingertips are red all the time but who knows...that could be marker!

Neuro...He has not had a seizure since June which rocks! We missed our appt with neuro this last time and weren't able to reschedule til the spring. We are holding steady with 10mls BID which seems to work very well for him. One thing he does do is fake staring off which bugs the heck out of me!

eye stuff...It still does it but I don't notice it as much. The eye doc says it IS 4th cranial nerve palsy eventhough it does not show on the MRI. We just watch it and make sure that his head tilt doesn't get worse and follow up with the doc.

Renal...We are officially OFF of the BP meds!!! His BP was holding pretty steady on the meds so we did a trial off of them and we have not gone back on them. I have spot checked his BP from time to time and it has been a little crazy so we are keeping an eye on it, taking it once a day. The doc was a little concerned with the 112/95 but mostly we get 116/66 or somewhere around there.

We are all swine flu and reg flu vaccinated and staying healthy - mostly thanks to his breathing treatments and inhaler. As long as we stay on a rigid schedule he does very well!

Riley is doing great in 2nd grade! He got all A's and is playing the recorder. His birthday is next week on the 20th...I can't believe he will be 8yrs old! wow!

My dad's birthday is this saturday...our first one without him. I miss him so much!

I think we are all ok on all other fronts except Miles' behavior! Geez he has been a handful! We are working on that though.

still no answers...

So the pediatrician today says she doesn't think it is neuro or cardiac but possibly renal...hypertension or hypotension. I will call renal next week and talk to Beth (the renal nurse), she is great and I will get Dr. Feig to look over the tests and maybe call the ped to get her take on it. We did some blood pressure stuff today - one laying, one standing and one sitting. laying was about 103/62 ish hr was 108...standing was about 106/65 ish hr was 103...sitting was 92/29 with a hr of 39. She came back and got his hr again and she got 89 sitting. hmmm...redid the bp and got 96/59 or something like that. bettter but still very different...

today he did well. He finished the holter and that will get turned in tomorrow. I am so tired! I am off to dream land...

love and hugs to all!!!

No Answers so far...

Miles was released from the hospital yesterday with no answers. The summer camp/daycare he attends called and said that he was very flushed, glassy eyed, unsteady on his feet and slurring his words. Their dad and I rushed up there to get him/make sure he was okay. The teacher then told me that while we were on our way up there he said that his heart hurt and he needed someone to listen to it. He looked okay to me when I got there - quiet, calm, reading a book and singing sweetly - he was also not sweaty. We called the pediatrician who said to bring him to the hospital to check him out. Her concern was some sort of ingestion of something OR a partial seizure.

I love it when the doc calls ahead cause we got right into a room - not wait in the lobby. :) We figured they would listen to him, check his electrolytes, maybe check trileptal levels and send us home. They admitted him. Cardiology consulted and said they didn't think it was cardiac - we did an EKG just to be sure. The ER docs theory was Ischemia of the brain - not enough overall oxygen to the brain which caused it to seizure up a bit causing stroke like symptoms. Like a stroke without the blood clot. Neurology admitted him and wanted to see him in the morning. He had an uneventful night, they monitored his pulse ox which stayed steady at 95% or so.

Neurology said it did not sound like a seizure - the theory from him was a combination of things. He said if he has low cardiac out-put already (which I don't think he has) he may not profuse his body as well as others. Couple that with slight possible dehydration and you get strange neuro symptoms. (if he didn't profuse well - would his pulse ox stay that high?) We checked his electrolytes and they were normal - theory out the window. Neuro says it is cardiac.

Cardiology comes and looks at him and says he looks great (which he did). They put a holter on him and sent him home. We will follow up in clinic for an echo. We didn't do the echo while we were there because Miles was sick of being in the hospital and was not listening to anyone - at all. An echo would have been torturous!

So...sent home with no answers. One time yesterday while we were there Miles said his heart hurt again. I hope the holter will show something or that we can figure this out another way.

We got some pictures taken...they are great!!!! Enjoy...

Two posts in one...

HAPPY BIRTHDAY MILES!!!!!

Today is Miles' 5th birthday!!!! I can't believe he is so big! He had a great birthday party over the weekend at Chuck E Cheese and loved playing with all of his new toys/games.
The last 5 yrs have gone by so quickly and so slowly at the same time. When I think of all he has done in his 5 yrs versus what I have done in my 33 yrs it is astounding. I am so proud of him for so many reasons.

He has his 5yr check up tomorrow and will need to follow up with his neuro from the seizure (if he will return our calls...grrrr!). He has been quite tired all the time since the seizure last week. No obvious reason for being so tired and doesn't seem to be sick at all unless it is coming on very slowly. He just doesn't have the stamina he did just a week ago.

Today we will celebrate again but I am not sure what we will do yet. Thank you all for being on this journey with us and praying for my amazing 5 yr old maniac :)

April 30th

I was going to post about how we got the results of Miles' trileptal levels and they are great - 23! We want it between 15 and 35 so this is perfect! But then the little stinker had a seizure last night. This time he had a petit mal seizure instead of a grand mal. It lasted about 15 minutes - which is amazing for him! Sean called me when I was at work at the bar and I rushed over to his place. The EMTs were there and the seizure had just stopped. We decided to go ahead and take him in to the ER because he has never done that before - just stopped after 15 minutes. He usually seizes much longer (like 2hrs) and we didn't know if he was going to start again or what. Texas Children's had the 1st death from swine flu yesterday (an 18 month old I believe - so sad!) so they were backed up for 4hrs. The ambulance was redirected to Memorial Hermann Children's. It was a nice hospital and everyone was very nice. However...there is so much to be said about continuity of care. Miles having never been there before with all of his issues was not a good idea. They were great, don't get me wrong, but none of his doctors are there. They couldn't get a hold of his neuro, ped, the neuro's NP...nothing. They took a chest x-ray but I am still not sure why, monitored him for a bit and sent us home. Fast ER trip overall. He follows up today with his pediatricians office - at the same time that I have a root canal so I won't be at the appointment.

Overall, despite the seizure yesterday, Miles is doing FANTASTIC! He has been healthy, not needed any breathing treatments, been doing well at school (although he did hit another little boy yesterday)...just doing great! Riley has been doing very well too! Two weeks in a row of behaving well in class (he is super silly and it gets him in trouble sometimes). Also, scored amazingly well on the Stanford again this year.

Miles had an appointment with his neurologist Dr. Fernandez yesterday. His trileptal levels are low again. In January when he had the seizure they were at 5.5 and in February when we followed up they were 3.4 (or 4.3, I can't remember). He is supposed to maintain a steady level between 15 and 35. Dr. Fernandez said that he processes the trileptal through his liver too quickly. He wants to raise the dose again (AGAIN!). So he upped it to 10mls BID - which is 1200mg/day! (Aunt Christy, don't you take 1500mg/day at 32yrs old?) He said there won't be anything to worry about with that quantity of meds in his system (really?) except him being tired. Miles has never really gotten sleepy when he has had his trileptal - well the very first day he took it he got sleepy - in Oct 2007 - and we have raised the dose 10 times since then. With this low level of meds in his system he could really have a seizure at any time. He said it takes 10 days to really get in the system and get a good level. We will check it in 2 weeks and see where we are. I put a call in to the pediatrician to get her take on this. Do we just continue to raise his dose or should we find something else that works for him? The normal dose of trileptal is 25mg/kg and now Miles is at 70.5mg/kg! Almost 3 times the normal dose. CRAZY!

After the appointment we did the labs from Dr. Feig - the renal specialist - he checks a complete metabolic panel every time we go. We saw him earlier this month and couldn't get any blood on the first try. Let me tell you - Alma cream is the bomb! This was the first time we used it and it was great! There were still lots of tears but mostly because of fear of past experience but he did great and they got him on the first stick! Oh yeah, Renal went well. His BP looks great but because of his severe regurgitation we will keep his meds as is because coming off the meds could speed up the timeline to the next surgery and we don't want that.

Went to see Dr. Lai the opthamologist. Still no clue what is going on with his eye. Not nerve palsy, not a tumor, not muscular and does NOT think it is myasthenia gravis :) That is great! What the heck is it? check out the pic. Overall it doesn't seem to bother him except the slight head tilt.

I think that is it...oh, since the undecended testicle surgery in January Miles has grown 2cm! and gained 2kgs!!!!!! very cool!

love to all!

Update

Sorry I am SO slow at updating the blog! The MRI showed little change from his last MRI which means no brain tumor! (yeah!!!!) He does have hippocampus sclerosis but so do 65% of epilepsy patients, some damage to the nerves in his white matter, inflamation in his paranasal sinus and mastoids and NO 4th cranial nerve palsy.

We saw Cardiology in February - everything looks great! A little more narrowing to his conduit and valve and the valve no longer works but he is tolerating all of that very well and won't need surgery this year! We will see Dr. Justino again next year :)

We followed up with the eye doctor to get his take on the MRI. With no nerve palsy - what the heck is causing his eyes to do that thing? Well, Dr. Lai didn't have any answers for us except that he thinks Myasthenia Gravis is a long shot (thank God!) becasue the symptoms are severe from what he says. He has been the first to say that but he said that Miles' respiratory system would tire out during the night and he would wake up gasping for breath and that he would have extreme fatigue, and his eyes would droop. We don't have any of that so I feel a little better about the possibility of MG. The neurologist is next on the 19th - he was the one that said MG in the first place so lets see where he is on it. Miles had his thymus gland removed during his open heart surgery - which is one of the treatments of MG. I asked that if he has already had it removed could it be possible that he is already being 'treated' for it and that is why we don't have severe symptoms? (Sounded logical to me) He looked at me like I was speaking in another language so maybe I didn't come across. I will ask the neuro the same thing. Anyway, concensus from the eye doc is that we don't know why his eye does this. It isn't muscular, it isn't nerve palsy, it isn't a tumor, he doesn't think it is MG. His head tilt is only about 5 degrees so far and he doesn't complain of seeing double very often. So we live with it for now I guess. We go back in 6 months and if it worsens to the point that his head tilt is about 10 degrees then we can do surgery. My question there is - surgery on WHAT? His eye I know but if it isn't muscular would that do any good to cut and reattach the muscle? (no!) Who knows...I sure don't.

Riley is doing great! Just finishing up his TAKS testing this week (for those of you from KY - that is like the KEST testing we used to do...a baloo is a bear, wuzzle means to mix, a yonker is a young man - you know you remember that!) He is so smart, and so fun and silly (sometimes too silly!) and he and Miles love each other a ton! He is the best big brother and has gone through so much with Miles - often times not getting the attention he deserves. God picks very special children to be the siblings of chronically ill children! He has such a loving heart - we are very blessed!

I will try not to say away for too long...

We were due...

It has been 5 months since his last but, Miles had a seizure on Sunday and was admitted to TCH for observation. Thankfully he only had Valium this time! He was crazy and belligerent when he woke up initially but went back to sleep for a LONG time. When he woke up again he was such a doll! He was so sweet to everyone and smiled a huge grin when anyone came in the room! He also opened his mouth right up when the doc asked to see his badly bitten tongue (from the seizure) - this tells me he was still drunk! He doesn't open his mouth for the docs normally - not at all!

We were released yesterday around 2:45 or so...well we were released a teeny bit earlier than that but we were in the middle of eating lunch...then we ALL fell asleep! Anyway, this seizure lasted only about 45 minutes with only about half of that with solid convulsions. He starts with this gaze and is still responsive - even while going in and out of convulsing he is responsive to a point. It always scares the crap out of me cause you think he might be completely aware of what is going on and that always makes me incredibly sad. His dad said that the EMTs this time were great which is awesome!

Next week - the 27th - is the MRI...send good thoughts for good results! I am not sure what good results would be yet...MG is progressive...brain tumors suck...Maybe good results would be that everything is clear and the eye stuff is completely unexplainable and won't ever be a problem for him...oh, and one day just clear right up, never to be seen again...is that possible? I hope so!

Myasthenia Gravis or Brain Tumor??

Miles had surgery on the 6th for his undecended testicle. It went really well! We did get the anesthesiologist we requested so that was great - it makes a huge difference for Miles when he is familiar with the doctors, at least it seems that way. He and Dr. Campos went skipping down the hallway to surgery together (not kidding, like really skipping - it was so cool!).

Next on the horizon for my little man is to get this MRI done! We are #1 on the cancelation list which is good. Now I just have to keep him healthy enough to have it done! Lots of breathing treatments should help with that.

I talked to his pediatrician about the eye stuff and this is what was said...Myasthenia Gravis is a possibility. This is an autoimmune disease that attacks the voluntary muscles. It causes extreme fatigue but gets better with rest. It can be debilitating for some but most people live a pretty normal life :) The treatments for it include an immunosuppressant, IVIG (I think that is right) or possibly removing the Thymus Gland. There are others that I can't think of right now. This disease can be exclusively ocular - which might be the case with Miles. We have to test him for it...however...it is apparently extremely rare for children his age to have this disease and we aren't entirely sure which tests can be performed on him just yet. The doc is getting with the rheumatologist to discuss Miles and will get back to me soon. The MRI is to rule out a brain tumor. Frankly, I don't like either of the options and I am praying that it is just a crazy fluke and he just has a funky eye :)