Sunday, December 30, 2007

More Disturbing News

We got some very disturbing news for Christmas and just want some time spent together at home right now between the next visits and series of procedures and stuff with my son.
The Drs think he's having a series of TIA's and that they also think there on the right path direction of more answers. They put together 4 & 5 opinions and more Drs working together from the Boston Area From Children's Hospital, Mass General & the Brigham. Which on Christmas Eve came into my sons room with ALOT to tell and not talk about and no straight answers. From what they are speculating is that he's having some minor episodes of Central Sleep apnea being caused by lesions in his brain and/or possible tumor they can't yet locate which are from TIA's also known more commonly as mini strokes that you recover very quickly from but the technical term is
called transient ischemic attack also maybe accountable for some seizures and can be associated with epilepsy as well.
Therefore all MRIS, CTs, Xrays and other tests haven't picked them up as any structural damage. They happy with these results which gives them more reasons to look further into the brain function. They also found some dysplasia (isn't this abnormal cancerous type cells?)as well and are working on bringing him back ASAP into the hospital again for more diagnose reasoning testing and PET scan. They decided it's safe for me to bring him home while they set all this stuff up for a long term admission and started him on some newer drug that have some serious side effects. They told me about 20% of children on it develop a fatal rash and any skin changes at all to being him back....can't be late or miss 2 does would have to be seen, can cause bone marrow separation, also dizziness, drowsiness & blurred vision, headaches.. These are most common. They do think it's be more beneficial to have him on these types of drugs then nothing.
Some sections of his brain didn't develop properly, may have happened while in utero but nothing I did or didn't do, just happens and more common with preemies.
this is not benign epilepsy anymore, he wont outgrow it, is considered disabled and paperwork was summited to social security and he's eligible for past payments as well, but we wont get because gross household income to much were not living in total poverty, just on the poor side. whole other issue..
It's permanent , not fixable, curable or possible not operable.
So this horrible drug is suppose to help keep his brain at bay for a while. They don't' know the long term effects.
I'm suppose to be happy with this? this is what the neurologist call good news and heading on the right track . They may not ever be able to locate it on any of these tests/procedures they have to put my little guy through.
Oh and it's also goes together with ADD & low end Autism as well. (which they like to get him on some medication for that too but not until after the next admission and series of next steps are done first because other drugs maybe added Which they suspect he also has and accountable for lots of his temperaments/behavior issues... (hmm not because of everything they are torturing him and not many straight answers!!!)
oh and he has RLS to Rest Leg Syndrome. Unusual for a little kid.

I do one one thing right now, in all my years of living with a chronic illnesses and 3 children and lots of specialists! Neurologist have to be the worst with information and helping, explanations, answers reasons anything!

To me hearing all this is that they still basically don't' know and not sure suspect and guessing just isn't exceptable I want answers and want to let me little boy just be a happy kid and be a kid... I also want to know what this means for him which they can't tell me that either but will keep me informed step by step and will be in better communication.....????

I have so many questions and they can't give me direct and straight answers?? I just don't understand.
sorry wish I had better news and answers for everyone!
Him keep banging his head is OK just avoid trauma to his head.....hmm him banging could be just that it makes him feel better, jogging a mm sized thing(s) also make it harder for them to locate and try to get to it to or treat it....
Not sure and don't' want to jinks us here but I hope this is the last of bad news for this year!
I know we have a long way to go and very long road ahead.....the past 10 months haven't been very much fun either to get tot his point...

Some good news I have a package I need to open from someone! Along with a stack of bills and junk mail! Hmm Where to start???
oh yes Santa did visit us in the hospital....It was nice not the same but nice under the circumstances.
He's a little happier, holding up quite well through all of it and being so brave I'm very proud of him!! He looks and appears to be a typical 6 year old boy whose on the bit of a small size then most but good! He has a few cards to open from his class & teachers... How sweet! ;o))

Thank you!
Hope everyone enjoyed the holidays and Best wishes for the New year!

Tuesday, December 18, 2007

Home and back to hospital

My son's surgery went well, he stayed in the hospital a couple days.. Good thing we had a HUGE storm!! Only thing ran out of cash!! only the coffee shop (Dunkin Donuts would take debit card!) They ran out of foods by the next morning too....and splenda...
So my sons beens home for a couple days, getting HIGH temps and bad pain stomach cramps must be an intestinal thing... chalking that up to catching something most likely of course slowing him down healing wise..
The Neurologists called me 3 times today.. They finally received faxes with some new data from studies last week. They discussed it and started going over and called me 3 times!! They say that the new data regarding mini stokes causing seizures and lesions that he may NOT have another seizure disorder and want him to come in first thing to see another specialist up to Boston! (when we get there to have the DR page the neurologist to do a conference call while were there)
They are extremely concerned about these diagnosis pertaining to the sleep observation, said they very harsh and serious conditions not to mention rare in an Adult let alone a 6 year old...
The Neurologist did say I should be able to take him back home, but she is arranging a plane longer stay in the hospital ASAP!!! She's on rounds in the inpatient unit for a couple weeks and would like him to be there with more monitors 24/7 for a long stay??? I guess it takes a few days to set up with the observation inpatient unit and getting a bed...
Theres a good chance we'll be staying at the hospital through the holidays...
I just really prefer that the figure this out fix him treat him do whatever! They did also tell me YES in fact with this happening if it's really if and something else isn't being overlooked then potentially he won't ever be able to drive or work!! Don't think he'll out grow it and just the beginning on a LONG road for all of us! the longer it takes and he develops more scaring on the rain.. NOT GOOD!!
Just beside myself tearing us all up! DH & I fighting really badly! Wants me to stop babying him! OH NO!! I'm not! He's in denial!
So much for baking & cooking! Finishing shopping, wrapping of anything!I just want to curl up in a ball and cry!

Monday, December 10, 2007

Sock Wars & updates

Sorry it took so long to get the sock wars photos up and updates. It's only taken me 2-3 days to do this post...

there thick & comfey

First year I could get my son to get close enough to Santa for a picture

We've had alot happened in the past week or so now .
My son woke up one night and was scared, couldn't speak or get any air in to breathe.
I tried everything I had for emergency medicines waiting for the DR to call and he was getting worse so I didn't wait to ran him to the closest local ER.
They took us in immediately when they saw us walk in and me carrying him.
They first found out they couldn't see down his throat it was closed and swollen. Not tonsils either. Stenosis of his upper airway. Low stats, heart rate under 50 and this wasn't an asthma attack!!
kept him on monitors with low O2s, etc. gave him high doses of steriods to get the swelling down right away,etc.
They did a sleep observation overnight and found out he's having clusters of mini stokes, causing seizures and lesions on the lower part of his brain. The lesions are not sending the proper signals to his body to tell him he needs to breathe when he's sleeping. We're so very proud of him, being such a big brave boy through everything!

They also gave him a couple new diagnosis's. The said he has centralized apneas and RLS which is rare in adults let alone children. Which need to get treated immediately or corrected up to the neurologists. First they need to do a surgery tomorrow morning to help his breathing issues first (of a couple or so) and fix the stenosis of his trek. Then afterwards healing time before the next route.
The DR thinks that all of this is contributing to his learning issues and behaviors issues and his IEP at school. They still think he may be somewhat high end Autism.
I had to get a seizure monitor for home to monitor his o2 and movements during the night.
So I haven't be online much nor will I be in the coming weeks.
he's out of school for a while hopefully he'll be ok to go back in Jan.
I can't enough concentrate long enough t relax and do any knitting or anything really.

We're not even thinking of the holidays either.
They did have their holiday pageant and my son was so scared and looked as though he was going to cry on the stage!! Beforehand he was singing Jingle bells and so excited...(he doesn't do well in crowds, just doesn't like crowds or loud noises and music, he never has)

then The principal and vice principal took my kids to a holiday concert with a couple of their friends this past weekend. Kinda expensive to.. the ticket stubs were $45 per ticket! YIKES! (my son wouldn't get in the pictures at the concert hall downtown)
I'm just glad he got to participate in some holiday festivies. He's going to miss a few but its ok as long as he gets well soon!

Thanks for the notes and sorry it took me so long to send out updates!
Thanks so much for all the thoughts & prayers & for all the support!

Hope everyone enjoys the holiday season!
Hope to be back soon! (will check emails but can't promise it'll be everyday so please be patient on hearing back from me