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