#polymicrogyria in adults

[annaroy]

Our body suffers situations that need attention urgently and in a more elaborate manner. One such health issue query we received from Bangladesh for treatment in India was that made us work twice more. The condition was related to epilepsy but wasn’t exactly it. Polymicrogyria Treatment in India was asked by Fatima from Dhaka. We put our best minds for the consultation of her child and while the genetic condition was sensitive, we are here to tell you the specifics of the condition.

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[awoodenpen]

this too shall pass

The origin of the phrase might be a Persian tale. Or a Jewish story about Solomon, where he is either giving or receiving that bit of wisdom. Old, either way.

The story goes: Some one powerful needs to fend off the seasons and waxes and wanes of his emotions, the lows of depressions and peaks of ecstasy and crests and falls of all feelings. A side effect of being human. He asks for help finding this cure and his most trusted go in search. They bring the great and powerful man a ring, simple and gold. Inscribed along the band are the words “This, too, will pass”.

This year has been a trial. A trial after a trial. The Diva’s health is a big shrug emoji. The New Year started with a questions and troubles with pain and pain and pain and pain and what happens when a person is in that much pain. This includes: a loss of skills, a decrease in functioning, and screaming with crying (because, you know, pain). The specialists in our area blew us, blew her, off. I’d put my money on discrimination, at best; laziness, at worst. They’d see the Diva and blame her screaming on ‘behavior’ and ‘autism’ and ‘non-verbal’. Not illness, pain, or anything the signs and symptoms point at.

We started with neurology. Seizures? Twisting a doctor’s arm into ordering an EEG which gave mixed results and led to more questions. These were dismissed. We eventually got out to UVA and got some help, but no more answers.

We focused on her whole GI system. A scope and testing found EOE. Her local doctor for this was only half-concerned, at least compared to us. A speciality clinic also in UVA was a help beyond help. The Diva is now getting almost all of her nutrition via Elecare, a powder of amino acids, flavored in vanilla, banana, and chocolate (enjoyed in that order, least to greatest). Treated and managed, she shouldn’t be in pain. And yet…

Monday, I took her out before dawn, another drive an hour and half, to Charlottesville. Knocked out, because there was no other way, she had an MRI. Her brain, deep into her brain, and up and down her spine were all imaged, the first time since birth. This fact is wrong, morally and neglectfully. Caretakers, guardians, and doctors had all failed in getting this, not doing it or refusing to do one when we asked.

Preliminary report: Brain- bilateral occipital polymicrogyria (gray matter is small), her brain surgery at birth left gray matter all mixed up and structures only partial removed, and Chiari malformation type 3 (the brain has sunk down into the neck and is herniating; this is unheard of to be seen in a 13 year old). Spine- tethered cord (which can explain the decrease in function, loss of function, and pain pain pain pain).

None of this requires an immediate emergency plan, as she has likely lived with and like this for years and it gotten progressively more impactful. This is exactly what we have seen. It does require a critical and detailed plan, because this is not good and it will definitely require spinal surgery and probably some sort of brain surgery, and this is the exact metaphor for describing walking into something major, delicate, and horrible.

We have had this information since Thursday night. Then, we each poured over research and journals and things much less formal. We had a laugh at a Google suggestion for ‘herbal remedies for chiari’. Yesterday, Audra redid our hallway floor with laminate, pulling up the carpet, removing baseboards and nails, laying down the floor leveler, and laying in each piece one at a time, noon to 2 AM. I took the dog for a walk that was more of hike that was a drive that was longer than the park across the street.

I read about that phrase, its origins and stories, earlier this week. I inked it in bright blue ink in a notebook and a dark purple ink on the inside of my wrist, in Hebrew, several times now. I’ll need it.

We told the Boy, his sister by law, by kinship, and by blood. He’s processing it, the same with the adults. We told the Diva too. People will ask us how much she understands; she’s had several episodes of hyperventilating and tears since Thursday night, the same with the adults. ‘This, too, will pass’.

[tdennis3333]

As an organization nothing is possible without the hard work that goes behind the scenes in making things possible for so many families. As we approach February we've already assisted three families with the ability to attend theme parks through our partnerships here in Orlando with the give kids the world program. We are constantly looking at ways to improve our communication across the globe and we are so excited to announce our newest board member and advocate that we have known for almost 12 years Lowis Fisher mom to Luke with bilateral Schizencephaly lives in rainy South Wales She is a fluent welsh speaker, studied psychology, Worked as a support worker in a special needs school before her life changed and was touched by a rare condition. Lowis had Luke at the young age of 16 , he was diagnosed with open lipped #Schizencephaly and #Polymicrogyria (PMG) is a condition that affects the development of the human brain by multiple small gyri (microgyri) creating excessive folding of the brain leading to an abnormally thick cortex. This abnormality can affect either one region of the brain or multiple regions.) Lukes official diagnosis was on May 19th 2005.(Schizencephaly awareness day!) Lowis and Luke are a strong team for advocacy and awareness and have spent the past 15 years fighting for not only the rights of Luke's life but the right of all children and adults fighting this condition and rare conditions in the United kingdom. "We are his voice , his life. It has been a rollercoaster of emotions but Luke and I are so much stronger for it . Luke is now in year 11 and is studying Math, English , History, RE and Geography . He uses an eye gaze communication device to complete work , and can use it to communicate with others . He actually was able to speak to Stephen Hawking with his device before he passed away . He is a fantastic advocate for children with disabilities and wants to leave his mark in the world . He knows first hand how it feels to feel trapped in a body that isn’t working ." We are so excited to have you on our team! #wearerare #raredisease #raregiveback #braininjuryawareness #strokesurvivor https://www.instagram.com/p/B7qbIXfh9xb/?igshid=x5k7h9vmkngo

[elyseviolette]

Good News From Sad Times

We still don’t know a whole lot about Riley’s condition, to be honest. There is only so much research that can be done for someone with such a unique case, such as Riley. We knew it was a genetic disorder and we found out fairly recently that it comes from Will’s side of the family. We didn’t know anything else about it. As far as we knew Riley was the only on in the family with it. 

Well, sadly, Will’s grandfather passed away on father’s day. We all felt a deep sorrow and knew that we had to get Will to the funeral service to say his goodbyes. Will traveled by bus to Michigan to be with his family during this loss. While he was there we found out some unexpected, yet very hopeful news. 

One of Will’s cousins (for all intents and purposes), also had microcephaly and polymicrogyria. She was not diagnosed until she was 19 years old. Her family had just been told she was “slow�� her whole life. When she turned 19 she had a seizure and that is when the testing began. They found both conditions. She was put on seizure medication and is doing fairly well. We were actually happy to hear this because we were told Riley would most likely have seizures and they would be deadly, but his cousin is doing fine. Now they do not have the exact same conditions, but similar and closer to anything we have seen before. 

We were dying to know how she was since, again, we had never met anyone with similar issues before. She is 24 years old and again, doing fine. She does have delays and some muscular issues, but holds down a steady job. She lives at home because, even though she is strong and well, she still needs enough help that living on her own is not really a possibility. Now, we had always assumed that Riley would always have to live at home because of her disabilities, and we are fine with that. It gave our family so much joy to hear how old his cousin was and that she was even able to work. That is so amazing!!! We had done research and it basically said that people with conditions such as Riley’s don’t tend to live very long, yet Will’s cousin is in her mid twenties. That makes us so happy to know that there is more hope than we thought. We always pray and have a vision for her to be a successful adult, but were not sure what the reality of it was. Now we have that hope and family that we can look for and talk to in order to support each of our children’s lives. We are thankful to God that even though the family suffered a loss, it brought the right people together in order to hear more amazing and hopeful news, than we ever thought possible.