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Rett is a progressive disorder – it will get worse and worse until there is a cure. In other words, we are never out of the woods. Every girl’s Rett syndrome is different. These were Maggie’s Rett symptoms last year.
Maggie has lost her speech.
Maggie’s arms & hands have Parkinson’s like tremors.
Maggie hasn’t lost all hand function, but she has lost enough.
Maggie’s right hand constantly wrings so she wears a glove to protect herself.
Maggie’s left arm constantly hits her face, so we brace it to protect her.
Maggie has had a few Rett Episodes, which are similar to seizures but not seizures.
Maggie has GI issues.
Maggie’s body temperature has a hard time regulating.
Prone to respiratory infections.
Visual sensory processing disorder
Sensory processing disorder, proprioceptive and vestibular.
Maggie has Global apraxia, which is difficulty with motor planning. Motor planning incorporates every motor skill. Walking, climbing, eating, playing,etc.
Maggie can still walk, run, jump, follow directions, smile, laugh, play, swim, climb and eat by mouth.
Everyday she works hard to keep the skills she hasn’t lost and to regain those that she has.
And Maggie is considered mild for Rett
This past year, Rett did progress. Maggie lost more hand function, we are a moment away from full loss of function. Maggie now drools more often and has tongue thrusting. She now has more anxiety. She has breathing problems, holding her breath for short periods of time and hyperventilating with regularity. Maggie has also had several seizures, right now they correlate to when she is sick. Her right arm is also very stiff – which may be the beginnings of dystonia…tbd
This is Maggie’s Rett and what she deals with everyday. These are other symptoms typical of Rett that Maggie does not yet have. But as it progresses, we may have to deal with them as well.
Scoliosis, fragile bones
Feeding Tube
Regular seizures
Circulatory problems
Impaired Cardiac problems, potentially causing sudden death
Difficulty walking, leading to wheelchair
Dystonia
From the moment we get up to the moment she falls asleep, we help her fight for her skills. Maggie is a fighter! Rett keeps knocking her down, but she gets back up. This is why we fight for her. For a cure.
Every time I read about Maggie’s updates, I am overwhelmed with emotions. I am so proud of how much you’ve achieved individually, as a family and as part of a greater awareness team! I am also hopeful for continued progress to alleviate Maggie’s symptoms. You’re always in my thoughts and prayers as is a cure for Rett Syndrome! Thank you for being so strong and sharing your experiences. May you, AJ and Maggie end each day with a smile, though hard to muster, knowing that you and your daily accomplishments are truly amazing! Sending big hugs filled with love, peace and happiness!
Thanks Lisa. Miss you.
have you tried CBD it is part of the cannabis plant, and contains no THC. Its help many children with brain disorders. i live in AZ and you can buy it at smoke shops or medical marijuana shops. it is perfectly legal and safe.