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Thank you for the add. Two days ago, my sweet baby boy, who just turned 7 months was diagnosed with LNS.
He's been having problems since about six weeks old. i.e tense stiff muscles, spasms, reflux. At six months old, he was admitted to the hospital because they assumed he was having seizures. When the MRI and EEG came back normal. Our amazing neurologist wouldn't stop until we got answers and start genetic testing. tiffany blue styled items to wear for a prom
My sweet boy, is developmentally delayed. He can barely ho ... ld his head up, can't sit up, can't grab things ( his hands are always clinched shut).
I've read as much as I can up on LNS the past two days. My mind hurts, I'm scared, I don't know what to expect....
Tucker has started PT, OT and speech... will any of this help with symptoms of LNS?!
Currently we are in the ICU with Tucker, because he spiked a 105.4 fever!! The nurses and doctors said they have never seen a temperature that high. They are running every test in the book.
They tested his uric acid levels last week. They were 9.2 so they are going to start him on medication to help lower that. Today, in the ICU they have done a urine analysis, and scans of his kidneys. They plan to send him to nephrologist very soon.
What scares me most is what I have read about children with LNS life expectancy. 10-20 years. Is this true?!?
Please share your experiences with me, please give me so hope. I'm terrified for my sweet boy.See More