Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 Hi Darla, Bunch of stuff jumps out at me: high amonia levels and other labs means she is in acidosis already, don't know if they checked lactic acid but I'd hydrate her the best I can and DEFINITELY give her ibuprophen to get that fever down ASAP as fever is extremely dangerous for mito kids, even a low grade fever. I'd also get her in to see the neurologist if yours is nearby (whoever treats the mito). Sponge the fever down if need be. The tracheal thing: my kid (and her mito brother) both had "tracheal malacia" as young babies/children till about age 5, which is a condition of softened tracheal rings which cause or at least allow the trachea to collapse under stress. I never related it to the mito and my daughter did outgrow it (her brother didn't survive but didn't die from mito at age 4) but it was touch and go on many occasions. I'm sorry you have to go through all this with so little support from the doctors who are supposed to be helping you. My prayers are with you for courage and strength. kj mom to De-Arbra age 16 Quote Link to comment Share on other sites More sharing options...
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