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We've been dealing with doctors for a year now with no answers. My 15 month old son has episodes where he completely zones out, hes unresponsive and goes pale. It last a few seconds to a couple minutes. Sometimes up to 20 times a day. Hes had 5 EEG because of abnormal movement with his head, one test was abnormal but not seizures at the time. He had a complex febrile seizure a few months ago and sense then the zoning out has increased. And in his sleep he jerks around, sometimes his body lifts off the mattress. At that time he screams like hes in alot of pain. Im not sure if maybe its a muscle spasm. Hes very violent with tantrums. And he also has alot of weird behavior. Mild speech delay.
The doctors we've seen have no idea what is going on. the poor boy is awake every half hour through the night in pain that he sleeps most of the day. I need advice, what should i be asking the doctors about, certain test i should be asking for? we really need some help.
Im sorry you are having to go thru this. I know how scary it is when something is going on, and no one seems to have answers. Have you seen a Neurologist? or a Geneticist? I would start there for sure... it seems like one of the two would know why he is doing that. Have you seen any specialist yet?
I'd get it on video and see a pediatric neurologist or pediatric genetics Dr. If that doesn't work, I'd take the video and take him to the closest Childrens Hosp ER and demand answers. I'm sorry you're watching your DS struggle with no answers. ((Hugs)) KUP!
The zoning out sounds like petit mal seizures. My DD has them. But, she doesn't act like she's in pain and she sleeps fine.
You know, my DD has an undiagnosed genetic syndrome (with some odd symptoms also) and is seen by genetics. To be honest, I'd start there next!! Please KUP. I know what it feels like to have no answers and it's so hard. ((Hugs))
The other ladies gave the same advice I'd give. My son has a genetic issue, but we knew what it was before we even saw the geneticist. It's nice to have someone check to either confirm or disprove suspicions.
I'd definitely get video-several specialists have asked us to do it for different things, and it really speeds along a diagnosis and treatment.
Good luck. Playing "Specialist Tag" really is no fun, but hopefully, it will eventually put you on a path to getting your little one better!!!
Hey sweety HUGS to you and your little guy.
I know it sounds far fetched but have you ever gone to a chiropractor? My son sees one who is also a nutritionist and works with detoxifying the body.
He sleeps much better since getting his neck adjusted. the chiropractor did a xray and found his neck had a sharp bend instead of soft curve. he fixed that and the chiropractor says blood flow, etc is feeding the brain much better now that those nerves are not being constricted so to speak.
Also, our DS is getting heavy metal toxins testing done. this is something we are doing for Autism (understanding your son doesn't have Autism)..just wanted to mention that I've read good things for others with issues other than autism when they've tested for high levels of metals or maybe a depletion of essential metals/vitamins and get help with balancing out the chemical part of your body.
it won't be the cure for your son's situation, but it might be something to look into and see what help it could have for your son.
God bless, and Good luck in your search for answers!!
Mommy to Briana - 10, Laura - 9, Kainan - 8, Sara - 6 1/2 , Andrew - 4 1/2 and Nathan - 2