Hi my name is onie. About a month ago my baby boy had 3 seizure like episodes. The ER Dr wanted him to have an EEG and MRI done. The EEG came back normal but his MRI showed a 10mm herniation with reduced CSF space. We have since gone for a second MRI to rule out any syrinx. Thank God that was good. So we are waiting to see the neurosurgeon on Nov 14. No one has really explained to us what this really is. My son started doing “strange"things when he was about 6 months old. He will rub the sides and back of his head and pull his hair, he will arch backwards so far he looks possessed, he holds his breath awake and asleeep, he screams for no apparent reason and nothing seems to soothe him, at ten months he still cannot crawl and seems to have become more unstable while sitting, and he’s recently been getting his arm stuck underneath himself while rolling over. He prefers to just lay down on his back. He tires easily and has to take many"breaks” where he lays down and sucks his thumb. Any advice? Do yall think hes symptomatic? Do symptoms ever improve our just worsen with time? Thanks for any help! We are so happy to have found yall!
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Hi Beeba! We kind of figured he was symptomatic. I have been telling everyone for a while that he seemed different but nobody believed me. We are in ft worth texas and seeing a pediatric neurosurgeon at cooks children. I have no idea if he specializes in chiari or not. How would I find out id there were any chiari pediatric specialists here?
Thank you Beeba. Its so nice knowing I’m not viewed as a crazy overprotective mother!!!
Hi I have a 7 month old baby that have been dx with lots of things aspiration, dysphagia, laryngomalacia, left side weakness and asymmetry, she also has vocal cord paralysis. We knew something was wrong couple of weeks after she was born. She will cry for hours, nothing will make her happy. Doctor said she had colic. But it never went away, she does not sleep that much and also has GERD. She started arching her back at 3 months old and stiffen her legs at 4. It has been a long journey and has taken a toll in our family. We have 3 more girls. My baby currently gets pt, OT and speech. She has made progress on some areas and acquired new issues as the time goes. We spend 4 days at childrens hospital chicago were she was dx with chiari malformation. But they say she is not a classy patient, which it worries me. I don’t know what lays ahead for us. She will go for surgery tomorrow. Hoping for the best. There is not many babies with this issue, so scare.
Oh Carolinaaza…im so sorry to hear about your sweet baby girl. We will pray that her surgery is successful and her symptoms either resolve or go away completely. Please keep me updated. Is she having decompression surgery? How big of a herniation did she have?
Yes but her dr. Said that he may have to open her dura. Not sure I heard 5 but again this just happened 5 days ago I feel so overwhelm with everything.
I hope you find answers to the issues that u are currently having with ur baby. There is nothing worse that seeing ur child go through pain and being able to do anything for them
Carolina,
God bless you. I will praying for your little one and you too. Please let us know how she is doing.
Jenn
Carolinaaza said:
I hope you find answers to the issues that u are currently having with ur baby. There is nothing worse that seeing ur child go through pain and being able to do anything for them
Obie, I will be praying for your little man too!btw he is absolutely precious!
Aww thanks! ! We think so too!!!