Good morning, I recently joined this site to learn more about chiari type 1. My daughter has not been diagnosed with it yet but the doctor thinks she may have it and we are awaiting an MRI. When I look at the symptoms for infants, she pretty much has or had all of them at some point. She had neck stiffness- she received therapy and it has improved although not completely.
For a while she couldn’t move her left arm but that seems to have gotten a bit better. Her gag reflex was awful. Couldn’t take any type of solid and would throw up all the time until well after her 1st birthday. She still chokes frequently but dowsnt throw up as much. she Has bad constipation as well. She has low tone and has been late with most of her milestones and right now is struggling with speech. Currently, she is on oxygen at night for breathing problems and central apneas. Her balance comes and goes-
Sometimes it is fine and others it is really off. She is generally
Very happy which makes me think she does not suffer from headaches. My questions is can symptoms come and go? Wpuld she be absolutely miserable if she had this? She is 22 months old. Does anyone have anyone experience with this? Thanks in advance!!!
Abby,
Thanks for your response. She does have central sleep apneas but they average around 3 an hour which is considered within normal range (so I am told). The bigger issue is that her oxygen saturation drops very low with and without the apneas. Therefore, she has been on oxygen since February. This was all found in a sleep study. She is seen by a pulmonologist and nuerologist who is sending her for an MRI. We are at Children’s in Boston so we feel very fortunate to be so close to great healthcare. As of right now, there is no diagnosed explanation for her breathing issues except for possible low pulmonary reserve but I know it is very rare to for a 22 month old to be on oxygen at night. I dont want her to have to deal with a CM but i also dont want her on oxygen the rest of her life so I am not sure what I want for an outcome.
IS it possible for her to happy and have CM? From what I have read, the symptoms are pretty dehabilitating and people really suffer.
I am so sorry you have to deal with it. The next month is a waiting game because we cant get an MRI until early July. She needs anethesia and special care bc of her lung issues so it is harder to schedule. The nuerologist told us she would get the surgery if she has it because of her symptoms. I am not sure what a nuerosurgeon would say. Again, she has not been diagnosed but I am thinking this is all a huge coincidence or she likely has it.
thank you for taking the time to read.