My daughter has a small bump on her forehead that wasn’t going away. We got an MRI done in Oct to make sure it wasn’t anything serious. The result was it is a demmeroid (sp?) cyst. Our pedi suggested we follow up with neurology to see if they suggested getting it removed or not. So our cyst follow up appointment was yesterday and the doctor said as long as it wasn’t getting bigger then the need for surgery isn’t urgent. Then he dropped the chiari diagnosis. He didn’t make it seem like a big deal but the more I’m reading on it, the more I feel I need to be informed since my daughter is so little. We are set up for a sleep study to make sure she is not displaying any symptoms of sleep apnea. I am just so overwhelmed with this Dx. Plus, she is just an infant so she can’t tell me if she is on any pain. So far no problem swallowing…but now every time she chokes a little on formula I panic. I hardly slept last night because I was worried she was going to stop breathing in her sleep. I just don’t know where to turn to get any comfort and information to help me digest the Dx and be less paranoid. Our next appointment with the neurologist is in 6 months. We see Dr. Campbell at Nemours DuPont Hospital. I’ve never been so glad to live near a children’s hospital.
From what I have been reading, it sounds like headaches and low muscle tone are very common side affects. Will my daughter’s ability to walk be impaired? She doesn’t show any signs of being developmentally delayed as far as physical milestones.
I’ve also read that speech may be delayed. She doesn’t say any words (remember she is 11 months) but she does babble and coo a lot.
Thanks for reading through this long post. I appreciate anyone who can help me.
MissKriss, I’m sorry your little girl got this diagnosis. It sounds like you are doing all the right things though. What sounds positive to me is that you are not attributing any of her behavior or signs to the Chiari, in other words she may not be symptomatic. There are a lot of cases I read about that the parent is concerned about a behavior or delay, and after getting the diagnosis they say, " oh, this xyz makes sence now- it’s because of the Chiari." You are getting the sleep test, that’s very important. Just keep reading and researching so that if something pops up you recognize it.
Sorry to hear about the dx I can understand how worried you probably are.She may not be haveing symptoms now,all you can do is try to get as much information as you can.Hope the sleep study will tell you something about how much she is effected,at least in the night.It could be that the chiari is not an issue yet,that’s my hope for you.
First, I'm sorry to hear about your daughter's diagnosis also. My daughter was diagnosed shortly after her 3rd birthday.
Second, I think it's excellent you are getting a sleep study done, and I'm happy to hear that the neurosurgeon ordered it! Many won't. I had to fight to have one done. I use an Anglecare sleep mat monitor that I ordered on Amazon, but you can get them at baby r us also. Even though every doctor told me not to be so paranoid, I still was...and no amount of medical degrees on their part could convince me not to be! They are on the pricey side, but it helps ME sleep. It sounds an alarm if there is no movement (breathing) in the crib for 20 seconds.
Also, try and take a breath. It sounds like you are doing a lot of really good research, which is great (and how I often cope also). We have seen 5 pediatric neurosurgeons, and all have said that symptoms will be our guide for severity and symptoms. If she is pretty asymptomatic, then she likely is ok. That isn't true 100% of the time, but it is most of the time. Things to watch for in babies are head banging, grabbing their head, torticollis (tilting of head, refusing to look in a certain direction), inconsolable crying. Some other things besides the choking you mentioned is a hoarse voice, and snoring, snoring sounds while awake (called stridor).
If she is developmentally on track, assume she will stay that way. When she starts to veer off track and possibly become behind her peers, then I would start to worry about things like speech, muscle tone etc. My daughter was always a floppy baby....I mentioned this to her pediatrician many times before her diagnosis, starting from when she was a newborn. It was very different than my other kids. She now is believed to have EDS (Ehlers-Danlos Syndrome). She had low (ish) tone, hypermobile joints....she rolls her feet in etc. She still was on target for ALL of her milestones (and even ahead in many!). I guess I'm just saying, don't worry too much about those things until she actually shows some delays. It's great that you have them on your radar though, and will keep a keen eye out for them!
Your are doing the right thing and educating yourself on the condition. A surprise chiari diagnosis is a big shocker. Especially after you start googling...cause of course that is the first thing we do. :).
Remember the "diagnosis" doesn't necessarily mean that your daughter will have symptoms. She may live her whole life and never be bothered. With the advancement in imaging technology, the diagnosis is often accidently made when imaging for other concerns such as your daughters dermatoid cyst. Research is being done, but how many people with with a chiari type malformation live their entire life and have no problems. I would consider it a blessing that your are aware of the condition at a early age, and can be aware and informed IF there are symptoms that arise as she grows. Instead of playing the detective game backward like most of us. Finding the diagnosis after trying to rule out multiple other differential diagnosises. My daughter is 5 and we just received the diagnosis. I have to agree with the other post that looking back there are symptoms that align with the chiari diagnosis for our daughter. She suffered from severe constipation (up until about age 4). She most likely had a little problem swallowing..Maybe? She was a terrible about spitting up or choking if she drank a bottle too fast. There were time when I thought her breathing was a little funny at night but it never gave her any problems. Other wise she is a very intelligent girl, ahead in development most things including walking and balance. Had I know the diagnosis early I don't think it would have changed anything about her early years. We would have just treated the symptoms, for example miralax for the constipation. Feed her a little slower. And enjoyed our happy little girl. The difference of knowing the diagnosis earlier would have just saved us about 9 mos of wondering and trying to figure out her headaches which only recently began and are managable now that we know what activties cause them.
The idea of your baby being in pain and not knowing it, I think is scarey. As parant we never want to see our babies hurting. I think moms are pretty intune to their children. You know when your daughter isn't feeling well. They don't have to tell you verbablly. We always are guessing....teeth, tummy, ear aches. Knowing the chiari diagnosis only adds on more piece of the puzzle. Consider it just that. Information to help you make better decisions on the care of your daughter.
So I guess, in summary, don't let the diagnosis be a black cloud over your and your family's life. You get to deal with the situation proactively. Getting the tests such as the sleep study before any problems arise and being aware of what symptoms to look out for. (but not obsess about them and look for the smallest sign.....easier said that done as a mom....Mandys suggestion of a breathing monitor is great...even if it only helped me sleep better! ) Stay positive and live life to the fullest.
I'm glad you found this site. I think you'll find it helpful
Thanks everyone! I’ve been able to relax a bit since the Dx. Our sleep study is set for Feb 3rd. We are so fortunate to live near Nemours A.I. DuPont Children’s Hospital in Delaware. I appreciate all the advice given in the previous posts. I guess we will just sit tight and enjoy our symptom free for now baby
