Chiari in infants

[williswolf]

I wrote earlier not knowing if our son has Chairi or not. We took him to the ER last night and after looking at the MRI they said that his herniation which is 5mm couldn't be causing the symptoms of choking and gagging that he has been experiencing the last few days. it doesn't happen a lot but when it does it is noticeable. We are also aware that he has some underdevelopment going on as well. He is only 7 months old. They claimed that a viral infection was causing his crankiness. He has been evaluated by PT and OT and both have said that he is underdeveloped in various areas especially motor skills.
I left the ER feeling like I was overreacting but as a parent I know I'm not. They sid they would consider the Chairi severe if it was around 8mm. We have two Ped NSG appts. in two weeks. I hope they can figure out what is really going on. The reason I keep doing more research on this is that I keep hearing that Chairi is easily misdiagnosed and easily misunderstood. Any advice would be great.

Thanks,
Will

[*Stormy*]

I wish I could help you with the name of a good dr...but I live in Canada so I don't think it will be much help.

I just wanted to encourage you to push on and don't let those dr's dissuade you from finding out what is going on with your son.

The herniation size is not the biggest indicator!! Plus from what I was told, 5mm meets the criteria anyway! For me, my NS didn't even tell me the herniation size..he was much more concerned with the overcrowding of my cerebellum near the foramen magnum. I am glad to hear that you have 2 appts with some NL but if they don't take it seriously and they don't have a good grasp on the effects of chiari...keep on looking!!

I pray you get some answers soon for your little one!

Carolyn

[williswolf]

Thanks so much for the encouragement. It means so much to us. I know there is a list of possible doctors, but does anyone know of a good PED Chiari specialist? We live in MI and will travel if we have to. Another thing has anyone had issues with insurance not wanting to cover different opinions.

Will

[selmaS]

Hi...u must keep pushing...my herniation was bilateral...4 mm on one side and 6 mm on the other....and I had the gaging as well.....it is not the size of the herniation but the overcrowding which was causing my issues.

Make sure the Pediatric NS is a true chiari specialist...too many NL and NS do not have the current info on chiari and how it can affect those with it....the info on the web is old and very outdated....

May I ask, has ur DS been check for reflux?...a hiatal hernia?.....

Trust ur mommy radar....and push for answers until u r comfortable with what u r being told.

Please keep us posted.

"selma"

[denverluv]

UGH! I will also say trust your instinct. When my daughter was a week old she started spitting up like crazy- projectile- I called the Dr. and he told me- "if there is anything I have ever learned as a doctor is to go with the mothers instinct. I never go against that because that's what your instinct is for" We took her to the ER, we sat for 8 hours, they almost sent us home, and right as we were leaving she did it in front of the nurse, and the nurse was like- you are right- that is not ok, A week later she had surgery for severe reflux, come to find out over 50% of her formula was being inhaled into her lungs. She went blue on me at one point and I told the doctor he must do the surgery. Had I not pushed for her, she probably would have died in her sleep at some point.

On top of the Chiari, your son might also have a reflux issue going on- (the chocking, gagging) - my daughter had an issue with her sucking reflex, she would suck too hard and fast causing her to choke.

Don't let them tell you "it's nothing- or wait and see" That is BS With a baby you don;t wait and see when it comes to issues like this. We are not talking about ADD or something like that. Don't worry about making the doctors not like you, or worry about what they think of you. Who cares? I am not saying you are, but doctors have a way of making you feel like since they are the doctor and you are the new parent they know more, and that is not true. We have a connection with our children for a reason. Every time my children had an ear infection as babies I would tell the doctor and they would tell me there's no way you can tell that. I would say- look- and it would always turn out I was right. We are with our children every day- they seem them about an hour. No comparison. Every child is not text-book, and babies don't fuss constantly for no reason. Honestly, in my opinion, babies are so wrapped up in this new world, all the new things going in for them, that a little cold (virus) hardly slows them down. it could be your baby is behind because she doesn't feel well all the time, and THAT is holding her back. Maybe not, but in either case I would push for them to figure it out. Chalking it all down to a virus is a lazy, sorry excuse.

My point is, YOU DO know your child more than anyone. If you feel like something is not right, it isn't. I can't stand for doctors to just chalk everything up to "new parent syndrome"- were a new parent worries needlessly about everything. Another thing is saying everyhting is a virus is just a blanket for "we don't know what's wrong but a virus is convenient" Because with a virus you can't take any anti-bioitc. Take your baby back every day if  you have to. Find a pediatric Chiari specialist, and don't let anyone make you think you don't know your baby. That is YOUR baby and NO ONE knows your baby the way  you do. Always trust in that and never forget it, and you will be ok. You may not know how to fix things, but you certainly can tell when things are not right. I think you already know this, but those doctors have made you question yourself. Quit that thinking right now! :) Good luck.

[rod44]

Hi Will, I am so sorry that your son is dealing with this.

First I will day trust your instincts, you know your son better than anyone so dont be fobbed off.
From being on here and from my own experience with CM I would say that it is not all down to the size of the herniation, there are issues around CSF and obstruction of same, this can cause all kinds of problems. There are related issues that need to be ruled out and for this you need a CM doctor, a doctor who deals with CM on a regular bases and who is up to date on the latest thinking on CM treatment. CM must be looked at when they access your sons under development......


Ray