newly diagnosed baby

[Melcj]

Our 18 month old son just had an MRI of the brain last Thurs and by Friday we got called by his pediatric neurologist who told us he has "mild chiari 1 malformation" and not to worry but to make an appt with a neurosurgeon and set up a sleep study to r/o central sleep apnea and not to do too much research, most people have it, don't know it, and live with it with no issues.  Then of course I hit the internet and it doesn't seem so benign anymore. We also find out this week if he has Marfan Syndrome (my husband is recently diagnosed with it so our sons are being tested).  My baby boy's other history is hypotonia, febrile siezures, history of trouble swallowing though that's improved dramatically with speech therapy, eye rolling which has been negative on eeg, history if apnea of infancy (apnea monitor for 3 months at birth), he is behind on balance some but has had fluid in the ears a lot and also recently "failed or didn't do as well as they'd hoped" his hearing test.  I checked with his p ediatrician who also said it was very common, 1 in 1000 as opposed to the Marfan so she told me to focus on that instead.  What do we do? Who do we trust? Does he need an MRI done in a standinig position?? How do I know if he is not feeling well or having a headache? Is there such a thing as a pediatric chiari specialist?? or just a pediatric neurosurgeon? Should my 4 year old get tested or was the ct scan he had at 19 months (hit his head and vomited) enough? Thanks for everything in advance.  So worried, Mel

[blondeballerina07]

Hi and Welcome! This is a greta place to get good information and support when needed. There are pediatric Chiari specialists. It depends on where you live, I know of one in Arizona (Phoenix Children's Hospital, and Barrow's Neurology Clinic) and have heard of others but not sure where they are. The doctor who told you not to do research was definitely off his rocker. The best thing you can do is to investigate and learn all you can. Become knowledgeable, this is your child and you are their only advocate! I feel that with a good understanding you will be able to help provide the doctor's a clearer picture of if Chiari is the culprit or if they need to keep looking. My prayers are with you and your family, good luck in your search and don't be afraid to ask questions!

[selmaS]

HI and welcome to the Chiari forum.

As u can see we have  a lot of very caring members wiling to share info and experience......yes there r pediatric chiari specialists and like Wolf said, is the kind of dr u want.

Please continue to post ur questions and concerns and we will try our best to get u the answers.

And like Wolf also mentioned, u may need to travel to get to the dr that is right for u and ur DS.

We r happy to include u in our little family here, so sorry for the reason u had to seek us out.

"selma"

[*Stormy*]

Hello and Welcome,

Everyone has done a really good job of covering your questions and I'm glad to see that there is another mother of a child with Chiari that can give you some advice. This forum is such a good way to connect with other ppl that can share their experiences and end up helping each other:)

I am so sorry you are dealing with this in a child, especially one so young..I have 3 boys and even thinking about the possibility of them having what I do makes me scared so I can't imagine how you feel. Many moms here that have been through it will tell you that you have to be a big advocate for your child, don't worry about what the dr's think of you...you have to get the answers and the best treatment for your child!!

I agree I would get your child's scans to a pediatric Chiari specialist if you can, most drs just don't have enough knowledge about this condition!! All of the things your mentioned that your child has, I have, with the exception of the seizures (which I have heard of other children getting) so all of if could be from the Chiari!! So do take it seriously, do your research and ignore those that think you are going overboard.

Good luck, I hope you get some answers soon!
Carolyn

[ChiariWolf]

BTW- anyone telling you not to do too much research on this is off their rocker!!! Sorry, that's the nicest way I know how to put it.

With Chiari we are still virtually in the dark ages. The only relief by means of real knowledge about Chiari my wife and I received was via the internet and this forum.
My NS, mentioned above, actually considers someone who does do the research to better understand Chiari as an intelligent person. In fact my dx of Chiari only came when I did do the research and then insisted on seeing a Chiari NS. At the time I had asked my wife to quit counting as she was up to 43+ different symptoms, some of which I'd had since birth. Doctors that we were seeing, which frankly are good doctors, just didn't have a clue as to the effects of Chiari. Many Drs in todays world still carry the attitude of "Oh yes, btw, you have an incidental finding of Chiari Malformation. It's nothing to worry about though as most likely it was there at birth." It is true, it was there at birth, however when it becomes symptomatic as your son evidently is, then it is time to get a qualified NS to evaluate and see where you are at.

BTW- Choking is one symptom that I've had from my earliest memories. It began to be a real problem for me around the age of 7-8. And yes, they put me in speech classes for that as well. They where useless as they didn't address the real problem. No worries here now Mom, just follow the course with a qualified Chiari NS.

Sorry for babbling so much at you... it's just that the young really touch my heart. We have two sons and we do so miss the days when they where young.

Wolf

[ChiariWolf]

Nice to meet you first of all and welcome to the group here.

I can not even imagine how it would feel as a parent to have such a young one dx with Chiari. :-( I truly feel your pain there, please know you can voice your frustrations, questions or whatever here.

One question that all of these things you speak of leave in my mind. Are you aware that it takes a special NS to deal with Chiari. This is not a case of any good NS can handle it. Rather it is an absolute must for you to find a good NS who specializes in the treatment of Chiari. He/She will understand what tests are needed to determine the extent of any blockage that may be present. The blockage or lack thereof is the real culprit that causes Chiari to begin to cause symptoms. In all honesty after reading your post, my 'very first' recourse and major priority would be to find that NS who specializes in the treatment of Chiari. No other DR is going to be able to help you with this. And this could be causing some of the frustration that you are feeling now.

For example in my case, early in life I displayed many symptoms. However, my parents where eventually told by doctors that I was making up the symptoms. Thus I learned to hide how I felt to avoid punishment. Some doctors threw names out there for this problem and that one which turned out to be just guesses because they didn't understand what was going on. This is why you 'need'  that NS who 'knows' Chiari, they can tell you what is or is not Chiari related. No one else will be able to do that.

Finding that Dr. can be a challenge in itself. But that is where this list comes in. We do have a page with a listing of Dr's who know what they are doing. Or if you let us know approximately where you are located perhaps somewhere here can help you. For instance I'm in Ohio, but I'd travel much farther than I do to see Dr Xiao Di in the Cleveland Clinic. He and his staff have answered questions that I've had my entire life. He is a very top notch surgeon and a great guy to boot.

Feel free to PM me anytime if you feel the need,
Wolf

[Wvchiari]

Sorry. I didn't finish my one sentence lol I was worried about trying to answer everything.:). At one time Chiari was considered rare but with the medical advancements i.e.MRI , it is being found more often.  Which is a blessing because some patient have had to deal with years of symptoms before they are diagnosed. The scariest part of Chiari is srynix formation. A srynix is a collection of csf that forms inside the spinal cord. That is why you want the MRI of spine and the cine flow study.  
Hope I have helped!

[Wvchiari]

Mel,
Hi and welcome!  I can understand your panic. My 7 year old son was diagnosed last year and I think I had every emotion that a parent could have all at one time. I will try to answer everything I can. Ok, here I go :).
Chiari was at one time considered rare but with the advancement of MRI. Yes there are people that have Chiari and have no problems ever develop.  But you want to educate yourself as much as possible so you can advocate for your child. As far as tests..you want to make sure your child is tested for sleep apnea ( due to the crowding in the brain) , a cine study (it is a MRI like study that checks the csf flow around the brain), and a MRI of the spine( some doctors debate wheither a full MRI of the spine is necessary but from what I have seen most Chiari specialists insist on them). There are pediatric neurosurgeons that have more Chiari experience so I would suggest doing your research to find one.

No one can tell you not to worry, it's your child :). Your a mother and I have full faith that your going to know if something is not right i.e. Headache etc.  You have found a wonderful place to read up on Chiari patients.

As far as your other child I would suggest talking to your kids doctors. Usually they don't recommend getting a sibling tested unless they are having problems(due to the fact that a child usually has to be sedated for the MRI) but your the mom. If you feel it needs to be done insist on it.  My son's Chiari was found on a ct but not all Chiari herniations are as extensive as his.

The hardest part I have cone across yet is learning how to balance avoiding possible activities that could cause problems but still letting my son be a kid. I can't put him in a bubble but I can help him avoid some situations.

If you need anything or if you have other questions just let me know. :)

Sam