Arnold Chiari Malformation Support Group

We are going for my 2 year old son, Eli's, first appointment with the Neurosurgeon since being diagnosed with Arnold Chiari Malformation in october. I don't know what to expect. I am bringing my list of questions. I just want something to help my baby. Eli has always cried, sometimes for hours and I had no way to fix it. He is in developmental therapy for motor delay. His therapist is worried that she sees him trip alot and see tremors in his hands. She says that since she has started seeing him that she has noticed sensory problems. She has also tried to get him evaluated for PT but can't just for tripping alot. I'm just really nervous. I want something productive to happen. Since we are seeing a neurosurgeon and he has these symptoms I mention will they want to cut into my baby? I just need some support. My husband is the type that nothing on the outside seems to bother. Thanks for any advise or information.

Post edited by: EliMommy, at: 12/12/2009 06:55 AM

Hi, I am not sure if you have already gone to your appt. or not. However, I just wanted to let you know that my daughter was 5 yrs old when she had decompression brain surgery done. Her symptoms were sensory, fine and gross motor skills issues, bowel and bladder accidents, tripping, afraid of loud noises (even a lawn mower), afraid of heights (not even a foot off the ground), sleep apnea, gagging, memory (retention and processing), tremors, muscle weakness and difficulty swallowing. All of these were very subtle and therefore she was at first diagnosed with mild cerebral palsy. I pushed for an MRI of the brain. It came back positive for Chiari Malformation Type I. After her surgery, she was a completely different child. Although she is slower than others, she can run, play sports, swing on a swing set, etc. I am not sure where you live but since he is preschool age, they can normally help you to get him services for PT, OT and/or speech. For us, it was the best thing we could do for her. It was very scary and although my husband seemed tough on the outside, he wanted to walk out of the hospital the day of her surgery because she looked up at him and asked to go home. I hope this helps you. I will keep you and your family in our prayers and wish you and your family well.

Thank you for replying to my message. I stopped checkin it to no one answering. We went to our appointment the week of Christmas. Our Neurosugeon states that my son is still a little too young for the decompression surgery. They would like him to be in the 3-5 year old range. Not really happy with our appointment. It's not for the fact of no surgery, but because there was no discussion on how to help my son for right now. That was the answers I was looking for. Eli symptoms are: severe headaches, sensory, tripping, also afraid of loud noises and heights, one sided muscle weakness, tremors, snores (but not tested for sleep apnea, however runs strong in the family), gagging, developmental delays, and here recently had a seizure. Some are stronger than others, but all are effecting our day to day life. We brought a video of the headache symptoms and a letter from his Developmental Therapist on all the things she has witnessed. The doctor wouldn't even take them out of my hand to look at them. Our Ped Dr. was not happy with it. She did an appointment of her own to discuss pain management ideas and to set us up with a Ped Neurologist to look more into the tremors and seizures. We go in Feb. 2010. I'm more hopeful that maybe some of my questions will get answered. We have two toddlers so it is one of our questions. Should we keep them in the Preschool we signed them up at birth basically or seek more special attention for Eli. Thanks for all your help.

Hi and Welcome to the group,

It must be terrible to worry about a toddler with Chiari, I can't even imagine. If it were me I would definitely visit another Ns, even more maybe. HOw completely irritating that the NS wouldn't even view the video and letter. That sort of thing should be against the law.

Has he had a CINE MRI? That's the one that shows the CSF flow- if you can find out if he has generally low CSF pressure or high- there are some noninvasive things, like some trial meds they might try, or even just the mildest of mild, Cranial Sacral Therapy.

My son has a learning disorder involving the brainstem- and his Occupational Therapist is also a Cranial Sacral Therapist- she is able to diagnose things that are going on from a mere touch, seriously- and is able to unclog blockages, restore CSF flow which can help innumerable things. (just some ideas)

There may be things like sleep position, ear plugs, even homeopathic brain supplements that might help during this time when he is so young.

I'm glad someone finally noticed and replied to your post and hope you'll keep us posted as to how things progress for your little Eli. You might want to visit some of the really big groups for Chiari support and information- see the links on treatments- ASAP, WACMA and CCI are the three main groups with very large memberships, you should be able to glean some ideas there. Also, maybe your husband would be willing to watch some videos to help him better understand what Eli is dealing with. The videos at TCI are very informative.

Take a big hug (if that's ok!) I'll keep your little one in my prayers.

prism

Sorry it took me so long to post again. We have been super busy. We have seen a plain Neurologist and I LOVE her. She spent almost a hour with us looking Eli up and down. She gave us a medication to try to prevent the headaches. It is going ok with that, however last week we had THREE!! She looked in his eyes and noticed extra pigmentation and scar tissue in the back of his eyes. We go at the end of the month to a Pediatric Opthamologist to check all that out. Plus, she scheduled an EEG. In the therapy world he has qualified for other therapy types since being given a diagonsis of Sensory Integration Dysfunction. Some days are better than others. We are just taking it one step at a time. Thank you for the ideas. We are going in June for the MRI that looks for the flow of things. It is just a waiting game now. Thanks again.

Thanks so much for the update!! I am so glad to hear that you found a good doctor to work with- it makes all the difference in the world, doesn't it! Do you have a date for the EEG? Have you ever had one before or know what to expect?

Sending you some warm hugs,

prism

It is for July 1 @ 8:00. It was kinda scary she tried to get us in that day. We have never had one before. I'm not sure how I'm going to get him to stay up all night.

I will keep you and Eli in my prayers for that date especially. If I were you- I'd ask the Neuro or the nurses at the facility where it's going to be done for ideas. They've got to have had a lot of experience with this. Besides- does he really have to be awake the whole time? Is it a sleep-deprived one? That's the one kind I never had. I had no problem having seizures alL the time. :O !!! Hang in there, little mama! Hopefully, this will open a door for Eli to get some help*

hugs,

prism