My five year old beautiful little boy has been having headaches since October. We at first thought they where anxiety related but one day he was home from school for a holiday in Novemeber. He was playing with his older sister and I just happen to be watching them. I saw him all of a sudden wince and he came running to me and buried his head in my chest. I asked him what was wrong and he said he had a headache. He just happen to have his five yr well check that day so I mentioned it to his pediatrician who then wanted me to keep a log of his headaches. In an 18 day period he had 8 headaches. His pediatrician right away ordered an MRI and set him up to see a neurologist. The neurologist said it was probably migrains and put him on a medication called Cyprohept. He wanted him to take it for two weeks and then see how he did from there. During the two weeks he had at least two breakthrough headaches and when he was off of the Meds he had a headache for three days. I called his neurologist who said to put him back on the Meds and he was anxious to see his MRI and blood work. He had the MRI on the 28th and within an H&R we got a call from his pediatrician saying they found cerebellar tonsillar ectopia. It is a 7mm defect. I was freaking out and had no idea what this was. We have a follow up with the neurologist on the 18 and he wants us to see a neuro surgeon as well to discuss our options. I am so nervous and have no idea what to expect. The poor kid already goes through so much with apraxia of speech he also sees an OT and PT for motor issues and a psychologist for anxiety.any advice anyone has is welcome.
Bugs mama, look at that little handsom prince…you must be a proud mom! He is precious! It is not uncommon for children with chiari to have physical or learning delays. It can affect behavior (adults too!)as well. You are in-tune with your kiddo and on top of it, you are doing a great job. you got him to the right people to get diagnosed and now you have a direction for getting him help and monitoring.
He needs a sleep study, apnea -especially in children- is dangerous. The sleep study would be my first priority. He needs to be checked for a syrinx (cyst in spinal cord), tethered cord, and for any Hypermobility syndrome. Hypermobility syndromes can cause an additional problems to chiari- and many Chiarians have this- CRANIO cervical instability - it needs to be screened for in every chiari patient. Ehlers Danlos syndrome is a popular type of hypermobility we have, but there are other types too. Cranio cervical instability requires treatment.
Finding a chiari specialized neurosurgeon is important- not all NSs are up to date with their chiari education or the conditions that can show up with it. Not saying surgety is immanent, but he needs to be seen by a true specialist to know the full situation. Seeing more than one NS is common and advised. Researching your sons condition is important so that you know what to look for and also so you know when you are in the presence of a true specialist who is knowledgable enough to help.
You must be very stressed out right now, and I’m so sorry you and your son are going through this. Just please know there are many parents who are in the same boat now, and also who have gone through the journey. This is a curve ball, yes, but you are not alone.
Jenn 
I would echo what Jenn said.
Look at the MDs recommended through this site. There is a separate board certification for pediatric neurosurgeons, which you can access at www.abpns.org The neurosurgeon you see would ideally be on both lists.
Fortunately, your son is responding to medical management. Usually, prior to consideration of surgery, you want to make sure you have achieved maximal medical management.
You are already collecting data. Before you see the neurosurgeon, dig a little deeper.
Does the neurosurgeon you are seeing recommend any additional imaging(entire spine MRI to rule out syrinx or tethered cord, cine MRI to look at CSF flow around the Chiari)? If so, get it done prior to your apointment(rather than needing to make a follow up appt with all your data)
Do they recommend any additional studies(sleep study)? I tend to like further imaging and sleep studies but would defer to whomever you see.
Do the therapists your son is seeing feel he is still making strides in therapy or would they expect better improvement? (In other words, could the Chiari be causing brain stem compression, leading to OT/PT/ST issues you mention). Most therapists will be positive so let them know your concern, his new diagnosis, and whether they feel brain stem dysfunction may be limiting his developmental potential.
Remember, you know more now but this has been there for some time(he was probably born with it).
Go down several pathways at the same time. If you know the neurologist will be sending you to a neurosurgeon, get their recommendation now and hopefully a referral, so you can start down that pathway a few weeks quicker. Some neurosurgeons are booking months out.
And finally, obviously, use this site as a resource. There are a lot of knowledgeable people here.
He is so lucky to have such a caring and engaged mother. As a family therapist, I wish every child was so blessed.
This has to be so incredibly scary and upsetting right now. I am so glad you are part of this group. I look forward to hearing about his progress.
Peace, Brian
Thank you all for your kind words and suggestions. I am told that the neurosurgeon we are being referred to is very familiar with Chiari so that gives me hope. The waiting game really sucks though.
Bug’s speech is hereditary from his fathers side his father and both of his uncles have all had ST and the youngest has apraxia like my son has.
I talked toPT the other day and she told me he is at the low end of normal for his balance. According to his progress reports I just got on Friday he is pretty inconsistent with his balance, stamina and coordination. He can balance 5 seconds one time and 23 another, he can run for 1 min 30 seconds one time and 4 min 26 seconds another. Some days he doesn’t fall at all other days he will fall over his own feet multiple times in a row. He experiences pain in his legs a lot. Has a hard time sitting “criss cross” on the carpet at school and will loose feeling in his legs if he doesn’t have enough room to move them especially in the car.he had five stitches in his chin when he was three because he fell over his own feet and didn’t have the reflex to catch himself.
As an infant he had apnea. Would stop breathing and turn blue especially if he fell asleep while nursing. I honestly don’t know if he still has it or not. I know he sweats a lot when he sleeps.
He will frequently complain of random belly aches at dinner but never had any reflux issues as a baby. Hardly ever spit up.
He has a stills murmur in his heart but drs said it is nothing to worry about.
The poor kid has been through a lot and still every day he has a smile on his face and is always willing to be Mommy’s and Daddy’s helper.
Although a link has not been identified, I believe chiari is genetic, hypermobility syndromes are also genetic. Just want to reiterate the need for a current sleep sleep study and investigation for a tethered cord (lumbar mri)especially with the symptoms you mentioned. Your little bug sounds like a special kid
Hang in there mom, you are doing a great job.
Jenn
Ps hypermobility syndromes can easily affect the GI system (reflux) that’s an important one to rule out too- you need to know if he has any cranio cervical instability. Research Ehlers Danlos syndrome and check the Brighton Criteria and Beighton Criteria. Other family members may be affected by EDS as well
Jenn