Helen smith - Mom of 11 year old Chiarian

Hi Tj1 the peadtrician does think any of his problems r related to the chiari and the neaurilogist thinks his headache r not related but from my research he has all the symptoms

Its a tough one. At 11, hes a bit young to start having problems from the CM if the symptoms are fairly new unless he is in a growth spurt. I can sure see why they want to eliminate EVERY possibility first. HOW are you doing?

Hi Tj1 I’m not coping well at all thanks for asking .Theres a lot of stuff going on with cam at present they think he may be autistic as well plus they r sayin his headaches r migraine

That all sounds eerily familiar. Refractory Chronic Migraine which is often the real cause of "Chiari" symptoms is very strongly associated with Spectrum disorder. I'll give you a bit of unsolicited advice if you don't mind. You want to have an independent neuro-psych testing. DO NOT let the school district label the kid under any circumstances (I've been down that road) The school will likely do an assessment and that's fine for their planning purposes. I don't know how it works in the UK, but in the US and Canada most medical centers will have a neuro psychologist led autism team that will give you more medical information than a dozen MRI's There are some amazing medications (usually anti siezure) that work with kiddos your sons age almost like magic. Not only with some spectrum behaviors but with the headaches as well (Lamotrigine is one of them) It takes some work to get the blood levels right which ever way they go but it pays off. One cool thing is that the most recent research coming out of the UK is finding a huge autoimmune-spectrum-headache connection. Granted its Kings College, but the work is solid.

Its gonna be fine, you and your boy are worth the time it takes to get it right. But no mom can handle seeing their babe suffer. Its even worse when the kiddo is being as we say where I live being a little poop from time to time. So keep the schedule and be tough............. I testify to that one. The wife is picking ours up as I type Oh joy!!!!!

Thanks for all your help and advice I will deffo look into it

Hi Tj1 I’m sorry to keep bothering u I’m very distressed and don’t knw wat to do cam has really bad mood swings all the time is very regimental and souls himself frequently we have a neurosurgeon in place a austic consultant and a peadritician doesn’t like change if any description I knw a lot of this is probably austistic and doesn’t apply to this site

I'm not so sure it doesn't apply to this site....

We adopted 8 kids 5 of em were boys and we fostered 2 or 3 dozen more over the last 40 years. All of them were special needs be it health issues, behavior issues etc. at some level. There is very little we haven't seen We are currently raising a 15 year old grandaughter who was brain injured in a car accident her remaining injury a herniation that could be classed as chiari. She is lower functioning and classed as autistic not to mention she also has severe JIA (arthritis).So heres what I know based on our experience.

Eleven year old boys are weird to begin with. They develop habits that are cast in stone whether they are autistic or not. Half of them can't go through a door without jumping up to slap the wall above the doorway. Its as if they will have 7 years of bad luck if they miss. We forget that growing up and changing from toddler to pre schooler to school kid to pre-teen and teen is darned hard for any kid. We have a society that treats kids like little adults and boys and girls the same. Its not fair to the kids and if that kiddo has some needs health or otherwise it really isn't fair. So much for the editorial

We eliminated a lot of meds for Tana. especially anything to do with ADHD I'm not opposed to meds, but the bottom line is Tana has a broken brain. She takes as I mentioned earlier Lamotrigine which helps a bunch with her headaches but also evens out those mood swings. She can't take much for pain because the JIA has also caused pretty severe inflammation of her bowels.. She takes two injectable arthritis meds as well. She is responsible for all her meds including giving he own shots twice week. (she functions at about a 6 year old level) I make sure it happens of course

We learned over time she was most likely to have headaches after school started and after she got home from school. We made it clear to the school she needed to have time to switch gears to "school mode" when she got there otherwise after all the morning activity all hell was likely to break loose. The second time was after getting home from school. if it wasn't a headache it was a melt down. It took us awhile to figure out she was trying so hard to be "good" at school she didn't have much left for us..... In any event working with her patterns and schedule we have been able to eliminate many of her meltdowns and a fair number of her headaches.

The most difficult thing for us though has been when she is having a flair, headache etc is telling her to grab and ice pack and move through it. All you WANT to do is hold he on your lap and rock her - not that she or your son is likely to let that happen anyway. All of its real but they can't manipulate their world or responsibilities. Its a tough world. they are going to have to work no matter how they feel when they grow up.

I'm not sure how it works in the UK but one valuable piece of advice for US parents is either the schools work with you develop a 504 plan or IEP (Individual Educational Plan) to get your child through the day adapt to needs for quiet time, decompression time etc OR they own the problem. By that I mean they will try to push things off on you and the calls start to come. You need to learn to say "What time is school out?" when they answer 3:30 or what ever it is, you have to say. "great, I'll see you then" At that point things will start to happen IF you mean it and stick to your guns........

The other thing is to remember these kids are 100% logical and totally concrete. If you let yourself smilel or even laugh at some of the things that come out of their mouths. Life gets easier. Also they like rules, in fact they LOVE rules especially making them. Don't even once let a rule happen you don't want to. five years ago I let Tana stay up 10 minutes after bed time. The new rule is she Always gets to stay up 10 minutes after bed time if she wants............ With a little creativity you can use this against them..........