Chiari symptoms

Over the past year, I have had the pleasure of meeting several people who have children with Chiari Malformation.

  

I get asked a lot what were my kid's symptoms.  How did we find out? Especially from people who know nothing about chiari and are just curious.  I know that I have posted symptoms before, but I wanted to re-do/update them.

For my kids here are a list of early onset symptoms.  All of my kids have chiari.

2 of the children were "fussy babies" - one pediatrician used the words "high needs infant".  That is my 5yr old and my 13yr old.  The 13yr old as a baby, we now know that her Chiari has caused her permanent nerve damage.  She no longer feels ill.  She has hypotonia and has a personality that seems to constantly complain.  She cried all the time as a baby and as a young child got into trouble a lot as a younger child in school.  She has esotropia (accomodative) of the eyes and must wear orthodics, due to the way her legs turn. She complained all the time as a younger child about walking, running, doing any type of activity that her legs were "tired" or "hurting" that she now works on a weight issue. Although, this is the first year she has actually been seemingly more active.  I am not sure if the new healthier eating lifestyle we try to do (again not perfect there) is a factor? Also, she is taking vitamins which seem to help as well. She also has hyperflexiblity and an EDS diagnoses from Dr. Rekate in New York.  I was skeptical of this diagnoses until after the third time in her life trying to get her earrings, realizing it has been almost a year and the earrings are still not healing correctly! She can bend her arms and fingers different directions.  She also does not know when she is sick.

2 of the children had severe stomach issues.  Severe pain starting at age 3 for one of them and the other had projectile reflux as a baby.

1 child has Asperger's Syndrome and also had seizures that were outgrown by age 5

2 children have body temperature regulation issues.  1 gets too hot the other too cold.

2 children had headache complaints daily.  The one with the syringomyelia would wake up with headaches at night and every morning.  The other child had headaches that were "typical chiari" where she would bend over and have a headrush headache that would go away in minutes.  Both complain of headaches and point to their foreheads.  The syringo child has daily headaches still, even after decompression.

Only 1 out of all of them complained about neck pain at age 5 A LOT.  That was the one with typical chiari headaches.  I did recently get a call from the school where my just turned 5yr old complained of neck pain after doing a lot of coloring with sidewalk chalk.  I personally believe the position of the neck affects their neck pain.

Nosebleeds in one child that I'm not sure is related but she gets them off and on for periods of time, often followed by stomach pain and headaches withing 48 hrs of onset.

So, for us our list is:

1. Stomach pains
2. Headaches
3. Neck pain
4. Muscle weakness (hypotonia)
5. Body Temperature Regulation
6. Autism/Asperger's Disorder
7. Seizures (early age only)
8. Syringomyelia
9. Periodic complaints of "not feeling well" that come and go
10. Nosebleeds
11.  Sensory issues and problems with behavior (1 child)
12.  Sudden onset of strange symptoms (feeling hot in certain areas on skin, sudden back pain for no reason after movement, having cold skin but hot flashes)  also, saying things like "I know I have an arm but I can't feel it"or "my legs don't want to work"or "my arms are tired"
13.  Throat complaints
14.  To be Continued!...............

Those are all the current issues we have.  Now, how do we handle them?  The youngest children have the most complaints.  The youngest is the one with the constant pain :(  This is what we do:

1. distractions when possible!
2.  extra rest
3.  no activities that will bounce the head around or toys/things that can cause "whiplash".
4.  heating pads and ice packs
5.  fans - personal fans and keeping the house temp cooler than norm (68 in winter and summer)
6.  making sure the school nurses are compliant with the 504 plans (so far we love our nurses and teachers and admin)
7.  focusing on what we CAN not what we Can't do.
8.  not going to the doctor as much anymore...(at this point, we know when it is urgent or not) and the years leading up to the diagnosis finally, we were at the doctor probably 3-4 times a week!
9.  pain mangement - currently, we eat almost no gluten foods, drink extra water, take vitamins, use ibuprofen as needed, benadryl with it for severe headaches (that was our neurologist advice and we have only done that like 3 times) and I make sure we don't let the body temperature rise too much.  At one time we took cyproheptadine daily.  Right now those things work.  Took hot ice packs on feet, lots of pain in head, extra water lay on heating pad on back with fan blowing on them to "pee off" extra fluids to reduce some swelling.  (mom thing, and it seems to work).
10.  There is no right or wrong answer when you are doing your best to help your child.  Education is the key to making the best possible decisions and difference.  Talk to parents, read studies, get educated on nutritional benefits, go see Chiari experts, join a support group...whatever it takes.  Even if you just change a couple things here or there (because it does feel overwhelming and hopeless sometimes), everything you do counts.

Extra hugs and prayers for all the people seeking answers for their loved ones.