chiari type 1

[louisehastings]

Hi , my grandson has been diagnosed with type one after numerous hospital admissions with various symptoms . He has seen a neuro doc who has now referred him to the surgeons . He is only 9 months old and has had symptoms since birth really .We are very worried and confused and cannot seem to find much info on the condition . please help

[selmaS]

  Thank u for sharing so much about ur GS.....it helps me understand all that is going on with him....wow, so young and it does happen....just not use to hearing one so young.

May I ask, was he DX'd with sleep apnea? Many with Chiari do have insomnia and issues with sleep....so it is not necessarily pain keeping him up...just the nature of this condition.

Have they done a CINE MRI on him to see if he has a CSF obstruction?

Have them rule out ALL related conditions FIRST and make sure the Dr is a true Chiari specialist and is well experienced with Chiari as that is the best way to proceed.....

Make sure his breathing is addressed b4 surgery too.....that is very important.

The choking many of us have that as well so it is not isolated to him....

The fainting may not be true fainting as many with Chiari get Drop attacks it is diff and this should also be looked into and may be a result of an obstruction of CSF...and if he has on u must rule out a syrinx as well.

There is much to know and u r so right in learning as we need to be educated to know if the treatment being offered is right and if the Dr is the right one too,

[louisehastings]

Hi , Max had problems feeding from birth and after a few hospital trips was diagnosed with reflux problems and given gaviscon in every feed , This was followed by constipation/diareoh .He saw a pead doc . who thought the nerve what grows through the bowel sometimes stops growing before it reaches  the anus , but this was eventually ruled out . He then had a fit and turned blue , we couldnt wake him so got ambulance . They checked his heart as we have aortic stenosis in the family and this was also ruled out .then he started having fits , probably had about 12 between 5-9 months . he had tests for epilepsy which were also ruled out . then he had an mri scan and this is when he was diagnosed . We were told that most of theses symptoms were connected to chiari 1 .
Other things we have noticed are his inability to sleep , he wakes every 2 hours , we think he has head aches as he pulls and scratches at his head and has  started rocking . We were told they are shaking attacks ending with him fainting and not fits ?? He also seems to choke a lot , often on nothing but his own saliva .His overall development is very good so no worries there .Neuro consultant has referred him to the neuro surgeon have no idea why ?? as we don,t know much about thuis condition . Still learning .

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry ur DGS has this condition, but he is lucky to have a grandparent willing to advocate for him.

May I ask what symptoms he has?....And y is surgery suggested? Many of us were also born with Chiari but did not get a DX or surgery until later in life, so I am interested in what symptoms brought about testing at this age.

Have they ruled out related conditions? Sleep apnea is important to rule out for a child this age.

Other issues r obstructed CSF flow, syringomyelia, over crowding, disk issues tethered cord, ICP,POTS, Ehlers-Danlos......

Make sure the surgeon is a true Chiari specialist and not a NS that does these from time to time....u want a Dr well experienced with this condition


What do u want to know about Chiari?....