Thank you for the warm welcome... I am really glad I found this website and I am very confident that I will be able to find the required support for my daughter here.
my daughter is just few days short of 2 years... We have been noticing developmental delays since she was 4 months... She had wobbly neck at 3 months... did not lift her neck when she should have... sat up by herself at 9 months.. not walking yet and still babbling. she had blocked tear ducts when she was born and has a prominent squint now.
Since there are some health related issues in the family we were concerned when she did not hit her milestones on time. We started checking with doctors, pediatricians... we were recommended physiotherapy since they suspected weak limbs... it helped but not so much... we are still continuing physio, OT and speech therapy. But one of our visits to the pediatrician lead to the discussion of a possible MRI to rule out brain related issues. They found Chiari Type 1... the doctor mentioned that this was an incidental find... they were not suspecting chiari. We are yet to meet a neurosurgeon for a further diagnosis of the MRI.. This appointment is scheduled for the end of May.
After knowing that its chiari type 1 and my concerns are now narrowed down to what do I have to do to help her... I have listed my concerns below.
My concerns are about my baby's development...
1. will she catch up in terms of her motor skills? How should I help her develop her fine and gross motor skills??
2. She is still babbling... the speech therapist said that she is using all sounds... will she speak? What do i do to help her start talking?
3. She doesn't really communicate with us... either by sound or by pointing... whatever she wants she either goes and takes it herself or brings it to me to open it... she never really asks for things when she is hungry or thirsty... what should i do to help her communicate?
4. When something hits her head she seems to like it and keeps banging her head again and again... is this because her head hurts and it feels good when she bangs her head. She doesn't bang very hard but i am not sure why she does it... she doesn't seem to be in pain otherwise.
5. Is this squint a common thing related to chiari? will it correct itself or will she need surgery?
These are a main concern areas... If anyone can provide answers it will be very helpful.
Hi Vanni, welcome to you! My son was born with Chiari w/syrinx. We found his at 14 months when I demanded an MRI be done. His pediatrician told us "oh its just Chiari, no big deal" So yes you need to speak with a neurosurgeon that specialized in Chiari. It was a big deal, a very big deal. His would have killed him without surgery. That being said, some of the things you describe for your daughter sound familiar. The squint as you call it, I called it my sons headache look and that is a sign of Chiari. Weak muscles are also a sign of Chiari. My son met all of his milestones but they seemed difficult for him. After decompression surgery, the headache look/squint went away immediately and his balance returned. What you are describing doesn't sound like just Chiari as far as her developmental delays. It sounds like more going on for her along with the Chiari. Once you see a Chiari Neurosurgeon, they should be able to have her tested for other syndromes that accompany Chiari and will probably recognize them based on assessing her. My son also went through therapies and such before being diagnosed with Chiari. None of them helped one bit until after he has surgery. Then as part of his recovery he had physical therapy and still does...he is now 4 and has had 2 decompressions surgeries. I don't have a clue how things work in Australia as far as finding a neurosurgeon but it is very important that you find one that specializes in Chiari. Your daughters pediatrician cannot tell you definitively a chiari diagnosis, that is where the neurosurgeon comes in. With her symptoms being as bad as they are, they should try and get you an appointment a lot sooner. I would press this concern and see where it gets you. Also emphasize a chiari neurosurgeon. Please let me know if you have any other questions.
Here are some links that may help with your questions.
Welcome to this site,so glad you’ve found us.You have come to the right place to gather the info. you need.It seems there are numerous questions to answer about your child as you can see the advice here comes from some knowledgeable people.I hope you get the right NS on her case,it is of upmost importance that you find a chiari specialist that does lots of decompressions each year.Keep us up on her progress.
Thank you for the replies... I did go through the ED syndrome and hypermobile... my daughter doesn't exhibit any of the symptoms mentioned.
When I mentioned wobbly neck... that corrected itself by the time between 4 and 5 months of age. She has full range of movement in her neck. and she doesnt seem to be in pain.
In her case more than anything Occupational therapy seems to help... She has shown progress after couple of one on one sessions of OT.
In terms of the squint... she always seems to have it... initially she used to squint only when she would concentrate on something... now she always seems to squint... We visited couple of eye doctors... all of them suggest that we should wait at least till she is 3 before taking any step.
I have enquired about the NS we are visiting... He seems to one of the best in the field and has dealt with chiari cases... Hopefully we will get to know if its just chiari or there is more to it after we visit him.
Right now my major concern is her communication with us... I am not sure when she cries why she cries... last night she cried a lot... I was not sure why... then after several guesses and tries I forced a bottle of milk down her throat and then she fell asleep... Any tips on how to get her to communicate?
Vanni, hi mom! I dont have kids (so no experience)but I thought of baby sign language when I read your post. I know a couple of moms who used this with their babies who were a bit delayed. Also wanted to second what Toni said about finding a Peds Chiari specialized surgeon
