Cranial Nerve Issues

My daughter is 6 1/2 mo old. And she is a pure mystery. Not one Dr can tell us what is going on with her. I'm not big on labels, and would rather her not be labeled. However, I also want to have some idea on what to expect for her future and how to help her with what she has going on now. This is what she has going on...
She has/was IUGR, pontocerebeller hypoplasia, shortened corpus collasum, ASD, and many cranial nerve issues. I've read about IUGR, PCH, ASD and the corpus collusum. Where my problem is coming in is with the cranial nerve issues. She has 11 Dr's currently for all of her issues and every single one of them has mentioned one of her cranial nerves. So she has issues with all 12 cranial nerves. For all those who are not familiar with what the cranial nerves do, here is a short list of some of her issues. She is deaf, has a right side facial weakness, has eye issues where they don't turn all the way laterally, she has no feeling in her eyes (you can touch her eyes and wash them with saline and she doesn't even flinch), she doesn't blink appropriately, we do not think she can smell, we don't think she can feel her tongue (as she has bit/gummed it so hard she made it bleed and never even cried), she is hourse (you can barely hear her cry), trouble sucking. I think thats a majority of her big issues.
She sounds alot worse on paper then she is in person. I mean, yes she has all that going on, but she acts just like a normal little baby (for the most part). She is a little developmentally behind, but she is hitting milestones, just at her own pace.
I just want a Dr to pay attention to these cranial nerves and no one seems to care about them. They all say yes she has issues with them, but no one will look into see why and if they can be fixed someway. And I've excepted this answer until recently, when I've read others questions, journals, comments about thier cranial nerve issues. Plus, I am also starting to wonder if a nerve in her face hurts because she is always grabbing, pinching, and pulling at her eye/cheek off and on her whole life and she sometimes develops a rash on that cheek. She doesn't cry with the rash or pulling, so I'm not sure if it's painful (it's just a guess). So now I am on the hunt for a neurologist that works a lot with cranial nerves and won't blow me off. I guess my question for all of you is do you, your child, or a loved one have any issues with any of these things? Sometimes I feel like I keep searching and getting no where.

Report post

4 replies. Join the discussion

I can understand - My son was born with a birth defect of the cerebellum - he was a health happy boy then he started missing milestones - I think most doctor prefer not to go into major detail with kids with Cerebral Palsy which is brain damage. It is really hard to see what the total outcome will be for the future. I'm glad to hear she is happy and acts like all babies. I would continue to research for a great neurologist. My son's first neurologist said that there was nothing wrong with my son he was l5 months and not sitting by himself - then he said let's wait until he is 2 to see what happens. I did not wait I went to UCLA and we did an MIR and there was the problem with the cerebellum. Jeremy is l7 now and doing fantastic in high school. Don't stop being the best advocate - you know what is the best. I'll pray for you. Lorie

Report post

There are so many nerves in the head I know the eight nerve has to do with hearing and balance because I have problems with vertigo. i also have problems with my greater Occipital nerve, and get nerve blocks because that is getting inflammation due to the osteoarthritis in my cervical spine. The nerve runs up to te top of my head but not to the face but the pain will radiate down to the eye. My whole scalp hurts and where my neck and head meet hurts really bad. So I know the other nerves also play parts in fuctions of the eyes face ect. I found out alot of info reading a Graves Anatomy book and learned where everything is and what it does. Educating yourself is the best thing for your child! Then you just keep going to neurologist after neurologist until someone listens to you, but the more educated you are the better. I have Hereditary Hemachromatosis and I had a Digestive Disease doc sit and spend an hour just talking with me about it because he said he had never met a patient with it who new so much about it! So keep the faith! I don't know where you live but Nemours Childrens Clinic is great and Wolfsons Children's Hospital is also great they both handle children with serious illnesses. I'll say a prayer for you.

Report post

I just wanted to reply to you. My son is 7 months old and he does not have a problem that is in any way similar to your daughter. However, we have the same lack of care/disinterest from treating doctors. My son appears to be a normal baby, but he has a teminal renal condition, no one seems to be able to treat him. I've taken him from one side ot the country to the other and I'm about to take him to the most Nothern part in an attempt to find a doctor that can help him. Because they aren't entirely sure what is wrong with him and they can't fix it - they just don't seem to care or take us seriously. So I just wanted to say that I understand your frustration and that I admire your determination. It's a tough gig being the parent of a terminally ill kid. Keep pressing forward, I hope you find answers.

Report post

I found this site which gives information about helping cranial nerves

http://calder.med.miami.edu/pointis/tbiprov/MEDICINE/sense1.html

There is also a manual for massage for the cranial nerves called the Manual Therapy for the Cranial Nerves. If you haven't read it yet- it may give you some ideas to try at home.

Report post

This journal entry is closed to replies. We close all journal entries after 90 days.

If there's something you'd like to say, here are some things you can do:

Things you can do