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Originally Posted by lillymae  First let me say that I am Praying for your family. Second , you NEED to find someone who specializes in Chiari Malformation. Chiari is Not a brain deformity it IS a Skull deformity witch can cause brain problems & would explain the lack of chewing motion in your son as it can affect the neck & the 2 can cause painful chewing motion. PLEASE find a specialist, DO NOT let just any Dr treat your son. There are not enough Dr's familiar enough with Chiari Malformation. FYI Chiari is Both Congenital & Hereditary. Do your research & join Chiari groups to find the BEST Dr's for your little man. Again , I am Praying for your family. |
Mike Tallulah: I hope you are able to get your son to eat properly.
I would look into the PEG tube myself- Just because he would have it does not mean you would have to use it. It would take some of the "you must eat" pressure off of him and you. It may give him much better quality of life for both of you. Just a thought.
My brother had Chiari Decompression surgery at 14. He did great.
I have NO personal experience in what you are enduring with your son....my heart breaks for you, as a mother with a special needs son myself. I can clearly understand your anguish, as any other mother can. I DO have personal experience with the power of prayer, and have been touched directly by Him, which makes my belief in the power of prayer, absolutely undeniable and unshakable. So I KNOW I can do that for you, pray.....and I know He is listening to all our prayers for this small child of His. The only other thing I can do, as a professional in a speciality field of medicine (cardio-vascular, and transplants) I am well aware of the absolute need for a SPECIALIST in ANY complex diagnosis a patient has. I am NOT a pediatric nurse and have NO experience with pediatric neurosurgry or the doctors that specialize in this area of medicine. But it is imperiative you find the BEST such surgeon for the best outcome onyour son. I think that is information you can garner thru association with MULTIPLE Chiari support groups, which will lead you to names and hospitals that have the best treatment outcomes for this condition. To enable you to take the time required to thoroughly and completely investigate who would be best suited to treat your baby, I agree with Mike Tallulah.....I would go ahead and have a PEG tube inserted. THAT alone will take a TON of concern and worry off the table for you....if you need it, it is there. If you dont need it, no big deal, dont use it....BUT YOU WILL BE FREE FROM THAT CONSTANT TERROR THAT YOUR SON IS NOT GETTING NOURISHMENT REQUIRED TO KEEP HIM PHYSICALLY "TUNED UP" AND IN CONDITION TO BEST TOLERATE ANY SURGERY HE MAY NEED......or even to survive! My heart goes out to you sweetie, and I will go to my knees for your son, as I have done for others here in great physical crisis. Have faith Tracy that our prayers ARE being heard, and He WILL intervene You remind Him, He promises us if we call out to Him, he will listen...you make it clear you ARE calling on Him to honor His promise, and you are asking for His guidance and direction on WHERE you need to be going to get the best help for your son! He WILL take it up for you and orchestrate this whole thing for you! God bless you and your son!