PLEASE Pray for my 2 year old son!
 

I am normally a very private person, but the news that I got today about my two year old son has rocked the foundation of my world and I could really use some support and prayers please.

My son doesn't eat food. He drinks about 7 to 8 bottles of pedia sure a day. He has never been a good eater even at birth. He was 5 1/2 weeks early. His doctors had been hoping that things would get better as he got older, but they haven't. He has OT that comes to our home weekly to help try to get him to eat.

Recently his pediatrician thought he wasn't doing as well as she had hoped and wanted to start running some tests. Let me say this when I say he doesn't eat food I mean just that. He will pocket food in his jaws or chew it up and then spit it out. Very little swallowing of any foods. If he asks for fries we run out and buy some, after he eats three (if that some days) he will tell you all done and won't eat any more. Sometimes he will go days without eating ANYTHING. So we have had a few close calls where they thought they would have to put in a PEG tube for feedings. But we have been able to hold his weight steady with pedia sure, so haven't had to go that route yet. But doctors have cautioned us that if he ever refuses pedia sure we will be in trouble. He got sick with a little cold about a month and a half ago and refused pedia sure for 3 days. It scared us beyond belief, because he doesnt have fat reserves of a "normal" child any illness can spell disaster for us. After that scare we all agreed we needed answers.

1st test ran was a swallow study... Results normal.

2nd test ran scope... He had to be put under sedation... Results top of his
small intestines full of acid... Put on Previcid 2x a day.

3rd test ran a week and a half after second MRI, which was this past Friday and again he had to be put under sedation...

Results of the MRI where given to us today while at the GI doctor who ordered the test.. He said the scan showed Samuel has a Chiari Malformation f the brain and that he was sending us to see a neurosurgeon and sending the results to our pediatrician also. He said they may have to operate on his brain that this may or may not be the answer to what is going on with him or that it could just be another piece of the puzzle.

They have also started him on a medication to increase his appetite. He's been on it for about a month and a half (since the pedia sure scare). It is making him eat a little more not much though, but it is causing him to stuff and pocket food in his cheeks more.

I am reading all I can on this because I've never heard of it before. We told our older children they are understandable upset. I'm reall worried about my 16 year old. He and Sam are the best of friends and their birthdays are just one day apart. When I had Sam, my son told me in the hospital that his little brother was the best birthday gift I could ever give him.

I know this is long I'm sorry, I just needed to tell someone. We've called family everyone is crushed and wanting answers and I just don't have them right now. The last thing the doctor told me today was "Let's keep praying. Try not to worry, we will make it through this."

Please please pray for my baby! I can't stop crying....
I keep going in the bathroom to cry because I don't want him to see me upset.

Tracy I am so sorry for you, your family and sweet Samuel. I am here if you need/want to talk. You and your family are in my thoughts and prayers. Please keep us updated.

As a mom myself I can not imagine your emotional pain. I am so very,very sorry and would just hold you and let you cry if I was there. I will keep you and your family in my prayers. Please keep us up to date on how we can pray and how you,he and the rest of your family are doing. Again my heart just breaks for you all. Many blessings heaped upon you and your!!

Tracy I am so sorry that your son is having so many difficult health issues. Sending prayers for your son and your family.

Sending many prayers

This is such a scary and sad story it has me in tears. At least you now have a possible diagnosis for the cause of the problem and who knows what one day soon might could be done to help him. I can tell from you words that you are floored, overwhelmed. But sometimes getting that reality punch, once we've had time to deal with it, helps us to focus harder as you have been doing, on answers and better treatments. Maybe brain surgery could help! It sounds like you and that baby have already been through frightening and awful times with this and I'm praying now you might be on the path to answers and real help. I pray little dear Samuel will get some real medical help and that your other children will be able to handle the news in time and help Mom and Samuel through this by just being kids. Go ahead and reel with the punches now, grieve and cry, and when you can, pick yourself up and prepare for the fight ahead for Sam's future. I will pray for your peace and strength also, Tracy. Please let us know how he is doing as you can.

How do I contact Dr. Ben Carson?
If you would like to schedule an appointment or consultation with Dr. Carson, please contact Johns Hopkins USA at 410-955-6406. If you would like to write Dr. Carson, please use the following address:
Benjamin Carson, M.D.
The Johns Hopkins Hospital
Department of Neurology
Harvey 811
600 N. Wolfe Street
Baltimore, MD 21287

I'm so sorry to hear about your son and everything that all of you have been going through. You are always so upbeat in your posts, I never would have guessed you were going through such difficult times. I am a strong believer in the power of prayer. I will keep your son and you and your family in my prayers. Do you have the book, Jesus Calling by Sarah Young? It has helped be through difficult times in my life. I know they sell it on Amazon.

You and your family are in my thoughts and prayers!

Tracy, I am so sorry for this news. But remember one thing, GOD can move mountains. I know you are a woman of faith and I know you believe this with all your heart. As a mother, I understand your pain. I understand your fears. And I understand your hurt. As I traveled the road with my child recently with medical issues, I can tell me that my faith carried me through it. My faith and LOTS of wonderful prayer. God will carry you and your family through this. I will pray that he provides you with the strength that you all need to get through this. Hugs to you friend. PM me if you need to talk.

I am so sorry.. my heart aches for you. Sending lots of prayers to you and your family!

I believe in the power of prayer and I will be praying for your son. I wish I knew how you could get him to eat. I had a girl in 1st grade who choked on a piece of turkey. She refused to eat. Dr. was going to put a feeding tube in her and then mom took control. She literally forced this child to eat. Finally she got over the fear and started eating. Now if your son has other issues this may not be the way to handle this. I will pray that he will start to eat. Try grinding up fruit, blending smoothies, just make it tasty. I used to drink Scandi Shakes to gain weight after surgery.
May the power we have in Jesus heal this precious little boy!

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.

Tracy, your family is in my thoughts and prayers. I pray that the medical team working on Samuel's problems will allow God to guide them in making their treatment plan. Sending healing :hug: and :hands: your way.

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.

I am so sorry to hear. Sending you and your family prayers.

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.

:thumbup::thumbup:
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!

I'm so sorry this is happening. I will pray for you and your son.

Tracy, I know first hand how you feel...........Prayers, Hugs and Support to you and your family............

i will keep you and especially your son in my thoughts and prayers. i hope you find a specialist who can finally shed light on the situation and also has the answers you so desperatly need. try to stay strong and calm...easier said then done, i know. i wish there were more we could do to help you! hugs and prayers.

Thank you all for your concern and kind words as well as prayers and support. I can't tell you how much it has meant to me.

Yesterday and last night were really hard for me, but today I have pulled myself together, dusted myself off and am focusing on what's BEST for SAMUEL. He is my main focus and concern. He is still running around being his happy go lucky self.

I was kneeling beside the bed earlier with my head on the bed, lost in thought. Sam walks over climbs on the bed, kisses the top of my head climbed down and went back to playing. The revelation in that for me was God will always give you what you need when you need it. I didn't know it at the time, but I needed that at the time just to remind me what I'm fighting for!

Dr. Carson was already on my radar yesterday, because that's one of the 1st things I did was research peadtric neurosurgeons and he came us as being the
best. So we sat down last night as a family and watched the movie about the
story of his life. But thanks so much for posting all his information.

To the young lady who commented about me always seeming so positive in my posts to others. Thank you, I never want to put off what I'm going through onto others. I try to stay upbeat and positive because you simply never know what others are dealing with in their everyday life. I try to talk to and treat others the way I would like to be treated.

Again thank you all for your kindness!

Wanted to show everyone who they are praying for...
Samuel aka Sam aka Sammie...:)

Thank you again everyone.

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He is beautiful as are you. I hold Dr. Carlson can help him. Praying for you both.

Tracy, I just saw your post now and I am keeping dear Samuel, you and your family in my prayers. He is such a handsome little boy and what a smile! May God answer our prayers for Samuel.

Samuel and your family will be in my daily prayers.

Once again all of you have moved me to tears. I'm am so sorry your precious little boy is ill. I am praying for your family.

Janet

Praying for your child, your family and you.

I will be praying for Sammy and you...our dearest friend ever JC will handle this for you..Hugs to all of your family

Oh Tracy Im so sorry. How very scary. Make sure you get another opinion or two. I saw someone say its a malformation of the skull. I googled it... this is what I found.
What are Chiari malformations?



Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal). When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation.