Saturday, September 5, 2009


so it was looking as though we would be coming home tomorrow....but the vomiting has reared its ugly head again so it will be longer. i am bummed but do not want to come home until he is ready and am glad they are taking this thing seriously this time and not just dismissing it as a virus or something like they have in the past. one theory that is being tossed around is cyclic vomiting syndrome, the symptoms sound similar to what has been happening, although kids do not usually develop it until around age three, but even though its not common for a kid as young as milo to develop it, it is not unheard of. i don't know. we will see.

here are some pictures of my little cutie at the hospital....


Nicole said...

You are in my thoughts. Give LOTS of hugs and kisses to Baby Milo!

Amy said...

Jamie, I've been reading your blog for a few months now and never commented but I just have to write to you now. I am so sorry that your little guy is having so much GI difficulty. My son, Dylan, has had a ton of trouble too but since we went gluten and casein free he has improved tremendously. I am curious if Milo has ever had any food allergy testing? For our kiddos with less-than-ideal health, milk and gluten can wreak havoc on their digestion. But the docs tend to just add meds instead of trying to fix the underlying issue. Taking Dylan off of Pediasure almost immediately cleared up all of his reflux and he only retches these days if he is constipated (he's had a fundo so no vomiting). We make all of his food in the blender to feed through his g-tube and he is off all the reflux meds.
If Milo does have CVS, then giving him easier-to-digest foods might help to avoid vomiting if that is a trigger for his vomiting phase. Good luck, you and Milo are in my thoughts.

Jenkins said...

Sorry to hear that he is having such difficulties with the vomiting. Praying that the doctors will find some resolve.

Our son is in the midst of the same thing. The vomiting is way beyond a reflux vomit. He was moved to a G-J tube to be feed into his intestine hoping that would fix it...that was one year ago and we are will dealing with vomiting. We end up in the hospital after a nice spell of vomiting blood. We had tried all the typical meds and down to the most stripped down formula. Brayden had a motility study to watch how his stomach moves things along. His stomach does not move much if at all. Even though his food was not going to his stomach, the stomach still had to handle the bile, secretions and saliva. It was not handling it at all, his stomach is not working. Those things in his stomach had to go somewhere so he would vomit. We are suctioning his stomach every four hours to help and so far it seems to help. He also has endoscopies to look at the cause of the vomiting, they show the stomach is pretty beaten up from all of the vomiting.
Sorry for all of the information. I hope you find some help.

mom2maddy2000 said...

Hi, I have just come across your site while researching the Childrite seat. I look forward to reading more about your little one. However, I noticed this post and we, too, struggled with vomiting for YEARS with our daughter (who also has CP). We discovered that she has something called Eosinophilic Esophagitis (sp?) and Duodenitis. She also has delayed gastric emptying. Basically, her body treats the formula as a foreign substance and attacks. She had a G tube and a J tube placed and the vomiting has stopped. I just read Carrie's post about a G-J surgery and this is not the same thing. She has two separate tubes. She is fed continuously through the J tube and the G tube has something called a Farrell Valve Bag attached which allows all of the stomach acid and bile to drain out. She doubled her weight in less than a year after having this surgery! We are from Florida but took her to Cincinnati Childrens Hospital Medical Center to have the surgery because they are the top research hospital for EE. Good luck to you! I look forward to reading more of your blog and learning about Milo!

therextras said...

Looks like you are getting some good support from parents who know. If you read 5minutesforspecialneeds, one of their columnists has a lot of experience with cyclic vomiting.

He sure looks cute despite not feeling well.

Wishing you quick resolution to this latest problem. Barbara

Katy said...

My goofy feed-reader is acting up adn I had no idea you guys were in the hospital! I am so sorry to hear that--hospital stays are the worst and SO hard on a family.

Looks like you're getting a lot of interesting info here. I know that we had to eliminate milk from Charlie's diet because he was just return it to me later--Yuck! I hope that you are able to find an answer to all these questions.