August 29, 2011
Where Can We Go To Find Help
The Dr.s we have been seeing call CJ a mystery child. They have no idea what he has or what is going on. They seems to think its ok to just let him remain slow and not able to eat and not figure out why. We as parents can't just sit by and say ok he has medical problems and were not going to fight to see what is the cause. Yes, we know there is a chance he could be like this his whole life, but if we were to find out what it is we might be able to help so he's not in pain so much. And we want to know that we tried everything possible to get him his help.
The drs in our area mentioned that we could either try these four hospitals. They are all Childrens hospital like the one we have been going to. They are Colorado's. bostons, houston, kansas, and Cincinnati. Would like people opinions on what they think is better or has worked great for them. If you have went to any of these your experiences there, ect... Also, if you have went to any other hospitals and have had good experiences what hospital was that, childrens or non childrens. Do want it to be peds specialty though.
Here is a list of some of the stuff going on with CJ. Maybe looking at this will help with knowing where to go or whats going on.
First is his stomach doesnt work, he did have the plyroplasty but didn't do the best job. or something else other than that muscle not working. He cant swallow. he wants to swallow he puts food in his mouth but chokes, throws up if food gets in his stomach. He acts like if you have a sore throat and cant swallow. We think there is more muscles from mouth to the stomach that arent working and want to find a place that can test those muscles.
His whole body his muscles are slow or not working. He was tested and did confirm "low" muscle tone. But would like to know what is or isn't working and if anything we can do to help them work or not. Not just them guessing we want to know for sure. He doesnt grow like he should. His mental development is also slow. His physical features like head, shoulders arms and legs are slow.
Neurology and genetics here have no idea. The GI has No idea.
The biggest issue is not being able to eat. Would really like to know why his stomach isnt handling food and why it causes him sooo much pain. Why he ends up reching and throwing up and just laying around like a dead lump. When it gets at its worst he litterally gets past crying in pain to not even moving or blinking. He has been going through this many times and we want to try and help him so he dont have to keep going through this.
Thanks for any comments and help :)
Add on: Some tests he has had is scopes ans scopes w/ biopsies, lots of stomach empty tests, mri when young been over a year, catscan. lots of genetic tests, just did the 180 array test waiting on those results he had done the older version before. Has had a muscle biopsy. had allergy test and was allergic to only dog. For formula he is on nutren 1.0 right now they just started that , he has been on nutren 1.5, nutren jr, peptamin jr, and nutra jr. Keep switching and all are having problems. Havent really done BD, but have thought about trying it, just seems like the all real food that hits his stomach is worse than the formula. right now they moved him down to 800 calories, don't know how long that will last he's not gaining and some pt. is loosing a little keeping close eye on that. he does 55 rate/440 dose at night and three times a day 200 rate over 120 dose. and that gets to be too much. but we have tried hook up for 24hrs a day and on down and all effects his stomach the same way. so, we do faster than 24hrs because when he is fed for 24hrs he is in the pain 24hrs and when fed less than sometimes he gets breaks of not being in pain. basically if something gets in his system he gets in pain.
He was on a GJ tube for awhile and he did better when fed through J, but still had problems. Then after plyro surgery they put him back on g only.
Also, for talking he can only keep around 25 words if that. If he gains a word he looses a word. And with all monumental stages it used to be he would gain it then loose it then gain it, over and over, but the gain part has cut back lately.
when he was a baby he could swallow at most 2 oz, but would come up second it went down, now he don't swallow at all.he has never been tested for seizures all though was brought up, but believe his shaking is "comfort" but they are stumped b/c he does gain stuff and then looses and lately there hasnt been much gain. its been more losses.
On his swallow tests the first two he would swallow a very little to non, not enough for test and would come right back up before they saw anything, the next ones after that he couldnt swallow anything.
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ReplyDeleteI would start with Boston. I have been there and they did a good job with my daughter and others that I know go there. She went for GI studies and they were very kind to use during a snowstorm. :) They know their stuff.
Hi, my name is Jennifer Cline!! I found your blog site through a facebook tubie kids support group. I just want to say wow you have been through so much and I know how that is and how hard it is to keep it together, so kudos to you for that. I had the same problem with my son, well not the same exact medical problems but close to it. But I did have the issue of him being a mystery and it was so frustrating cause how can you make him comfortable and try to live a halfway decent life if doctors can not find what is wrong with your kid in the first place. My son was born in Connecticut and I never got any answers then in 2007 we moved to Texas and after going thru a couple hospitals and few doctors I found Cooks Children Hospital in Fort Worth, Texas. Once I got into all the doctors associated with that hospital it was awesome. We got a true diagnosis after doing a series of genetic tests called Fish Analysis and although there is no cure it was nice to finally have something to know and research on and then work like crazy to make him live a better life. And after 8 years of him being a mystery it was long overdue. He got diagnosed with MECP2 Duplication Syndrome, Epilepsy, and GI problems all within months and from there we went through several medications and things to make his seizures better and his GI problems better. He is now seizure free and had a mic-key G button and is doing so much better. His Nuerologist is awesome, his name is Dr Scott Perry. His GI and nutritionist are through Cooks as well and they are all awesome. I know they do not have cures for alot of things but these doctors seem to always find a way to cure stuff. I dont know where you live now but I would drive across the country to go to this hospital. I do hope this helps you and I hope and pray that you finally get some answers soon. Here is a website with a video that was on the local news here about his neurologist and the hospital. http://www.wfaa.com/home/related/New-epilepsy-treatment-changes-familys-lives-116406699.html
ReplyDeleteI am not sure if your child has epilepsy but this nuerologist specializes in more than just epilepsy and he is all about finding a solid diagnosis on your child and then fighting like crazy to "fix" all the issues possible. I do not know if you have facebook but I am under Jennifer Cline and you are more than welcome to contact me through there if you have anymore questions at all. I wish you the best of luck.
My daughter alex was born w/ multiple brain & eye abnormalities. Also muscle tone issues. She has an unknown syndrome also. We treat each new problem as it comes along. She kind of falls into the lissencephaly catagory so we just go with that. I was told when she was born she would live 1 maybe 2 yrs. Shes going to be 9 this nov! She developed GI issues as a result of a seizure med she was on. Took lots of arguing w the neuro & finally just bringing her to a GI dr on my own gut instinct. By then it was too late, reglux had destroyed her stomach muscles. She has had a g tube since age of 2. I bring her to AI dupont childrens hospital. They are so organized and reallt know their stuff. When alex had c diff the GI dr knew INSTANTLY what it was.
ReplyDeleteThis hospital is in DE and probably out of the way for you but if you dont get your answers elsewhere, its worth a shot. Just want you to know you arent alone in the world of no answers. I will never know alexs syndrome. With no diagnosis there is no prognosis, so i've been told a million times over. I have learned to luve day by day bc if i think to far ahead i go crazy.
Just go with your gut & dont get pushed around by all those specialists. No one knows your kid better than you!! Im blessed to have a pediatrician who knows i know my kid better than anyone! Those are the drs you want & need.
Best of luck!
Feel free to email me if you ever just need to talk or vent:
Goonygrl@comcast.net
-connie
Bless your heart! It is so hard to have a child that is suffering and not have anybody be able to figure out why. We took our daughter from AZ to Nationwide Children's in Columbus, OH to have motility testing done. I'm not sure if that's something that would help or if you've had that done already, but the GI team there was amazing. If there are any questions you have about that, I'd be happy to answer them for you. My email is brandisgoodman at gmail.com.
ReplyDeleteFirst off i would like to introduce myself my name is Marie i am a proud mother to an amazing little girl Caylyn. She is 22 months old and i must say reading your post has struck something in me. Our daughter is diagnosed with Autism Spectrum Disorder with Cerebral Palsy , and Auditory and Sensory disorders. She can not walk or talk.
ReplyDeleteShe also has severe problems gaining weight and maintaining her weight everything she eats she chokes on. We are going to see a feeding specialist in 4 months.
We currently have her on Ele Care with Pediasure 4x a day a boat load of vitamins . We also have her on a high calorie diet well as much as possible we have had to keep her on stage 1 and 2 baby foods. This is our last ditched effort to prevent a gtube from being placed.
That is the only thing she does not choke on. She does vomit alot when she eats but she does not have Acid Reflux. She has Low Muscle Tone that has lead to the CP diagnoses.
We have been told her feeding problems are due to the low muscle tone. I am so sorry to hear all your going thru. Sounds as if our children have alot in common.
We love Boston children's hospital. They have taken such great care of my Sophie. The hospital is very child friendly and family friendly.p. Let me know if there is anything I can help with.
ReplyDeleteErin
Ladystargazer@hotmail.com
Mom of Sophie ( tube dependent), Maggie, and Charlie. Former 30 week triplets born very sick but thriving now!
I'm from Omaha, lived in Colorado for 5 years and as of 6 months ago I now live in Iowa. I would never recomend Denver's Children's hospital to anyone. When we went there I took everything they said as truth and just assumed the way we were treated was normal for "great" hospitals. We were never told about a cure for what my son has and somehow nothing ever came up when I googled it. When we moved to Iowa the first thing the GI mentioned was the proceedure that would "fix" my son's issues if it worked. I was shocked that my GI from Denver never even mentioned it? I would HIGHLY recomend looking at the University of Iowa Children's hospital and Clinics. They have been GREAT for us! Never thought moving to the middle of no where would be such a blessing to my son as far a medical care goes. If you need the names of specific doctors or want anyother information on the University please feel free to email me at daveandjamiekommer@yahoo.com.
ReplyDeleteWe regularly see several departments at Children's Hospital Colorado, and we've had really great doctors through them! From your post I would at least talk to the doctors here in CO, they have a muscle clinic (which may help to figure out overall what's going on) and I would definitely get a neuro consult to figure out if it is seizures or not, which may explain the gains & losses in skills. Hope you can get some answers and treatment for your little guy!
ReplyDeleteShelly, My name is Jamie Tennis & my Aunt Sheila Higgens gave me your blog & asked me to read it & give you some information on Children's Mercy Hospital in Kansas City, Missouri. I have a son about to turn 8 years old this Thursday. He was born with Tetralogy of Fallot with Pulmonary atresia, diGeorge syndrome, has asthma & has only 2 of the 5 quadrants of his lungs that work. He's been through the ringer & back, had multiple heart surgeries, immune problems, etc......I absolutely love CMH. We have been seen in almost every clinic at one time or another & have had only AMAZING things to say about them. We have spent many a night at the Ronald McDonald House & have always felt welcome & safe while spending so much time at the hospital with our son. I know they specialize in about everything you could possibly think of & just wanted you to know how amazing they've been to us. I never worry when my son is in their care. They are the best of the best & have been in the top 10 pediatric hospitals in the nation for many years. I hope this information is helpful in some way to you & if you have any additional questions that I could possibly help you with, please feel free to contact me. tennis@peoplestelecom.net I hope you find somewhere to help your little guy. Keep your head up & stay strong. A nurse once told me how special I must be & I asked her why. She said, "God doesn't give these babies to anyone"!!!
ReplyDeleteWishing you all the best. Our daughter had serious serious vomitting issues for months. No one knew what was going on. Her tests were all fine. Everyone was stumped. No reflux. If we had her on continous feeds she would vomit like crazy. At a rate of 30/hr over 24 hours she was vomitting like crazy. We put our foot down and went to bolus feeds. Like a "normal" kid. She vomitted less and less over a 2 week period, then she stopped. We would do 60/60 and then larger boluses when she was in a deep sleep. We gradually worked up the boluses when she was awake. If she threw up we would take a step back and spend a few more days where she was tolerating it fine. We never went up more than 2cc a day. Sometimes 3 days.
ReplyDeleteNow, she is bolusing 200cc at a rate of 150, taking purees and small amounts of formula orally. It was like a sudden switch. We have no clue why she was vomitting so much, but don't question it so much now because she hasn't thrown up in two months.
I hope I was of some help.... I don't know what tests you have done but if you ever want to get in touch, send me an email and we can chat. Our babe has had a bunch of tests and has had some positive results. I can maybe share that with you privately. I'll send you an email!
Cheers!
I have tried a few different Children's Hospitals (CH). We started in San Diego CA, where we are originally from. But they gave up trying to diagnose my daughter Corrina. We sent a ton of emails and made a bunch of phone calls and faxed a lot of medical records all over the nation to find the right CH for her. We came upon 2 GREAT hospitals in TN. Vanderbilt and East Tennessee Children's Hospital (ETCH). They were both SUPERB and very pro-active in finding diagnosis. We also spent some time in Houston at (TCH). I also really loved everyone there as well. Houston was a difficult place to live for our family, but we made it happen for the time that we were out there. I know that the Hospital itself was truly amazing! There is not one bad thing that I could say about TCH, Vanderbilt, or ETCH!
ReplyDeleteI would recommend sending e-mails, calling the different Dr's and send medical records if needed to anyone that is willing to listen. That is what we did and got the best response from all three of those hospitals. The Dr's listened to everything that we had to say and took it all into consideration.
I have since lost my daughter, but I continue to help fight for those that I can help. I try to be an advocate the best that I can. My wife and I have developed a G-Tube pad, which is something that I truly wish that I had when I had my daughter. I have been hearing that these pads are working miracles on the sites! You can find them at www.patchworkpeddler.com or www.gtubepads.com.
Our hearts are truly out to help those that we can. God Bless and our prayers are with you!
Praying for CJ and family! What were the results of the MRI and was a full spine & brain MRI performed at that time? My son has some brain & spine anomalies that can and do cause some of the same issues CJ is dealing with from the swallowing to the low muscle tone. Jack use to vomit with every feeding, especially when run over the pump while he was awake. He did better with bolus feedings during the day and pump only at night. I still feel that it was some weird pressure issue due to either his chiari or hydrocephalus that only affected him while awake. No doc ever bought it, but his dietitian that witnessed an episode did and helped us change his feedings. He would bang his head after just a couple mL's and then he would vomit. He also did better (not completely vomit free, but better) once we did switch to a blenderized feeding. Elecare was the only formula Jack could even halfway tolerate. It seems that all of the muscle and language issues would be coming from some issue with the brain/spine. Have they looked at the myelin and corpus callosum? They have also wreaked havoc for Jack. I know CJ has had a billion tests, so this may all be old news. Just trying to help you find some answers. Jack's specialists are all at Riley Children's in Indianapolis, so I don't know much about the other hospitals you are looking at. Praying for answers!
ReplyDeleteThankful that God gave your son parents that love him so much. I have not help in this world for what could help him but I look forward to seeing what God is going to do.
ReplyDeleteHi, my heart goes out to you. My daughter, 19 now, had some eating problems, though not as severe as your little one. The only thing I could think of as I read your post is the stories I've read in Living Without magazine. Maybe some of those stories might speak to you: www.livingwithout.com
ReplyDeleteI will say a prayer for you and CJ. God bless.
Dr. Kaul is our favorite GI and he's at Cincinatti Children's. I would HIGHLY recommend CCHMC! Wherever you go, I hope you get some answers soon.
ReplyDeleteTell your Dr to prescribe either Neocate by SHS or Elecare for tube feedings. Seems like your son can't digest (break down) the proteins in these formulas. The two I mentioned are amino acid based formulas and given to kids with digestive disorders. There is also DuoCal by SHS to add calories. It is pure carbohydrate and other formula companies have their versions of the same.
ReplyDeleteTake him to Cinncinatti Children's first. They're great!
Thanks everyone this really does help out :)
ReplyDelete