Stomach Spasms VENT

Ok so this is likely to be a vent but I would love to get others input on some options for Gracie. My daughter will be 5 on the 4th of May. Every since the day she was born she has had trouble with her bowels. They finally diagnosed her after 4 long hard fighting years with Neuropathic Intestinal Pseudo Obstruction. They put in a cecostomy button to help administer her flushes since this seems to only effect her large bowel. Well on Saturday her spasms seem to get worse and then on Sunday she began running a fever and her spasms were getting pretty intense. I took her to her reg pediatrician and he said she has a throat infection. Ok a throat infection???? Anyways she got bad throughout the afternoon so I took her to our Urgent Care Office. When we got there they done some testing and all of a sudden everything moved so quickly. They called an ambulance and sent her to Childrens Hospital thinking that she had appendicitis. Well we get there and they do some xrays, ultrasounds, blood work, etc. They rule out appendicitis yet they can't tell me what is causing her to be in so much pain. They gave her oxycodone still nothing helped. She is on donatal, prevacid, reglan, hydroxizine, singulair, trimicinolone cream, and Go lytely flushes through her cecostomy button. Still nothing is helping. The donatal was working for a while but when the spasms came back they came back with a vengence. The doctor last night said well we don't know what is causing the pain but Pseudo Obstruction Disorder don't have a cure so it is likely this is something she is going to have to live with! I was like no way she is 5 years old she can't be in pain like this everyday. There has to be something you can do. All they could say is no there is nothing else we can do. I am so upset. I am her mother yet I can't get anyone to understand that it is not normal for a 5 year old to hurt this bad. There has to be something that we can do. I don't know what else to do. I try so hard to not give up on fighting for her care yet they will never listen. They never take any of my suggestions or anything. The bad thing is I can't switch GI docs because the only ones we have here in our state work together. Last night they seen how bad she was hurting yet they sent her home not knowing why. I got home with her and in the midst of one scream she says Mommy help me!! I just sat and cried with her. I am her mother yet I can't help her and I can't seem to get anyone else to help her either. It makes me feel so inadequete to be her mother. I just want her to be ok and out of pain. I can understand a spasms once in a while but not 18 in a 3 hour period. Sorry this is long I just needed to vent. I don't really know what else to do.

By chewy1
Posted April 28, 2009 at 12:40 pm
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Just reading your posts has made me cry. That is all so terrible. I can't believe that any doctor is willing to let a patient suffer in such intense pain...but when it's a 5 year old child, that is totally unacceptable.
I checked to see where you were from and saw you are from Arkansas. So am I! I am in Northwest Arkansas though, but I understand what you are dealing with trying to find a GI in the state that will help. I know the ones in my area, will run the regular tests, try the usual medications and when those things don't work, just throw up their hands and say they can't do anything.
Is there any possible way that you can travel out of state to a bigger facility like Mayo, Cleaveland Clinic, or Vanderbilt? I know Vanderbilt would be the closest to you but still not that convenient. I have a great PCP who has refused to listen to the GI doctors around here and won't give up on finding help. He eventually sent me to Mayo in MInnesota. I had a very good experience and found a great GI there. I have made a few trips up there but the best thing is that the GI there is willing to work with my local PCP and they can usually do phone consults with each other and come up with new ideas which don't require me to make frequent trips to Mayo.
I have heard good things about Vanderbilt and Cleaveland Clinic too.
I don't know enough about your daughters particular condition but I just think it's terrible that the doctors say because there is no cure that they can't do anything to help her or reduce her pain and she has to live with it. I don't believe either that they are right...there has to be something to at least make her not suffer so bad.
I will keep her and you in my prayers. Please let us know how she is doing.
Judy

By proudmom2x
Posted April 28, 2009 at 1:14 pm
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I just got off the phone with the GI and they are going to see her in clinic tomorrow at 2:15. They said they don't know what is causing the spasms and don't know that they can help her. They said there is no magic cure to Obstructive Pseudo Motility Disorder. I am so fed up. I take her to Children's Mercy Hospital to a motility specialist there and he is wonderful but our GI doc here trys to be a hero and won't communicate with him. I am to the point of being so mad and sad that I don't know what to do. I want my baby better TODAY not TOMORROW. She has dealt with this long enough. I am to the point where I am fixing to call news stations or whatever to get the treatment by daughter deserves.

By stekcsf
Posted April 28, 2009 at 1:34 pm
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I am crying for you too. Some parts of your story are similiar to my daughter Kenzie. But to see them in pain and not be able to help, i Know is pure H-LL!
They did the same with Kenzie and the appendix, we took her to a surgen and he said sometimes it can be chronic issues not acute. He took it out and she did get some relief, not total, but wasn't screaming anymore. Some else with these issues did the same. I know with kenzie her pilorus spasms so we've also done botox injections into it and that really helped. I know some people don't eat because it hurts to much. they are mostly on TPN.
Just dont stop bugging them and searching for better care. when we did we did more help and care.

Tricia

By proudmom2x
Posted April 28, 2009 at 1:59 pm
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How do they do the botox injections. She has not really ate much of anything since Saturday. I am so afraid that she is going to lose weight again and she was finally gaining. I don't know what to do I just wonder if I should take her back in all she is doing is sleeping.

By td63076
Posted April 29, 2009 at 4:55 am
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I feel your pain and I have a 6 year old son that was diagnosed with Hirshrung's and Neuronal Intestinal Dysplaysia. He was born with these rare birth defects, so my child doesn't know what it is not to be in pain.He suffers with swelling, nausea,vomiting, night sweats from bad dreams and other emotional challenges. Motility disorders can be so discouraging, especially when it's your own child. He can't complete a full week at school without me having to pick him up. His doctor has sent us to Columbus, Ohio to see Dr. Di Lorenzo for motility testing. He had a colostomy bag on for over a year to give his intestines a rest. After revcieving the results from the doctor, we arrived back here in Chattanooga to procede with the revearsal of the colostomy. Immediately, after the surgery, Jeremiah's abdomen swell up like a pregnant women and he couldn't use the restroom. He was impacted! The doctor placed a c-stostomy tube on the side of his stomach for his enemas needed PRN. Here lately, there has been no need for the enemas, because he has only let out gas. He stays between constipation and diarhea. He has a Hickman placed in his chest, as well for protein and nutrition. His weight has went down just as well. I believe from the fear of eating and getting sick. The good thing about it is, you have a partner there to help you on a daily basis and I am a single parent battling this emotional rollar coaster all alone. Nevertheless, it's still hard to see your love one sick on a daily basic.He has so many musle spasms in his stomach, that his legs actually go weak. Maybe we can become more aquainted and compare notes with each other. Take Care of that baby

By proudmom2x
Posted April 29, 2009 at 8:44 am
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Ok so I finally spoke with our motility specialist Dr Jose Cocijn in Kansas City Missouri. He was shocked that she was having problems. I was under the impression that our GI doc here was communicating with him but he said he has only spoke with him once since the surgery. I was so upset. So anyways I explained to him what was going on and he said OH NO! There is no way that little girl is going to live with this type of pain. I told him how often she was having the spasms and he said I am so sorry that they have told you that she is going to live with this amount of pain without calling me. There are a couple more meds we can try and if they don't work we still have options of a Jtube, illeostomy, or TPN (which of all of that I want to avoid). So he said he would be calling our GI doc to talk with him about everything. I am so fed up with our GI. Don't lie to me if you don't talk to me just so I won't call him up. I am going to be the one calling from now on out I know that for sure. Well anyways Gracie has an appt today with the GI so I will let you know what they have done for her. Right now they have her doped up on oxycodone which we all know slows the bowels. GO FIGURE!

By Dominics_Mom
Posted April 29, 2009 at 4:07 pm
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I am so sorry for all that you're dealing with. You are so right about needing to be the one to make the calls from now on. I've learned time and time again that my husband and I need to be the coordinators between all the doctors and to monitor things carefully when in the hospital (e.g., with his IV line). And we have a GREAT group of doctors and we still have to be on top of things.

We will be praying for you and for your doctors. Thank God for the ones who are so helpful and dedicated!

Adrienne

p.s. My son has Pseudo-obstruction as well. If you ever want to talk, just let me know.

By Adance
Posted April 30, 2009 at 11:44 am
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Has she ever been on a medication called Bentyl? It is non-narcotic but it helps me with my severe spasms, even when pain medications don't work. It is a thought. I hope that her doctors can give her a better quality of life now that they are up to speed on her current situation.
I hope this will help
Keep smiling, Alicia

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