My daughter is slowly dying

Posted by goincrayz @goincrayz, Jun 17 12:28pm

I m at a loss here. I’m writing about my 28 year old daughter, Sherry. She suffers from MS and severe gastroparisis. She is losing weight by the day. She can’t keep anything down. Even liquid is a problem. She throws up everything. She has seen doctors for her MS, for her stomach problems, and all kinds of specialists. She’s had Botox and it made it worse. Now, next is to try a G poem and gastric stimulator implant. But she really need is a feeding tube. But when it comes down to it there is no one willing to do anything for her. Doctor bills are mounting. She has been to Specialist and there isn’t any change. They just seem to be content with her pain and suffering. Sherry was a beautiful, vibrant lady, now is embarrassed and ashamed of how she looks. I’m worried so much about her. I feel everything will shut down soon and I will lose her. Can you recommend anything or anyone that can help. She lives with her husband and her 6 year old autistic son in Michigan. I’m willing to go anywhere for please help. Thanks

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@goingcrazy, I am so sorry you are going through this. My heart goes out to you and your family.

I don’t have any expertise to offer, except don’t give up! Continue being your daughter’s advocate, follow every lead, knock on every door, if fact knock the door clean down if you have to! There’s nothing wrong with being pushy and insistent if there’s something you think can be done, tested or tried.

I hope someone else on the forum can help you out.

Hang in there!

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My heart goes out to you. Your situation with your daughter would devastate any parent. Dear lady please take care of you so you can walk through whatever needs to happen. You need scheduled relaxation for you and everyone involved. I have no referral to offer but will keep you in mind. Please keep posting if only to relieve the pressure on you (a problem shared is cut in half). Hold you all in love and health.

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My friend has Gastroparesis too and eats but cannot gain weight . She’s 85 lbs for a long time . She is getting a feeding tube put right into her small intestines in July , for 4 months . She will still be able to eat solid food while having it in . Will supplement calories w/ putting ensure or whatever they give her to put in tube .
I don’t understand why they won’t allow her to get a feeding tube like this . Or one that goes into stomach.??? Go see many Dr’s … I’m sure one will allow this .
I have horrendous gastric issues, I’m terrible, 9 years now .
I have 6 diagnoses, 20 tests done , 6 Gastro Dr’s . Even Mayo Clinic Jacksonville. Still no one can help me . I’m so sorry she is going through this . Praying 🙏. Don’t give up !

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You've received some very tender words. I hope they help some, and I wish I could say something helpful. My heart goes out to you.
Praying for you and your daughter and wishing you the best.

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I happened to stumble on your topic and want to offer my sincerest sympathies. As well I thought I'd point out this book of whom the author successfully treats severely debilitating MS with foraged plant food. It's called The Forager's Guide to Wild Foods by Nicole Apelian. I don't claim to know anyone personally who's tried it to treat their MS and so approach with a healthy dose of scepticism but can't see any harm coming from trying it. I wish your daughter wellness in her future.

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Something sounds very wrong here. It sounds like you need a patients advocate who is used to dealing with hospitals and Bureaucracies. Do you live in or near a large GOOD hospital ? Preferably a teaching hospital associated with a University. If it were my daughter, I would try and get her admitted through the ER. Thoughts and prayers are fine, but you need real help. I am sure there is someone here smarter than me who has suggestions. Hopefully a DOCTOR. I am speaking from experience here. Good luck to you.

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I am very sorry and my heart aches for you and her .
Did you try Mayo Clinic they are known to be the best .
I have gastroparesis and I am taking Domperidona Molitium that comes from Brazil they don’t have here in US only New Zeland , here they have a very powerful med for his if I am not mistaken is Reglan works very fast but have lots of side effects.
I will add her to my prayer list that I have every morning .
Please let me know how I can help I have some Domperidona coming and more from Brazil so I could send some to her to try there is no side effects, my 95 years old mother takes everyday before lunch , my son and myself too because we all have the same problem.
Feel free to contact me.

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@lucismith

I am very sorry and my heart aches for you and her .
Did you try Mayo Clinic they are known to be the best .
I have gastroparesis and I am taking Domperidona Molitium that comes from Brazil they don’t have here in US only New Zeland , here they have a very powerful med for his if I am not mistaken is Reglan works very fast but have lots of side effects.
I will add her to my prayer list that I have every morning .
Please let me know how I can help I have some Domperidona coming and more from Brazil so I could send some to her to try there is no side effects, my 95 years old mother takes everyday before lunch , my son and myself too because we all have the same problem.
Feel free to contact me.

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@lucismith how do you get the medication from Brazil ? My friend has severe GP as well not MS though . Can you give the info on how to go about getting some to try ? Also why isn’t it sold here ( not approved by FDA )?? Thanks for info . Praying 🙏 this person’s daughter gets the help she needs soon !

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Hello, @goincrayz and welcome to Connect.

I'm glad that you are advocating for your daughter. As I just read your post I agree with Keith Moon, @jcarndt, that something sounds very wrong. You say that your daughter lives in Michigan. Has she been seen at The University of Michigan Hospital in Ann Arbor? There are also some good hospitals in Detroit and in Grand Rapids, Michigan.

Mayo Clinic is also a good option. If she would like an appointment at Mayo, here is the link to start the appointment process, https://www.mayoclinic.org/appointments,

Have you considered talking with a hospital social worker? They can be helpful in offering suggestions for working with the medical team at the hospital. Keep trying.

Will you keep posting as you go through this process?

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@rozy288

@lucismith how do you get the medication from Brazil ? My friend has severe GP as well not MS though . Can you give the info on how to go about getting some to try ? Also why isn’t it sold here ( not approved by FDA )?? Thanks for info . Praying 🙏 this person’s daughter gets the help she needs soon !

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Hi my GI doctor that told me about it and said I could by from New Zealand right way I though I could get from my country .
I have some I can send it , and my friend is about to go to Brazil so she always brings me enough supplies if you give me your address I can send some for you to try it or someone that needs it .
Reglan is the one we have here is very powerful I had a prescription once but due to many other health issues I have my GI doctor just didn’t want me to take it anymore, and then he mentioned Domperidona Molitium from NZ so when I went to Brazil I found it and since then I don’t go without .
Just let me know .

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For whatever reason that your docs will not pass or place a feeding tube there is always Total Parenteral Nutrition (TPN) through an IV. Her docs cannot just let her die without any interventions! The recommendation to seek care at a large institution is a very good idea and better a teaching facility.

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@lucismith

Hi my GI doctor that told me about it and said I could by from New Zealand right way I though I could get from my country .
I have some I can send it , and my friend is about to go to Brazil so she always brings me enough supplies if you give me your address I can send some for you to try it or someone that needs it .
Reglan is the one we have here is very powerful I had a prescription once but due to many other health issues I have my GI doctor just didn’t want me to take it anymore, and then he mentioned Domperidona Molitium from NZ so when I went to Brazil I found it and since then I don’t go without .
Just let me know .

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This is why it’s taken off market in USA and my friend already has heart issues but thanks anyway.

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