(Topic ID: 310689)

I need some info from the Drs here. Very serious

By zr11990

2 years ago


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  • 82 posts
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  • Latest reply 2 years ago by yancy
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There are 82 posts in this topic. You are on page 1 of 2.
#1 2 years ago

My precious 6 year old grand daughter just left the Drs office they are scheduling surgery for the end of the month. The diagnosed her with type IV-A choledochal cysts. They told my daughter they it is very serious and will be an issue for the child’s whole life. I am going to research it but I figure a doc can give me the lowdown.

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#2 2 years ago

A child shouldn't have to go through this. Your family will be in my thoughts and prayers.

LTG

#3 2 years ago
Quoted from zr11990:

My precious 6 year old grand daughter just left the Drs office they are scheduling surgery for the end of the month. The diagnosed her with type IV-A choledochal cysts. They told my daughter they it is very serious and will be an issue for the child’s whole life. I am going to research it but I figure a doc can give me the lowdown.

Wow, that's terrible. Sorry to hear about this diagnosis. The only advice I can offer is make sure to find a children's hospital that does a LOT of these specific surgeries since it's pretty dicey and if they don't do a lot of them (and have built up a LOT of specific experience with this particular surgery), things can go wrong. Fortunately, she got diagnosed early, so the outcomes can be good with successful surgical intervention(s).

#4 2 years ago

Well, part of the problem is that the child is on medicade. She is the result of my daughter not listening to her parents and hooking up with a POS loser like me. The dad left, doesnt pay child support and really has nothing to do with the child. So she can only go to docs that take medicade. It hasnt been a problem before but I do wish we could get a 2nd and 3rd opinion. If something happens to this child I dont think Ill want to be alive anymore.

#5 2 years ago
Quoted from PinMonk:

Wow, that's terrible. Sorry to hear about this diagnosis. The only advice I can offer is make sure to find a children's hospital that does a LOT of these specific surgeries since it's pretty dicey and if they don't do a lot of them (and have built up a LOT of specific experience with this particular surgery), things can go wrong. Fortunately, she got diagnosed early, so the outcomes can be good with successful surgical intervention(s).

what is it and what causes it?

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#6 2 years ago
Quoted from zr11990:

what is it and what causes it?

It's a bile duct disease. Pouches and bulges interrupt the flow of bile that helps digestion, so it can cause inflammation in the liver, jaundice, and in serious cases if untreated, death. Seems to be genetic. 4x as many girls are diagnosed as boys, and many more Asians than westerners. The one your granddaughter was diagnosed with is super-rare, especially in the west.

In the "normal" one, the thing hanging on the left side is the gall bladder and the thin lines are the bile ducts. In all the other ones, the bulges and pouches are abnormalities of the disease.

Even if you're not sure about getting the surgery covered, I would absolutely try to get her to a place that does these regularly like Boston Children's Hospital or UCSF to get a second opinion, and then work from there. All non-profit hospitals have a program they don't like to advertise where they will cover surgery costs completely if you are below a certain wage threshold. It's part of the requirement to keep their non-profit status.

You can use a list of specialists to try to locate one that does a lot of these surgeries:
https://findexpertmd.com/d/Choledochal_Cyst

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#7 2 years ago

The insurance will cover it but I’m concerned with the quality of the Drs.

#8 2 years ago

Thank you for taking your time to explain this.

#9 2 years ago
Quoted from zr11990:

The insurance will cover it but I’m concerned with the quality of the Drs.

Right. What I'm saying is if you can get to a hospital that does a lot of these with a top doctor, even if the Medicaid won't cover it at that hospital/Dr, if they're a non-profit and the parent(s) income is low enough (which it probably is if the child is covered by Medicaid) you can get the hospital to cover the cost of the treatment through the hospital's non-profit programs.

But I wouldn't worry about any of that now. I'd try to find a hospital that specializes in this disease, or at least manages a lot of surgeries for it and then get an appt with a specialist, then worry about options for the rest later.

#10 2 years ago

So, once she has surgery will she be OK or is this a reoccurring thing.

#11 2 years ago
Quoted from zr11990:

So, once she has surgery will she be OK or is this a reoccurring thing.

I'm not an expert, but it seems like if the surgery is successful, aside from monitoring for changes, that will be it. But that's definitely a question to ask the specialist who knows about the disease and management intimately.

#12 2 years ago

Talking to my daughter toning they said she may need a liver transplant or it could even be cancer. I had no idea. The child seems fine. I would rather kill myself than something happen to this baby.
Please, if you pray pray for this child.

#13 2 years ago

I don't but I will.

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#14 2 years ago
Quoted from zr11990:

Talking to my daughter toning they said she may need a liver transplant or it could even be cancer. I had no idea. The child seems fine. I would rather kill myself than something happen to this baby.
Please, if you pray pray for this child.

I'm a former general surgeon and experienced this during training several times. They are considered premalignant (precancerous). On hepatology and transplant service I took primary for this in a teen. They had medicaid and did just fine, they wanted for nothing.

You have nothing to worry about with respect to getting the best care. Texas has a great residency system (training physicians/surgeons) and any children's hospital will be capable of handling this.

Without medical school and residency training under your belt, I would not go down the rabbit hole of trying to understand why it is and what it is. Just be the loving grandpa and let the surgery team take care of it.

Speculation and perseveration over the details will make you feel worse and the kiddo will pick up on that. There is no point in guessing or what ifs until the pathology report comes back.

Thoughts and prayers are with you, your granddaughter, her parents and the surgery team.

#15 2 years ago

zr1,

You had kinds words for me in another thread when I lost my brother in law. It is obvious how much this little girl means to you.

Please take care of yourself, so you can be there for her. My thoughts and prayers are with you, as well as her...

#16 2 years ago

If you are truly feeling the weight of depression, call the NAMI HelpLine at 800-950-6264 or just log in their site to chat with someone.

I know all of pinside is here for you 24/7. If you need someone to talk to, please PM me and we can chat on the phone... not as a physician and patient but just two pinball enthusiasts.

#17 2 years ago

Hey Brother. Go to Texas Children's Hospital. They have given my children the best care in Houston. My 15-year-old nephew got a staph infection that just about killed him. Texas Childrens doctors saved his life. He was in the hospital 2-3 months. My brother-in-law didn't have insurance, but they still gave my nephew excellent care. Ronald McDonald House also helped them while he was in the hospital.

I am a man of prayer. Jesus has always given me peace in the toughest times I've ever had. I will definitely pray for her, you, and your family. We go to an awesome church on West Lake Houston Parkway in Atascocita across from Iguana Joe's. It's called Northeast Houston Baptist Church. The church isn't about money, power, or control. They are about ministering to the lost and hurting. We have prayer meetings every Tuesday night and 2 services on Sunday mornings. If you need a home church or just want to visit and get prayer for your granddaughter and family, you are most welcome. PM if you are interested in going or if you just want someone local to talk to. I'm happy to be here for you.

#18 2 years ago

Thanks to all. I am sad and scared for her of course. But I am not going to do anything stupid. Who wouldn’t put their own head on the block for their baby if it would help but in this case it won’t. As far as I’m concerned she is mine. I took my daughter to the Drs appointments, I saw the child wiggling around in the womb I helped feed her and change her and did everything the father should have done but didn’t because he didnt know what he had. Yes I love her like she is my own, probably more. But who cares about me, the only thing that is important is her getting through this. Thanks to all of you.

#19 2 years ago
Quoted from jazc4:

Hey Brother. Go to Texas Children's Hospital. They have given my children the best care in Houston. My 15-year-old nephew got a staph infection that just about killed him. Texas Childrens doctors saved his life. He was in the hospital 2-3 months. My brother-in-law didn't have insurance, but they still gave my nephew excellent care. Ronald McDonald House also helped them while he was in the hospital.
I am a man of prayer. Jesus has always given me peace in the toughest times I've ever had. I will definitely pray for her, you, and your family. We go to an awesome church on West Lake Houston Parkway in Atascocita across from Iguana Joe's. It's called Northeast Houston Baptist Church. The church isn't about money, power, or control. They are about ministering to the lost and hurting. We have prayer meetings every Tuesday night and 2 services on Sunday mornings. If you need a home church or just want to visit and get prayer for your granddaughter and family, you are most welcome. PM if you are interested in going or if you just want someone local to talk to. I'm happy to be here for you.

I just might take you up on that. We are looking for a better church home.
I will come and I would like to meet you. I would very much welcome a new friend.

#20 2 years ago
Quoted from zr11990:

I just might take you up on that. We are looking for a better church home.
I will come and I would like to meet you. I would very much welcome a new friend.

You definitely have a friend in me. I look forward to meeting you and your family.

#21 2 years ago

Hey Ace, is your Pastor Nathan Leno? We were actually going Forest Cove Which was run by his father a long time ago. He helped start Nathan’s church. Soon after Forest Cove turned to First Baptist and we left.

#22 2 years ago

Would St Judes be an option? From their advertising it sounds as though families aren’t charged for care there, so the costs would just be the trip and maybe a hotel?

#23 2 years ago

According to pinhead, she will be well taken care of with the Medicare insurance. The worry is how serious this malady is. We could lose her that is how serious this is.

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#24 2 years ago

To all concerned, the tests came back today, finally and we were told that it is not cancerous they just have to remove the cysts. Thank God. I know we are not out of the woods yet but this is a big relief. For those who prayed please keep on. A big thank you to all for your support in this. I will not forget it. I will let you k ow what happens next.

#25 2 years ago

Praying for you and your granddaughter brother!

#26 2 years ago

That is great news, very happy for your grandaughter, you and your family!

#27 2 years ago

Thoughts and prayers will continue for a quick and complete recovery!!

#28 2 years ago

Just keeping you informed. The surgery has been set for 3/15. If everything goes well she will be in the hospital for a week.

#29 2 years ago
Quoted from zr11990:

Just keeping you informed. The surgery has been set for 3/15. If everything goes well she will be in the hospital for a week.

She's young and strong! She'll crush this.

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#30 2 years ago

She should but you know me well enough to know how passionate I am a out some things and when it comes to my family, they are everything to me, especially this girl

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#31 2 years ago

Great news and best wishes going forward. Shes lucky to have someone like you looking out for her.

2 weeks later
#32 2 years ago

It’s time. Josie goes into the hospital Monday morning at 5. I’ll keep everyone informed. My daughter was told they the Dr doing the surgery was the best in the field.

#33 2 years ago

Have faith in the science. The hospital saved my daughters life at birth. If I lived 100 years ago both her and my wife would have probably passed. My good friend went through a crazy birth experience with his daughter too. It’s amazing what these Dr’s can do.

I’m sending good vibes your way.

#34 2 years ago

My thoughts with you and Josie as well. I echo @luckydogg420, it is amazing the leaps we have made in medicine almost daily and that should give some comfort going into tomorrow.

#35 2 years ago

She is and will be in my Rosary intentions. All will be well, I'm sure.

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#36 2 years ago

She is out of surgery and they told her it went well. They didn’t get all the polyps because she would need a transplant so she will need to keep a eye on it but as for now she is out of surgery and everything is good.

#37 2 years ago

Question for the docs. They removed most of the cysts and repaired the bile ducts and the gall bladder but they left some of the cysts in the liver saying that if they took more they would have to do a liver transplant. What does this mean and does it foresee a transplant in the future?

#38 2 years ago

Praise the Lord for the good report. I'll shift prayer to recovery and dissolving of the remaining polyps. Glad your Little Lady made through this step well!!

#39 2 years ago

They said the cyst was the size of a softball.

#40 2 years ago

So grateful they could remove that. I'll also be praying for peace for all of you. If I can help out with anything let me know.

#41 2 years ago

Thank you sir. By the way, it was a pleasure to meet you the other day. Sorry I haven’t been in touch, things have been a bit hectic. Did you do the deal on the office?

#42 2 years ago

So we are in trouble. She started bleeding internally and they took her back to surgery

#43 2 years ago

your in my thought and prayers

#44 2 years ago

As a father of a four-year-old, my stomach dropped just reading that. Hard to imagine what you're going through. But I'm betting on modern medicine. Hang in there.

#45 2 years ago

They said it was her pancreas that was bleeding. They said they were going to turn it off till it healed and she would be temporarily diabetic? Never heard of that. I’m getting really uneasy about all this. To make it worse we can’t get in to see hear as these peoples idiotic Covid protocol is asinine.

#46 2 years ago
Quoted from zr11990:

They said it was her pancreas that was bleeding. They said they were going to turn it off till it healed and she would be temporarily diabetic? Never heard of that. I’m getting really uneasy about all this. To make it worse we can’t get in to see hear as these peoples idiotic Covid protocol is asinine.

I didn't know they could turn the pancreas off temporarily. But if they have, she's diabetic when it's off because the pancreas is what makes insulin, so that cause/effect makes sense.

#47 2 years ago

I hope it’s just temporary. That is what they told her.

#48 2 years ago

So they shut down her pancreas after the bleed, now they are shutting down her digestive tract and inserting a feeding tube. What does this mean? This doesn’t look good.

#49 2 years ago

You can drive yourself crazy trying to understand all of the things going on and the possible implications. If you are like me, you can spend hours dwelling on all of the possibilities and worry yourself sick!

Instead, let me give you a well known verse that I find to be helpful in times like these.

Proverbs 3:5-8:
Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He will direct your paths. Do not be wise in your own eyes; fear God and flee from evil. This will be health to your body and nourishment to your bones.

I hope this gives you some comfort. I will be praying for you, your granddaughter and your family.

#50 2 years ago
Quoted from sbmania:

You can drive yourself crazy trying to understand all of the things going on and the possible implications. If you are like me, you can spend hours dwelling on all of the possibilities and worry yourself sick!
Instead, let me give you a well known verse that I find to be helpful in times like these.
Proverbs 3:5-8:
Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He will direct your paths. Do not be wise in your own eyes; fear God and flee from evil. This will be health to your body and nourishment to your bones.
I hope this gives you some comfort. I will be praying for you, your granddaughter and your family.

I wholeheartedly endorse this advice. I’ve been brought out of the rabbit hole of worry more than once by recalling the first two verses in that passage. (The rest is great too!) Even better if you can put it to memory so you can recall it when you start to get into that hole.

I just saw this thread and am praying for your granddaughter and wisdom for the docs.

There are 82 posts in this topic. You are on page 1 of 2.

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