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07-23-2010, 10:25 PM   #1
gypsigirl28
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Frustrated

Well Madasin still has two weeks to go before her next round of procedures and with no meds. Her bellyaches at increasing, along with her being blah and irritable with everyone and everything. Her intake of fluids has increased so much. Yesterday she drank 32 oz in less then 45 minutes. We just could not believe it.
How do you tell a 2 year old that she can not have the meds that make her feel better. She is constantly asking for meds to make it go away. It is so darn heartbreaking. The only meds we can give her is mylcon for bellyaches and that does not even work anymore.
Anyone have any suggestions?

thanks
Rosemary
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Rosemary
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Madasin was diagnosed at age 22 months old
with UC
07-24-2010, 12:20 AM   #2
PeninsulaLil
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Poor sweetie! The best suggestion I have is to contact doctor/hospital and get the procedures moved up. It seems unconscionable to me to force a baby to endure pain due to some scheduling sequence. I have found that if I bring the problem to the doctor/scheduler and ask for their help in finding a solution (or insist if necessary), it's amazing what can happen.

Good luck and let us know how things go.

Lilly
07-24-2010, 12:39 AM   #3
DustyKat
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Hi Rosemary,

That's just the problem, a 2 year old doesn't understand but even with an older child I don't think it's acceptable to see them suffering like this. I agree with Lilly, perhaps the time has come to contact your GI and tell him/her what is going on and you aren't prepared to let it go on for another 2 weeks.

Keep us posted with how things go. Sending hugs to you and Madasin

You are in my thoughts,
Dusty
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07-24-2010, 01:16 AM   #4
gypsigirl28
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We have called the GI unfortunitly he is not good at returning our calls, it takes him two to three weeks to call us back and that is calling and leaving messages everyday for him. It has been this way from the beginning and not getting better as far as that goes. Unfortunitly getting another GI would mean traveling even farther then the 1 1/2 hours we already do to the GI. The only other Pediatric GI is in Boston or New York City and they are both five plus hours from us. We are trying to come up with the money so that we can do just that, it just is not easy to do. We spend so much on medicine that there is not a whole lot let.
Thank you Lilly and Dusty for your kindness, and Dusty I just gave madasin a hug from you. She just got up for more juice and a diaper change, It is 2:10 in the am here now and she is up watching TV. That is the norm though, she only sleeps two hours a night on most night,
07-24-2010, 02:12 AM   #5
DustyKat
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Oh Rosemary, I am so sorry. I am unfamiliar with the health system there so I can't offer any advice regarding that. Perhaps someone will be along that can advise if you are able to access any programs that cover children with chronic illness. Do you have a program in the US that gives financial assistance to people that are required to travel long distances to consult a specialist?

I'm sorry I can't be of more help. Again, please keep us up to date with how Madasin is doing. I hope more than anything you can get the help you need.

Sending healing (((THOUGHTS))) and (((HUGS))).

Take care,
Dusty
07-24-2010, 02:45 AM   #6
MisB
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Hi Rosemary and first of all I will tell you that you are on top of my prayer list. I know the pain and frustration I go through at my age and having to care for such a young child with it is beyond anything I can even imagine. I did some quick research and I don't know exactly where you live, but in someones request for the best place for Crohn's treatment, this came up on NYC. I know transportation can be an issue, but if it's possible and they can get Madasin some relief, it might be worth checking into. Some people have a hard time with internet research, so if it would help you for me to look up more info, just let me know. I'll do what I can. I hope you are able to get things resolved soon and that Madasin can get some relief. I'm wishing you the very best and please keep us posted. Take care.

Response:
> While Mayo is excellent, the best centers for Crohn’s are Cleveland Clinic > and Mt. Sinai in NYC
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07-24-2010, 05:38 AM   #7
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Hi Rosemary, do you have a pediatrician there locally? I'm not understanding why they can't do something for her pain. Does the GI think it will skew the results of the scopes?
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07-24-2010, 06:13 AM   #8
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Hope they give Madasin something to alleviate her pain. Bless her little heart. A great big hug from me xx
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07-24-2010, 08:35 AM   #9
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Rosemary - what part of NY are you in? I am up near Albany - and use Albany Med - they handle pediatric cases there - also when I lived in Ct and was first diagnosed, my Mom took me to Yale New Haven Hospital...so, there are choices.....

If you want to send me a private message, I can get you contact info for Albany Med - they have been great there - if I have a problem, I get my Dr or a nurse asap - same day, AND they fit in appointments FAST if I'm not feeling well - took me 2 days last time.....

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07-24-2010, 09:03 AM   #10
gypsigirl28
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good day to all, thank you to all for your feedback.
Yes we have a peds doctor here and all they say is contact GI doc, "we dont deal with uc enough here to handle it".
As for going to Albany Med, You are right they are great there at least some docs, A ped throat specialist saved madasins life when she was only 5 months old cause no one else would listen to us when we told them she would stop breathing and told us it was in our heads. Heck we even have that in writing in her medical chart. But in the end she had a "golf ball size sis in her throat blocking 75 percent of her airway", doc told us she would have been dead in maybe two weeks if we had not pursued to get her looked at. it wasnt until we turned local peds and VT into medical board that we got sent to albany for third opinion. (sad that it takes all that right)
But when she got sick last year we started in Albany med and they are the ones that sent her home saying she was fine. That is when we went to Burlington VT.
We live in Plattsburgh NY, which is 2 1/2 hours north of albany and 3/4 hours south of canada boarder.
Unfortunitly we dont have any programs that I know of to get help for travel. we are trying to set up a craft fair of items I have crocheted along with a web site of them items. I also have some of these items on my facebook to let people see them. We are looking into all options and are determined to go where ever we have to in order to get her the medical care she needs. We might go broke but I dont care as I am sure all of you would do the same thing. I will keep everyone up to date.
Thanks again you are all so very kind, I am so glad I found this site, My daughter is going to join as well cause I told her how nice everyone is and the support is great.
07-24-2010, 03:03 PM   #11
Dexky
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Can't wait to meet your daughter Rosemary. Tell her to post here and in Your Story. I hope you guys get Madasin some relief soon. No way a child should have to suffer like that. They get to thinking pain is normal. It is heart breaking to say the least.
07-24-2010, 08:23 PM   #12
Lisa
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Rosemary - not sure who you dealt with at Albany Med - but if you want to try there again - see if you can get Dr Bartholomew.....she is my GI and I really like her.....if you end up coming back down here, let me know - I can look for cheap places to stay to help out - AMC also has a hotel right across the street now attached to the parking garage!....LOTS of building/expanding going on.

I don't go back for another couple of weeks, or I'd ask for a reference while I'm there.....maybe if you can go back there you might get someone else??
07-24-2010, 09:54 PM   #13
gypsigirl28
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Pasobuff- Does your doctor do Pediatrics as well as adults. Most of them dont that is why I am asking. I will look her up online and see if it tells me if you dont know. We are up for anything at this point and will check it out. Yes we know about the hotel attached to hospital, but it is very expensive to stay there. We have stayed in albany many times while Madasin was there, the last few times we were there we stayed at the Ronald McDonald House there, It is an awesome place and they are really nice there as well.
Thank you for the information I am going to go now and research her.
07-25-2010, 08:24 PM   #14
gypsigirl28
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Just to update, maddie is not feeling any better today, would not eat anything and just laid around watching Max and Ruby lol. of course she would get a cold on top of everything else. You have to love the poor immune system that comes with UC and any of the similar diseases.
They wont move things any closer then August 3 because they want her to be off all meds for that long before doing procedures again. I guess you have to be an MD to understand how they can let a child suffer for that long. That is probably why I am not an MD could not have the heart to do that.
But on a Positive note we are all taking turns comforting her as best we can, We will get her through this because that is what family is for.
I want to Make a special Thanks to this forum for all your support, Joining this forum is indeed the best move I have made in a long long time. Thanks you again for all the support
07-25-2010, 09:16 PM   #15
DustyKat
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Oh Rosemary, how sad and upsetting it must be for you.

Madasin is a very lucky little girl to have a family and Grandma like you to help and comfort her through this difficult time. You are all in my thoughts and prayers.

Sending MEGA HUGS your way..............



Take care,
Dusty
07-26-2010, 09:56 PM   #16
Dexky
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She's beautiful Gypsi!! Hope she's having a better day today!!
07-26-2010, 10:17 PM   #17
gypsigirl28
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Thanks Dexky, I wish I could tell you that was the case however today is worse then yesterday. She wont even eat anything today. The past week she has only ate a bite here and there.... That is unusual for her cause she loves to eat...
My daughter joined the forum today as well she is awaiting approval.. her user name is madasins mommy
07-26-2010, 10:30 PM   #18
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My daughter joined the forum today as well she is awaiting approval.. her user name is madasins mommy
hi Rosemary, just to let you know that your daughter is now fully registered.


i am so upset to hear of your little grand-daughter's suffering - it seems inhuman to with-hold the meds that could help her pain, but i guess there is some logic behind this decision. i truly hope that August 3rd comes around quickly for her, and that it becomes the turning point to getting some relief.

poor little chick - please tell her there's a whole bunch of people all over the world who are thinking of her and sending hugs.
07-26-2010, 10:34 PM   #19
gypsigirl28
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Thanks dingbat for the warm thoughts and for letting me know madasins mommy is registered. I will let her know so she may begin to thread, chat and feel just as welcome here as i have. Thank you again
07-26-2010, 10:35 PM   #20
Rob
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Sorry to hear the probs you are having to deal with
it sux having cd at my age so at 2 would be rediculous an cruel (an ppl say there is a compassionate god?? - yet they allow stuff like this??)
anyway

over hear in Australia we hav a thing called Angel Flight, it's to assist in children with a problem that aren't near to the clinics etc they need
they are flown to an from appointments to help the families out
from what I know most flights are donated by the pilots themselves etc

maybe you hav somethin similar there an can get better access to better doctors etc

best of luck
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07-26-2010, 10:39 PM   #21
gypsigirl28
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Thanks Rob,
I have to tell you that from everything I hear Australia is an amzing place to live.. We could only wish for something like that hear in the US. i did a fund raiser for madasins benefit in March and want to hear my total dollars made.... $16.00 I could not believe my luck..lol
But that is okay we will make due either way..
07-27-2010, 05:25 AM   #22
Dexky
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Thanks Rob,
I have to tell you that from everything I hear Australia is an amzing place to live.. We could only wish for something like that hear in the US. i did a fund raiser for madasins benefit in March and want to hear my total dollars made.... $16.00 I could not believe my luck..lol
But that is okay we will make due either way..
Hi Rosemary, do you live in a small community that you have been a part of for many years or are you a transplant? I'm only asking because I know for a fact that if I needed to I could go to my small hometown and have a fundraiser for EJ and the support would be incredible. We are fortunate though to be near Vanderbilt Children's hospital and that I have great benefits with UPS. I hope things start to get better for Madasin soon!!
07-27-2010, 05:32 PM   #23
gypsigirl28
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Hi Dexky,
yes our town is small and I was born and raised in upstate NY, I currently live in Plattsburgh, but was raised in peru ny whichis only 10 mins from here. I have moved away a few times in my adult life but end up back here. It is hard to do fund raising because people dont trust others. there was an incident not long ago that someone did fund raising for there sick child and come to find out their child was not sick. Unfortunitly for others that this person did that. I am going to check into a few ideas I have and I will let you know. thanks
07-27-2010, 08:21 PM   #24
Dexky
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People don't get to know their neighbors like they used to. It's sad!! Everyone thinks that someone else will do what needs to be done.
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