Madasin's Updates

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THANK YOU MIS B
Well I sent the Dr. in NYC the information he requested and he got back to me very quickly saying that HE WANTS TO SEE MY BEAUTIFUL PRINCESS IN THE NEAR FUTURE. he would like to review her pathology slides to make a game plan first. he seems concerned and like a great doctor. thank you thank you thank you bev!!! we are very excited and praying this is a new beginning for her!!!!
 
:mbh:

Oh wow, that's fabulous news! I'm so happy for all of you. Keep us posted on how you go.

Sending Maddie MEGA HUGS:

:hug::hug::hug::hug::hug::hug:

Take care all of you,
Dusty
 
WOW WOW Kelley!

Fan bloody tastic!!!!

This defo will be a new beginning for your little princess!
xxxx
 
We were so surprised that his responses have been so quick, it is hard to believe it is moving so fast. We are so greatfull no words can say how we feel.......
It has been a very long year struggling to get help the help she needs....
 
That's great Kelley and Rosemary. We're all ready for some good news for Maddy:). Please everyone give Beverly your support right now. She's really down after hearing from the surgery consult!!
 
wonderful news about the doctor - i'll be keeping Madasin in my thoughts and hoping he can really make a positive difference to her life.

((hugs)) for Bev... if you log in and read this hun, chin up - you'll get there - and we're right by your side. xxx
 
Heading to VT for another Procedure

Well we will be leaving in the am to head back across the lake for another round of procedures with miss Madasin. She is scheduled for colonoscopy and endoscopy Tuesday. This will be the fourth endoscopy and third colonoscopy that she has had since she got sick. hopefully they will have a no shit answer this time around. At least once this is completed she will be able to go back on her meds and have some relief. We decided to go forward with these procedures so that she can go back on meds while we wait to hear from NYC. We did not want her to continue to suffer without her meds not knowing how long it is going to take to get her to NYC.
We will be mailing out her medical records and UVM will be mailing out the slides to NYC Monday. So once these test are done we will have these slides sent to NYC as well
Once the testing is completed in NYC and he reviews her records I am sure we will know more about what he wants to do and when he wants to see her.

We (kelley and I) send out best to everyone here on the forum (our wonderful extended family). :hug:
 
Please have safe travels and I'm glad more than one place will be looking at the test results. It's funny how 10 people can look at the same thing with most of them coming up with the same results, but then one person sees something different and everything changes. I will be praying for safe trip and that little Maddie will be getting back on her meds really soon. Thanks for keeping us posted. sending :hug: and :kiss: to your familyl.
 
Hi Guys, :bigwave:

Wishing you all the luck in the world for the upcoming tests and I so hope you get the answers you need!

:goodluck::goodluck::goodluck:

It's good to know Maddie will be back on the meds and getting some relief, poor baby.

Please give her hugs and kisses for me - :hug::kiss::hug::kiss::hug::kiss::hug:

Take care guys,
Dusty
 
Good Luck Maddie, Kelley & Rosemary!
we'll be keeping everything crossed!
xxxxx
 
we have arrived in VT. we are at the hotel now. thank you all for your warm thoughts and maddie thanks you all for lots of hugs and kisses.
 
No Dexky unfortunitly she is not feeling any better, hopefully they will let her go back on her meds after these procedures so she will at least not be in so much pain.
 
My husband's co-worker shared a christian paper with him yesterday and after thumbing through it quickly, it landed on this particular article. It hit so close to our situation and I felt it might be something for you to think about as well. Just know that we are all in this together and months from now we will be sending emails of joyous occasions like birthday parties, family gatherings, and holidays vs. hospitals, doctors and more tests. Keep the faith and may God be with you all during these next few days. Your friend, Beverly



There are times we may wonder why The Lord would allow some of His children, who are obviously physically or mentally challenged, to be brought into the world. This could also be true of those who become physically or mentally challenged at some point during their lifetime. Why would He allow them to suffer through a life which is so far removed from normal and be so restrictive...And, perhaps even more puzzling, why would He allow these children to be such a burden to their families and loved ones. Even to the point where they require constant care throughout their lifetime, which places unbelievable demands on their families and loved ones. One could call these God's tests, or trials, for those who are directly involved. It is extremely important how the people who are directly involved in these situations respond to such challenges. For we shall be judged on how we respond-not just once but throughout our lives-to such trials. There is no doubt that it takes a special person to carry such a burden upon their shoulders. And, you might say, they are the fortunate ones. For their mission in life is clear...They are to love and care for these who are challenged. Perhaps, we will look with a different view now upon those who are challenged and those who care for them. They are not to be pitied, but to be admired... As well as understood. For they are responding as God would have them respond to His challenges.
...
May God bless you
and your loved ones.

-Anonymous.

As this was an anonymous post, I am assuming we can use it, postsed anonymously. I wish the writer would come forward for some recognition, as I feel it is a very heart-felt piece of journalism. If you wish to share as another thread, that's up to you, but I personally wanted to send it to 3 of my new favorite ladies. I'll pray that God is able to give Maddie some relief soon. Good Nite.
 
Good morning ladies, I hope you got some rest!! One more day and night to wait for relief for Maddy. Please keep us posted. Just thinking about you all, especially Maddy.
 
Thank you bev for the post it brought tears to my eyes. it was beautiful.
dexky....rest?? haha no not much of that. maddie doesnt sleep but 2-3 hours a night and at the hotel she isnt in her crib...lol but we are used to that.
we start her prep today...she isnt happy shes been up for hours wanting to eat...but its popsicles and jello for her today! she wants to go swimming in the pool so im going to push prep starting back 20 minutes so she can swim first. she is holding up very well considering she knows what is going to happen. she is a trooper!!!
thank you all so much for your support
 
Scared...Frusterated and Nervous

oh the joys of procedure day, those leading to it and those that follow. I am sick to my stomach scared about madasin going back in the OR tomorrow. I should be used to it by now by somes standards but that and your baby lying lifeless in your arms when they inject propafol in her IV just isnt something I will ever get used to. Not to mention...she starts prep today well is suppose to....instead of drinking the miralax she has decided a nap sounds like a much better idea. (she does it every day she preps). she is starving...and has no energy. The first thing she said to me this morning was morning mommy I have juice? and then to the fridge (in hotel rm) she went, opened it and said I eat. Her "lovely" nurse at her "lovely" doctors off was suppose to have her going in for prep at 6 and in OR at 7:30am but informed me this morning that she doesnt go in until 9:45. that doesnt sound like much difference in time. but it is a lifetime when you have a 2 yr old who has normally eaten 3 times and drank 32-40 ounces of liquid by that time. She knows what is going on so she is scared. she will not let me leave her side. it seems like shes away from me for 5, 10 minutes tops before shes yelling mommy hold me.
The days leading to a procedure are heartbreaking. I am not looking forward to those that follow, anxiously awaiting the test results.
thanks everyone for letting me vent on here! :grumpy::grumpy:
 
Aw Kelley
I really feel for you hun, it's horrible when your baby is sick and ready for an op, I was the same with my daughter many years ago!
Not long now, you've come so far, only one more day! You're doing so well and you are very strong!
hope you all have a restful peaceful night!
big hug your way
xxxxxxxx
 
oh the joys of procedure day, those leading to it and those that follow. I am sick to my stomach scared about madasin going back in the OR tomorrow. I should be used to it by now by somes standards but that and your baby lying lifeless in your arms when they inject propafol in her IV just isnt something I will ever get used to. Not to mention...she starts prep today well is suppose to....instead of drinking the miralax she has decided a nap sounds like a much better idea. (she does it every day she preps). she is starving...and has no energy. The first thing she said to me this morning was morning mommy I have juice? and then to the fridge (in hotel rm) she went, opened it and said I eat. Her "lovely" nurse at her "lovely" doctors off was suppose to have her going in for prep at 6 and in OR at 7:30am but informed me this morning that she doesnt go in until 9:45. that doesnt sound like much difference in time. but it is a lifetime when you have a 2 yr old who has normally eaten 3 times and drank 32-40 ounces of liquid by that time. She knows what is going on so she is scared. she will not let me leave her side. it seems like shes away from me for 5, 10 minutes tops before shes yelling mommy hold me.
The days leading to a procedure are heartbreaking. I am not looking forward to those that follow, anxiously awaiting the test results.
thanks everyone for letting me vent on here! :grumpy::grumpy:
OMG I know how you feel my daughter is 24 and has to go threw a lot of op's because of crohn's. I too have it. Just stay stong for her.

Thinking of you xx sue xx
 
Kelley (hun) you could not have said it any better.... the whole situation is very stressful and longing to just get it over with. Once tomorrow is done we have about 2 weeks of waiting, which comes the itching and hives. But we wold do anything for our princess.
 
Hey you three, it's 11 pm there now so I hope you are resting as well as possible but I want you to know when you get started tomorrow, we are all there with you and thinking of Maddy. Surely after tomorrow, they will give her something for the pain.

You're an amazing mother Kelley and grandmother Rosemary. Maddy is lucky to have you two in her corner. She's gonna get along fine after all this. You'll see!!
 
I didn't see this and just posted another thread for support for the three of you. My prayers and thoughts are with you and wishing you the very best, not just for tomorrow, but for the results and followup in NYC. Remember, you are not alone and I know things get hectic, but keep us posted when you can. Your friend, Beverly
 
Just wanted to let you guys know that I am keeping Maddy in prayers and wishing the best for her!
 
Hey guys,

Thinking about you all and hoping and praying mor than anything that all goes well and you find the answers you seek. I know exactly the fear, dread and feeling of helplessness that you are experiencing right now. Sending you luck and hugs galore...............

:goodluck::goodluck::goodluck::goodluck::goodluck::goodluck:


:hug::hug::hug::hug::hug::hug::hug:

Take care, :kiss:
Dusty
 
i know how you're feeling.. wishing you could take her place and go through it all for her, right?

it's the price we pay when we love someone - when they hurt, we hurt too... but that love is also the one thing that over-rides everything else, and she has an amazing family by her side. i'm sure she will be ok - i know i have had so many scares with my kids, particularly my youngest - turning blue after swallowing a drawing pin, emergency surgery to remove her appendix, being told she had meningitis (which proved to be a misdiagnosis)... kids take you through the most unbelievable hoops where time stands still and you don't know how you're going to get through the next minute... but i am absolutely sure little Madasin will be fine, and she'll soon be back with you, smiling, hungry and hopefully on her road to recovery.
 
NEW UPDATE ON MADASIN 4:25pm

Hi everyone just wanted to update you on progress once we got back to hotel.

Miss madasin is running high fever, and has had two pure bloody stools. we are trying to get fever to break as we speak and waiting for damn doctors office to call us back. kelley called them at an hour ago.

kelley is devastated cause maddie is mad at her for making her go to docs today lol but once she gets older she will understand why she did it. Thats what I tell kelley
 
Hope she bounces back...if you don't hear back from the Dr office SOON - I'd be heading over to the ER with her.....

How high is her fever?
 
i agree - don't waste time waiting for doctors to call back or even house visit - if she were my little girl, i'd be on my way to ER right now..... it's probably just simply a reaction to what she's been through today, but it sounds like you all need reassurance right now... she might need some meds to get that fever down too.
 
ok well maddies fever is now 101.4 so better....her lovely dr calledback to say he will not see her take her to pediatrician in plattsburgh. i called them and they said its probably a reaction to anesthsia and if it dont drop or goes any higher bring to to them or ER.
oh and she is not mad at mommy no more for making her go. she gave me a kiss and said i forgive you when i told her i only did it to try to make her better!
 
lol Well glad to hear she is over her anger....did the doctor say anything about the bloody diarrhea? Does he think it is just from the biopsies? Still...2 is kind of alot....
 
So very sorry that you all are having to go through this. Please do not let the docs brush you off, advocate for her as well as you are able. IMO, anything short of putting a doc's head through the wall is fair game if it's your baby that is suffering. Sending hugs to you all, hope she is better real soon.
 
jerman- trust me today putting a docs head through the wall doesnt sound like a half bad idea. as a matter of fact its probably the best one ive thought of today! you are absolutly correct it is all worth it when its your baby!
 
jerman- trust me today putting a docs head through the wall doesnt sound like a half bad idea. as a matter of fact its probably the best one ive thought of today! you are absolutly correct it is all worth it when its your baby!

Hi Madasins Mommy, I hope your little angel is feeling better this morning. I thought of you guys quite a bit last night and feel as though my advice should have been a bit better thought out. For me to encourage you to advocate and stand strong for Madasin is good advice, however i went wrong in making the statement of "anything short of putting a docs head through the wall" was inappropriate for me to say. As much as I have wanted to do such a thing more than a few times, it is not ok for me to encourage violence (although my intentions were good). I responded very emotionally as I really feel for you all and what you are going through. I apologize if my remark added to your stress last night, my approach should have been more supportive than to say something that in retrospect likely added to your frustrations and feelings of being out of control with the very difficult situation you are all facing. :sorry:
 
Miss Madasin

Hi everyone,
we came home first thing this morning and took miss maddie to her pediatrican here in town. They seem to think it was caused by the amount for anithesia they gave her this time. Usually they give general and this time they put her her deep sedation.

If fever continues or has any more blood in stool we have to bring her back.
After a very long night and busy morning we got the fever to break. Hopefully it stays gone. She is still not feeling very good but at least she is not burning up to go along with it.

Thank you to everyone for your wishes and thoughts regarding madasin. yesterday was pretty scary with the fever hitting a high of 103.8.

now we get to wait until the results come back to find out what is going on. they said not to give her back her meds until that time. which for her really sucks.....
 
I guess I understand their reluctance about the meds but what sucks for Maddy is eating you all up as well. I hope they can rush the results or something so that Maddy, as well as you, can get some relief.
 
It's good to hear that the fever has broken, I do hope it stays that way. How long is it until you get the results?

Take care all, :hug::hug::hug::hug:
Dusty
 
Todays update is Madasin still running low grade fever and still will not eat anything. We have tried everything to get her to eat and she just is not interested at all. She will take a bite and that is about it. We called the docs again and they said if she is not feeling better tomorrow we have to bring her back in.
Just wanted to let everyone know how she was doing today.

Hugs to all
 
thanks for keeping us updated, Rosemary - i know everyone here is thinking of little Madasin and wondering how she's doing...

i hope this is just a temporary set back, and that she'll soon be bounding around again, back to her old self. please send her my love :)

if it's ok with you guys, i might merge all the update threads on Madasin later on - so people know to only click into one thread to see the latest posts on her progress.
 
hi dingbat,
thanks and yes by all means merge them together, being new to the forum we did not know how or what to do with them..
 
each day at a time xx

Hi lets hope it will all be worth it in the end for madasin. Just one day at a time and hope she shows a little improvement everyday xx love & kisses Sue xx :hug::hug::hug:
 
to save confusion, i've merged all the update threads on little Madasin into here, so we know to just come in here to check how she's doing, and to send our good wishes and support...
 
Thank You Dingbat for merging them all together, we will just post on this thread from now on so everyone will know where to go.
Nothing has changed tonight, she is still running her fever and still wont eat but a bite here and there. I even made her favorite food in hopes it would work. But tomorrow is another day and we are hopefull she will turn things around.

We are hoping this doctor in NYC can help and will have some compasion for her unlike the GI she has now

Jerman- please dont feel bad and you did not encourage us to do anything that we did not think about ourselfs. trust me. You did not offend us or add any stress to us, when we read your post we laughed because that is exactly how we felt about it. So dont worry about that and just continue being yourself. :ysmile:

MisB says to say HI she was locked out of forum again today but is hoping to get back on tonight at some point. She was not feeling to well today.
 
Thanks so much for keeping us updated.

I think about Maddie, Mum and Grandma all the time, god knows it's hard enough with an eighteen year old that's in remission!

Sending healing (((HUGS))) and (((THOUGHTS))) your way:

:hug::hug::hug::hug::hug::hug::hug::hug:


:hang:
Dusty
 
Sorry to hear there hasn't been any improvements. Hugs to you, Maddy and her mother. This must be such a frustrating time for you all with her being sick and just wanting to get her better somehow. Hopefully the doctor in NYC can help you get there! I'll be keeping Madasin in my prayers hoping she'll get better and eat. Good luck to you!
 
hi dexky, nothing much has changed. she is still running low grade fever, today she ate a scammbled egg thats it and her stools have gone back to runny once again. It is so frustrating watching her suffer.
they wont give her back meds until results come back, which he said would be five days, which inturn means he will calls us in two to three weeks, like he always does. Even if we call him he dont call back so we just wait.

In the mean time she is miserable, and so are we. Everytime we are waiting for results I break out in the hives and itch like a mad women. The stress is enough to really drive you nuts. Kelley and I keep each other going by being there for each other and vent, and bounce ideas off one an another.. We try to keep maddie busy with her two brothers and doing things, but it gets hard because she dont want to play, she just wants to lay down and watch tv most of the time when she is not feeling good.
We have officially lost our minds most of the time, lol and it is laugh at even the stupidest thing or you will cry and never stop.
At times we wish we had this for the doc :voodoo:
 
Rosemary, i would suggest that you go to any lengths possible to get the results given to you before the usual 2 to3 weeks. it's not right to leave a 2yr old not eating, with no meds, for this length of time. if your doctor is aware of how bad things are for her right now, and is willing to leave her like that until he's 'got time' to contact you, then i actually consider this neglect of his patient.

a little 'un like Madasin could well end up malnourished & dehydrated, not to mention her symptoms could be exacerbated without any meds - to me this is really wrong.

i would ring the hospital department every single day, twice a day if necessary, until you get an answer and some direction as to getting help for her. if that particular doctor won't reply, or get a message passed to you, contact another doctor in that hospital.. or ring the complaints department.. or appeal to your gp/practice nurse.

a lot of us have been victims of neglect and misdiagnosis from doctors, and it's bad enough having this when you're an adult, much much worse when it's a toddler.

sorry - i just read that back, and it sounds like i'm telling you what to do - don't mean to, but i really think she shouldn't have to wait all that time, in the state she is right now.
 
Hi dingbat,
I am not taking this as you are telling us what to do. Everything you are suggesting we do is everything we do already. We call his office once or twice a day, and all they will do is let us leave him a message, His nurse is just as bad when we try to talk to her. We already have checked into the complaints department and have the paperwork to forward to VT medical board. Which we have done in the past when she was an infant of course it was a different doctor then. When she would have died within two weeks time because they would not listen to us and kept telling us she was fine it was in our heads. Until we took her to Alabny med for second opinion and they found the sis is her throat. We are in the process of getting another doctor but unfortunitly that takes a little time to get moving. We are pushing it as fast as we can. We are waiting for the doc in NYC to review her records and we also have another doctor a little closer then NYC which is in New Hampshire that we are consulting with, She is suppose to see her on September 8th.
Until then we will just continue to call this doctor daily until he returns our call.
Thank you for you support and advice. We understand your frustration with it as well. We are trying everything to make her as comfortable as possible
 
Hi, Rosemary: Madasin is so fortunate to have a parent and grandparent who are pushing for her to get needed help! You and Ding and the others are right. The situation is more urgent when the sick person is a young child.

When the patient is an adult, I can understand a physican sometimes asking for patience and "to wait a little longer," because s/he doesn't isn't available all hours of every day, and GPs are often pushed to take on huge client loads. Even when an adult is pretty under the weather, much of the time we have the body mass to handle some more weight loss, or other factors that enable us to wait (of course, exceptions include clear emergencies and those who are already in a weakened state from illness). It hurts, it puts jobs at risk, and it would be much better if the system could just be reformed so the wait wasn't so darn long, but we try to manage. But a little child doesn't have that body mass. A toddler is at risk for side-effects from dehydration. And she just plain shouldn't be kept waiting and in pain if something can be done about it.

Madasin and her legal guardian(s) are the owners of Madasin's health information. It's YOURS. You all know that, and it seems to me like this doctor is trying to pretend otherwise by ignoring phone calls and messages. If results are available in 5 days, then I believe that any legal guardian has the right to that information in 5 days, or soon after. [My doctor's clinic gets a little annoyed with this sometimes, because if I am anxious about results from something like a recent breast biopsy, I go to the walk-in to learn the results rather than waiting a week to see my GP. I nicely explain that I'm the owner of my health information, and they sigh and get the walk-in doctor.]

If the test results show something could help improve quality of life for a 2 year old or maybe help her avoid a hospital stay or other consequences of being without medication, then you all receiving those results is all the more important.

Sending warm thoughts your way.
 
Last edited:
My heart goes out to Madasin, mom and grandma. She is so adorable I wish I could give her a hug. I started having symptoms when I was 5 but diagnosed at 6, I know what it's like not wanting to play feeling as she does. All I could do was lay on the couch and watch tv, I couldn't eat anything, just liquids, popsicles, suck on candy etc.

xoxoxox for Madaisin, she truly is a crohn's dolly.
 
Hey Rosemary and Kelley,

This must be so frightening and frustrating for you. I hope and pray that you get the answers you need very soon so that Maddie can finally have some relief. Sending heaps of hugs and good luck your way.......................


:hug::ghug::hug::ghug::hug::ghug::hug::ghug::hug:


:goodluck: and :getwell:


Thinking of you all, always. :kiss:
Dusty
 
You say she only ate one scrambled egg all day yesterday. Is she thirsty a lot? Maybe you could mix a little ensure in whatever her favorite drink is. Not enough to change it but it'd be some nutrition.
 
Thanks everyone for you wishes and support it means a lot to us.
*** dexky- all madasin drinks is gerber graduate strawberry kiwi or troical water. She wont drink anything else since she got sick last august. She has been sick since august 2009. we have tried the ensure route and she spits it out and ask for her drink to be plain, She is very very smart.
:angry-banghead:
we took her to her peditrician this morning and they did a urine test. That came back with high white blood cell count. So they are treating her for a UTI until the cultures come back which they say will be in three days. Her diarreha is still here and the food she eats is not digesting once again. So she has running stools with chunks of food that she ate. That is exactly how it was when this first started. she hate a couple homemade meatballs tonight. made especially for her cause she loves them. She drinks a lot and they told us that as long as she pees once in a 12 hour time span she is fine. Which of course we do not believe cause that is just crazy for a little child. We are watching her close and trying our best. will keep you updated. :angry-banghead:
 
Hey guys,

Thanks for the update. Just one thing to bear in mind about her passing urine, if she is having multiple loose stools a day she will lose most of her fluid this way rather than via the bladder.

I'm not familiar with Gerber Graduates, are they some type of fruit juice or flavoured water? These type of drinks in themselves have the potential to cause diarrhoea if consumed in large quantities, particularly if little food is being ingested. Just something to think about.

My heart goes out to you all. This is such an awful time and I hope and pray things turn around soon.

Take care all, :hug:
Dusty
 
Hey guys,

I feel compelled to reply again about the Gerber drinks. After a little research I am concerned that if this is what Maddie is primarily consuming the sugar in the drinks may exacerbate her diarrhoea and dehydration and this could go some way to explaining her large thirst. Just putting this out there as a way of trying to help.

Take care,
Dusty
__________________
 
Have you tried giving her Pedialyte?? If she won't drink that what about the generic brand. She needs electrolytes in her system as that affects her heart, blood work, potassium levels, etc. If she won't drink it, try freezing it and see if she'll eat it as a freezie pop.

I switched to Pedialyte myself as my primary MD told me that it's better for me as an ostomate b/c it has no added sugar like Gatorade whenever I get dehydrated due to flaring or have the flu. My heart goes out to your daughter and you.

Keep calling the GI if she's still sick and if worse comes to worse, just take her to the ER. They have to see her and call the GI from there about her status. Speaking as someone who use to work in the hospital and has seen everything even as a medical biller, you are doing the right thing by complaining about Maddie's current doctor. He needs to know that she is still not well. God bless. Gutless Wonder
 
Hey guys,

I feel compelled to reply again about the Gerber drinks. After a little research I am concerned that if this is what Maddie is primarily consuming the sugar in the drinks may exacerbate her diarrhoea and dehydration and this could go some way to explaining her large thirst. Just putting this out there as a way of trying to help.

Take care,
Dusty
__________________

If she is drinking the "Smart Sips", they have 7 grams sugar per serving. About 2 teaspoons/cup. If it's the fruit splashers, the sugar is double that amount!!!

I think Dusty may definitely be onto something ladies!!
 
Kello82- you did not offend us, i was just saying that we are giving her tylenol. She can not have any form of motrin, and hasnt been able to since a baby, causes blood in her stools.

Has for the gerber drink we cut it back and give her something else. but even when she wasnt drinking the gerber juice/water she still had diarreah. We thought about that a while ago and did stop the juice for a while to see if that was it. Sometimes we cant buy it cause only one store carries it here therefore we get her other stuff.
She wont drink pedialite but I am going to try freezing it into a ice pop. Maybe she will eat them. She wont drink gatorade either now since we had to mix the miralax with it a few procedures ago. But she loves ice pops so going to try to freeze stuff to get her to take it. She also drinks a lot of water. She loves water... we are expermenting on getting her to drink other things. the water/juice she drinks does not have much sugar in it and is only 40% juice. It has mostly water in it. It is designed for babies. I took the ingredients and researched it last night after dustykats post. It should not cause the diarreah but we have cut it back anyway and today she has not had much of it.
Thanks everyone for your advice and input, we are up to trying anything that might help her. Thank you Dustykat- we appreciate your input
 
Better Day xx

Thanks everyone for you wishes and support it means a lot to us.
*** dexky- all madasin drinks is gerber graduate strawberry kiwi or troical water. She wont drink anything else since she got sick last august. She has been sick since august 2009. we have tried the ensure route and she spits it out and ask for her drink to be plain, She is very very smart.
:angry-banghead:
we took her to her peditrician this morning and they did a urine test. That came back with high white blood cell count. So they are treating her for a UTI until the cultures come back which they say will be in three days. Her diarreha is still here and the food she eats is not digesting once again. So she has running stools with chunks of food that she ate. That is exactly how it was when this first started. she hate a couple homemade meatballs tonight. made especially for her cause she loves them. She drinks a lot and they told us that as long as she pees once in a 12 hour time span she is fine. Which of course we do not believe cause that is just crazy for a little child. We are watching her close and trying our best. will keep you updated. :angry-banghead:


Hiya
Hope Madasin has had a better day? I have been thinking; I use a creme called motainiun for my sore bottom and I bet someone else got one bless her, it brill, if you would like to try it I would be happy to send you some for Madasin's. I'm thinking of her and you all too. Take care xx

Love & Kisses Sue :ysmile: xxxx
 
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Maddie ate a half of a hamburgh and a piece of a pear.. Kelley also got her some kids nutri drink to see if she would drink that. We also found some pedialite ice pops at the store that we are going to try.. wish us luck with it
 
wooo hooo maddie ate an egg and half a burger and 1/4 of a pear today... plus she drank some of nutra pal.. which is like ensure but made for kids. we are excited about that.
 
I'm so glad to hear that. I forgot to mention that Pedialyte has Pedialyte ice pops. they are good as well. I hope she continues to eat and feel better.

Thanks for the update. ((hugs)) to Maddie.
 
:hug::hug: and :kiss::kiss: to our Maddie! She deserves an :award2: for being able to eat like such a big :shantel: I hope she continues to improve, the results come back great, and Dr. KB is able to help.

:award2: to Rosemary and Kelley for staying strong and helping Maddie get through this.

True story.....While apologizing to my son's 4th grade teacher for calling after hours for homework help, she said do not ever apologozing for trying to help your child. I told her I know, but she's a teacher and it was late. Her comment I will never forget. A teacher is there to teach children and are excited when a parent shows the same concern. Most parents don't. They pass the responsibility to the schools, other family members, or actually leave the child to their own creativity with the threat of being abused if the do not do well. She opened my eyes to a society that night that I had chosen to stay blinded to. A lot of parents, I don't know how and obviously neither do you, could have left Maddie on a church door step, hospital, or as we read in the news many other horrendous places just because they could not deal with it.

As Maddie's mother and grandmother you consider it your "duty" to take care of her, but it's not. It's the natural and maternal love that flows between the three of you the tell me everything will be okay. I know some of this may not be coming out just right, but I hope you understand what I am trying to say. Bottom line is, love conquers all........and from what I see the three of you have that in abundance. Everything is going to be okay.

I'm glad Maddie is eating and drinking. That's a great sign. Please give her a hug from me, and one to each of you. I hope the test results get to NYC soon and keep us posted. Sorry for the long story. Sending lots of love and comfort to all of you. Your friend, Beverly
 
Hi guys,

It's so good to hear that Maddie is regaining some of her appetite, you must be so relieved. I hope it continues this way and that she can get back on the meds soon! Sending loads of healing (((HUGS))) and (((THOUGHTS))) your way............


:hug::ghug::hug::ghug::hug::ghug::hug::ghug::hug:


:getwell: MADDIE!!!


Always thinking about you, :)
Dusty
 
hello everyone! sorry I havent been on lately. thank you all so much for your help and support. we have backed maddie off her juice...shes been drinking more water and we are going to get some pedialyte pops this morning for her!!! she is eating a little more...the fever broke finally but her stools are NOT good at all. i have the first call of the day in to her "wonderful" GI for test results.

MISB- Your story was touching. you are right we do not take care of madasin because we have to. I do it, as well as my mom, because we would not have it any other way.
 
I was afraid this would not come out right and I hope you took it the way it is intended. As parents, a good parent believes it is their duty and their right to not only provide for, but to protect and fight for our children. I look in society and see so many children left to their own at such an early age it makes me ill. To see the strength the you and Rosemary have to go that extra mile for Madddie warms my heart so much. And from what I read, this same strength and determination is being embedded into Maddie by love and example. She will need this and she has the best women in the world to learn this from.

The strength of the three of you are giving me the strength to do what I am doing. This morning I get the Barium Sulfate Readi-Cat Cocktail. I can do this because I know I am not alone. There is a beautiful little Princess named Maddie who is going through similar things with me this week. I pray that the tests for Princess Maddie are 10 times easier than any she has ever done. And I pray this weeks holds nothing but miracles for everyone. God bless and keep you all. Your friend, Beverly
 
Update on Miss Maddie, We contacted GI doc today to find out test results are not back yet and besides that doc is on vacation until next week. We called pediatrician today and those results are not back yet either. Irratated about that for sure.

After looking in every store in this little area we could not find pediatlite ice pops, so we decided to look for the little trays to make our own, Well after looking very hard we actually found some of those and made our own. You would not think it would be so hard to find the trays at this time of year but I guess when you live in a little town thats what you get. We got her to eat an ice cream pop today and a little of other stuff, not a lot though. Once pedilite pops are frozen going to give her as many of those as she will eat.
She has been drinking a lot more different things lately which is great. Her wet diapers have cut down considerably today for example one wet diaper from 1pm until 8pm. that is very unusal for her so we are watching that very closely. dihydration scares the heck out of us, so we are really trying to push the fluids for her. Will let you know how it all goes with that.
 
Thanks for the updates Rosemary and Kelley:). Glad to hear you are finding some things Maddy will take!!
 
Thanks for the updates. Sorry if I've sounded strange lately, don't mean to. I'm glad you found the ice pop makers. Are they going to make you wait all week for the test results? I hope not. That's just not right. I have you all in my prayers every day and hope Maddie finds some relief soon. Rosemary, Kelley, you ladies stay strong and take care of yourselves, too. I'm glad you have each other to lean on right now. Keep us posted and God be with you.
 
Yes MisB they are making us wait until the doctor gets back to get the results. Of course they say they are not in yet so we will wait another day and call again. Maybe they will let another doctor give us the results, however his nurse said today he had to give them to us. We will see. Hopefully they will tell us something cause she needs her meds back.
No you do not sound strange to us at all. We know you are going through a tough time right now yourself and the pain meds they give you are pretty strong. We hold nothing against you as far as that goes. I just wish they would help you out so your not suffering.
we are leaning on each other every step of the way, I could not imagine having it any other way. We have been doing this for 2 years now and I dont plan on quiting now and neither does kelley. lol
I will let you know how she is doing and if we hear anything tomorrow on the results.
 
Hey Rosemary & Kelly, you & Madie have been on my mind an awful lot over the course of the past few days. I believe it was Ding who mentioned earlier in the thread that the docs were being neglectful. You likely wouldn't tolerate such treatment from a mechanic, retail staff or anyone who you paid for services. In my opinion this is the way to look at Doc's as well. You do have a right to treatment and it should be done within time-lines that are not harmful to the patient. Doesn't the Hippocratic oath start with "First do no harm?" By these pinheads going on vacation while Maddie is still in crisis, I definitely would see that as not only a sign of poor integrity but a total lack of dedication to help others. In fairness, I know everyone even Docs need vacations, but how could you possibly relax when you know a two year old who needs your "expertise" is suffering and fighting in your their absence.

You may want to contact the American Medical Association.

http://www.ama-assn.org/

This appears to be place where you can file a complaint about neglectful care as well as look for a new doc. So that would be the "conventional trail to blaze for little Maddie.

As far as unconventional and more within your control advocating, I would take the adorable pic of her to the local drugstore and or staples, copymax whatever you have there. Have them make up several copies post one on the docs office door as you walk in then sit patiently (as is possible) in the docs waiting room until you are given a reasonable date and time for and emergency appointment. Since you already likely have some sort of notebook where you are keeping notes, place a pic on both outside covers and just sit until they act in a considerate, human manner and see your baby.

BTW the pic should have something to the effect of "Could you refuse my baby treatment? This Doctor did!! Even if you were to do this while he is on vacation, perhaps they would struggle to find another suitable more compassionate doc while DR PPhead is on vacation. Even if you are asked to leave, demand that you see the hospital administrator or at the very least a social worker who may help to advocate. Tell them that if they do not care for her soon you will begin picketing with larger signs outside the main entrance and will call media outlets (TV stations, Radio, Newspapers) to come and learn your story first hand. They may be initially a bit pissed (too bad- playing nice didn't work) but i bet you will get more action, feel somewhat empowered, and most importantly of all get her the care she needs. I really, really feel horrible for the three of you, hope that my rant was somewhat helpful.
 
Well...we tried the predialyte popsicles with madasin and she does not like them. we have tried also nutripals strawberry drinks...also with no luck.
JERMAN- I loved your post and as mom says you have unleashed a monster...lol. i am getting on the ball with all you said. i am contacting the hospital administrator tomorrow. as well as AMA. I am done playing "games" with this dr.
I made her an appt with a diff doc to try to see if we have better luck.
we are still taking her to NYC but i also need one a little closer to home. she goes to them the 8 of september. hopefully we will get somewhere.
Hopefully i will have an update on madasin with results tomorrow!!
 
Hey Kelley,
Maybe along with Jerman's awesome plan of attack, which is awesome, I was wondering if maybe Dr. KB in NYC might have some suggestions on a dr. closer to home and it would give another excuse to contact him and nudge him some. Plus, if he recommends someone closer to you, it would probably be someone he's already worked with and better chance of the 2 doctors working better together. If your current Dr. is so careless it might make things harder for Dr. KB in the long run, should things turn out with him. I'm just thinking if I considered myself a good doctor trying to help a child and is thrown in with an idiot that takes a vacation without having a someone cover while I'm gone, it would really make me suspious of what I was getting into. And both dr.'s will need to be constantly working together. Just a thought, know I'm rambling, sorry..........tend to do that sometimes. If you ever want to talk, just let me know.

I'm sorry Maddie's having so much trouble finding stuff to eat/drink. She is in my prayers every day, as well as you and your mom. You ladie's get your rest when you can, keep us posted, and good luck tomorrow. I'll be thinking about you and wishing you well.
 
Kelley - I met someone the other day who has a son with crohns' - she gave me the name of her Doc in Albany - begins with a 'B' - can't remember it, but would know it if I saw it....who was it you saw/talked to at Albany Med?..that is where this boys' doc is - and his mom was VERY happy with him.......

Hope things get better for little Maddie! If/When you do make it to Albany - please be sure to look me up, I'd like to arrange a 'special' visit for her (does she like carousels???).....
 
I have to say that I think you are all wonderful. Even when i am in the worst mood possible, I get on the forum and feel so much better. Either by the warm feeling from everyone or from laughing my butt off especially at Jerman. I love you all for being so nice and supportive.

Jerman- you always make me laugh no matter what mood I am in, Thank you for that. Lately the moods have not been good. Your plan of attack is awesome and Kelley is moving on your suggestions, trust me. You set off a monster lol

Pasobuff - maddies GI in Albany was Doc Benzel (I think that is how to spell it) He is the one who said she was fine, nothing was wrong and sent her home in August 2009 when this all started. I am not sure if it is the same doc you are talking about or not. Try to find out the name for me please and we will see what we come up with. We are up for anything at this point.

dexky- Maddies appetite today is not any better. She just is not interested in eating. She says she is hungry and we make her what she wants but then she will not eat it. Pulling our hair out with it. We try everything and make her anything and everything she ask for just to get her to eat. her BM's are not any better, they are actually getting worse.

We called for the urine culture results today at her peditricians office and you are going to think this is nuts. "The nurse told Kelley that her urine was negative. (of course she was talking about the quick test they did saturday which the doctor already told us was positive for high white blood count). When kelley told her this she retracted and said oh yeah it is. well the cultures are not back yet try again tomorrow". I could not believe she said that, of course at this point nothing really surprises me but I dont understand why she would say they were negative when in fact it was NOT!!
I am begininng to think that these doctors got their degrees out of the cracker jack box. :voodoo:

We are so frustrated with the whole medical staff in this area. Why is it so hard to find someone to help a child?

MrsB we are thinking about you and wishing you some relief...

I will update everyone tomorrow on whether we get some results or not.

Thanks again everyone you are all wonderful
 
How much weight has Maddy lost in the last few weeks? Surely one of these doctors can see that this child is in a crisis!!

Rosemary, do you think she should be in the hospital or is she doing well enough for you all to continue to monitor her at home? It just doesn't seem like she's getting any nutrition from your posts and I'm amazed she hasn't been admitted by now. I know the aggravation we all feel for Maddy is nothing compared to what you are going through but it just seems like it's high time for something to happen in her favor.

Please keep us posted!!
 
dexky- her drs dont think she needs to be admitted. they said to just watch her. it takes them nearly lifeless around here to admit them for anything. our drs have seemed to get there lisence from the bottom of cracker jack boxes.
we are trying to get as much into her as we can. the weight she has lost....well this time last year she was in size 2T pants. and now well....if not for the length she could wear my youngests 03 and 3-6 month pants.
her drs tell me she is fine though. i fight them on her weight loss constantly. they tell me she is steady and or gaining. once again....they are not that intelligent.
it is 7:44am here. in 15 minutes i am going to call the hospital administrator and try to get her results. i will post as soon as i know something....good or bad.
we have recently found out that 2 of my uncles have recently been diagnosed with Crohns disease. and my great grandmother was diagnosed with colon cancer at a very young age.
 
ok well....good ol' fletcher allen health center (hospital her GI is at) doesnt have a hospital administrator....so i spoke to a patient and family advocacy nurse. she is suppose to call dr. "pinheads" office adn speak to the nurse. she is going to call me back after she makes some calls. hopefully ill have results today!!!
 
i got a call back from hospital and they do not have test results back yet. should know something by monday. if i do not i have informed them that I WILL be in his office bright adn early tuesday morning...until i get what i need.
 
It just kills me reading about all the problems you are having with the doctors.....GEESH! How much does Maddie weigh now? My own daughter is 5 1/2 and barely tops the scales at 40lbs....she is a beanpole....do you keep a record of her weight? Maybe if you had that too it could show a definite decline/steady etc chart - harder to fight with that in front of them.....

I can't believe the nurse lied to you on the phone too - I hope the pt and family advocate can help out.

I will see if I can find the name of the dr - I don't know the woman personally, met her when she was having a tag sale at her house....

Was the one you saw James Betzhold MD? That is the only Dr I see on the listing that might be a match.....pediatric GI doctor.....

Too bad Dr Balint isn't at Albany Med any more - he retired a couple of years ago (is ancient!)...he was my dr way back when.....
 

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