# Madasin's Updates



## madasins mommy

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!!!!


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## DustyKat

: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


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## Astra

WOW WOW Kelley!

Fan bloody tastic!!!!

This defo will be a new beginning for your little princess!
xxxx


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## gypsigirl28

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....


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## Dexky

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!!


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## Guest

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


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## Dallies

Wonderful news xxx


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## gypsigirl28

*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:


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## MisB

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.


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## DustyKat

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


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## Dexky

Take care of that beauty ladies!!!  She deserves the best.


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## PeninsulaLil

Good luck and safe travels!  I hope there are finally some answers.  She's such a darling girl!

Lilly


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## Dallies

Thinking off you all, and please give Maddie a big kiss from me xxxx


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## Astra

Good Luck Maddie, Kelley & Rosemary!
we'll be keeping everything crossed!
xxxxx


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## madasins mommy

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.


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## Dallies

Thinking of you all xxxxxxxxx


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## Dexky

Is Maddy feeling any better?


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## gypsigirl28

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.


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## MisB

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.


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## Dexky

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.


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## madasins mommy

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


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## madasins mommy

*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:


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## Astra

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


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## Dallies

My thoughts are with you all.  Big hugs for you xxxxxxxxxxxx


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## kari

My thoughts are with you.


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## Sue

madasins mommy said:


> 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


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## gypsigirl28

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.


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## Dexky

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!!


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## MisB

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


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## Crohns08

Just wanted to let you guys know that I am keeping Maddy in prayers and wishing the best for her!


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## DustyKat

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


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## Dexky

Finally, today!!!  All the best Maddy


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## Guest

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.


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## gypsigirl28

*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


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## Lisa

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?


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## Guest

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.


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## gypsigirl28

we plan to do just that.... her fever is climbing it is now 102.5


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## Silvermoon

STOP TYPING AND GO NOW!!

NURSE'S ORDERS!!

Chat soon.....
BIG HUGE SQUISHY HUGS


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## Sue

Arrrrrrr Bless her xxx  GET WELL SOOOOOON XXX :Flower: Love Sue


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## madasins mommy

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!


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## Silvermoon

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....


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## Jerman

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.


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## madasins mommy

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!


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## Dexky

Can she not have something for her pain now?


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## gypsigirl28

Just tylenol... They said to keep her off her meds until the results come back in a week


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## Jerman

madasins mommy said:


> 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:


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## gypsigirl28

*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.....


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## Dexky

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.


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## amirah

Hope everything goes ok and they manage to rush the results though. thinking of you both


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## kello82

hey gypsi, what are you/if anything giving maddie for the fever?  just wondering.


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## DustyKat

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


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## gypsigirl28

kello82 of course we are giving her tylenol for her fever.....


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## Sue-2009

Ohhhh....Sorry to hear of Madasin being ill...So happy she has you!  (((Hug)) to all of you! Sue


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## gypsigirl28

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


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## Guest

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.


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## gypsigirl28

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..


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## Sue

*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:


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## Guest

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...


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## Crohn's 35

Good idea Ding, I was getting confused...but that dont take much!

Great news, awesome!!!!!!


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## gypsigirl28

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.


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## DustyKat

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


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## Crohns08

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!


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## Dexky

Anything new Rosemary and Kelley?  How is Maddy doing?


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## gypsigirl28

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:


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## Guest

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.


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## gypsigirl28

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


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## Entchen

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.


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## Crohn's_Doll

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.


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## DustyKat

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


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## Dexky

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.


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## gypsigirl28

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:


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## DustyKat

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


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## kello82

gypsigirl28 said:


> kello82 of course we are giving her tylenol for her fever.....


geez sorry didnt mean to offend just wanted to be sure it wasnt ibuprofin (sp?)...many people are never told that crohns patients should avoid that.....


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## DustyKat

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
__________________


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## GutlessWonder86

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


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## Dexky

DustyKat said:


> 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!!


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## gypsigirl28

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


----------



## Sue

*Better Day xx*



gypsigirl28 said:


> 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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## gypsigirl28

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


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## gypsigirl28

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.


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## GutlessWonder86

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.


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## MisB

: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


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## DustyKat

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


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## madasins mommy

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.


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## MisB

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


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## gypsigirl28

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.


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## Dexky

Thanks for the updates Rosemary and Kelley.  Glad to hear you are finding some things Maddy will take!!


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## MisB

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.


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## gypsigirl28

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.


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## Jerman

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.


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## madasins mommy

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!!


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## MisB

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.


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## Lisa

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???).....


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## Dexky

Hey ladies, how was Maddy's appetite today and her bm's?  any improvement?


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## gypsigirl28

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


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## Dexky

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!!


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## madasins mommy

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.


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## madasins mommy

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!!!


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## madasins mommy

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.


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## Lisa

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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## madasins mommy

yes she has seen bentzhold. i have records of her weight, it gets me no where. the advocacy nurse well....i ended up into it with her so she was of no help. um... her pediatrician is useless as well. we did finally get her urince culture back and it was positive for E-Coli in her urinary tract. the nurse who called and gave me results said it was from her stools being so loose or from her colon being to inflammed adn rubbing against her bladder. 
im FRUSTERATED!!!!! needless to say im NOT having a good day.


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## Silvermoon

Sorry but the nurse is me is very frustrated with these people...and I really don't want to scare you....BUT....

There are only two reasons for E.coli in urine for women (one for men) .... wiping the "wrong" way (ie. back to front ... does she still wear a diaper).... OR ... kind of what the nurse said is right...colon rubbing on bladder... BUT.... E. coli does not pass through osmosis, so this means there is a connection (or fistula) between the bladder and the colon.

I had the second... the fistula... failry easy to diagnose... catheter-like camera inserted into the bladder through the urethra to look and see if a fistula is spotted.... it is not the most pleasant thing, but less pleasant than the one up the butt.... AND if it is there, it explains ALOT ... fevers, decrease in wet diapers, E. coli, etc.....

It may be extreme, but if it was me and my child I would ask to see a urologist and go over all this with him.... it is a pain in the...well...you know.... but I would need to rule it out for piece of mind....

If it is a fistula, it is a fairly easy surgery (not that surgery is easy is ANYTIME, but anyway...) ... my urologist just seperated the bowel from the bladder... and rearranged a bit of the "outter" linning of the intestine around the spot to give the bladder a bit of time to heal... depending on how big it is, they may cut out the little bits, but IMO, in the scheme of things, it is a small price to pay for the health of a little girl.....

On behalf of those of us in the medical field who DO give a shit.... I am so sorry you guys have to be going through this.....

Sending warm thoughts....


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## MisB

How much more can this poor child and you ladies endure?  This really breaks my heart.  Can you start pulling in the media like Jerman said or contact Dr. KB and try to get her to him sooner? Something has got to be done soon.  I wish there was more I could do.  I also can't help but notice  that in the middle of your own struggles, you always take time to ask about me.  I appreciate your prayers and thoughts and that's how we are all going to get through these things.  TOGETHER :ghug:  In keeping threads straight, I'm headed to go post my own updates.   For now, Please give Maddie a hug and let her know she is loved by many people and God will find a way to take care of her very soon.  I just know it.  And I pray his strenght and guidance are with the 2 of you.  You are very special ladies.

Your Friend,
Beverly


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## gypsigirl28

Still no word from the docs in VT as to her test results.  Of course Dr. pinhead is still not in the office.  We dont expect to hear until monday the soonest even though yesterday they said someone would call as soon as results are in.  We have a hard time believing that from this office.  not much has changed really, she eats a few bites here and there but nothing like she was eating before they took her off the meds.  She has four more days on the antibotics for the UTI then they want a new culture done to see if it went away.  However she has been on it for 6 days now and no improvement.  She still complains her pee pee hurts and pulls at her diaper.  We change her everytime she pees to keep her dry.  She is not dehydrated which is a really good thing.  

Thanks Silvermoon for that information, We did not know any of that and will get on the ball with getting that checked out.  Yes she still wears a diaper, it is very hard to potty train with the diarreah. We just make sure she is dry at all times. She will go pee on pot but she stand in bathroom and refuses to come out, and will cry until you put a diaper on her.  We dont force her cause I would not want to have D at her age and have to worry about making it to bathroom in time.

MisB you are always in our thoughts and prayers no matter what kind of day we have or the amount of stress and frustration we are dealing with!!!!!!!!!!!!!


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## DustyKat

Hey guys,

I hope you get some word on the results soon..............keep badgering and badgering them. Sending heaps and heaps and heaps of hugs your way ........


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


:hang:

Thinking about you all, 
Dusty


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## Lisa

That is at least some other news (the UTI) - I too would get a consult with a urologist....at this point I don't see any harm with getting a new/fresh set of eyes looking at Maddies' isuses.....in fact it sure could help! 

Good luck - and give Maddie a great big HUG!


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## gypsigirl28

well last night was a rough night for miss maddie,  She was up crying for a few hours, I think she was achey cause she would not even let me touch her for a while, then let me rub her back.  Hopefully tonight will be better for her.  Still no word on results which is no surprise at all to us. We keep chuggin along with her and trying to get her through this mess.  She is a tough little girl who keeps on smiling and giving lots of hugs and kisses


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## MisB

Please give precious little Maddie a big hug from me.  There are no words that can comfort her at this point, but she is in my prayers.  I hope she has a better night tonight and that we can all get through this weekend and get better results next week.  Sending hugs to you and Kelley too.  Take care of yourselfs and stay strong.  God be with you.


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## Jerman

My thoughts are and have been with you Kelly,Rosemary & and the little battle maiden. I really am awestruck that you have had to deal with this for so long. Would it be helpful for you to bring her to the ER at this point? Perhaps once she is in, someone can call Dr.PP and tell him that HIS  patient is in crisis and needs his attention. Perhaps bring the  pics of her and sit their in the ER, share your story with whoever dares to sit next to you, this may also serve to either fire up a room full of unexpected advocates (the others waiting for treatment) or clear them out as they hear of a doc associated with the hospital that is a total dumbass. 

It really just breaks my heart that you have all had to endure such a hellish experience. If I were closer by I would go to his office and bring him to you. Please also call the AMA on him, I have had to do that with a doc around here, after i nearly died from anaphylactic shock in his parking lot. It really sounds as if Maddie may have put up with all she can, can't imagine the level of stress that you ladies are carrying around-wish i could take it on for the three of you. Perhaps you could look for a malpractice lawyer-explain the situation and have him call the doc to let him know what is coming if he doesn't get his act together. Please try the pic thing on the notebook,your daughter is so very beautiful i just couldn't imagine anyone NOT wanting to help her. If i had the money i would fly you all to somewhere where she could get the care she needs, Boston Children's saved my son and are known as one of the best in the world. 

I am not much for prayer anymore, but i will say many for her and you ladies today. Also will send strength, white light and any other thing i can think of. 

You are all so strong- more so now that you should have to be. In my opinion it is media time. Also, look to see if there are any hospital employees who are in charge of advocating for patient rights. Find the poor soul who sees pts. to survey hospital service satisfaction and chew up the survey letting her know what a warehouse for sick people the hospiital is. Use the words Neglect and Abuse, Mal-practice and of course media. 

In Mass we have a thing called a mandated reporter- all people who are vulnerable and unable to advocate are protected by medical staff, social workers, police and fire personell as well as human service workers. This means that if they see or are concerned about the possibility of someone being abused or NEGLECTED (drPP) THEY ARE MANDATED BY LAW TO REPORT THIS LACK OF TREATMENT OR FACE JAIL AND SUSPENSION OF LISCENCE.

Dear god, I hope this stops soon. please let me know if any of my rambling helps at all. You are all so very strong I truly admire your fighting spirit. Please keep at it.

Jerry


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## gypsigirl28

Hi everyone,

thank you so much for all your support and advice.  Maddie slept much better last night and I am hoping she does tonight as well.  She was up her normal times watching TV for hours but she was not crying while doing so. Being that she only sleep a few hours a night anyway. She still is not eating but a couple bites here and there.  but is still hydrated which is a plus.  The UTI is not any better, she is still very red and complains it hurts all the time. Today she asked Kelley "mamma why do I hurt" Poor baby girl and poor Kelley for having to try to explain that to a two year old. 

They have monday to tell us something or they are not going to like the outcome.


----------



## DustyKat

Hey guys, :bigwave:

I can't even begin to imagine the pain, fear and frustration you are dealing with. God I hope you get answers and treatment soon for Maddie, this is just awful. I am a little relieved though that Maddie has a better night, poor little darling. Thinking about you all...............................

((((((((((HUGS))))))))))



Take care, 
Dusty


----------



## Silvermoon

gypsigirl28 said:


> Thanks Silvermoon for that information, We did not know any of that and will get on the ball with getting that checked out.  Yes she still wears a diaper, it is very hard to potty train with the diarreah. We just make sure she is dry at all times. She will go pee on pot but she stand in bathroom and refuses to come out, and will cry until you put a diaper on her.  We dont force her cause I would not want to have D at her age and have to worry about making it to bathroom in time.


Yes, I thought she still might be in diapers... good that you are changing everytime she wets... and no I wouldn't want to be just learning how to use the potty and have to go without my diaper at this stage of the game!!  Hell, I DO know how to use the potty and STILL wear my diaper all the time.. LOL!!

Anyhow, the other thing I thought of is... with each diaper change, once she is cleaned up, you can use diaper barier cream around her vaginal area as well...it is very minimal relief and protecttion, but it may offer a bit to keep the diarrhea away fom parts it shouldn't be, plus maybe help the burning around her vagina for now... just a simple vaseline, or even a bit of Peneten or Zincofax.... I wouldn't use anything more than that (ie Calmoseptine) as with the other ingredients in it, it may burn more than the urine does....

I wish I could off you guys more... but "nursy" type stuff is what I do best, so that is all I have to offer you for now....  plus squishy cyber hugs and very warm thoughts.... :rosette2:


----------



## Dexky

Thanks for the update Rosemary!!  That would break my heart if one of my children asked that question...especially at two!!  Please continue to beat down the doors until you get Maddy some relief!!!  Keep us posted!!


----------



## madasins mommy

it did break my heart for her to ask me that dexky. i just told her i was doing my best to find her a doctor to help make the pain go away...i got a thank you mommy and a big hug.


----------



## Dexky

Hey Kelley, I guess there's at least a chance you may get some test results tomorrow.  Please let us know as soon as you do!!!  How has Maddy been today?


----------



## gypsigirl28

Hi dexky, Maddie did actually play outside for a little bit today, Not long cause she cant handle the sun and with the meds for the UTI she is not suppose to be in the sun.  While outside she had to take some breaks and sit down cause her belly hurt, we gave her some mylcon to help her out. She came in and took a nap. Did not eat much today, some fruit snacks, string cheese, blueberries and one strawberry. Did not want anything to do with dinner.  But at least what she did eat was good for her. 
We are hoping to hear something tomorrow, if not we plan to go across the lake tuesday to his office.  We have a plan of action if we need it, Hoping that we get the answers and dont have to go that route but we are ready and willing to do so.
As soon as we know something tomorrow I will get on a make a post so everyone knows what is going on.
have a good night


----------



## MisB

Hello Ladies,

Just got woke up for blood and meds and wanted to check posts.  I am praying that you ladies get some much needed great news today.  Prayers are that today is a big day and we are going to have a lot of celebrating to do later on.  I'm glad Maddie was able to eat and play a little bit.  It is so hard to watch such a small child have to suffer so much.  And from her one picture I can tell she is such a little beauty.  And so brave and strong to do what she is doing.  You and Kelley are doing such a great job with her I just know things will come around soon.  I'll be watching for posts later.  I know it's hard to think about posting when you're dealing with the situations, but I'm finding I wanna post here before telling some of my family members because everyone here understands so much more what we go through.  I'll be praying for you today and looking forward to good news.  God bless and we'll chat later.  

Sending lots of love your way,
Beverly


----------



## Astra

Thinking of you all at this very frustrating time!
Wish I could be of some help, but hundreds of miles away!
I can't believe they're not worried about her weight or lack of appetite, I think I'd be out of my mind if this was my little un, I'd be in A&E demanding an IV drip of food! I'd probably be carted away for screaming and being abusive. In this country we have PALS, Patient Advice Liaison Service, hope you've got something similar?
Stay strong Rosemary and Kelley, you're doing a great job under the circumstances!
Love to Princess Maddie!
xxxxx


----------



## Guest

hi Rosemary... just a little tip that might help the soreness from Madasin's uti.... if you sit her in a warm bath, spread her legs apart a little, and sprinkle some bicarbinate of soda in the water between her legs and swish it up towards her front bum, it might really take the sting out and reduce the irritation there. this idea was given to me by an old lady years ago, our next door neighbour, when my daughter had chickenpox sores down there, and it helped enormously. i've since used it for my daughter whenever there's been a soreness in that area, whether it was nappy rash or anything, and it always seems to help.

i hope she feels better soon!


----------



## My Butt Hurts

gypsigirl28 said:


> wooo hooo maddie ate .. and 1/4 of a pear today...


The last time I ate a pear, I was in a great remission.  The next THREE days I felt like I was in a horrible flare, and I haven't touched a pear since.
I know that food treats everyone differently, but that was my first thought when I read that.


----------



## My Butt Hurts

gypsigirl28 said:


> The UTI is not any better, she is still very red and complains it hurts all the time.


Also, when my son was little, he had one bad case of diaper rash and his GP prescribed a steroid cream that cleared it up very quickly.  I know that won't help the UTI, but it might help the redness on the outside.


----------



## MisB

Hey Rosemary,  I don't know why I didn't think of this earlier.  What kind of diapers are you using?  When my son was a baby he developed a really bad rash.  My parents suggested good old fashioned clothe diapers.  It's a little bit of a mess because there is no plastic arount them, but if she's  playing or sitting somewhere that you could have her sitting on something plastic and just a clothe around her instead of the disposable diapers, it might help. My Dad actually had my 4 month old son laying butt naked on a floor matt under the ceiling fan telling me, " The boy just needs airing out a little.  Those plastic disposables don't let him breathe"  I know you don't need any extra stress and laundry, but if a day or two in clothes would help with the irrritation, it might be worth it.  Wishing you the very best and keeping you all in my prayers.
Beverly


----------



## gypsigirl28

Hi everyone,, NO WORD yet, Kelley has called and NO return call yet!!!!!!!!!!!!!!! They said he was unavailbale.  

Bev - As for diapers she has always used pampers, they are the only ones that dont cause her to break out.  As for wearing underpants or nothing at all, Well she wont come out of the bathroom without a diaper.  She will sit in there forever until we put one on her.  She will wear underpants but only over her diaper.  I think it has something to do with the fact of pooping in her pants.  But we have tried that and she was not having it.  lol We do buy a size bigger so she gets air.   thanks for thinking about that though.!!! it is so nice that everyone on here is trying so hard to help us out and we really appreciate everything you say and all the advice you all have given us. 

Thank you for the Pear advice, we did not know any of that.   Appreciate that info as well and will watch that.

Will let everyone know as soon as i know anything at all, good or bad, results or no results.
thanks again everyone, I hope everyone is feeling okay today and have a great day


----------



## MisB

I'll never forget my dad's advice of "airing the kid out".   It may sound a little strange, but if she'll sit in the bathroom without a diaper, maybe let her sit in there and color for a little while or something.  I can tell  you after a month of prescription cremes, ointments, (this has been 23 years go, so my memories not that great), but I do remember  it was only days after using using just clothe diapers and "airing him out" that my son's rash cleared.  I hadn't thought about it ina long time.  I think pampers has gotten better with allowing air in the diapers, but they still have to be well contained not to leak.  I'm so desperate trying to think of things to help her.  My heart really goes out to you.  I'll keep praying and hopefully good news will come soon.  Keep us posted and God be with youl.


----------



## gypsigirl28

Bev- we will give that a try. Right now she dont have a rash just red and hurts from UTI. But we will difinelty see if she will do just that.  

To everyone:
AS FOR THE DOCS:  Well after calling docs and advocacy nurse we got NO<<< yes you are reading right NO!!!!! call back on anything. Not that we are surprised at all. This is the normal practice for this hospital and doctor. Kelley and I are currently deciding what are next step is and will let you all know when we finish the details.
:angry-banghead::angry-banghead::angry-banghead:

I really want one of these :voodoo::voodoo::voodoo:


----------



## madasins mommy

well...after getting into a heated argument with the advocacy nurse this morning and her contacting madasins Drs supervisor for his practice he finally decided to call me back this afternoon. He says that all of her results are normal...that she is to young to have either chrons, ulcerative colitis or irritable bowel syndrome...yet he started her on more medication. a lot of since that makes right?!? 
im am so far beyond furious with this man!


----------



## Lisa

TOO YOUNG????? I didn't know that these diseases had an age limit!!!!! GRRRR.......bleeping doctor~!!!!!!!!!!!!!

What kind of medication did he start her on?


----------



## Jerman

Kelly, Rosemary & Maddie, I sent you a pm, please check it out and share your thoughts when able. You are all just amazingly strong and dedicated, may all of these troubles fade soon and help you all to find better health and your smiles.

Jer

BTW there is a soap out there called Cetaphil which may ease the pain while washing up with her bad rash. I am sending along hugs and strength bless you all.:award2:


----------



## gypsigirl28

Hi everyone, As Kelley stated above what the docs said, You can imagine it has not been a good day in our house.  So much frustration, anger, and bad bad moods, going on.  
As she said "doc says she is to young to have any of these diseases but diagnosed her in November 2009 with UC and now she dont have it or anything but yet they are treating her for one.  Dont get it at all. 

They put her on Dicyclomine, supposedly for IBS.  I have no clue, all I know is I cant even think straight at this point and we are no further today then we were a year ago when this all started.  I am so sick of it that I want to scream. I am so tired of watching her suffer.


----------



## Dexky

Hey Rosemary, has the dicyclomine helped?  I don't know anything about it but if it helps at least that's something until she goes to the NY doc.  How has she been today?


----------



## Entchen

I am so sorry that your baby girl continues to suffer and that you continue to meet brick walls in your work to get her needed help. Am thinking of you all. Deep breaths, keep pushing forward.


----------



## gypsigirl28

Dexky said:


> Hey Rosemary, has the dicyclomine helped?  I don't know anything about it but if it helps at least that's something until she goes to the NY doc.  How has she been today?


well he was suppose to call the medicine in when he got off the phone but as of closing of the store tonight he had not done that.  So we dont have the meds yet.  We are going to give her the meds as soon as we get them and hope they at least help until we get her elsewhere.  

She had a couple of bad belly aches today and just laid around all day,  Was not interested in playing at all, if she was not laying down then one of us was holding her.  Hoping for a better tomorrow


----------



## madasins mommy

great news...madasins pathology slides have been sent off to the dr. in NYC. they were sent to him on july 30th....her new ones along with records on the way as we speak. dont know how the medication is working because well the good ol dr. never called it in until today so we havent yet to start her yet....i have to go pick it up this afternoon. with any luck they will give her some relief at the least. 
the dr. she has been seeing is not happy with me but thats okay because i dont like him either!!!!!!!!!!!! 
she is doing okay so far today no bellyaches. she has eaten a hot dog and balony. drinking a lot as usual. we will see her worst time is afternoon evening and night!!!!


----------



## gypsigirl28

We have a delima and need everyones advice on this one:::::

The medication dicyclomine that the doc ordered for Madasin says that if you have any of the follow do not take: Acid reflux, esopigus problems, Ulcerative Colitis, or are taking antacids.  Of course there are more but these are what stuck out to us: 

Madasin is on prevacid three times a day for reflux, cause she had the surgery when infant for reflux, her esopigus is damaged from this and in november they diagnosed her with UC.  So we are tossed what to do.  We want to give her the meds to help her but we are scared because of the above.  Do any of you have any advice as to what we should do????? we are tossing it so hard and are so confused.  We want to get her relief and give her the meds to see if that will give her any, but are afraid it will hurt her more if we do because of the above.

Please help with some advice

thanks everyone


----------



## GutlessWonder86

Hi Rosemary,

Are you on a first name basis with the pharmacist by chance? If not, I'd still call and tell him what you told us and get his opinion first as they are more updated w/the side effects of the medications than some of the doctors. Then call the MD and tell him that based upon what you've learned that you feel uncomfortable and want something different that won't interfere w/your daughter's health issues.  He should have known this before prescribing Bentyl (generic name), if you asked me, by reading her chart before contacting you. Most doctors do this.

I've been reading everything that you've posted about Maddie and it truly breaks my heart that you have to fight to get her test results that is total BS. FYI: I've learned from my experience and from my friends who work in the medical field, blood work info from a lab takes 24 hrs. and the preliminary report goes to the MD next day as well as urinary test results. The final type written report takes a few days. 

I really hope that you do report this idiot and give him hell. She shouldn't be suffering like this. Children's hospital in Buffalo sees on avg. 300 pts. a month of little people with IBD. If you live near there, feel free to bring her to the clinic there and they can take a look at her if she isn't any better. Dr. Cronin is outstanding. He use to be very active with the local CCFA chapter here as his wife was a member until she had a baby.  

Maddie deserves to be put on something for pain as she is entitled to as a pt. no matter how old she is.   If she does get any worse, do NOT wait, just take her to the ER immediately so they can give her something for the pain and to get the inflammation down ok. Don't take any crap from her MD if he yells at you for brining her in if she's sick. He's sitting on his tushy not doing a darn thing--ignoring your calls while you are doing what you can to make her comfortable. Definitely get a new doctor and tell this one to KISS OFF!!

Sorry to be so blunt but I've been where you are. I had a doctor like that when I was younger and my mom had to fight for me. She gave him hell and I got a new MD b/c she knew I wasn't faking my symptoms for attention. I was truly sick and his partner knew something was wrong & referred me to a GI that properly dxed me with Crohn's.

My thoughts and prayers are with you and Maddie.    Hugs to you.  ~Gutless Wonderwoman


----------



## madasins mommy

yes i am on first name basis with the pharmisist and i am going to talk to him first thing this morning about it. he is amazing and has been following madasins problems since this time last year. he is normally very helpful.


----------



## gypsigirl28

Okay kelley talked to pharmacist and dicussed the medicine.  We are giving it a shot and will let everyone know how it works for her.  Wish us luck,

Doctor in NYC is out of town until Monday


----------



## Dexky

Best of luck ladies!!!  I hope it gives her some relief until you get to see the doc in NYC!!!


----------



## gypsigirl28

Thanks everyone, We will let everyone know how it works.  She had it today, but she was not feeling good at all today.  very gasy, bloated, and miserable.  Kelley called the doctor in NYC but he is out this week, voluntering at a UC/Crohns Pediatric camp.  He will be back Monday and they said to call then.  I think it is great that a doctor of this magnitude would be voluntering at a camp.  
maybe this is the right doctor for Madasin finally!!!!!!!!!!!!!!!!!  We are hoping for nothing but the best! Anything that will help her and stop all the suffering.  The poor baby has been through enough.


----------



## Guest

keeping my fingers crossed for you all - i hope this weekend is a trouble-free one and that Monday comes around quickly for you. ((hugs)) x


----------



## DustyKat

Hey guys,


Keeping my fingers and toes crossed that little Maddie finds some relief and trouble free times ahead. Always thinking about you all.


Dusty. :hug::hug::hug::hug::hug::hug::hug::hug:


----------



## Jerman

gypsigirl28 said:


> We have a delima and need everyones advice on this one:::::
> 
> The medication dicyclomine that the doc ordered for Madasin says that if you have any of the follow do not take: Acid reflux, esopigus problems, Ulcerative Colitis, or are taking antacids.  Of course there are more but these are what stuck out to us:
> 
> Madasin is on prevacid three times a day for reflux, cause she had the surgery when infant for reflux, her esopigus is damaged from this and in november they diagnosed her with UC.  So we are tossed what to do.  We want to give her the meds to help her but we are scared because of the above.  Do any of you have any advice as to what we should do????? we are tossing it so hard and are so confused.  We want to get her relief and give her the meds to see if that will give her any, but are afraid it will hurt her more if we do because of the above.
> 
> Please help with some advice
> 
> thanks everyone



Hi Rosemary, I take the dicyclomine for my gut spasms. If you are unable to take to the doc about possible interaction call a local pharmacy. also just remembered that an oatmeal bath might help the little darling feel a bit better.


----------



## Crohn's 35

How is Madasin doing? Hopefully the pain has subsided a bit?  Keep us posted.


----------



## gypsigirl28

Thank Jerman, We did talk to the pharmacy and we are giving it to her. First day she was really dizzy from it and looked drugged up we will see how it goes.  We had to do the urine test again today, dropped that off at lab, now we wait for those results to see if UTI is gone or not.  We dont htink it is cause she still complains, but we are hopefull.


----------



## gypsigirl28

Hi Jettalady, maddie has been running fever today. Not sure why and what is causing it.  We are waiting for results of urine culture to come back to see if UTI is gone or not.  Yesterday she was dizzy and looked drugged up.  I will keep you posted


----------



## gypsigirl28

hi everyone, maddie is not feeling so well today, just layed around most of the day whinning.  She has been running fever and so forth.  We were hoping for a much better day today and will hope for such tomorrow.  Will keep you updated..


----------



## afman

the bently or dicyolome helped me out a good bit with the stomach cramps. i take nexum twice a day and the doc still gives me the bentyl. i hope she gets better.


----------



## gypsigirl28

We are trying it, the only problem that we are having is the pharmacist told us that we can NOT give her tylenol or asprin while on this med and she already cant take motrin so we dont know what to give her for the fevers.  They said we can give her one dose but that is it.  We have a call into the doctors office thursday and friday but have not received a call back yet.


----------



## DustyKat

Hey guys, 

I can understand why she can't take Aspirin but I'm not really sure why she can't take Panadol (Tylenol). If they are concerned about interaction in the gut can she have suppositories instead?

Dusty.


----------



## Silvermoon

I've spent the last half hour trying to find this info out as well, Dusty....  the only thing I can see for sure is:

#1 Do not mix with antihistamines...so like Tylenol PM or something, cause it will make her extra drowsy...

#2 POSSIBLY just the Tylenol and Bentyl together might make her too drowsy.... but if that would be the case, then I wouldn't take them DIRECTLY together, but space them a few hours apart.... It's not like she is going to get up and run a marathon anyway...lol.

And yes, I was thinking about the supp's too... ask the pharmasist about this....

Big hugs for everyone....


----------



## gypsigirl28

Thanks silvermoon and dustykat, never thought about suppositories. I guess to much on my mind,
 Anyway we are not sure why they said no tylenol except a dose or two but no more then that.  I looked it up to and all I can find is the tylenol pm, antiastimine. Which I know is because it will slow her system down to much and can cause her body to shut down. But I could not find anything on just plan tylenol.  I guess we will have to call back and ask as to why.


----------



## MisB

I'm so sorry that Maddie's still suffering so much.  It's just not fair.  Hopefully, if you can survive this weekend, that Dr KB in NYC can start putting all the pieces together.  I at least hope that she is able to find some comfortable, pain-free moments and that you two ladies can get some rest.  You are alll in my prayers.     With love and wishes for a peaceful night, Beverly


----------



## Dexky

....and the first thing Bev does is worry about someone else....What a beautiful lady you are MisB!!!  So glad to see you on here!!!  I'm sure you'll let us all know how you are soon as you make sure everyone else is OK!!!!


----------



## MisB

Dexky said:


> ....and the first thing Bev does is worry about someone else....What a beautiful lady you are MisB!!!  So glad to see you on here!!!  I'm sure you'll let us all know how you are soon as you make sure everyone else is OK!!!!


I posted how I was doing.  Do I detest a hint of sarcasm in your posting? :lol:


----------



## gypsigirl28

Well another day down, hopefully we can get in touch with Dr KB tomorrow in NYC and see what else we can do and if/when he wants to see Miss Maddie. We are so hopefull that this is our chance to get her the help she needs and on the right track.  She is still running low grade fever tonight and did not do much today. However she ate some dinner tonight, more then she has in the past few weeks. Yipee horray!!!!!!!!
fingers are crossed for tomorrows phone call.....


----------



## Crohn's 35

I hope Maddie has a good sleep and feels better!  Let us know what the doc says , hopefully you will get some answers fast!  Good luck!


----------



## Entchen

So glad that today went reasonably well; best wishes for an even better day tomorrow.


----------



## DustyKat

Hey guys,

Thinking about you all and keeping my fingers and toes crossed that you start to get some answers tomorrow....


:goodluck::goodluck::goodluck:


Take care, :hug::hug::hug::hug::hug::hug::hug::hug:
Dusty


----------



## gypsigirl28

Update!!! kelley called doctor in NYC, He has indeed received all slides and records regarding Madasin.  He is going over everything and they have meetings on Friday to discuss cases.  kelley was told to email him Friday morning and he would get back to us.  they also said to drop him an email about the new meds and what we may be able to do in the mean time.  he might not be able to give any suggestions until he goes over records, but it is worth a shot.  I will let you know what his response is regarding the email.


----------



## Crohn's 35

Good news!!!  So happy that you are all getting help for Madasin!  It will soon enough be here and get some relief for that precious girl!  Make sure you let us know!! Good luck!


----------



## gypsigirl28

hi Everyone,  We got email back from doc KB in NYC, he can not say anything about meds or the situation until they review everything on Friday.  We will have to wait a few more days to here from him.  Hopefully when we do it will be good news and some help.


----------



## Lisa

Good luck with everything! Already I am liking this new doctor...who actually ANSWERS calls and emails!!!!!...right there is a HUGE plus in my book! 

Give Miss Maddie a hug for me!!!


----------



## gypsigirl28

we agree pasobuff, we are not use to getting any response for a week or two. lol


----------



## Dexky

This is good!!  Can't wait til you can get her to see this new doc!!  Keep updating.


----------



## gypsigirl28

We did talk to her pediatrician today and according to him the dose they have her on for this new medicine is way to high, that is why she looks drugged up, dazed and gets dizzy just from one dose.  The GI has her on 10 miligram three times a day equaling 30 miligrams a day. According to him she should only be on maybe half that dose.  He also told us that if she takes this medicine three times a day like the Gi says, that it will stop the prevacid she is taking three times a day to stop working.  Which will damage her esphogus even more then it already is.  He told us to lower her dose to 15 miligrams a day.
I can not believe that the GI doc would give a two year old an adult dose of this med.  According to what I read on this drug the reccommended dose for an adult is 40 miligram a day.  
Yup we are so glad we are in the process of getting another doctor.


----------



## Guest

sounds like you're actually getting somewhere now!

it's diabolical that a GI would give such a strong dose to a little 2yr old - maybe after all this has calmed down & you've got Madasin back on track, you'd have cause to make a complaint..

i hope relief is well on the way now for Madasin, and you all - let us know what happens. ((hugs)) xxx


----------



## GutlessWonder86

I am so happy that Maddy's new GI is working out for her and getting back to you in answering your questions/concerns. Your little angel needs to be pain and symptom free.

That old doctor needed to go. What a jerk!!!! Heck, he shouldn't even be in practice with the way he treats people. His bedside manner stinks!!!!


----------



## DustyKat

Thinking about you girls and sending tons of healing thoughts and hugs.....................


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


:getwell:    little angel. :kiss:


In my prayers, 
Dusty


----------



## Crohn's_Doll

Thoughts and prayers coming to you from Canada!! Hoping lil Madasin gets some relief soon.


----------



## gypsigirl28

Well we have two more days until we here something from NYC oh how we are hopefull this doctor will help miss maddie


----------



## DustyKat

Keeping my fingers and toes crossed that you find the answers you seek!

:hang:

Dusty.


----------



## Guest

DustyKat said:


> Keeping my fingers and toes crossed that you find the answers you seek!
> 
> :hang:
> 
> Dusty.


me too!


----------



## madasins mommy

Woo hoo one more day until we hear from dr. Kb in nyc!!!!!


----------



## madasins mommy

Okay....we got word from dr. Kb in nyc. He says madasin does not have crohns or uc. We are trying her now on ibs meds. Hopeful they will work. If not off to another dr in october!!!!


----------



## Silvermoon

Well that kinda sucks.... back to not knowing what is wrong again.... 

Well, praying that the IBS meds will give her some relief.

((((((((((( Maddie and Family ))))))))))


----------



## gypsigirl28

Silvermoon said:


> Well that kinda sucks.... back to not knowing what is wrong again....
> 
> Well, praying that the IBS meds will give her some relief.
> 
> ((((((((((( Maddie and Family ))))))))))


 yes I agree it does suck for her to not know what the heck it is.  We are happy that he gave us his time and looked through her information, Now we sit wait and hope for the best with the new meds.  if not we will be off to Ann harbor Michigan to a GI doctor there.  Keep your fingers crossed and hope for the best is what we are doing now

We do have a question though, being that they say she dont have UC or Crohns, does that mean we have to leave the forum.  Because we DO NOT want to leave here, we get so much support and advice, along with the most important factor that we met and have very good friends here???????????


----------



## Lisa

Oh goodness NO!!!!!.......of course you don't have to leave!!!!!.......


----------



## Dexky

Is she still bleeding in her diapers and barely eating??  Or has there been some improvement?


----------



## gypsigirl28

Dexky said:


> Is she still bleeding in her diapers and barely eating??  Or has there been some improvement?


Hi dexky,  No she is not bleeding in her diapers, that stopped a few days after procedures, But she still is not eating much at all.  A few bites here and there, but nothing like she was eating before they took her off the pentasa.  She is still getting bellyaches and diarreah.  She will have a diaper that is okay once in a while but still has the diarreah most of the time.  We are hoping this new med helps with it.


----------



## MisB

Hi ladies.  I am so sorry.  I thougth for sure Dr. KB was going to be the answer.  Let's not give up.  Someone  out there needs to start taking Crohn's seriiously.  Mayby we should all sign up for one of those new talk shows and get a bunch of us together and let the world see and hear what we have to go through.  Questsion is, which show would give it the proper attention it needs.  Young toddlers like Maddie, Young EJ, Sara, Jeff, etc.....I can't name them all, but you all know who you are.  Maybe it's time we stand together and start getting the help we need.  Sorry for the tangent.  Long, hard day, just gt meds, you know wht they do to me. II'll be giving an update in a minute.  "till then, hang in there and ia hope maddie getts gbetter.


----------



## Crohn's 35

> We do have a question though, being that they say she dont have UC or Crohns, does that mean we have to leave the forum. Because we DO NOT want to leave here, we get so much support and advice, along with the most important factor that we met and have very good friends here???????????


Most certainly not, even if is proven she doesnt have Cd or UC.  The problem with a diagnosis, they can be missed diagnosed too!  This is a IBD forum not just CD or UC!  Maddie is having problems now and you all need us too!  Please anyone on this forum has the right to continue, support means alot, especially on those trying days when you want to give up,  

Always keep us updated on her, alot of people read these posts and we learn too!:wink:


----------



## DustyKat

Hey girls,

I'm so sorry to hear that the doc didn't work out, that sux. As the others have said, NO you don't have to leave forum!!! Your little angel is still suffering with something, we just don't know what and Maddie isn't the only one here struggling day by day with no answers. Please continue to keep us posted on how she is doing as we are all thinking of her.

Take care, :hug::hug::hug:
Dusty


----------



## gypsigirl28

Hi everyone, Not much has changed with Maddie, still has the bad stools going on and still not really eating much, a few bites here and there.  Still hoping and praying for a turn around!!!!!!!!!!!!!!!!!!! She wouldn't even eat any birthday cake that she helped make and decorate for me.  But she had lots of fun helping lol


----------



## Guest

hi Rosemary... wow, what a surprising result! i was convinced the doc would say UC or Crohn's... 

i hope the IBS meds calm things down for her - at least she's on something now and you have some sort of direction & plan.

please don't even think twice about whether you should stay with us or not... you and Kelley and Madasin are a part of our family now, we care about you all & particularly little Maddie - whatever her diagnosis turns out to be, we are here for you all and always will be. xx


----------



## gypsigirl28

thank you everyone for your support.  Finding this forum is indeed the best thing I have done.  your support and advice means the world to us.  We print them all out so Maddie will know in the future just how much support and love you all give to her and us.

Nothing has changed as of yet.  Still not eating much and still not feeling to good.  But we will give the meds some time to kick into gear and hoping for the best.


----------



## madasins mommy

I agree with mom, thank you all so much. this really is an amazing place.


----------



## Crohn's 35

I am glad both of you are here!  Everyone needs support even if you dont have Crohn's.  Spouses and children are suffering and that is very hard on the caregivers too.  My husband hates that there is really nothing he can do but just be there for me.  Learning from those who have this disease should help madasin in her future!  Anything we can do for you 3 helps us feel better too!  Big Hugs!


----------



## gypsigirl28

Hi everyone, Maddie actually ate some food today.  We are happy about that.  But this evening she did not feel to good and was whinny and crying alot. She finally feel asleep, hopefully it wont be a long night.

I hope everyone else is doing okay


----------



## madasins mommy

yups she ate one whole can of soup and 1/2 cup of mac and cheese!!!!!! wooooo hooooo!!!!!!


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## gypsigirl28

Hi everyone,

Well maddie did not have such a good day today, she is very clumsy, not sure if it is the meds or not.  She did eat a little today, which is good. But was not feeling to good, very whinny and miserable, all she wanted was to be held.
It has been a long day!!!


----------



## amirah

hope maddie is feeling better and has a better day tomorrow, thinking of you all.love amirah


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## DustyKat

Hey girls, 

Thinking about you and so hoping that things settle soon for you all......................................


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


:getwell:    soon Maddie.


Dusty.


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## madasins mommy

miss maddie is doing alright. she had a so so day. she wasnt as whiny as she has been but still very clumsy. she played a little more...but didnt eat much at all.


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## Dexky

Glad she had a better day Kelley!!  Hope things continue to get better for her!!  What do you mean she's clumsy??  Is she hurting herself?


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## gypsigirl28

Dexky said:


> What do you mean she's clumsy??  Is she hurting herself?


Hi Dexky,  I really think the clumsiness is actually dizziness and being shakey alot. Because she wasnt like this before. She falls over, trips over her own feet. It seems like she is off balance or something.  Yes she has scraped up her knee a little and gets a few bumps.  But we try to keep one eye on her at all times so it dont happen but at 2 yrs old it gets a little difficult at times.


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## Crohn's 35

Hopefully Maddie improves daily... btw when my daughter was 2 she had so many bruises from hitting her head, people would look at me like I beat  her LOL.  Clumsy and fell alot!  One bruise would just be turning yellow about to disappear and bang... another one.  Is her hearing good?  Have they ever been checked? Some times that can make them clumsy or ear problems.  Hugs to Madasin!


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## gypsigirl28

Jettalady said:


> Hopefully Maddie improves daily... btw when my daughter was 2 she had so many bruises from hitting her head, people would look at me like I beat  her LOL.  Clumsy and fell alot!  One bruise would just be turning yellow about to disappear and bang... another one.  Is her hearing good?  Have they ever been checked? Some times that can make them clumsy or ear problems.  Hugs to Madasin!


HI Jettalady LOL Kelley was like that to when she was little to but that was because of her ears lol 

Yes her hearing has been checked and it is fine.  I really think the clumsiness is more dizziness and from being shakey because she was not like this before. We just try to watch her closely so she dont get really hurt.


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## madasins mommy

well...madasins day wasnt all the great today. very whiny and miserable. she didnt eat ANYTHING all day. she asked for things...we made it and she didnt take one bite.


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## madasins mommy

and i agree with mom...its more dizziness and shakiness....you can see her legs and hands shaking...and she tells you she feels woo hoo silly a lot and lies down.


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## Dexky

So you think it's weakness from lack of nutrition?


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## Lucy

Just heartbreaking to hear of such a little child going through all this. She sounds like such a trooper. I wish only the best for all 3 of you. My thoughts and prayers are with you.


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## gypsigirl28

Dexky said:


> So you think it's weakness from lack of nutrition?


hi dexky, I have to say I never thought of it beung fron lack of nutrition, it very well could be... But how do you make a 2yr old eat if they refuse and wont drink the nutrician drinks?  we have tried everything we can think of.. Any suggestions are welcome trust me


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## Lucy

I emailed the Dr. Oz show a few months back asking him to do a show on crohn's, but never heard back.


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## Crohn's 35

gypsigirl28 said:


> hi dexky, I have to say I never thought of it beung fron lack of nutrition, it very well could be... But how do you make a 2yr old eat if they refuse and wont drink the nutrician drinks?  we have tried everything we can think of.. Any suggestions are welcome trust me


Wow she wont even drink the chocolate Ensure?  There is Pedisure here in Canada, I am sure it is there.  All flavours.  She is probably lacking nutrition.  Maybe seeing a nutritionist for kids may help. Poor kid, she has to eat something. What about digestive enzymes in her food to break it down so she doesn't cramp.  Sorry just trying to help.


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## gypsigirl28

Jettalady said:


> Wow she wont even drink the chocolate Ensure?  There is Pedisure here in Canada, I am sure it is there.  All flavours.  She is probably lacking nutrition.  Maybe seeing a nutritionist for kids may help. Poor kid, she has to eat something. What about digestive enzymes in her food to break it down so she doesn't cramp.  Sorry just trying to help.


Hi Jettalady, Please dont be sorry at all. We are encourging any suggestions...
No she wont drink any ensure, we have tried pedisure, nutrapals, we even bought the bars to see if she would eat them, result was all the same.  
The digestive enzymes in her food would  be a great idea if we could get her to eat anything.  She takes a bite and says "I full dont want no more"  We try  everything to encourage her and let her pick what she wants to eat just to get her to eat it, says she wants it so we make it and Nothing she wont eat it.  Not sure if she is afraid of a bellyache or if she actually feels full because she is so bloated all the time.  her poor little belly is really bloated and looks like her favorite pass time it eating..


----------



## DustyKat

When do you next see the doctor?

Dusty. :hug:


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## gypsigirl28

DustyKat said:


> When do you next see the doctor?
> 
> Dusty. :hug:


we dont have any appointments for her, if this med dont help we will be taking her to Ann Habor MI.  that is our next step.


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## Dexky

How long did the doc say it should take for this med to kick in?


----------



## MisB

I am so sorry the Dr. KB didn't work out.  I had such high hopes that he was the answer.  Now you have to go all the way to Michigan?  I swear something needs to be done.  Poor little Maddie does not need to keep going through all this.  and neither do you.  I can't believe we have agencies to help provide services to sick children all over the world and we can't take care of one little girl here at home.  It makes me furious.  I wish there was more I could do, but all I can do now is keep her in my prayers, which I do.  Please let me know if there is anything at all I can do.  Please give Princess Maddie hugs and kisses and get well wishes.


----------



## gypsigirl28

Dexky said:


> How long did the doc say it should take for this med to kick in?


Dexky, He did not say anything at all about how long it would take, as a matter of fact all he said was he was treating her with it.

MisB, PLEASE PLEASE dont be sorry that dr kb did not work out.  It is not your fault at all, If it wasnt for you we would not have even had that chance.  No matter what you are still Princess Maddies Angel in our eyes and hers.  You did more for her then some of her own blood relatives.
Yes if this med does not work we will have to make the trip of 16 hours one way to MI.  The hospital there as agreed to see her and we already have a referral for them.   We were hoping that would not have to be and the meds would work.  It just dont look like that is what will happen being that she is not eating and nothing as changed.  thank you for your prayers and wishes


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## Dexky

How much longer are you all going to give this med. or are you already trying to get an appt. with the doc in MI?

Were there any improvements yesterday?


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## DustyKat

What is your gut feeling on this? If you don't feel things are taking a turn for the better then I would be seeking out the docs sooner rather than later. 

Take care, :hug:
Dusty


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## gypsigirl28

We are trying to get the appointment now, just waiting for them to give us one.  we are not going to wait until Oct like was orginally planned.  

dusty- our gut intinct on this is something is wrong and there has to be a reason for her belly to be bloating like it is and something is making her not want to eat.... we just are not sure what it is.


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## madasins mommy

okay well..im not sure where to start or where to end...but i can tell you that there is no improvement in madasin. her diapers are still a nightmare...still getting belly aches and not interested in eating much of anything at all. the pediatrician here is a quack...right along side her GI in vermont. we are still waiting to hear something from Michigan. we are hoping for a break soon but by the looks of it it will be a long road for her.


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## DustyKat

Thinking about you all. I agree with Bev's suggestion in your Vent Away thread. 

Lots of love, :hug:
Dusty


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## gypsigirl28

Hi Everyone, On top of everything else Maddie is not feeling well has a sore throat and getting another cold!!!!  Nothing else has gotten better for her so now she has this to deal with as well.   Just want we needed on top of everything else.  Poor babygirl!! :yfrown:


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## Brindle

I am so sorry that your little baby doll is so miserable. Have you  considered takingher to Boston's Children hospital. They have a request appointment page and for Gastro/ Nutrition selection there are many divisions to choose from. 

My nephew had heart surgery there when he was 1.5 years old and they were wonderful. He is now 24, with no heart issues at all. We also have some friends that had a baby with a heart defect. only 3 chambers were working. Alec has had 3 operations and many many procedures and he and his parents can not speak highly enough about everything that is involved with the hospital.

Alec's first operation was around 3 days old. He is now 6 and though he has a pacemaker, he is a normal little boy that loves life.

Point being, maybe it would be worth a shot to take Maddie, where not only do they know how to treat whatever is going on with her, but also know how to treat/ interact with someone her age.

If you don't want to wait for an appointment, I would take her to the ER.
http://www.childrenshospital.org/clinicalservices/Site1922/mainpageS1922P6.html

But if you feel it can wait then make her an appointment and just know that they do offer ER options.
Here is the main website. They also have a request an appointment section.
http://www.childrenshospital.org/

Best of luck and hold strong!!!!


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## Brindle

I am sorry if this question has already been asked, answered or both. I tried to search but my computer kept timing out so I figured I would just post you. Has Maddie been tested for Celiac Sprue and or Lactose Intolerant ?  I would assume that they would have done these test right off the get go, but some of your post indicate Dr.'s with out common sense.  Just a thought.


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## DustyKat

Hey guys, :bigwave:

How is Maddie going???

Thinking about you all, :hug::hug::hug:
Dusty


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## gypsigirl28

Hi Dustykat,  

not to much has changed with maddie.  She a little more today then she has been, which is a plus. Of course we are having such a change in the weather and it is much colder here now then it had been so we all have a cold and feel miserable. But we are dealing with it.  We have not heard anything from MI as of yet.  We did do a diet change, We are trying out the diet per your blood types, I will let you know how it is going. 
Take care


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## balmerhon

I'm sorry to hear you're going through such a tough time with Maddie. 

Aside from celiac (has she been tested for that with a biopsy, not just blood tests?) she also needs to be tested for cystic fibrosis as well, especially if she is prone to respiratory infections.

Additionally, you might want to get in touch with a hospital that has a good children's feeding disorders clinic. For example, here in Baltimore we have Kennedy Krieger (Google Kennedy Krieger Feeding Program - I can't post URLs yet).

It's possible that some of Maddie's aversion to food is psychological as a result of her illnesses. It only makes sense, if she associates food with making her feel sick, then she's not going to want to eat, is she? It's a vicious cycle.

Good luck!


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## Dallies

Hiya Rosemary and Kelley, how's little Maddie doing, much love xxxxx


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## madasins mommy

madasin still had no improvement. she is actually very sick right now. she has an upper respiratory infection and a double ear infection. they started her on medication today for it. she just woke up with it yesterday morning. we are keeping close eye on her because her immune system is not good at all. we will keep updated.


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## Dexky

Sorry that this just keeps going and going Kelley!!  Does she often get ear infections?  What meds is she on for this?

Have you heard from MI yet?


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## chloesmum

hi just joined the site and read your story, so sorry for your little girl i hope she gets sorted soon!


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## gypsigirl28

Hi Dexky,  Yes she has had alot of ear infections.. She is on amoxicillin for it. This is night number three that she has been up sick and crying. Now the two boys have it to.. 
Yes actually we did get a message from MI today and they said they will not see her.  We have to call them back cause we are not sure what their reasoning is for not seeing her.  They say it is because they dont do self referrals but we had a doctors referral to go there.  It is so frustrating, that we just dont know what to do next.  I guess we are back to square one again and have to contact another place.


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## Brindle

Have to tried CHAD Children's Hospital at Dartmouth?  I go to Dartmouth. Great Hospital.
http://chad.dartmouth-hitchcock.org/
Good luck, my thoughts are with you.


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## Crohn's 35

Her immune system is really out of whack.  Just a though to try and get her some probiotics in yogurt, too young to swallow a pill.  I am at a loss too.

Hopefully Brindle just gave you a great new start! Hugs to you all!


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## Jerman

I am soooo sorry to hear that Maddie is still having such an awful time. I know that you are all going through so very much. It is great that you are having so many members of the forum trying to hook you up with good docs. It also must be a bit overwhelming in the sense that you are so very desperate to help your lil angel, you must have times where you just don't know which direction to turn. Maddie's Mommy, I sent you a text today regarding someone in the boston area that is supposed to be the best in the business with Abdominal Disorders, and wanted to add yet another piece of information, hopefully that will help and not overwhelm you all. 

My first son was born with Meconium Peritinitis and we nearly lost him several times as he spent the first six months of his life in the Neonatal care unit in Boston Children's Hospital. The first night he went by ambulance from the Cape to Boston and one doc actually told us to hug him and kiss him because he had a small chance of making it through the night. He did and we spent those 6 months by his side each day touching and talking to him wherever he was not covered by monitors, etc.. 

Tomorrow morning he is the starting nose tackle for the freshman football team. He still carries the scars on his belly and I in my heart from that time but he has been and will always be my hero. The point to all this is not to upset you or anyone who reads it but to realize that there is hope. I truly believe that Boston Children's is the best in the world- children literally come there from all continents and the staff is amazing. Please consider giving them a call. You three are always in my thoughts and prayers, I will ask Colin to get a sack for Maddie tomorrow. Stay strong you are all amazing and I admire your love and tenacity for your angel.


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## gypsigirl28

Thanks everyone for you support and recommendations.  We will check into them.  
tonight Maddies ears seems to be doing better. However it sounds like she now has the croupe on top of everything else.  besides that we are thinking she also had strep throat when she went in for her ears, They did not look in her mouth because they said there was no point in it when they were going to treat her ears anyway, But her older brother now has strep, running fever of 103.8 and is very sick, and adian (the baby) sounds like he has the croupe now to.  Our house is just been really crazy with three whinning, crying sick children... Four nights with no sleep in this house.  
hoping they are somewhat better in the morning. 

JERMAN: Thanks for the information on Boston,,, She had an appointment scheduled for Boston back in March 2010, however it was canceled because they said the doctor here did not send them a diagnoses with her records so they would not see here.  Not sure why exactly, being that we were trying to get a diagnoses and that is why we wanted to bring her there.


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## Jerman

Sometimes the docs just don't freakin' get it, and I can understand that they are human too, but it seems as though you three have just been deluged with incompetent medical staff. I think of the three of you each day and hope things change for the better very very soon.


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## DustyKat

Hey guys, :bigwave:

How are you all doing? I am so hoping things are settling down for you. 

Thinking about you, :hug::hug::hug:
Dusty


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## gypsigirl28

Not much has changed here.. Maddie still has a very bad cough and is going back into the docs in the morning for her ears.  her meds have ended and they still hurt her.  
Nothing else has changed for her... Just wanted to give update.


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## DustyKat

Oh, sorry to hear that. Let us know how you get on at the docs tomorrow.

What's your next move with with the Gastro docs??

Thinking of you all, :hug::hug::hug:
Dusty


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## Dexky

Have they mentioned putting tubes in her ears??  My oldest daughter had them before she was three!!  She was an entirely new child after that!!!


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## gypsigirl28

Dustykat- we dont have an appointment with GI, we are in the process of trying to find one to see her... We keep hitting a wall, just when we think someone will see her, they decide not to... 

Dexky- No they have not mentioned tubes in her ears at all.  Kelley had two sets of tubes in her ears when she was little and they worked until they fell out.  She still has trouble with her ears..  Not sure what will happen with that.


----------



## DustyKat

Oh I'm so sorry to that hear that. Please let us know when you find someone. Can your GP do a referral?

Dusty. :hug:


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## Dexky

Sorry guys!!  I don't know what else to say!!  Good luck, someone surely will see her!!


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## gypsigirl28

Hi everyone:  Well Maddie went to the docs today for her ears.  They said one is better, the other is still red and has fluid in it.  "But that is okay, it will get better"... 
Not sure what the hell that is suppose to mean but they did not give her any other meds for it.   her antibotic ended last saturday, so I would say if that did not work, they should have given her another one.  But I guess they are the MD's and we are not. 
As for everything else, there really is no change in the D or the bloating.


----------



## Jerman

Hi guys, I just wanted you to know you are always in my thoughts and prayers. My heart and head keep telling me to gently push Boston Children's Hospital for you guys. Please consider the options that Brindle mentioned earlier. I know it is a distance but it is an amazing place. ((((((hugs)))))) to all of you.

Jer


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## gypsigirl28

update on Madasin:::: well she has the upper respirtory and double ear infection for the second time in a  month...... As for everything else nothing has changed......


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## Dexky

Will they even entertain the idea of the tubes?


----------



## gypsigirl28

tubes have not been mentioned, they said it was allergies and wanted to put her on cingular,  But we said no cause it is not allergies, if it was they rest of us would not get sick when she did.....


----------



## rottengut91

I find myself avoiding your updates because it breaks my heart the misery this poor little Angel is going through.  I can't believe the doc won't do tubes.  My son had chronic ear infections since birth.  He had first pair inserted when he was two.  They made a dramatic difference.  He didn't get another infection until those tubes had fallen out.  Last August ('09) he had tonsils/adenoids removed and another set of tubes inserted.  The only time he has problems is if he forgets to put earplugs in before swimming.  The tubes have totally improved his quality of life, and mine for that matter.  Watching your child suffer is worse than being sick oneself.


----------



## Jerman

Hi Ladies, It is so unfair that Maddie and you continue to go through this trial without competent medical intervention. You are in my thoughts and my own version of prayer each and every day, I hope that something miraculous happens and you get the right doc for her problem. If I was able I would drive to Vermont and bring you to the Boston children's ER like Brindle had suggested a while back. Someway, somehow the love and dedication you have for each other and Maddie will get you through this. ((((((((HUGS))))) for the whole family. you all have my undying admiration for your strength-keep at it and consider Boston--not at all meaning to be pushy but my own experience tells me to keep tossing it out their for your consideration.


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## gypsigirl28

It has been a while since I have posted on Maddie and that is for a couple reasons.... there isnt anything different to say as of yet.  We are still plugging along trying to get things moving for her..... Second we have pretty much had our hands full with them being sick.  Along with Maddie going through this ordeal, Adian (kelleys 10 month old) as been sick as well.  Boy oh boy..... The good lord really knows how to test someones faith is all I can say.  There is a lot going on with him as well


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## Lucy

Those poor babies. All of you have had so much on your plate. I do hope things start to get better soon. Sending you my thoughts, prayers, and lots of hugs.
:getwell::ghug::ghug::ghug::ghug:


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## Jerman

Hi Rosemary,

Hoping the very best for you, Maddie, Mom, & the whole family. I think of you guys very often and am sending you thoughts of strength and healing. I hope with all of my heart that this ordeal improves for you all soon. 

Jer


----------



## gypsigirl28

Hi everyone..... Update..... Maddie goes to GI November 16th...... Along with Baby Adian....  We are hoping to get somewhere, but we will see...
She is going back to original GI because we can not seem to locate one that will see her..


----------



## Silvermoon

Hopefully all goes well and you get some answers.....

Thinking of you all (((((( HUGS )))))))


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## DustyKat

Thanks for the update guys. I so hope you find some answers and little Maddie can get some relief. Hope all goes well with the baby too, what a worrying time for you all! 

:getwell:     little guys............:hug::hug::hug::hug::hug::

Always thinking of you, :kiss:
Dusty


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## Jerman

Here's hoping that is a magical day for you where you can start to get some answers and relief for your little angel. ((((hugs)))))


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## gypsigirl28

Update... maddie was up screaming most of the night last night. took her to the doctors this morning to find out she has yet another severe upper respiratory infection...


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## Dexky

Rosemary, have you all had your home tested for allergens such as mold?  I've heard horror stories about hidden mold in walls causing all sorts of problems.


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## gypsigirl28

Dexky said:


> Rosemary, have you all had your home tested for allergens such as mold?  I've heard horror stories about hidden mold in walls causing all sorts of problems.


Hi Dexky... No the house has never been tested, but yes there is mold in a closet.  I have removed it but.... We live in an upstairs apartment, and the front door goes down and basement stairs are their.  Alot of mold comes from basement.  unfortunitly right now we can not move.  but hopefully march we will be able to...


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## Jerman

Smart thinking for you from Dexky, there may be a connection. You continue to be in my thoughts and prayers each day. I hope better times are coming for you all very very soon. ((((((hugs)))))


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## gypsigirl28

We are in Vermont for Madasin and Adian's appointments.. will let you know what they say..
Thanks everyone for your support and advice


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## Jerman

Sending you hope, love, & strength for your appointment today. Hope that you get the help you have been looking for for so long. (((((((HUGS))))))))


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## DustyKat

Thinking about you all and I hope all goes well for little ones. 

:goodluck::goodluck::goodluck:

Keeping my fingers and toes crossed, :hug:
Dusty


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## Dexky

Any news Rosemary?  I'm glad you finally got to see someone....anyone!!!


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## gypsigirl28

Madasin and Adian go to the GI tomorrow afternoon. Will update when I get back.  Adian went to ENT today... Thanks for all the support, thoughts and strength everyone


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## gypsigirl28

Well Madasin and Adian had there appointment with the Gi today..  This is what he is thinking now.  being that they both have the same issues and get a lot of upper respirtory infections, he is having them both tested for cystic fibrosis.  They are suppose to call us in the morning to let us know when the testing will be done.

On top of that test madasin has to have a complete allergy testing done. They will let us know when on that tomorrow morning as well.  
I will let you all know what they say....

Thanks everyone


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## Jerman

Sending my own version of prayers, strength, love, and most of all hope!
I really feel something telling me that you are at least going to get some answers. ((((((((HUGS)))))) from big ole jerman.


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## DustyKat

Oh my, how are you all dealing with this latest news, are you okay? 

Thinking of you everyday. Sending you loads of love and hugs........

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

Take care all, :hug:
Dusty


----------



## Jerman

Hoping all of the little ones and your wonderful family (including you) has some treatment and answers really soon.


----------



## Guest

thinking of you all, especially the little ones, and hoping you get some answers and positive direction soon!

just a thought - if you at all suspect that it's something in the house air that's affecting the kids, you can buy an air purifier.. worth looking into.

good luck - please keep updating us!


----------



## gypsigirl28

Thank you everyone for your support.  It really means a lot to us.  We are trying not to let it bring us down or bother us to the point of crazy until we know for sure what the results say. Of course that does not mean that our minds are not running 100 mph.... 

Both Maddie and Adian go back to VT for the testing on November 29th.  We will have the results by the end of that day.  

We are praying that it comes back negative..... 
We have had a couple air purifiers in the house and it has made no difference with them. Thank you for all the suggestions as well.


----------



## Dexky

Did anything show up in Madasin's allergy tests?


----------



## gypsigirl28

Dexky said:


> Did anything show up in Madasin's allergy tests?


Hi Dexky,  Madasin does not have the allergy test done until January 17th


----------



## gypsigirl28

Well four more days until CF testing is done.. Will let you know what they say. We are suppose to have the results by the end of day on Monday.


----------



## Jerman

Calling in my own angels and sending you strength, love and hope for excellent medical care and results for your babies and the adults to get solutions and relief.


----------



## gypsigirl28

Cystic Fibrosis testing for both madasin and adian came back NEGATIVE!!!!! We are happy about this. Back to the drawing board once agian.


----------



## Jerman

Great news! Hang in there good things are coming!


----------



## gypsigirl28

Thanks jer... It was really Great news and we are very happy about it!!!!! We just want the suffering to stop..


----------



## amirah

Hi rosemary thats great new im so happy for you guys, so whats the next step? maybe the allergy test will bring something.


----------



## Jerman

Any updates Rosemary? I hope things are going as well as possible. ((((hugs))))


----------



## Dexky

gypsigirl28 said:


> Cystic Fibrosis testing for both madasin and adian came back NEGATIVE!!!!! We are happy about this. Back to the drawing board once agian.


Thank goodness!!  This is one time, I'm glad you guys are back to square one!!!


----------



## gypsigirl28

We agree 100% with that Dexky... Waiting to hear what the next step is going to be... They dont seem to want to give us any direction as of yet!! We will see what tomorrow brings. Madasin is getting another cold, her breathing is not good tonight and of course diapers are getting worse again.  
Will let you all know more as soon as they return our calls..
thanks everyone for you support. We are still waiting for the good things to happen. Instead we now have two children with the same issues... egh


----------



## amirah

Hows madison?


----------



## gypsigirl28

hi Amirah,,, Not much has changed for Maddie.  She is still having really bad diapers and so on... She goes for allergy testing on January 17th.  Other then that she does not have an appointment to  go back yet.  Still waiting to hear what the next step is besides that.


----------



## DustyKat

Hey Guys,

Thinking about you all. Continuing to keep you in my thoughts and prayers. 

Loads of love, :hug:
Dusty


----------



## Jerman

Hoping things come to some resolution, the best christmas present i could think of would be health for the babies and happiness for all of the family. I think of you all each day.


----------



## DustyKat

Hi Rosemary and Kelley, :bigwave:

How are all your little angels going? 

Thinking of you all and hoping the new year is kinder and more peaceful for you all.

Lots of love, :hug:
Dusty


----------



## gypsigirl28

Hi Dustykat,,

not much has changed in our house. Madasin goes for her allergy testing January 17, 2011, adian just seen a lung doctor and his lungs are okay but something is not right with his airway, he goes back to ENT doctor Feb, 15, and the lung doctor wants the ent doc to do a scope which he assist in so he can do his own at the same time.  I will let you all know what happens with both kids.  
Madasin is not any different then she was before, still sick all the time and adian is right there with her.  They both have the same symptoms and issues.  
We have been back and forth to VT so much for both of them.  
I hope everyone has had a good start to the new year.


----------



## Dexky

Hang in there guys!!  Hopefully, the answers will be just around the corner for both of them.


----------



## gypsigirl28

Thanks Dexky... We have nothing else we can do but hang on and pray for answers to come soon.

To Everyone: Kelley would like me to apoligize for not being on here for so long. Her computer crashed and does not have one at this time.  She will be back on when she can.. But wants to thanks everyone for there support...


----------



## gypsigirl28

One more week until Maddie goes for allergy testing. hoping for answers...


----------



## Astra

Fingers crossed for you Rosemary & Kelley, and of course, Maddie.
Big hugs your way!
xxx


----------



## gypsigirl28

Finally....First thing tomorrow morning maddie has her allergy testing done.  Then we will find out where we go from there...


----------



## DustyKat

I will be thinking about you all and hoping you can finally get some answers and direction..............

:goodluck::goodluck::goodluck:

Lots of love to you all, :hug:
Dusty


----------



## Dexky

Fingers crossed for you all!!  Let us know how it goes Rosemary!!


----------



## gypsigirl28

Allergy testing is complete and Madasin has NO allergies at all.  They tested for things that would cause her symptoms and they were all negative, including three kinds of mold.  We are back to square one agian and have a call into the GO doc to see what is next..


----------



## Dexky

Ugh, sorry ladies!!  Hoping for answers soon!


----------



## DustyKat

Bugger!!! How frustrating for you all. Please keep us up to date with where you go from here. Look after yourselves guys and your precious little ones................

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

Thinking of you, 
Dusty


----------



## balmerhon

Sorry to hear this. It's so frustrating when you don't have answers.

They obviously did not do full allergy testing, though, as the ones my son had took more than a day. He had food patch testing at the University of Maryland. It's still a relatively new area of food allegies but it takes almost a week to do.

Also, you might want to look into the Eosinophilic family of GI problems. http://www.apfed.org/egid.htm

And finally, I think I've mentioned this before, but getting Madisin to a feeding disorders clinic might also be helpful.

Good luck!


----------



## amirah

Hi rosemary, so sorry you dont get any answers, it might be worth looking at esopillic disorder, my friends little boy has just been diagnosied with it .


----------



## Guest

wow i am stunned... been waiting to hear the results, and find out what direction the docs are going to take things based on those... 

i guess you've got no choice but to just hang on in there and keep pestering until someone hits on what's going on.

((hugs)) to little Madasin & Aiden & to you all.


----------



## madasins mommy

hello everyone. sorry im not on much anymore. my computer well it died!!!! 
for an update...i have bought a BIG medical book. everything so far is pointing towards either UC or CD. we found out the dr keeps taking biopsies from the SAME places exactly EVERYtime. NO WONDER WE ARE GETTING NO WHERE!!!!!!!


----------



## amirah

Hi kelly, nice to see you bI cant belive the doctor is doing that , whats your next step? How is madisin doing?
love to you all


----------



## madasins mommy

my next step is wiating on dr to call back. I think I have it allfigured out I have crossed out an ENTIRE sheet of paper on what it is NOT. im waitin on a call. he has one last chance to listen then off to someone who will I AM SOOOOO HAPPY AMIRAH THAT LEYA IS DOING BETTER!!!!!!!


----------



## amirah

hope it gets sorted soon, stand your ground as a mother always knows best, and knows there child.keep us updated hun x


----------



## gypsigirl28

Hi everyone.... Well after waiting three weeks and leaving a zillon messages, kelley contacted the hospital advocacy people and two people called back, now waiting to here from the doctor.  It is so very sad that the doctors can care so little about children that you have to contact high level people to get them to return a phone call. Will let you all know what the doc says when he does call. which is suppose to be tomorrow.  Yeah right!!!
Both Madasin and Adian are sick agian.  Madasin has went right back to the beginning, where she started, water bowels, not wanting to eat, etc... 
So irratating and frustrating...


----------



## gypsigirl28

Update on Maddie... Well after three weeks of trying to get in touch with GI doc and calling patient advocacy the doc called back and does not want to be Maddies doc anymore cause he dont know what else to do for her.  
So we will be off to New Hampshire at the beginning of March. Have an apt with new doc for March 10th.  keep your fingers crossed this doc will be able to help us out...


----------



## Crohn's 35

Good luck to you all, I dont know how you guys are coping with this endless path to torture. Someone has to find something!!  Keep up posted and my thoughts are with you all!


----------



## DustyKat

Oh man, I hope this new doc can give you the answers you need. I will have every conceivable thing crossed for you all!

:goodluck::goodluck::goodluck:

Thinking about you all, :hug:
Dusty


----------



## Jerman

Hi, so sorry that i have not been in touch at all... I really do want to stress to you that Boston Children's Hospital is highly regarded as one of the best hospitals in the whole world for little ones. Please call and ask for an appointment with Dr. Wilson, he save my colin's life. Colin is now 15 and a healthy strong young man. Please give them a shot, i have believed from the beginning that this hospital would be able to help you and really still believe it with all of my heart. Much love and thoughts of healing coming your way....


----------



## gypsigirl28

We are in New hampshire, Appointment with new doc in the AM. Will let you all know how it goes..


----------



## DustyKat

Oh man, I hope this doc can finally give you the answers you so desperately need! I will be thinking about you all. 

:goodluck::goodluck::goodluck:


Take care and loads of love and hugs to all.......:hug::hug::hug::
Dusty


----------



## Dexky

I hope you guys get some answers this time Rosemary!!


----------



## Brindle

Fingers crossed for you ladies to get some answers/ treatment that you are in such dire need of.


----------



## Crohn's 35

Hope you get the answers you are finally looking for, enough already huh?  Hugs!


----------



## Guest

got my fingers crossed too, and waiting to hear how you got on....!


----------



## Astra

Oh, let this be it, really hoping this new doc is The One, good luck Rosemary, Kelly and Maddie, big huge hugs
xxxx


----------



## Lisa

Waiting to hear how things went today...keeping my fingers crossed!


----------



## gypsigirl28

UPDATE ON MADASIN AND ADIAN'S APT TODAY: 
The new doctor went over all records we brought with us and she stated that at the beginning maddie did have candida, intestenial infection, and colitis in the colon. After treatment the next set of test came back okay.  Maddie drinks at least 128 oz of fluid a day as of right now, and does not have a lot of wet diapers, The doc says that, that is way to much fluid for her and the plan is as follows: They are admitting both kids into hosiptal here in New Hampshire next Thursday, they was to monitor and limit maddies fluid intake while getting urine samples from her, they want to see if she can concentrate her own urine without so much fluid, and want to monitor her kidneys. She is thinking that either there is a hormone problem which is causing her to not concentrate her own urine or that there is a problem with her kidneys.  They said to continue giving her the fluids that she wants Not to change anything until they admit her to monitor while doing it, cause if it is the kidneys it will cause more problems for her.  If it is hormones they will keep her a few days and give her hormone meds and see if that helps, if it is her kidneys then they plan to keep her and see what has to be done.
The doc said that the diarreah could be caused from so much fluid intake and the undigested food could be from everything moving through her body to fast also because of the fluid intake.
Being that Adian has all the same symptoms that maddies has they are doing the same with him, except with adian they want his food intake to be higher. They want to see if that helps him and if not they will do more testing.
So we are heading home to NY, and will return Wednesday to be admitted Thursday morning. I will let you know how it goes. 

This has been such a long long road and we just pray that we get some answers... Thanks everyone for your support, it is so much appreciated.
lots of hug to you all


----------



## Dexky

Finally, someone is taking Maddie and Aidan's symptoms seriously.  Good luck ladies!!


----------



## AntsMommy

I know this has to be so tough on you guys, but I am so glad to read that there is someone doing some testing with some ideas for you!!  Hopefully, this will be the beginning of the end of this mystery/nightmare for you guys!!


----------



## AZMOM

Thinking of you all and so glad there is a plan!!


----------



## Crohn's 35

Wow at last someone is taking an interest too finally look after your babies.  Indeed along and painful journey.  Hope all test come back with something to figure out what they are both going through!  Hugs!


----------



## DustyKat

What a relief! Finally you are being heard and validated. I hope more than anything guys that this is the turning point for you and your little 'uns. I will be thinking about you and will have you in thoughts and prayers.

Loads of love and hugs, :hug:
Dusty


----------



## madasins mommy

thank you everyone. we are very relieved someone is FINALLY listening but scared to get answers as well... all that matters is they are fighters and they WILL get through this


----------



## gypsigirl28

So we get back from New Hampshire Saturday and end up taking maddie to ER that night. She was complaining her back hurt and it hurt when she pee'd.. They say it is a possible UTI, and on top of that she has an upper respirtory infection.  Poor princess has been having a rough last few days.  Hoping and praying they figure something out on Thursday in NH...


----------



## DustyKat

Hoping right along with you!!! You guys and your little un's deserve a break and answers! 

Keep us posted! 

Thinking of you, :hug::hug::hug:
Dusty


----------



## gypsigirl28

In New hampshire, Kids will be admitted tomorrow, Will let everyone know what happens
Thanks for your support...


----------



## DustyKat

Thinking of you all..........

:goodluck::goodluck::goodluck:

Always in my thoughts and prayers, :wub:
Dusty


----------



## Dexky

Looking forward to good news Rosemary!  Just out of curiosity, I looked to see when you started this thread.  Wow, last July!!  And the problems started earlier than that for Madison if I remember correctly.  It's about time!!


----------



## gypsigirl28

yes Dexky, The problems started in August of 2009.. It has been a long time for her to be sick.


----------



## Guest

thinking of you all, especially your little'uns. i hope this visit brings the help and info you all need so much, and gets them back on track! please keep updating us, we're all rooting for you... x


----------



## gypsigirl28

okay here goes an update.  I am a little confused so bare with me a little.  They did the urine and blood testing on Maddie and Adian.  Adians test came back fine. The test they did on urine was checking the "osmolality" in urine to see if she concentrated her own urine. Which is suppose to score at least a 600. Maddies first test was only 100.  Then they said the second time they did urine four hours later it was 835.  We are confused as to how it can jump so high so fast, but they say to watch her and they will call us next week to see how she is doing. being that it was a GI doctor and not Kidney Doctor we are thinking maybe we should have test redone by a peds kidney doctor.  It is not making sense to us.  

Of course she is not drinking much right now cause she is very sick with upper respirtory infection, which sounds more like Pneumonia now.  
So we are no closer to any answers today then we were yesterday.  We were hoping for answers.


----------



## AZMOM

Gosh - Rosemary - that is confusing.  Are they keeping the kids inpatient for all this?  How is your family doing with that?

I hope things are moving forward.


----------



## DustyKat

Oh man, that stinks. 

Did they give you any idea as to where to go from here, other than checking in next week? 

I so hope things start to improve. Thinking of you guys and your little un's...................:hug::hug::hug:

Dusty. :wub:


----------



## gypsigirl28

AZMOM said:


> Gosh - Rosemary - that is confusing.  Are they keeping the kids inpatient for all this?  How is your family doing with that?
> 
> I hope things are moving forward.



No they did not even do the admission. Said they had no bed. Did all testing in doc office.
yes it is all totally confusing to us as well.


----------



## gypsigirl28

DustyKat said:


> Oh man, that stinks.
> 
> Did they give you any idea as to where to go from here, other than checking in next week?
> 
> I so hope things start to improve. Thinking of you guys and your little un's...................:hug::hug::hug:
> 
> Dusty. :wub:



No dusty. They did not tell what next step is. We are more confused now then we were before... we are pulling our hair out..


----------



## Dexky

I wish I had some brilliant words of wisdom for you guys but you seem to be doing about everything possible for Maddy.  Keep plugging along and praying for answers!  Good luck!


----------



## gypsigirl28

well we finally heard from Doc in NH today.. She wants to do an ultra sound on maddies kidneys and if that shows nothing they will sedate her and do MRI. Wants them to take imodium AD for a week, if that dont work then Adian will go into OR for procedures and testing.. 
We have decided to move to New hampshire to make it easier on all of us instead of traveling all the time..


----------



## Dexky

Thanks for the update Rosemary!!  I hope the move goes smoothly for you all.  Maybe getting out of that old apt. will help the kids anyway!


----------



## Crohn's 35

Dexky said:


> Thanks for the update Rosemary!!  I hope the move goes smoothly for you all.  Maybe getting out of that old apt. will help the kids anyway!


Yeah, I was gonna say moving out of the moldy apt could be your best bet.  People don't realize what that does to ones health.  Keep us posted, maybe moving could be the best thing!:ysmile:


----------



## AZMOM

We're rooting for you all!


----------



## gypsigirl28

Dexky said:


> Thanks for the update Rosemary!!  I hope the move goes smoothly for you all.  Maybe getting out of that old apt. will help the kids anyway!


We are thinking the same thing dexky... When we are at the hotel for more then a few days they seem to get a little better in some areas.  We are hoping that this helps them even more.  Anything is worth a shot at this point.  We have spent more time in march in New hampshire then we have at home.  it is like paying rent in two places plus travel fees.  We just cant do that anymore, so the move was a smart choice for us, besides this doctor there seems to want to help them and not just want the money.  hopefully it stays that way for them.  I will keep everyone updated as to what the ultra sound and/or MRI says about her kidneys, and of course what the result is for adian as well.  

On a good note,  My grandson Bryce turned 6 today and he had a wonderful day... ))))


----------



## DustyKat

Man oh man I hope you guys get some answers soon and the move is just the start of great things to come! 




*A GREAT BIG HAPPY BIRTHDAY TO BRYCE!!!*
:bdayparty:​



Lots a love, :wub:
Dusty. xxxxxxxx


----------



## Brindle

SO happy that you are atleast someone. (drs) are finally taking a closer at the medical needs for your little ones... New Hampshire is a great state to live in and if you are going to Dartmouth Hitchcock, they really are great.. I have been going there for 9 ish years, after my other gastro was running out of answers as to what my body was doing.. Great luck and keep us posted.


----------



## gypsigirl28

well we are a few days away from moving to NH, what a nightmare packing etc.  We leave NY Sunday morning, hoping for many things to happen with this move.  hoping the move makes the kids health better along with hoping being closer to docs they can figure this all out.  On top of NH we will only be 50 minutes away from boston.. So if NH dont figure it out we will head to Boston with them... Wish us luck once agian.  Will update agian once we get moved.  
Sorry its been a while since update, have been so darn busy working, packing and sick kids. lol


----------



## DustyKat

Sending you all the luck in the world! I hope this will be a wonderful new beginning for you all......







Much love, :wub:
Dusty. xxxxxxxx


----------



## Brindle

So Hope that you are able to move forward toward good health for the family...  Think about your babies often and fingers crossed that everything gets resolved quickly. Keepe us posted.


----------



## gypsigirl28

Hi everyone, We have been in NH for 12 days now. We are still trying to settle in here, and get things organized. everyone is liking is so far, all three children seem to be liking it. They love the fact that they can go outside and play in the sand, etc. Where we were living in NY we did not have a yard for them to play in, just the driveway with no sand. lol There behavior has been great so far.  We all have been sick with cold due to change in weather and atmoshepere, but we are getting through that.  
We are still waiting for a call from the Docs here in NH which we have been waiting for since we were in NY. Go figure... Haven't been here long enough yet to see if there is going to be a change health wise in Maddie and Adian being that we left the moldy house.  Hoping for the best with that.  We are looking for a new peds doc this week to get them in and go from there.  We are keeping a positive attitude and hoping for the best.  
Things have been kinda crazy so far for us, but then agian we are so used to that, it is just like another day for us.  Being that we have been fighting for Madasin's Medical attention for two years plus now it has come pretty natural for us to have crazy crazy days.  Sorry that I have not been on line much and hope to get on more once things get settled and moving along here.  

Want to wish a late Happy Mothers day to all the moms and grandma's... 
I will let you all know how things go.
hugs and love to all.
thanks for all your support


----------



## Dexky

Good luck Rosemary!  Keep us updated!


----------



## Lisa

Hi Rosemary.....we can forgive you for not checking in - I'm sure it HAS been crazy!

Glad to hear the kids have an outside place to play - make sure you check that sand lot (if it really is a pile of sand) for cat feces - doin't want the kids playing in that! .... 

Hope the move out of the moldy house helps too - at least you peace of mind knowing you are out there!


----------



## DustyKat

Thanks for the update guys! And YAY for outside play! 

Man oh man I hope this yields positive results for you guys an all fronts. I have everything crossed for you all to point of being contorted...:eek2: 

Let us know how things are progressing when you get the chance. Thinking of you...:hug:

Much love...:wub:
Dusty. xxxxxxxx


----------



## gypsigirl28

hi everyone... well we have had ourselves a set back..... 
Maddie said today her belly hurt, she showed us where and it was her pelvic area, then a few mintues later she said she had an accident in her pull up... Kelley changed her to find a completely full pull up of blood with a little poop... 
So off to the hospital she went... They are doing xrays now.. 

I truly believe that she is having a UC flare up.... even though they gave her diagnoses then took back the diagnoses because they said she was to young to have it..   If you read all the symptoms for UC and flare ups that is what happens... STRESSED to the max here....... Sick and tired of them blowing us off....
Does anyone else have any ideas??


----------



## Dexky

Sorry Rosemary!  Hope everything else is going ok since the move!


----------



## gypsigirl28

thanks dexky,  to be honest beside the minor allergy things and diarreah here and there, maddie was doing pretty  good until today.  She still complains of her back hurting a lot but thats about it.   They are adjusting to the move really well, and seem to like it here...


----------



## DustyKat

Oh Rosemary, I'm so sorry to hear this...

My heart goes out to you and your Grandbabies. I hope they get to the bottom of it now and Maddie can finally find some peace and relief. 

All my love, :wub:
Dusty. xxxxxxxx


----------



## Crohn's Mom

Hi Rosemary 

Glad to hear that the move went well, but I am sorry to hear of the set back 

Do  you have any news to share yet ?
:ghug: Hang in there


----------



## gypsigirl28

Hi everyone... Well they sent maddie home last night with the condition that we contact her gi this morning.  The ER doctor said that she needed to have another endoscope and colonoscopy done. the xray they did came back fine as did the urine test. Well we indeed called them, got a call back from the nurse, told her everything that happened, she said that she would talk to the doctor and one of them would call us back... Well im sure you dont have to guess how that went right?  right they never called us back!!! Why does that not surprise me at all.  

as for maddie, her belly isnt hurting so much today and her stools still have some blood in them but nothing like it was yesterday.


----------



## DustyKat

Thanks for the update hun...:hug:

I'm so glad to hear Maddie is feeling a little better but :ymad: that the phone call was never returned. I wonder if the people that make these promises are ever at the receiving end?? I'd say not or they wouldn't do it!!!! :voodoo:

Keep us posted mate and I hope you get that phone call soon! My brains a bit muddled at the moment and I couldn't work out when today/tomorrow would be for you...:eek2: :lol:

Much love, :Karl:
Dusty. xxxxxxxx


----------



## gypsigirl28

UPDATE!!!!! okay so after waiting for GI to call us back with NO success!!! we went a different route... We got Maddie into a  new ped doc here in NH today,  The doctor went over the summary that we gave him, until all medical records arrive.  He was totally confused as to why the GI doc in VT diagnosed her with UC then took back the diagnoses because she was to young. After shaking his head and laughing about that, he said that from what he read and from all of her symptoms in past and present, it is his opinion that she indeed has UC but being that he is a ped doc and cant give the meds for it nor can he give that diagnoses, so therefore he gave referral to New GI doctor here and even called him already and made the appointment for us. Miss Maddie goes to the new GI on Tuesday morning.  The Peds doc and the GI doc are all affiliated together with the same hospital which is very nice cause they can all view records and reports from the computer instead of us having to bring all records with us. On top that they will communicate with each other so much better then all the other docs she has seen. 
We are so very excited and happy to finally find a doctor that will listen to us and pay attention to Maddies symptoms and not decide due to her age... 

I will let everyone know what the new GI doc says on Tuesday.  We are so hoping that he gives her back the meds that will help her.  Of course we know if it is UC it is a lifelong disease but at least we will be able to help her as much as possible and get her back on  meds for it.  
Thank you all for your support through all of this, it sure has been a very very long stressful battle thus far.

Lots of love and hugs to you all


----------



## DustyKat

This is just the best news Rosemary!!! What a relief for you all to finally find someone that will listen...YAY! I am just so happy for you.... Onward and upward! 

:mademyday:
Dusty. xxx


----------



## Dexky

^^^Ditto^^^  Your perseverance may finally pay off!!  Way to go ladies!!


----------



## Crohn's Mom

Such great news !
I'm so happy for you all !!
:congratualtions:


----------



## Brindle

That is Wonderful news!!! Way to go.  Hopefully with the Dr.'s all working together your journey will not be all uphill any longer.


----------



## Astra

Aw Rosemary , Kelly and Madison, this is the best news!
He sounds like the business!
Fingers crossed the new GI gets things moving and new meds
Much love to you all with this and the new home, sounds like the start of a whole new chapter, at last!
xxxxxxxxx


----------



## gypsigirl28

UPDATE from today's GI visit.... 
The doctor went over everything with us as far as all the testing and procedures Maddie has had thus far and all results from such. Then came the exam which was feeling her belly, listening to her heart beat.. he told us that it is very hard to diagnose a child this young with UC but it is not "not heard of"  He said that her chances of having it would be higher if one or both parents had it, but being that it does run in family both UC and Crohns, he said chances are greater for her.  
this is what he had to say and what he plans on doing..
He ordered a long list of testing through blood work.. If that comes back normal, he is ordering another colonoscopy.  If that test comes back normal then off to do a ct scan "small bowel follow through".  If all testing comes back normal, he is going to still but her back on the pentasa being that it was starting to show improvement when they took her off it.  he says he will follow her to see what happens and if we can not figure out diagnoses he is still going to treat her with pentasa to see if that will help and make her comfortable.  he says you dont have to have a diagnoses to go on meds, so if that is the case we will go from there.  
he is going to call us with bloodwork results, then decide on colonoscopy at that time.  Maddie has to go back in 8 to 10 weeks but he will be contacting us throughout the next 8 weeks for results of testing and decisions made once the testing is done.  

Sorry if that sounds at all confusing,  The plus side of all of this is that HE is willing to HELP maddie get through this and is willing to give her meds after all testing is done...

She even liked this doctor.. Yippeeee...

On the sad side I have to tell you what Maddie asked Kelley this morning... 
She asked kelley if she was angry with her because she was sick.. Of course Kelley told her no way that it was not her fault she was sick.  She said well that other doctor is angry with me,..   Kelley asked her why she thought that, and maddie proceeded to tell her that "well she must be angry with me for being sick cause she did not call us back"  Kelley of course told her that was not correct and that no body was angry with her for being sick at all..  Then maddie says,, Mommy why wont that other doctor help me get better, why wont she call us back..  
kelley cried and we were very upset that Maddie would get that kind of impression at the age of 3 from a doctor...  How do you explain to a 3 year old why a doctor wont return a phone call, or try to help her get better??? 

Hopefully this doctor gives her a much better impression and actually helps her..


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## DustyKat

Not confusing at Rosemary!!! It's bloody brilliant!!! OMG, you must be so relieved to finally have someone who listen and act on your concerns. This guy really sounds like he has his head screwed on and knows his stuff. I am just so happy for you for you all!...:banana::banana::banana:

Awwww poor little love...:hug: It's amazing what kids pick up on isn't it? I think this new doc is already running rings around the other one! 

I so hope this is all what you expect it to be. Give Maddie a great big hug from me, she is a real little trooper and a smart cookie to boot.

Much love, :Karl:
Dusty. xxxxxxxx


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## Dexky

That's fantastic Rosemary!!  It seems crazy to hope for positive tests but if she's going to keep having problems, I know you just want the right answers.  Very glad this new GI is doing something!!!


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## Brindle

Looks like this Dr. is addressing the fact that she doesn't feel well. Sounds like that is the top priority. Hopefully she will be a pain free little lady before long.


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## gypsigirl28

Hi everyone;  miss maddie's bloodwork all came back normal. She is still having lots of blood in her stools and complaining of bellyaches, They have ordered a colonoscopy for Monday June 20th.  Poor baby girl has to go through another one.  hopefully they figure it out, this doctor sounds like he really wants to help her.  Will let you all know how things go..


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## Dexky

Sounds like a plan Rosemary!!  Still hoping for answers, I know!!


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## DustyKat

Awww, poor Miss Maddie...:hug:

I don't want her to have a scope BUT I want her to have answers and relief! Roll on next Monday.

Thinking of you all, as always...:Karl:
Dusty. xxxxxxxx


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## gypsigirl28

Well Miss Maddie, had her test today and is now back home. She is not feeling the best but everything went good, He was able to get biopsies and said he would call us as soon as they are back.  If we dont here from him by Next Monday to give him a call.


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## Dexky

Let us know what you find out Rosemary!  Did the doc say anything about what he saw?


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## DustyKat

So good to hear that all went for Maddie...:hug: 

I'm with Dex! Did the doc say anything about what they saw? 

Good luck guys and keep us posted!

Much love, :Karl:
Dusty. xxxxxxxx


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## gypsigirl28

Dexky, dustykat:  he said everything looked okay and that he was able to get biopsies from the area he wanted to get them from. he said there was something in the desending colon which could be the cause of bleeding, but said it is not uncommon in children her age and unless that got worse it was nothing to worry about.  whatever the hell that is suppose to mean.   said we should hear from him by Monday of next week.  that is all he pretty much said. We will see what the results say.  
She has had a tough couple of days with bad belly aches and bleeding again this morning.  Eghhhh


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## DustyKat

Thanks for that hun...:hug:

Roll on next week! In the meantime I hope things settle for little Maddie. She is such a little angel, my heart goes out to you guys for the suffering you have had to see her go through.

Much love, :Karl:
Dusty. xxxxxxxx


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## gypsigirl28

TEST RESULTS ARE IN FINALLY!!!!! 

ACCORDING TO THE DOC.. there was high white blood cell count and inflamation in the colon.  He wants to get her slides from VT to compare them before he will give diagnoses of Ulcerative Colitis because he said it was mild right now.  He is however giving her PENTASA and treating her for UC, he will contact us in a few weeks to see how she is doing on the Pentasa.  If she is not any better when he calls THEN he is doing more testing.  Hoping and Praying from the bottom of my heart that the Pentasa helps her out so she can get some relief!!!!!!!!
Thank You to everyone for all your support through all of this Hell we have been through.  Hugs and love to all of you!!!!!


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## Dexky

I hope more than anything that's all she'll ever need Rose!!  Pentasa seems so mild compared to most of the meds these kids have to take.  Did the doc give any indication why she's continued to have blood for so long if its so mild???


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## gypsigirl28

Dexky said:


> I hope more than anything that's all she'll ever need Rose!!  Pentasa seems so mild compared to most of the meds these kids have to take.  Did the doc give any indication why she's continued to have blood for so long if its so mild???


No he did not say, just that he felt it was mild, but would know more when he could compare the slides from past colonoscopy testing that she had in VT.  Sometimes Dexky I just don't understand there way of thinking.  I believe that it is the UC and they just don't want to give the official diagnoses for it, but are going to start the meds for such. Hoping this is all she will have to be one,, we will see in a few weeks if it is working or not.  I just want her to not be in so much pain all the time.  She has been suffering for so long now and this last bout of the flare started May 31 and has continued.. Up most nights with bad belly aches etc...


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## gypsigirl28

Update on Meds.. Well Maddie has been on the meds since Friday... Of course she is adjusting to some of the side effects but so far so good.  I hope these meds work and give her some kind of relief..

I hope everyone had a good 4th of July


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## DustyKat

Awww, I hope so too! Bless her...:hug:

Take care you guys, always thinking of you! :Karl:
Dusty. xxxxxxxx


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## Dexky

What kind of side effects Rose?


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## gypsigirl28

Dexky said:


> What kind of side effects Rose?


She is very shaky, fatigue, and can't stay in the sun for long.  Makes her feel sick, that is what we have noticed so far.


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## Dexky

Is Pentasa the only med she's on?


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## gypsigirl28

Dexky said:


> Is Pentasa the only med she's on?


pentasa and probotics. but she has been on probotics for a while now


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## gypsigirl28

Maddie has now been on the Pentasa for nine days now, Her bowels have thickened up A lot and she has not had any belly aches!!!!!!!!! This is exciting for us,, I sure hope it continues this way. Finally she is sleeping through with out waking up screaming in pain.. yipppeeeee


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## Crohn's Mom

Fantastic news!!!


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## DustyKat

Woohoo, fab news guys! :banana::banana::banana:

Oh man you must all be so ecstatic! I bet her guardian angel, MissB, is too...:hug:

:mademyday:

Dusty. xxxxxxxx


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## Dexky

Have the possible side effects eased as well?


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## gypsigirl28

Dusty-  Yes I am sure Maddie's Gaurdian angel Miss B is very Happy about this.  She has been watching over her for some time now.  I really miss her.. 

Dexky- She don't have the shakes as much any more, but the sun is still kinda an issue. We just keep having her go back in forth in shade then sun etc... 

We are watching the side effects but they seem to be getting better.


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## Brindle

So happy for you all. Fingers crossed that everything holds steady or improves. She must feel like a new little lady already,  compared to the agony that she has been living with.


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## gypsigirl28

:confused2::confused2::confused2:
I have a question. I am totally confused.  Maddie was doing really good for a bit. Stool were normal. no D and no belly pains. Her stools  started getting softer again, not D or runny, but not normal either.  She is taking two 500 miligrams of pentasa a day. SO that would be 1000 miligrams a day.
We called the doctor today and told him how she was, we asked if we should up her dose to three times a day?  This is what they told us:  NO dont up the dose because no matter how many pills she takes, she will ONLY get 333 miligrams.!!! We were like HUH?? What are you talking about.  Why do you have her taking 1000 miligrams a day if she is actually only getting 333 miligrams? 
Has anyone ever heard of this?? We are so totally confused about all this..


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## Dexky

I guess since it's a time released med...eh, I don't know!  I know some users often see some of the white pellets undigested in their stool.


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## gypsigirl28

Dexky said:


> I guess since it's a time released med...eh, I don't know!  I know some users often see some of the white pellets undigested in their stool.


She does have some undigested pellets in her stools, but not many this time around. the first time she took this med she had lots of them in her stools.. I just think that is strange


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## Deemari

That doesn't sound right. My daughter was on 500mg three times a day for a month. I don't think they'd give more if the body only digests a certain amount. I agree with you...VERY odd. Have you considered calling a pharmacist and asking about this?


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## gypsigirl28

Deemari said:


> That doesn't sound right. My daughter was on 500mg three times a day for a month. I don't think they'd give more if the body only digests a certain amount. I agree with you...VERY odd. Have you considered calling a pharmacist and asking about this?


I have not called the pharmacist yet but will. Maddie was on three a day the first time they gave it to her as well.  confusing to me..


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## Brindle

maybe she is getting 333 mg per pill???? but that still would not make sense about why she could not have 3 times a day. I would call them back and ask the Dr. or Nurse to please explain.


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## Silvermoon

((((((((( Rosemary )))))))))))))

Just catching up on some old posts, and not sure if you have had this question answered by the pharmasist or not, so I will try to explain it to you....


Different bosies at different ages and even different weights will metabolize medications differently.  This means that there is only so much medication in a given period of time that a body can accept and use... the rest goes through the system and eventually ends up in the "waste" pile (pee or poo) - BUT while going through the system, it can take some of the organs a very hard and/or long time to break this medicines down so they CAN be peed or poo'd out - organs such as the liver and kidneys.  So if you give Maddie too much of a certain type of medicine, her body will only use a PART of that, and then those other organs have to work really hard to get rid of the rest.

Without going into a WHOLE course on physiology, I am not sure why she was on three tablets a day as this would have been a lot for her little body to handle.  For a child her age, she is pretty much maxed out at 1000mg a day (which means her body actually USES 666mg a day) and the rest is wasted - so adding another pill would just make her body organs work harder to get rid of the extra medicine - which could cause damage to those organs further down the road.....

I hope this "kind of" helps explain a bit better.... and that things continue to go in a positive direction


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## gypsigirl28

Welcome back!!! SILVERMOON:   THANK YOU THANK YOU THANK YOU!!!!! Your information explained it very well. I so appreciate you information.  Maddie is doing pretty good on the meds right now and we are hoping it continues to work for her.
You were much more helpful then her doctors office was.. 

I do have a question for you though. do you know if they would do anything for a child younger with it.  Adian has the same thing maddie does (at least the symptoms) but he is only 18 months old and we dont want to put him through all the testing if they will not give him anything for it right now cause of his age.

Thanks bunches for the information that you have given me.

Lots of hugs to you.  welcome back I have missed you!!


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## gypsigirl28

UPDATE!!!!  Maddie had her follow up today with GI doc from the procedure and with being on meds for a bit.

FINALLY ***** after two years of fighting and getting no where, we have a diagnoses... She does have an IBD, either Ulcerative colitis or Crohns. He said it is hard to tell at this point which one it is because of her age, but they are both treated the same way so which one it is, is not an issue right now. We will continue to give her the Pentasa until it stops working for her.  She goes back to him at the beginning of October at which time he is scheduling a test to look at her belly, being that they have checked the lower and upper parts already. He said she needs to have this test done but wants to give her a break from testing for right now.  

We are relieved to finally know what is wrong but sad at the same time that it is an IBD.
Thank you everyone for your support while we were going through the battle of figuring it all out.  It has been a very long road and of course we know that it will continue to be a long road for her. But with all of us and all of you I know she will get through it all.

Thanks again we Love you all


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## Dexky

Sad news but good that you finally got confirmation for what you've known all along!!  At least now you know what you're dealing with!


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## Brindle

Hopefully she will feel like a brand new little lady once the meds get in there and start doing their job .Like you said good to finally know exactly what is going on. Feel better little lady.


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## DustyKat

Oh Rosemary, I know it's not what you want to hear but finally you have those long awaited answers and finally Maddie will have relief and peace. 

So deep breathes hun and remember, we will continue the journey with you, every single step of the way.

Much love, :Karl:
Dusty. xxxxxxxx


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## madasins mommy

Hi everyone! Im back! I have missed you all


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## madasins mommy

good news guys! we have found a great way to help madasin cope with this! her and i are currently writing a childrens book to hopefully have published on living with UC and Crohns at such a young age! she is so excited. she wants learning about this to be part of her homeschool pre-k this year!


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## DustyKat

Hey Kelley! :bigwave:

So good to see you hun. 

Oh wow Kelley that is so fab! Can't wait to see it, I know it will be amazing...:banana::banana::banana:

Much love, :Karl:
Dusty. xxxxxxxx


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## Astra

Hiya Kelley, Maddie & Rosemary

It's good news in one sense of the word, bad news also, but....
at least the waiting is over, time to proceed with the maintenance and hopefully Maddie will be back on track, I hope so!
What a wonderful idea, a book from a child's point of view, it's gonna be fab!
Good luck with everything and know that we'll always be here for you all
Joan xxxxx


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## Crohn's Mom

What a bittersweet feeling to finally have an answer; I'm so glad for Maddie that she finally does tho!  
Let the healing begin !! 

and HI Kelley ! what a fabulous idea and doing it together with her will be so special and always cherished ! Best of luck !!


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## madasins mommy

Thank you all!! it is a relief to have an answer yet scary worrisome and whatever else at the same time! she is a strong baby girl with an even stronger personality and will so i have faith that she will be okay. 
as far as the book goes...we had contact with a publishing company today. i have to read over some stuff and call her back! 
DUSTY KAT good to see you too1 i have missed it here...im writing my password down this time!


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