Madasin's Updates

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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.
 
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....
 
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
 
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!!!!!!!!!!!!!
 
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
 
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!
 
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
 
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.
 
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
 
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.
 
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
 
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.
Click to expand...

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:
 
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!!
 
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.
 
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?
 
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
 
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
 
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
 
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!
 
gypsigirl28 said:
wooo hooo maddie ate .. and 1/4 of a pear today...
Click to expand...

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.
 
gypsigirl28 said:
The UTI is not any better, she is still very red and complains it hurts all the time.
Click to expand...

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.
 
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
 
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
 
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.
 
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:
 
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!
 
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?
 
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:
 
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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.
 
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?
 
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.
 
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?
Click to expand...

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
 
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!!!!
 
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,

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


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.
 
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.
 
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
 
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..
 
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.
 
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.
 
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.
 
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....
 
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.
 
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
 
....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!!!!
 
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!!!!
Click to expand...

I posted how I was doing. Do I detest a hint of sarcasm in your posting? :lol:
 
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.....
 
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!
 
So glad that today went reasonably well; best wishes for an even better day tomorrow.
 
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
 
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.
 
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!
 
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.
 
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!!!
 
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.
 
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
 
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!!!!
 
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
 
Well we have two more days until we here something from NYC oh how we are hopefull this doctor will help miss maddie
 
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!!!!
 
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 ))))))))))
 
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 ))))))))))
Click to expand...

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???????????
 
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Is she still bleeding in her diapers and barely eating?? Or has there been some improvement?
 
Dexky said:
Is she still bleeding in her diapers and barely eating?? Or has there been some improvement?
Click to expand...

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.
 
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.
 
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???????????
Click to expand...

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:
 
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
 
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
 
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
 
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.
 
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!
 
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
 
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!!!
 
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. :)
 
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.
 
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?
 
Dexky said:
What do you mean she's clumsy?? Is she hurting herself?
Click to expand...

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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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!
 
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!
Click to expand...

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.
 
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.
 
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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