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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.
 
Dexky said:
So you think it's weakness from lack of nutrition?
Click to expand...

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

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.
 
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.
Click to expand...

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..
 
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.
 
Dexky said:
How long did the doc say it should take for this med to kick in?
Click to expand...

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

Lots of love, :hug:
Dusty
 
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:
 
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!!!!
 
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.
 
Hey guys, :bigwave:

How is Maddie going???

Thinking about you all, :hug::hug::hug:
Dusty
 
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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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!
 
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.
 
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?
 
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.
 
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!
 
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.
 
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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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.
 
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
 
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.
 
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
 
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!!!
 
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.
 
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:
 
Sorry guys!! I don't know what else to say!! Good luck, someone surely will see her!!
 
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.
 
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
 
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......
 
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.....
 
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.
 
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.
 
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
 
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:
 
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
 
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..
 
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
 
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)))))
 
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...
 
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.
 
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.
Click to expand...

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...
 
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)))))
 
We are in Vermont for Madasin and Adian's appointments.. will let you know what they say..
Thanks everyone for your support and advice
 
Sending you hope, love, & strength for your appointment today. Hope that you get the help you have been looking for for so long. (((((((HUGS))))))))
 
Thinking about you all and I hope all goes well for little ones.

:goodluck::goodluck::goodluck:

Keeping my fingers and toes crossed, :hug:
Dusty
 
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
 
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
 
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.
 
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
 
Hoping all of the little ones and your wonderful family (including you) has some treatment and answers really soon.
 
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!
 
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.
 
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.
 
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.
 
Cystic Fibrosis testing for both madasin and adian came back NEGATIVE!!!!! We are happy about this. Back to the drawing board once agian.
 
Hi rosemary thats great new im so happy for you guys, so whats the next step? maybe the allergy test will bring something.
 
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
 
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.
 
Hey Guys,

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

Loads of love, :hug:
Dusty
 
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.
 
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
 
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.
 
Hang in there guys!! Hopefully, the answers will be just around the corner for both of them.
 
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...
 
Fingers crossed for you Rosemary & Kelley, and of course, Maddie.
Big hugs your way!
xxx
 
Finally....First thing tomorrow morning maddie has her allergy testing done. Then we will find out where we go from there...
 
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
 
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..
 
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
 
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!
 
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 .
 
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.
 
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!!!!!!!
 
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
 
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!!!!!!!
 

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