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hope it gets sorted soon, stand your ground as a mother always knows best, and knows there child.keep us updated hun x
 
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...
 
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...
 
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!
 
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
 
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....
 
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
 
Oh, let this be it, really hoping this new doc is The One, good luck Rosemary, Kelly and Maddie, big huge hugs
xxxx
 
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
 
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!!
 
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!
 
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
 
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
 
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...
 
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
 
Thinking of you all..........

:goodluck::goodluck::goodluck:

Always in my thoughts and prayers, :wub:
Dusty
 
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!!
 
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
 
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.
 
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.
 
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:
 
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.
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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.
 
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:
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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..
 
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!
 
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..
 
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!
 
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!
Click to expand...

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:
 
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!
Click to expand...

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

Good%20luck%20smiley.gif


Much love, :wub:
Dusty. xxxxxxxx
 
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.
 
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
 
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!
 
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
 
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??
 
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...
 
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
 
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 ;)
 
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.
 
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
 
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
 
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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
 
That is Wonderful news!!! Way to go. Hopefully with the Dr.'s all working together your journey will not be all uphill any longer.
 
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
 
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..
 
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
 
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!!!
 
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.
 
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..
 
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
 
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.
 
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
 
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
 
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
 
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!!!!!
 
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???
 
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???
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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...
 
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
 
Awww, I hope so too! Bless her...:hug:

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