Little Farm Girl and Colitis

Crohn's Disease Forum

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HIGH doses of magnesium can indeed have a laxative effect, especially chloride. Of course, magnesium deficiency can cause all those symptoms as well, along with countless other issues. And I bet money that the vast majority of people with Crohn's disease are not getting enough Mg in their diet and those who are flaring or had an ileal resection aren't absorbing enough and are losing more than their fair share as well. The more I read about Mg, the more I feel it plays a critical role in the pathogenesis of Crohn's disease.

The best solution is consuming foods high in magnesium throughout the day. But that's tough without juicing. So I personally take some in the morning and some in the evening and have been testing the various forms.

If the neurologist wanted DS on those supplements and your GI scared you off, I think your GI did you a huge disservice.
 
No Gi did not scare us off- DS has constipation as his main crohn's symptom.
Gi said he was ok with because of DS symptoms since they were not typical .
We just found his migraines were worse due to a pred wean and lack of crohn's under control.
Once the crohn's was under control and he was off the pred no more migraines .
 
David,
I just can't swallow big pills and Caitlyn won't even try them. I wake up in the middle of the night sometimes with those laryngospasms where you feel like you are choking and can't breathe. I read that magnesium helps prevent them so have been trying to find one I can take GNC sells a powder but it is very expensive.
 
David said:
Great tip on the bananas! Thank you!

Regarding the calcium, you used that to help with the acid or because you felt she was low in it?
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She gets her calcium from her Peptemin Jr., cheese and LF milk now so just on occasion when she eats something that might have irritated her belly... Too much sauce on her spaghetti. It is a rare occurrence now. Keep them in my purse though just in case.
 
Thank god her Peptamin has a good source of magnesium bc I am glad she isn't deficient. Can't really hit her with magnesium bc the lack of colon and magnesium really would make her loose. I have to have the correct ratio of calcium or she can get pretty messed up pretty quickly.
 
Peptamen is one of the reasons we worry less with DS .
It has kept all his numbers up since he drinks two -3 a day.
 
The magnesium in enteral nutrition is one of the reasons I think many do so well with it and then have issues when they go off.

Out of curiosity, does it say how much Mg is in each Peptamen?

Could you elaborate on the, "calcium ratio" you speak of? Thanks! :)
 
How many of your kids had blood in there stool 4 days after scopes?????????
It looks like spaghetti sauce. She has been having more EIM's the last two days. Also some belly pains too. Could red gateraid cause this? I did get a sample!

Yes I'm calling her GI!
 
Called the GI on-call. He said we might have to bring her down if she continues the blood loss or she just gets so uncomfortable. GREAT!
 
The biopsies do bleed. Keep that in mind that they removed tissue.yes red Gatorade can cause red looking poo if her transit time is faster than normal. Rowan is still having some blood from it and had less biopsies taken. Always better to be cautious though, glad you called the doctor.
 
That's good to know Mary but she's had normal stool since thursday. Would it still be the same?

David or Dusty or anyone,:biggrin:

Her inflammation was in her TI. What vitimans might be low through this area?
 
David said:
The magnesium in enteral nutrition is one of the reasons I think many do so well with it and then have issues when they go off.

Out of curiosity, does it say how much Mg is in each Peptamen?

Could you elaborate on the, "calcium ratio" you speak of? Thanks! :)
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It is not the ideal 2:1 ratio that I take but we try to avoid the bowel dumping.

Peptamen_Jr_116_117.jpg
 
Ya AZMOM I thought of that after the fact.;)
I know it's blood but if I could live in denial I would.:rosette1:
See even with a DX I still am trying to put the bubble back together!:ack:
 
Are you having her use a hat so you can see it or are you looking in the water? Im with Mary. Could be the Gatorade. Just avoid all reds and keep tracking.
 
UMMMMMM.......I forgot the hat!

But I did fish out a sample. I don't think it's the Gateraid. In the same stool was the blood part and then normal stool. She's picking up in pain this evening. We'll see how it goes tonight.

BTW, the on-call GI said there off until Wednesday. I don't think our GI thought of that!!!
The on-call GI said she might need meds until the EEN kicks in.
 
Myreinhard said:
Peptamen_Jr_116_117.jpg
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This drives me crazy. Here we have an incredibly nutrient dense concoction that provides just about every vitamin and mineral that you need and consuming it exclusively leads to remission at rates on par with prednisone. And there is evidence that our food is 5-40% less nutrient dense than it once was and the typical western diet is often low in a variety of those nutrients. And yet, despite the fact there are plenty of studies that showcase people with Crohn's disease are commonly deficient in various vitamins and minerals and when you provide a concoction of those vitamins and minerals it leads to remission in a high percentage of those cases, nobody is exploring the role of vitamin and mineral deficiency in the pathogenesis of Crohn's disease.

What am I missing? What do I not understand?
 
Sometimes red food coloring can change the food too. I have saw apples that are stained like blood from it. Thought I was seeing clots. Rowan recently ate a lot of purple Popsicles and it all came out completely black and I was absolutely positive she was having a upper GI bleed. I was wrong. Not saying your wrong just saying don't flip your lid just yet. She has to lose a lot of blood for it to required a hospital stay. A couple of tablespoons twice a day isn't going to effect her terribly so long as she wasn't anemic... What was her HgB when she was scoped? They did do a CBC right?
 
Thanks Mary!:heart:

No labs were done!:ack:

The GI said our GP can do that and I said our GP said the GI can do that when she's scoped.
She didn't get labs yet. Our GP is on vacation until next week. Now that Grace has the DX when I talk to the GI, I'll ask for some.

I'm off for awhile. Grace is starting with the pain again. This time I'll make sure the hat is in place!;)
 
They saw such little inflammation that they didn't even think she had IBD visually and she has never been anemic before right. Just keep an eye on her. The on call GI is probably a fellow and doesn't know your case. They always tell me to bring Rowan into the ER. They always do bc they cannot properly do diagnosis over the phone they could be sued for telling you the wrong thing. Up to you of course, you know her best. How much blood are you seeing? Catch it in the hat bc blood in water alway ALWAYS looks like a lot of bleeding. Keep us posted.
 
So surprised they did not do at least a CBC. She got an IV right? It would have been the perfect time to get the labs then. It is the GIs job to do her labs for he is who knows the IBD world. He can pawn off her nutrition onto the GP if he wants to but why bother doing more than one poke if you don't have to. Just saying they kinda dropped the ball there.
 
David
being a retired medical person I feel qualified to answer that question.doctors are trained to treat disease not the whole person.as a nurse practitioner we were trained in holistic medicine not just to look at the illness and treat the illness but to look at the person as a whole.now they are trying to change that in medical school the posh now is to look at the whole person and try to take a more wholistic approach and a preventative approach. but as they say it is very hard to teach an old dog new tricks and who are the teachers in medicine? it is the old dogs!
 
David
The problem with EN is they are not sure why or how it works.
The researchers know it works well in children early on when they are first dx.
They know they have less success at remission with EN in adults ( could be type of disease - fistula, structuring etc vs inflammatory )
I am of the theory of more than one subset of Ibd -especially since my kid doesn't fit the mold.
Partial en continued in children lowers the rate of relapse.

FW
Talk to the on call Gi- listen to the Gi especially since this is new
Watch her ..... You know your child - if your not comfortable take her in.
It's a learning curve .
There things now like Mary - I am less freaked out about .
Definitely things about his asthma - I know when to hit that panic button.

But medical advice from the Internet not matter how well intentioned is not something you should be doing.....
Talk to her doc , listen to her doc
And update us as you can .
We are here for support and hugs
Your docs are there for her care.
 
MLP
So true about not seeking medical advice here. I didn't feel I was. I was seeking forum friends opinions. I do know all to well that her docs and us have to make the medical choices for her. I will however try to word things in a different way. Thanks for the insight!


Grace had some more knee and neck pain at church tonight but no tummy pains! YA!

Mary I did apply for the insurance. It will be a couple months before we know.
 
Yay! I am sooooo very happy you applied. They approve all IBDers so I am sure you will get it. It really is a Huge help!

FW glad you realise I am not giving any medical advice. I was just giving my opinion specific to biopsies and bleeding. It does happen and can be intermittent and should be expected. It is considered normal after a scope. Did they tell you that to expect it? I am just saying it bc our kids were scoped and biopsies the same day.

And yes MLP I am a mom that knows what too much blood looks like bc Rowan was a bleeder. But it is my kid and not hers so it is different bc Grace has different issues also. It is weird how it can become normal to be use to seeing blood. Rowan has been pooping a tsp of blood 3 times a day for 7 months now and she is not anemic. With that being said I also give her a heavy dose of iron and VitC. So I know she is building too.

I remember when this all started and the blood would scare me so much I wouldn't sleep and couldn't watch scary movies without having nightmares.
 
Mary and FW - I realize you were just stating your mommy opinions etc...
But I wanted to make sure all ( the Millions of FW readers ;) ) were aware
That our opinions were not replacing those of her Gi since she spoke with her Gi tonight
Specifically on what to do In this case about the bleeding .
Especially since some ( not the regulars here ) only use the Internet for advice without consulting a doc .
 
PPI's: I have been trying to dump O's for about 6 months. At first it was she needed it because of the Prednisone, then when she stopped Pred and I was told she had stomach inflammation during scope, then it was the EN, I wonder what his excuse since July is? We are moving down though. But here is the funny thing...O forgets this one all the time and not one single complaint!!!!! I am really going to push dropping this as soon as possible.

Magnesium: I have been told by our derm that magnesium is key to skin issues (didn't know about the headaches...good to know as my younger one suffers terribly from those). Our sourse for Magnesium is Hemp Hearts. They come from teeny tiny seeds (she has no seed restrictions) and taste like sunflower seeds. 3 tbs a day gives you 45% of daily recommended allowance of Magnesium and also has 20% iron, Zinc 20%, Thiamin 25%,Folate 8%, Manganese 110% and is supposedly a great source of protein. O sprinkles them on salad, yogurt, in smoothies and really just eats them right out of the bag.

Calcium: O takes two Adora's a day. They are gourmet chocolates (that happen to come from CT but they are marketed nationwide) and are fortified with Calcium and vit d3.

David: so right there with you on the food supply and EN!!!

FWIW we purchased a vitamix type machine and are pulvarizing lots of veggies and fruits for O to drink. The rest of the family also. Lots of vitamins and minerals going in and seeds are chopped super duper small. Don't know if it is helping yet but I feel better having her drink these if she won't drink an EN shake a day mine as well be this.

Infusion tomorrow and the extra blood being pulled and weight taken...here's hoping the holidays with the Grandma's fattened her up a bit!
 
I think they are. On O's thread I mentioned a lot of fatigue. Since she has been eating these she has been back to her old self. There is a bunch of stuff out there about the Omega's in them and the protein and what a great source of energy and nutrition etc. Could be coincidence that she rebounded at the same time but just in case we aren't stopping.

We get them at Whole Foods. The Hemp Hearts are from Manitoba Harvest (orangish bag) maybe you could find a retailer by checking on their website. manitobaharvest.com.
 
You are so welcome. I at least owed you that and a whole lot more! Let me know how you like them and how they work for you. They are really yummy!
 
Crohns instinct thanks so much! I am going to go to Whole Foods this week and pick some of those seeds up as well. They sound like just what we need!
 
my little penguin said:
But I wanted to make sure all ( the Millions of FW readers ;) ) .
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Come now mlp. Millions???? Thousands maybe.:rof:


Grace is not eating and the pain is there.:(
Hoping the day will settle down for her.:hug:

Today is my big clean day. Holiday/Travel/Sickness=Dirty House:voodoo:
 
Yes, it is more than one and it estimates the amount of elemental iron carried in the blood and stored in the body tissues.

Dusty. xxx
 
No more blood but no poo either.
She's diffidently more.....worked up, tired and keeps trying to poo but can't.
More leg pain and now weakness of the left leg.

No call from Devos.:voodoo: I'll call tomorrow.:ysmile:


I'm tired and have told my 5 yr. old he can stay up with daddy until midnight.
Now I don't feel so guilty when I go to bed and leave the hubby alone!:D
 
my little penguin

Is there a video on n-g tubes and feeding. I want to see it!
I told ya I can't navigate new web-sites. I JUST figured out this one.:voodoo:

To tell ya the truth I'm getting a little nevus over using the tube.
I'm getting nerves over the whole thing. It might be because of seeing her get worse and now that I know what this is I feel a little stressed. MAKE SENSE? If it does to y'all, explain it to me PLEASE! :shifty:

I need to sleep. Good night and good New Years! Who knows what the future holds.

If I disappear for a few day it's because we're downstate and I still have no fancy pant phone to type on. Enjoy the silence while I'm gone!:dance:
 
We are dealing with an NG tube - which involves some different education than the G tube. Here are two very important points:

Do not go home from having the NG tube inserted without someone teaching you how to check that the tube is in the proper place. There are two methods to do this, and one involves drawing out a small bit of stomach contents with a syringe, and the other involves pushing in a tiny amount of air with a syringe and listening to the stomach with a stethoscope for a bubbling or burping sound. Please get specific instructions from your doctor or nurse and have them show you how to do it before doing it on your own - do not take my advice as medical instruction. There are specific details and amounts to know before doing this. Instructions on checking placement that I have found vary from doing it before each and every feed to doing it once a day - please check with your own doctor.

The NG tube will need to be flushed with water using a syringe. For us, it is before and after every feed. Again, please check with your own doctor as to when they want you to do it and what amount of water they would like for you to use.

Both of these things are quite important, and I just want to make sure that everyone has this knowledge when they come home with a new NG tube. Sounds like common sense stuff - yet I did not know either of these things and if not for KFA I still might not know about them.
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From:
http://community.kidswithfoodallergies.org/displayForumTopic/content/3682717251787386
 
Farmwife said:
I'm getting nerves over the whole thing. It might be because of seeing her get worse and now that I know what this is I feel a little stressed. MAKE SENSE? If it does to y'all, explain it to me PLEASE! :shifty:
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I sooooo know that feeling...

You have a child that is visibly ill and only getting worse. No one has answers and you find yourself living on your nerves. You are wound up like a spring and ready to take flight like a gazelle at any moment. Then finally you have an answer! At the same time you realise you have been holding your breath for so long that the relief of letting it go is heaven.

This heavenly feeling lasts not nearly long enough because as the cold hard light of dawn strikes so does reality and the uncertainty of the unknown becomes the uncertainty of the known. There are many differences but just as many similarities and yet it all equals the same thing...continued stress, worry and heartache for the precious child in your life that you hold so dear.

There is one constant unchanging thing though: You are not alone, you are among friends that know exactly what you are experiencing and that is priceless. :)

Dusty. :heart:
 
Hi farm wife I just wanted to say I'm glad you've got some answers about Gracie and your mummy instinct was correct . My instinct kepted pushing for Lewis to , hope her bleeding settles down lew had some streaky bleeding for about a week after but they took lots of biopsies and one from were his scar tissue was in his rectum. Hope you have a settled new year , I'm currently up at 3.30 am u.k time with lew he's having a rough time at the minute let's hope now we have our diagnosis we start to get our babies better
 
Ditto to MLP's post re: being sure that you feel comfortable checking tube placement. And Dusty always puts it so eloquently. So I have nothing to adsd but love. Happy New year, mama, and may 2013 be the year that sweet Grace finds relief. :heart:
 
I haven't had time to catch up on all the threads - I ust wanted to say I am both sorry and relieved that they found the inflammation. I hope the EN gives her some relief and is not too tricky - sending lots of good thoughts and hugs your way xxxxxxxxxxxxxxxxxxxxx
 
I'm sorry you and Grace have been having such a difficult time. My only advice would be to take it one day at a time. You need to find out what the biopsy report says and whether the inflammation that was seen means Grace has IBD. As David has pointed out, you can have inflammation in the GI tract for other reasons than IBD which could be BETTER for Grace. You can get inflammation due to colonoscopy prep, infections and NSAIDs and some inflammation may resolve by itself. So I know it is difficult to be patient for a diagnosis when your child is sick but it's best to have the correct one! In terms of NSAIDS, when was the last time Grace took them and did she use them a lot in the past for her pains? NSAIDs can cause inflammation in the gi tract and also aggravate IBD.

Hope Grace will be feeling well soon!
 
Sorry to hear Grace keeps getting pains. I hope she has managed to go poo and the blood is stopping. Frustrating when the docs are off for holidays. Always amazes me how much manages to happen at weekends just when there are fewer people to help.
 
Dark blood in her poo again.:voodoo::voodoo::voodoo:
But normal came behind it. Hopefully that will be it.:shifty:



xmdmom said:
In terms of NSAIDS, when was the last time Grace took them and did she use them a lot in the past for her pains? NSAIDs can cause inflammation in the gi tract and also aggravate IBD.
!
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xmdmom Grace hasn't use those in a year or so. Even before that she never really used them to much. We've always favored Tylenol for all of us here.:heart:
I've looked at the hubby twice and said the inflammation could be from something else. He smiles and said...you optimism is cute!:eek:


Called again and NO ONE IS IN UNTIL WEDNESDAY!:voodoo:
I can't believe this. She has a dx and still have to wait.:voodoo::voodoo:



Good news. I got a new pair of cowgirl boots. :dance:
Happy New Year to mommy!!!!!:wink:
 
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Call Devos and ask for the On-call if your are worried. They change so often during the Holidays I have lucked out and gotten Rowans actual Surgeon. There should be an attending GI at the hospital during the day. There always is @ Mott's so hoping this holds true at Devos.
 
When I called before the nice GI said that it's to be expected because of her dx. If she has fevers or "goes down hill" to bring her down. I'm not worried yet. I think it's just left over from the colonoscopy.
 
I remember when Johnny was first diagnosed. I kept thinking "maybe they made a mistake and they will find out it's really just some sort of infection" ... I really wanted it to be something else but Johnny's diagnosis was pretty cut and dry. I think it is absolutely normal for you to have a certain amount of disbelief. I know too once you settle on a course of treatment you worry "will it work?", "what if it gets worse?", "how long will it work for?", "what is our next option?". No wonder your head is spinning. But somehow you find a way to live with all of these questions because I don't think they ever go away. It's just part of this disease.

There are so many things to be grateful for. Grace is getting great care, two parents who love her and will take care of her. She also has lots of treatments options available to her and new ones being developed. My heart breaks when I think of some small child in some 3rd world country somewhere suffering from this terrible disease with no medical care. You will figure this out. And you will learn to live with this new reality. Some questions will be answered and some probably won't for now. But one thing is for sure that you are doing everything in your power right now for your little girl and that is all any of us can do. :heart:
 
So sorry to hear that you are still having to wait for responses from the docs. I hate waiting to start treatments and I hate waiting for treatments to work. :voodoo:

Is the hospital not going to teach you and Grace how to insert the NG tube??? I think it would be helpful to have someone who is used to inserting them (preferably in children) show you how to do it the first time. If the GI docs aren't willing to set this up for you maybe you could call the hospital and set it up yourself. Or maybe there is a community health nurse who could come to your house to help you with it. Or maybe you know a nurse who could help you with it the first time. I am not doubting your abilities, I just know I would have wanted someone who had done it before around to teach me how to do it.

One tip we used when starting my son on the NG tube was to coat the end of the tube in the numbing gel you use on teething baby's gums to numb the inside of the nose. It worked pretty well and after a few times he didn't need it any more.

chronnsinct or tesscorm once posted a GREAT video of a girl inserting an NG tube. I will try to find it.

:hang: it will get better
 
Twiggy930
Her GI said he would set up a home Heath care nurse to come the farm and show me how to do it. I was under the understanding it would be a permanent placement of the tube.

I've been thinking though....I would prefer to go down there. I'd rather have a nurse that's worked with children and put the tubes in. Also I want to talk to the GI face to face. I have more questions. It's just last time we tried this EN she bleed a lot. That's what got us the scopes in the first place. The GI never found where the bleed came from during the scopes. Meaning it's in the part of the GI track the scopes can't reach. MRE, in my mind should be done. I asked him but he didn't think that needed to be done yet. I guess I don't agree and he has to explain it to me better. Lots of questions in my mind.:( It could just be nerves?:smile:
 
Hugs
Ng tubes are NOT permanent placement.
Grace will and can pull it out/ cough it out etc...
You need to be prepared on how to put it back in.
You will need to learn how to care for it ( flushing , checking tube placement etc...)
Since she bled badly on boost kids you may want to ask for an amino acid based one without milk protein ( neocate or elecare jr.) discuss with your gi
You will need a kitchen gram scale for these measure the formula by the gram NOT with the scope it can make a big difference.
Or just order the juice boxes e028 splash
That way if she wants to drink them she can and no mixeing on your part.
 
E028 splash is amino acid as well- no juice ;)

I think it's good you want to go see the Gi .
Just be prepared it may be up to a another full week until you get all your ducks in a row with insurance coverage etc... Since its already Tuesday
 
NG tubes can stay in as long as 6 weeks, but placement should be checked at least daily, as it can come out of place when she coughs or if she vomits.

(Although Izz vomited when she first got hers...I believe it came out of the stomach and went into the esophagus at this point. I believed I was checking placement but because I wasn't ever properly taught, I was probably hearing air whooshing into her esophagus, not her belly). The imperative thing is that it isn't in her lungs-and yes, I would go to the hospital to get it done, preferably by someone who has done them in peds. Ask for the throat numbing spray. :) We were told we could go back in to get it put back in if necessary. :)
 
Nothing's permanent. But once you watch and learn a few times it you will feel more confident than the home nurse. That is how I was with the home vac changes. I was instructing the nurse before long. Kinda crazy how quickly your new normal can set in. You'll do great. Rowan didnt have a feeding tube but a suction tube I am sure the placement is similar and in just sleeping it got moved, granted hers was a way bigger of a tube I am sure, but she needed two replaced during her takedown bc if this fact. I learned how to get the suction working how to hook it up how to switch to a portable without needing the nurse to help me. It became my new normal pretty quickly. Granted I never had to put one in but there were issues where it had moved in her stomach and was sucking on the side wall instead of in the middle where it was supposed to be.
 
http://community.kidswithfoodallerg...nt/3682717251787386/reply/lastReply#lastReply

If you are not sure about NG placement and the things that Amanda suggested aren't giving you anything, you can open the port and hold it in a small cup of water. If it is in or near the lungs, you will get little bubbles coming out of it. I often can't hear the little "woosh" from the air going into the tube and sometimes don't get stomach contents back. This is what they told me to try.
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Ask your Gi about this - not sure ....
 
my little penguin said:
E028 splash is amino acid as well- no juice ;)

I think it's good you want to go see the Gi .
Just be prepared it may be up to a another full week until you get all your ducks in a row with insurance coverage etc... Since its already Tuesday
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MLP this is it. I knew the kind he said ended with a splash. :hug:

He also said a kind of drink that started with a P I think. Keep in mind I was in shock at the fact that the biopsies came back so quick and that they saw something and the her GI was concerned now.

He also said I could keep her on Boost until the EN happens. I might go get some more. She's constantly hungry but only wants a few bites.:( The shakes might help fill her up.:kiss:

The GI I talk to said going down there might get things moving faster.
I'll ask tomorrow. I'm OK with going if it would be the best. I just want to learn to do it right. She's only three and I know mentally she's already dealing with so much. Each time she goes poo she begs me not to put the medicine in her butt. Poor girl. I hate this!:(

Thanks everyone!:hug:
 
Peptamen junior is the other one that starts with a P.
But it has milk protein just in peptide form.
Call neocate in. The am they will send you a six pack of three flavored ( 2 each)
So she can try them
You want one she is willing to drink so you can continue at half dose once she is done.
Orange is the best I think but I am an adult.
 
my little penguin said:
Peptamen junior is the other one that starts with a P.
But it has milk protein just in peptide form.
Call neocate in. The am they will send you a six pack of three flavored ( 2 each)
So she can try them
You want one she is willing to drink so you can continue at half dose once she is done.
Orange is the best I think but I am an adult.
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What mlp?
 
1-800-365-7354

Call neocate - the company they will ship 6 juice boxes to your house to try.
For free
Two of each flavor
Your Gi may have samples as well.
 
I called already. Left a message. Thanks.
If she could drink it, then a tube won't be necessary right?
She was able to drink 6 boost a day before. But then again over time she might stop. HMMMMM........
 
Boost Kids Plus- Or was it Boost Kids Complete
I forget. I hit my thirties and am just happy if I remember my name!:rof:
 
30!! Pup!!

I was only asking because if I'm not mistaken they all have gluten and milk protein except for Boost High-protein. We buy those for EJ to try to add nutrition.

Actually, after looking at their web-site, that is not the case! Eh well, just grasping at straws!
 
Hey FW: weren't you using some NSAIDS recently when Gracie was doing very poorly with fevers and such? Maybe just maybe that could help explain the inflammation. See I am in that bubble with you...BUT about to drag you out...honey, you really do not have a dx yet. Maybe that is why you are still feeling so nervous. Basically all they have told you is yes there is inflammation...not really the definitive cause...so cut yourself some slack..of course you are nervous.

I hope the EN works and the girl inserting the ng tube video was on O's thread. Will try to go get it for you.
 
Your right! Shocking I know.:tongue:

I gave her a dose of mortin when her knee was hurting for hours on end. I think I did that once or twice. That was awhile ago.

Ohhhhhhh......maybe the bubble can come back! You can have the rocker next to mine.:hug: My front porch looks over a beautiful meadow and lake.
 
Farmwife

In terms of the ibuprofen, I'm confused because your earliest post said you were giving it to her in April. Is that when you stopped?

It's still a mystery as to where the blood is coming from if there were no ulcers seen. I don't think microscopic inflammation causes visible blood -- does anyone else know? Please ask your doctors about this, ok?

In terms of the EEN, it's helpful in Crohn's but apparently not in UC. I'm sort of surprised your doctor wants you to do this giving a clear diagnosis of Crohn's, or perhaps I missed it. If so, forgive me. I could imagine Enteral Nutrition if Grace is underweight-- is that the issue?

Hugs to you and your family.
 
If she is willing to drink the splash then no tube needed.
Splash let your Gi bypass a whole lot of "stuff" to fix her since as others said you know right now she has inflammation which can be caused by lots including food.
Good luck
 
Nope xmdmom your not confused I forgot that I DID give her ibuprofen for knee pains. I'm looking over my journal as we speak to see when and how much. I tell ya this is what happens when your a older mother. I'm just happy if I can remember my kids name!

Good question about the blood. When the scopes came back clear in the stomach (where we assumed the blood had come from) my hubby asked about where the blood came from. The GI didn't have an answer. Remember he didn't think she had anything wrong in the first place. When I asked him on the phone after hearing the biopsy report he still didn't give a clear answers which is why I asked for the MRE. I believe her problem is small bowel that the scope can't get to? Does that make sense? The GI said no to the MRE.:(
 
:ghug:Thanks crohnsinct I watched the video with Grace. Thanks that girl did a great job.

If she could drink this I would be so much happier!:yrolleyes:

I'm off for a few days.:hug:
We've been so sick that we've had NO Christmas break.
I'm planning some sledding parties, mall trip and crafts.
Also visits with some friends and family.
I'm really looking forward to it.
I just pray Grace holds out. She needs some fun too.
 
:ymad:One thing to also keep in mind some insurance's only cover formula if its taken by tube

So at four boxes a day ....a case would last 6 days .
So 8 weeks = 9 cases
 
Not true with the Children's Special Health Care through the state of Michigan she will have and they will go back 3 months. Mine are covered and Rowan drinks them. The office will have to go through a pre authorization process pushing it through the first one showing it was not covered by her primary and then the secondary will send her a letter and for how many months they will cover it. It took about two weeks.
 
Mary wasn't yours only going to cover peptamen but not the amino acid one?
That may be something else.
Ours covers DS 100% regardless of kind without a tube but most don't .
Some won't even cover with a tube .
 
That was hearsay that the dietician told me about elecare only. So far we did get Peptamen Jr, Nutren Jr, and PediaSure Peptide covered. I don't think the ladie wanted to give me her Elecare from the milk room. She was being pushy kind of about the PediaSure Peptide, said Rowan would waste it bc it doesn't taste as good. She had never actually even checked with our insurance. Just was stating her opinion.
 
I think most insurances will cover it as long as the doctor writes a letter of medical necessity that is what our doctor had to do. It took a few days but was covered in the end.
 
Hope you have a really nice few days catching up on shopping and visiting friends. Glad you are all feeling a bit better again!
 
Dexky said:
Yuck!! You'll need a feeding tube for that too!!
Click to expand...

A feeding tube???? BAH! and waste tasting the delectable combination of chocolate and alcohol?? Surely you jest, Dex!

FW...enjoy your time off with thoselittle ones...:heart:
 
Accidentally hit unsubscribe. So just posting to get the updates back, hope Grace is feeling better, let us know how the doctors appointment goes as I am sure you will.
 
Quick update! Sorry this might be vague as I'm heading out the door.:rosette2:

JUST hear from GI nurse.


Inflammation is Chronic and acute.

The rectum had no inflammation but had (sorry forget the name) something that had to do with allergic reactions that's normally seen in the blood.

He took 6 total biopsies. That's it! :yfrown: 3 from upper GI and 3 from lower GI track. TI, colon and rectum for the lower.

They sent the report to her GP. I'll try to get that soon.

NG tube for 1 month and then a phone consult with the GI to judge how it's going.

Could this be Allergic Colitis? I've heard of it before. That's along the lines of ME.
Any thoughts?:shifty-t: I know your not doctors!:ybiggrin: Well most of you!:cool:


:soledance:We're having a great time. She's sleeping through most of it but she's such an angle when she sleeps.:biggrin:

Sledding, cookie making and friends visit tomorrow.:thumright:
 
Thanks for the update. Go have some fun with Grace and hope you get all your questions answered soon and she is back to a healthy happy little girl
 
Get the biopsy
May be eosinophilic colitis - they would have found EOS in the rectum
Basically - used to be called allergic colitis - since infants couldn't handle milk and would bleed.
This what Gi was convinced DS had before he was dx.
If its allergic colitis - the fix is no milk
But if its EC it is much more complex
You can also have EC and IBD.


Treatment for EC is steriods and elimination of food triggers
The EOS cause the inflammation and scarring.
There are no real drugs.
Just steriods ....
Most opt for a diet free of the top eight allergens
Milk wheat soy eggs tree nuts peanuts fish and shellfish
75% clear on this diet meaning they rescope and there are no EOS present
If not they go in an elemental diet ( aka splash or neocate or elecare)
For 8 - 12 weeks and rescope
If that's clear then ...
Slowly trial in 1-3 foods every two to three months then scope to confirm no EOS .
Once you get enough food back the. No more formula.

If she had EC you need to schedule an appt with Cincy cced today .
The wait list is close to a year- maybe less now- they hire another Gi so maybe two months again for their week long program
Kids from around the world try to get in --- yes it is that good

Or national Jewish hospital in Denver .

EC is very rare and fewer Gi know how to properly treat it.

It can cause a lot of damage if not treated properly.

Links you will need
 
Eosinophilic Colitis (EC)



Eosinophilic colitis is a rare disease in which a type of white blood cell, the eosinophil, causes injury and inflammation to the colon. Eosinophilic colitis may affect both adults and children. The cause is unknown in many patients. Some infants may have milk-soy protein intolerance which may look like eosinophilic colitis but is typically outgrown.



Symptoms:

Vomiting, nausea, diarrhea
Difficulty feeding and/or gaining weight
Poor growth and weight loss
Abdominal pain
Bloody diarrhea
Anemia (low blood counts)
Malnutrition
Fatigue


Associated Diseases:

Environmental and/or food allergies in some
May occur in conjunction with other EGIDs


Causes:

Unknown


Diagnosis:

Lower endoscopy or colonoscopy (placement of a lighted tube into the anus, rectum and large intestine)
Biopsies of the large intestine are necessary to make the diagnosis. Eosinophils causing injury on biopsy, in the context of symptoms consistent with EC


Findings:

Endoscopy may show erosions, ulcers or irritated areas of the large intestine
Biopsy: Eosinophils invading the large intestine. Biopsy may show chronic inflammation. No consensus recommendations on definition or diagnosis.


Allergy Testing

Allergy testing may be helpful in some patients to identify and remove offending food allergens.


Treatment:

Avoid known food allergens or triggers
Systemic Steroids (prednisone)
Elemental diet (avoid all food protein and obtain all nutrition from a special formula)
Iron supplementation if iron deficient
Nutritional support as needed
Anti-inflammatory medications for the large intestine
Topical steroids (
Click to expand...

From:
http://apfed.org/drupal/drupal/Eosinophilic_Colitis_Quick_Facts
 
Glad you are having a good time. At least it's not long till you can discuss everything about the biopsies. My super brain has no info on allergic colitis - sorry :blush:
 
OK David and MLP and everyone else.:dance: I have the biopsy results.:shifty: I just have to figure out how to scan them get it on the forum.:ywow: I should be able to post the results in a year or two.:D
 
I hope this worked!:D

If you give me good news I'll send you a farm wife fantastic home-made apple pie.:dance: Good news means you tell me this is a easy fix!:kiss:
 

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