Farm Girl and EN

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OMG! I never noticed that with the dancing poop! Ya snuck that one in didn't cha David! :poop:

How is Grace going today Farmwife?

Dusty. xxx
 
We were told to stop all the vitamins supplements during the EN.
What comes to the stools, they warned us that Neocate will make them green and loose. And yes, they are like water, sometimes green but mainly yellow. But my son has ileostomy so maybe it is a bit different case with him...
 
:ywow:GRACE IS OFF EN!!!!!!:ywow:

That's right! Welcome to my life on a roller coaster!
Highs and lows, all the mean while I'm screaming I want OFF!!

Grace got MUCH worse today!!! Belly pains beyond bad while drinking the stuff!

My doc just called and said take her off and put her on just meat, veg. and rice for now.
See how it goes during the week-end and we'll recoup on Monday at his office. He said it could be an allergen or since her tummy pains were coming before starting EN, it aggravate something further. We both DON'T want her back on ulcer meds UNTIL we find out what's causing it!!! Doc said something about the GI and calling on Monday and get a final yes or no. I think he meant he would do it! :shifty:I think???:shifty:

:rosette1:Anyway thank you all for contributing to Grace's short lived EN experience.:medal1:
BTW the shakes are easier for her then veg. and rice which she HATES.
Tell me can I fit those things in a tube????:D

Yes I brought up EN's out there that are made for people with allergens but right now he feels another coarse of action is need!

:shifty:My poor hubby doesn't even know this. I have some brownies with frosting to soften the blow.:wink:
 
Catherine,
I will have to call it


MEAT,VEGS, RICE and THE HORRORS OF IT ALL!:ytongue:

I tell y'a she HATES veggies and any kind of rice! Has since 1 yr. old.
If I could just cover those things in chocolate we would be covered!:D
 
Farmwife said:
Susan2
A wonderful idea. Now I wonder if I could do that to my hubby and son?????
Click to expand...
After I had my proctocolectomy, my gastroenterologist said that pureeing it finely would be the best thing for me to do with my food because I would get more nutrition that way. He did admit, however, that it might take all the pleasure out of eating. :eek2:

Needless to say, I didn't follow his suggestion. ;)
 
On a serious note, I have no large intestine and only about 2/3 of my small intestine left, so I have some problems digesting vegetables. When I am making a casserole or stew, I do grate some of the vegetables (carrots, parsnips, beetroot, ginger) and cut the others (leek, celery, fennel, etc) very finely. With long, slow cooking these end up almost as a sauce, which you could, in fact, puree if you wanted it even less identifiable as vegetables. The meat will flavour it and help to disguise the vegetables, too. (I have a casserole of gravy beef - osso bucco without the bone - in the oven at the moment
yummy.gif
).

This won't work with green vegetables, of course, but might even fool hubby and your son.
 
Oh no!! Sorry to hear the EN made her worse. How did the poor husband take it? I was also going to suggest making a kind of soup/casserole with the meat, rice and veg, but some people beat me to it! :thumleft: Hope she isn't too bad over the weekend.
 
Since it is only for a couple of days maybe go to a lighter type of diet??

Does she like soups?

Dusty. xxx
 
DustyKat my girl is soooooo picky. Always has been.
Very WILLING to go to bed HUNGRY to not eat what's on her plate.:ywow:


OK NEW thought out of desperation!:frown:

She had a shake this morning and NO pain yet. :thumright:
She still is not going poo normally.
If she could go poo every day would that help the shake to get through her stomach with out causing problems????

As far as my hubby, he wishes we could leave her on it.
But he also know she can't be in that amount of pain everyday.
Soon she would be scared to drink them.
 
One thought
You said she didn't drink milk regular ( cow version) due to lactose .
But if she is milk protein intolerant then you would have to slowly increase the number of shakes over a number of days .
With my older son we had to do this around age one.
1/8 cup milk the rest water for a few days then increase until he got to a full glass .
When we put DS on EEN we were told by the Gi to slowly increase it and to not go from all food ( with one or two boost a day) to 7 peptamen jr a day overnight since that would make him sick. We slowly doubled his intake while still on food until he was able to drink all 7 in a day . Just something to consider.

For DS at least when he is not doing well veggies come out the way they go in so it was really pointless.

Some kid friendly veggie idea
Plum kids makes squeeze friendly veggie fruit smoothie things which could get you through the weekend- target carries them

http://www.plumorganics.com/products#kids

Other ideas
Chicken and rice soup
Rice bread with strawberry
Rice crispy cereal/ puffs
Is she allowed eggs?
Make a eggie bake with purée veggies in it.
Rice flour/ potato/ soughum etc muffins with blueberries
And sweet potato or squash dinner rolls( no milk required )
Hugs
 
UPDATE:

She went poo and blood dipping out as she pushed and stool that's jet black.

Alright I've had enough!
 
Call the on call Gi
Now not Monday
Explain grace is a patient of dr xyz
And now has blood and black stool.
Our Gi is ok watching and waiting many things but black stool is not one if them.
If they don't call in a timely manner
Take her to the kiddie er where the Gi is or another kiddie hospital to been seen.
If she doesn't look right your mommy gut is telling you it's not right take her to the kiddie er.
 
Agree with mlp. They might scope her as well and figure this out once and for all. Can't stress enough how important the Children's hospital is. We learned that lesson the hard way :(

Good Luck :ghug:
 
Called the GI on-call and he said to get her to our local hospital (Which is the the largest in our area and highly rated) and he wants them to run labs and take vitals. He said HE will be in talks with them and if something sounds wrong to me ask them if the GI OK it.
He said the distance is just long enough that he doesn't want something to happen on the road. He did say that it sounded like a MAJOR internal bleed somewhere.

Grace is happy but she can't sit. POOR BABY!
 
Holy crap. Omg I hope she is not having an internal bleed. Is she on any iron for her bleeding? I am hoping this is the source of the blackened stools. On pins and needles keep us posted. Where are you taking her? Praying it is a children's hospital. A hospital that doesn't specialize with kids can be a nightmare for kids. They don't have the right needles for IVs or gowns or the knowledge. Scared for you guys.:shifty-t:
 
Last edited:
Oh no! I know what you are going through. I hope everything goes well and Grace gets some relief very soon!

I am thinking of you.
 
Oh my goodness Farmwife! Poor you and poor little Grace...:hug::hug::hug:

I hope you are being well looked after hun and Grace is getting the care and attention she needs from the doctors and nurses.

When the dust settles a little hun it may well be the right time to push for the scope if they don't suggest it.

Sending loads and loads and loads of love, luck and healing thoughts your way!

Dusty. :Karl:
 
Thanks everyone!
Were home now and torn.:frown:
I told the ER doc and nurses to call the GI 3 times. Never did!
They took Grace's labs. All but three came back fine.
Grace was happy and full of ...ya know!
Sent home because it's clear to SEE she's not suffering.
They saw the pain when she drank WATER!!!!
Rectum to swollen for exam.
But hey, she's happy!:medal1:

Called GI and he said our GI is gone all week long but since labs look good..... call on Monday and see what the covering GI wants to do. He said if it gets worse come on down. I ASKED for scopes but he said that's up to the on call GI's evaluation of Grace.
So here I type again in disappointment. Still don't know what to do.
Her WBC is the lowest it's been.
Her Lymphocytes our so low it's called something now. Forget the name.
MCV is way up there also. But don't worry she looks HAPPY!!!!
She was dripping a little blood again when she just tried to poo.

I have to get everything ready for Sunday Church.
Yes it takes me a whole day to do it.:ybiggrin:
99 percent of preparing is for the kids and hubby.;)
 
So very sorry to hear all this! I sympathise with the "she can't be that bad, she looks happy" :ywow: Ridiculous they sent you home again. I am very angry on your behalf! Hope the GI does something on Monday - rolling pin ready!
 
Sending loads of these your way Farmwife...:hug::heart::ghug:

Ugh! It is just this sort of thing that makes having an invisible disease so frustrating, heartbreaking and damnable. :(

Thinking of you and your Princess, always. :Karl:
Dusty. xxx
 
Catherine said:
Poor baby.

is lymhopenia the word your looking for.
Click to expand...


Yes Catherine I think thats what it was. Do you know anything about it? How low does the level have to be to be call that???
The ER doc said our GP can handle it. ;)


Update:
Grace had another BM with no dripping blood but stool is very black still.:ywow:
I did get a sample of that!:D
 
Definately time for a scope - not quite sure what other motivation they might need other than dripping blood and black stool!! Glad you managed to catch some of the latest poo. Why don't you try writing absolutely everything down for the whole of tomorrow. When Amy was in hospital last week we were told to write down every time she was in pain (including the time) - it certainly made them take notice (not that it helped us).
You could make a note of every time she seems really sore, what her level of pain is, where the pain is, bowel movements, joint pains, etc. Then when they see Grace, you can present them with an itemised list of what happens in just one day.
 
Thanks Sascot.
I'm doing that already.
I didn't think to take it to the ER.
I will take when we go down state.
 
Hugs- if for any reason she gets worse take her down state to the Gi .
And call the on call Gi .
Hope the covering Gi wants to get to the bottom of her issues.
 
Sarah has had low lymphocytes for over 12 months but in August they started call it mild lymphopenia. The first time word appear it was combined with a bordineline white cell count.

Action taken by our gi repeat full bloods.

With the repeated blood the lympocytes when up slightly,but white cells no longer bordine low so no need to worry. Still mild lymhopenia.

GET THE TEST REPEATED.
 
I think high mvc has something to do with b12, will get back to you on that after I complete one of my many trip to dancing today.

Called David as B12 is his thing.
 
High mvc means the red blood cell are too big. You gp needs to work out cause, one cause is low b12.

Low mvc means the red blood cells are too small. This can be caused by low iron.

The little research I have done says that high mvc always requires the cause being found and treated.

GET B12 and folate done as well.
 
I have bumped my b12 thread for you.

We need one of those people good at explaining like Dusty or Aussie.

This is my understand you could two things at play with the MCV.. We know that Grace is bleeding which can cause the MCV to decrease but also low B12 which could cause the MCV to rise. So the MCV is being pulling in both directions.

Does explaination make any sense.
 
Thinking of Grace and you! I hope she is doing okay now, I am anxious for you both. Please continue to keep us updated!
 
Hi Farmwife and Catherine,

Firstly to the lymphopaenia - your white cell count is made up of a number of different white cells (principally neutrophils and lymphocytes). If one of these are low, then they may cause the over white cell count to drop below the normal range.

When the lymphocytes are low (lymphopaenia) there are a number of things you need to look for. Firstly how low, then compare to previous results to get a trend. There are a number of things that can cause to lymphocytes to drop - stress, infections, drugs, etc. Always worth repeating the test and see if it's still dropping or starting to improve. A short lived drop is much less concerning than a prolonged lymphopaenia which would need further investigation.

In regards to the MCV (mean cell volume - how big the red blood cells are), there are a number of factors that can both increase and decrease the size of the red cells, and you can have two competing factors at play which will lead to an "inappropriately normal" MCV. When looking at the MCV, need to look at the number, how far out of range is it, then look at previous results to get a trend of what the MCV is doing, is it a sudden rise or a slow one, etc.

As stated previously, B12 and folate deficiency (and thiopurines) can lead to a rise in the MCV, as iron deficiency (and thalassemia) can lead to a fall.

GI bleeding is a little tricky, long term GI bleeding can lead to iron deficiency as the red cells are full of iron, which will cause a fall in the MCV. However, acute GI bleeding, depending on the severity, can cause a reticulocytosis (immature red cells (reticulocytes) are pushed out of the bone marrow into the blood stream to make up for the blood loss), these immature cells are larger then normal red cells, leading to a rise in the MCV.

Given that Grace has black stool, which is concerning for melaena (when blood is digested, it turns black, usually from higher in the GI tract, as bleeding in the colon tends to come out red, darker red if earlier in the colon, and bright red as you get closer to the end), then the higher MCV could indicate acute blood loss, which should be addressed reasonably promptly. Is Grace anaemic? Important to keep a close eye the haemoglobin when there is active bleeding.

Good luck, hope it all turns out well.
 
OMG - I can't believe they just sent her home!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I really feel for you and totally hate the 'well she looks happy so she must be 100% healthy' attitude - we have that with Freddy also - I hope and pray that your GI orders some scopes as the others have said - what more evidence does he need to order them!!!!!!!!!!!!!!!!
sending big hugs xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 
So sorry they still haven't taken this seriously... I can imagine how frustrated you are. Really don't understand what they're seeing or not seeing that's leading them to believe it's okay to send her home?!?!? :ghug:
 
Update:

Bad belly pains last night and blood in her stool this morning.:confused2:
Second BM in afternoon but NO blood and no stomach pains before hand.
Any thought as to WHY?:ghug:
Still plan on heading early tomorrow morning.
Of course we all know how fast plans can change.
My son is starting to get a barking cough. OF COURSE!!!:yfaint:
 
Elevated MCV can indeed be a symptom of B12 deficiency (and plenty of other causes as well of course). What was her B12 level last time she was tested and when was the test done?

*edit* Boy am I late to the party! Sorry :(
 
Thanks David. Her level was the lowest of the low end. Sorry I don't have the paper with me. Crazy around here.

Update:
Leaving Tuesday with a new plan in mind.
Thanks everyone for the support it means the world to me.
 
Farmwife said:
Update:

Bad belly pains last night and blood in her stool this morning.:confused2:
Second BM in afternoon but NO blood and no stomach pains before hand.
Any thought as to WHY
Click to expand...

Hi Farmwife, when you have a GI bleed, the blood in the intestines isn't well tolerated, causing pain and cramping, acts as a strong laxative too (if you bleed enough). Might explain the pain with the bleeding.
 
Thanks Aussie and everyone!:hug:

Grace had no blood in the stool this morning but now the stool is runny.:yrolleyes:
The stool however had a lot of mucus.:confused2:

Lots to do today to get ready for a trip in which I have no idea how long I'll be down there.:eek: I think I'll take each of us a change of cloths just to be on the safe side.:smile:




:ghug:

Good bye y'all for now.
Stay safe and pray I make it out of the city alive.
Of course my trusty rolling pin of defense (Patten still pending) will be attached to my side.:rof:
 
Just caught up on this thread. What a roller coaster! I am thinking of you and your family and hoping that the docs get on top of this soon. FWIW we had to camp out at the Children's Hospital a few times to get timely care.

:hang:
 
Just heard from the GI nurse and the Doc on-call wants me to go to the closest lab tomorrow and pick up stick to test for blood in the stool and a sample to test for white blood cells in the stool. Of course go to the ER if blood gets bad again they said. That's it right now.
So my day has not gone according to plan and my night will involve tears as I hold Grace as she poo's or tries to eat.
Sorry feeling quite low tonight.:frown:
:heart:Talk to everyone in a day or two or three or more.:heart:
 
My heart is hurting for you and Grace! Hope she manages to go poo so you can get that sample without too much pain! Will be sending warm thoughts across to you. Hope Gunner's cough hasn't got any worse.
 
:hug::hug: Hugs Farmwife! I am so sorry about the rollercoaster for you and Grace! This is so frustrating and I know how awful it is to watch your child suffer.

I say take your suitcase and your rolling pin...sit down in the ER/GI office and and with anger and tears in your eyes...tell them you aren't going anywhere until they do SOMETHING! Believe it or not, that does work! Been there, done that! And if they try to get you out...you know what that rolling pin is for!!! :voodoo::voodoo: Picture all of us protesting right there with you! Tell them they don't want you to call up your Posse!

I hope you get some relief soon!
 
Second that- I have told the Gi something has to change since what we are currently doing is not work then explain how you have to hold her to have a BM .
The tears etc...
Sometimes they only hear symptoms xyz not child in pain.
So go into detail as necessary.
Hugs
 
Hugs! Just wanted to say thinking of you guys and praying these doctors listen and help Grace find some relief! Like MLP said keep pushing and make them listen!
 
I regards to the stool test. If she poops catch it in a hat and fill a clean pill bottle, brown bag it and store in refrigerator and take it with you if she goes. They can test it right in front of you.
 
Thinking of you and your little Princess and sending loads of love, luck and healing thoughts across the pond...:hug::heart::hug::heart::hug:

Dusty. xxx
 
ARRRRRRRRRG! - I ust can't believe they are not doing more for little grace - I think you should just go and camp out in ER or the GI office untill they do something - big hugs xxxx
 
I can't remember but did you grab that motility test appointment? What was that date? Just thinking maybe you should grab it because if they still aren't doing anything and that is the thing the GI wants then at least it is something and if it reveals her issues great, if not then maybe that is what he will need to move on to scopes.
 
Poor Grace, just getting caught up after the weekend in the big city and I was hoping to hear Grace was feeling better. Praying for you and sending loads of hugs your way
 
Just stopping in to check on you and little Farmgirl! I hope that your absence means something is getting done! Hugs!
 
Update:

Grace has 3 wonderfully days. Not so much as a knee pain or belly pain.
We started more Miralax and put her back on Zantack. All seems well so far.
She did have some black in her stool but we don't need to think on that right now.

We are seeking a second opinion from UofM Hospital called C.S. Mott's children's hospital.
The hospital in Ohio had a six month waiting list.
Her GI said in his notes that he wanted Cincinnati to give a second opinion on Grace's case. He wrote the Grace is a "hard case". I'm glad he see's that but I just wish he would have told me!!!! Just to hear the words we know something is wrong and he will figure this out, is something that would have made a huge deferents in my outlook.
Any way six month waiting is to long so we're hoping to get in to Mott's soon.
Devos social worker has been great and working with me every day to get stuff transferred to Mott's. She even said we're welcome back anytime. That made me happy to hear. I'm calling my doc to see if we can go to the rheumy at the same time at Mott's.

So there ya go. I'm happy and Grace is happy and drinking 3 shakes a day to put her weight back on.

:ghug:

Now if you don't mind I see another thread that's debating meds vs nutrition. I shall add my Farmwife advice to heat things up!:rof: I'm bbbbbaaaaacccckkkkk!
 
One piece of advice
Go to Motts
But also make the appt at cchmc
A lot can change in 6 months
And you can always cancel closer to the date if you don't need it
But at least you won't be another
6 months out.
 
I'm so glad she's feeling better!!! May the good days continue! :medal1:

And it does sound like things are moving along... more waiting :ymad: but at least moving in the right direction! :banana:

I hope she has more good days than bad while you're waiting for the appointment!!!
 
I second that MLP! Always be prepared is my motto. If you have to cancel you make someone ele's day. Grab those appointments. So motility study on hold until you hear wehat Mott's GI wants or are you going foward with that?
 
The mobilities study is six months down the road at Ohio. To long.
Which is why we want Mott's now. Rowen went to Mott's.
It's very highly rated. My twin is heading back their to get more care for my dear nephew that has a rare form of epilepsy that was triggered by a strep infection that got in his brain. Poor kid!
 
I hope you get to meet Chris Dickinson. He was wonderful. At the time he was the Director of the Department. He is one of the Attending GIs now. The man is so smart you can feel it when he enters the room. I really hope they help her. Best in the state. They do great too with making the kids comfortable. Everything is designed with kids in mind. Very high tech, and you never share a room when admitted. I pray they give you a second opinion that gets Grace a diagnosis.

I think yes on the getting the Cleveland appointment you might need that in your back pocket in 6 months.

Glad she has had some good days. :rosette2:
 
Sooooo glad to hear that Grace is feeling better and that answers are hopefully headed your way! I third that you should go for Mott's but keep the Cincinnatti appointment. Get on their cancellation list too! You never know. Ryan's first GI (who we just loved) works at Cincinnatti Children's now.

I feel for your nephew. I have some friends here who had a similar thing happen with Strept.

So glad you are back!
 
So happy to hear grace is doing good at the moment - and drinking her shakes and maintaining weight :)

Keep up the good work momma!!
 
Hello All,

I just bought rice cereal with banana pear & milk for my kid from
How much would you recommend this product for your kid?
Need genuine suggestions, guys!
Regards,
Sebastian
 
Hi Sebestian, how old is your child? What are you trying to do with the product/what seems to be the issues you are facing?
 

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