• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

I feel like the worst mom ever today...

izzi'smom

izzi'smom

Izz got her ng tube and has been crying since 3:30. She is finally asleep (8:30) and now it is my turn to cry.
I swear she has been in the bathroom twenty times today, plus she has vomited three times. Her belly hurts, she has an awful rash on her backside, and her throat is sore. She vomited up the 20 ml of peptamen I gave her...I feel so awful!!! She said today "Why do *I* have to always do this stuff" :(

So I am hoping against hope that her rash will be clear, her throat will feel better, and the Prevacid will work against her nausea in the am. A better day, right?! I feel like it can hardly get worse.

Plus my parents, after telling them it wasn't a good night for a visit, *had* to pop in for a visit. I love them to pieces but I truly had my hands full and Izzi was just beside herself crying. They brought her some lovely flowers and me a beautiful ring for my birthday but AARRGGHH! Plus I had to put my pj's on and say goodnight three times to get them out the door.:angry-banghead:

Thanks for listening, and anyone doing EN have vomiting problems? We are doing 5-7 cans a day via gravity feed instead of night feedings per our doc's preference.
 
Last edited:
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Oh sorry Ang! I don't know anything about the EN but I do know how heartbreaking it is to see your child so ill. I hope things are better for her tomorrow!
 
izzi'smom

izzi'smom

Now if I could quit feeling sorry for her and go to bed! I'm on a second glass of wine and considering a third :) Tomorrow won't be great for either of us if I don't get to bed soon lol!
 
Crohn's Mom

Crohn's Mom

Moderator
Awe Angie, I'm sorry for Izz...and you!
I know this is breaking your heart :(
Tomorrow will be a better day right !
I can totally empathize with the o so caring grandparent scenario as well.....they mean well I guess right ? lol
Go on...have the 3rd lol...and then REST honey :) You deserve a good nights sleep!
big hugs !
~T~
 
Tesscorm

Tesscorm

Moderator
Staff member
Oh, I am so sorry today was so difficult! :( I feel partly to blame for Izzi's suffering (and yours!) for encouraging you to try the ng tube. :frown: I can just imagine that you felt all her pain 100 times over! I truly hope tomorrow is better.

Stephen's never had the formula through the gravity feed; we've only used the pump. However, they were quite strict at the hospital in starting Stephen off very slowly with the formula rate. He started off at 25 or 50 (sorry, I've forgotten...) ml per hour and over two days gradually increased the rate to 200 ml/hr. This was to make sure that he could tolerate the formula. Perhaps slowing down the rate that Izzi is getting her 20 ml would help alleviate the nausea. They also told us to only feed our formula when it was at room temperature.

What happened to the tube when Izzi vomited? I'm only asking because while this has never happened to Stephen, others here have mentioned it... the tube can be brought up when she vomits. It would then have to be pulled back through. Did your doctor mention this (ours didn't...)? If she's still nauseated tomorrow, maybe call your doctor and ask what you should do if this happens. Hopefully, you'll be prepared to react before she even has a chance to realize what's happened.

Is her throat sore from the tube? Stephen didn't have a sore throat but he did find the sensation of the tube annoying the first day. By the second day, I think it only bothered him when he thought about it. Is she allowed freezies? If not, just ice frozen in popsicle moulds. Maybe that would help her throat or distract her a bit.

Sending lots of wishes that tomorrow is better for both of you! :ghug:
 
AZMOM

AZMOM

Moderator
I'm with T, Ang. Love your heart.....love Izzis..... I could so join you on that 3rd glass!!

Now you know what a difference a day can make.....praying for a brighter tomorrow.

J.
 
N

NancyP

No suggestions, just prayers for you and your sweet girl. What a brave girl to go through all this. Hoping tomorrow is a bright new day, and things go much more smoothly.
 
tiloah

tiloah

You are definitely NOT the worst mom! I will keep you and your kiddo in my thoughts. I hope tomorrow is much improved. You both deserve to feel better. *big hugs*
 
littlemissh

littlemissh

Off course you are not the worst mum, you feel bad because she feels bad and that makes you a great, but sad mum. I hope the enteral nutrition works well for Izzy. Its worked really well for me on 2 occasions. One via ng tube the other orally and I know its been a big success with others on here particularly the little ones.
Hope you get a good sleep and your Izzy gets some relief soon. You need to look afetr yourself so that you can look afetr Izzy :)
 
DustyKat

DustyKat

Super Moderator
Oh Angie...MEGA HUGS...:hug:

Poor you and poor Izzi...:(...I feel your pain hun and so hope that today is better for you both. Good luck Mum and keep us posted on how things are going.

:hang: You're are doing fab mate.
Dusty. xxxxxxxx
 
G

guest837

Hi Angie!
I know how she feels! i am 15 years old and have had an NG tube in since end of feb this year!
the first day i just cried and didn't speak to anyone, because my throat was so sore, didn't believe all the doctors that said "it will get better!" but it did!
Took a day or two but once i had got used to it, it was fine - felt just like a pair of glasses ;)

since going on the EN feeding, my weight has gone from 29kg to 49kg - so it isn't all bad!!

Have also been back at school (full time) for the last two weeks - and the kids at school don't even notice it anymore!

Hope i've put your mind at ease and if you've got any other questions feel free to ask me :D

Josh
 
Silvermoon

Silvermoon

Moderator
Both my brother and I had NG tubes... well my brother did - I couldn't handle it and they ended up putting in a J-tube - which goes directly into the stomach from the outside of the abdominal wall raher than down the nose/throat.

It sucked, but it did help. I found, though, that I did get nauseated if the food went in to fast. My brother could handle jsut dumping it in and letting it feed through, but mine ran in very slowly - took about 16 hours through the night. I also had to prop the head of my bed up or I puked.

So maybe flowing slower over a longer period of time would help. It sucks at the time, but in the long run it is infinitely beter for your girl to continue... she will gain weight and feel better in the long run... hang in there.

Big squishy hugs from The Moon.
 
Brian'sMom

Brian'sMom

Location
Midwest
Angie,
Wow! I'm so sorry its not going well right now. You're a good mom!! Hang in there. You're mom and dad probably are wanting to help 'you' and can't stay away, but I understand when 'company' (even tho its mom & Dad) is like adding to the already chaotic day. Hope and pray tonight goes better.
Sorry I don't have any EN advice to give.
 
Crohns08

Crohns08

Hey Angie, you are definitely not the worst Mom ever! You're doing what you have to to help your child, in my books that makes you a good mom. I can speak from experience, sometimes things have to get a little rough and maybe even bad before they get better. But remember, however long the night, the dawn will break. =]
 
A

Aaron1333

I feel truly sorry for you and Izzy to have to go through all of this! I have only just had my NG tube taken out so i've just been through everything Izzy is about to go through. Trust me i was exactly the same, the first 3 days and nights were horrible! I wouldn't stop vomiting and running to the toilet, however as the days go by it does start to get better! :) I will say, since having my NG tube out my nose get's quite bloody sometimes :( Good Luck with everything and i hope it all goes well! xx
 
izzi'smom

izzi'smom

I was away yesterday for surgery...feel really bad for Izzi's dad for having to put up with the chaos all by himself yesterday (plus dropping me off/picking me up).
Izz has stopped vomiting (she is on Prilosec now)...HOORAY!
She is still having a lot of d...we are keeping her home for this reason.
She is also still complaining that her throat hurts-but won't take cough drops/chloraseptic. She will drink water and occasionally have an italian ice.
Tim and I figured out that it will take us 10 hours to get 5 cans into her via gravity feed (they are having us hold a syringe) and ideally her doc wants 7 cans. We are looking into getting a pump. I was a bit reluctant as it is not covered by insurance, but I don't have 10 + hours a day to sit next to my daughter, as much as I <3 her lol!
Her doc wants to admit her (we got less than a can into her yesterday) but I said that is a work in progress (we had to go slow to avoid vomiting and are working on getting a pump). He also wants to CT her but if it won't change her course of treatment I don't see a reason to radiate her. Since the vomiting has subsided since the Prilosec, it won't make a difference if she has disease in her upper GI tract...it's being treated. The treatment for the disease in her large intestine isn't working...I am not sure it matters how bad it is...we will continue to try different treatments until we find what works.
Thanks for all of the kind thoughts...and thanks for listening!!
 
DustyKat

DustyKat

Super Moderator
Thanks for the update Angie.

It's good to hear that things are starting to settle a little. I hope you can get a pump without too much problem. Good luck with everything hun and let us know how things are going.

Thinking of you, :hug:
Dusty. xxxxxxxx
 
K

Kelly2

I am so sorry to hear about Izz, and all that she has been going through. I know how tough it is for you and her dad too. My child was diagnosed at age 11, and started NG tube feeding around age 13, and it was absolutely unbeliveable how much it helped her. I cannot believe your insurance company does not cover the rental of a pump! Is it perhaps because they need a prescription from her doctor in order to send one out - or do they flatly just not cover it? In other words, if he changed the prescription to being ng tube fed via a pump, rather than by gravity, would they send one out? Do you know that you can rent these pumps?
 
Tesscorm

Tesscorm

Moderator
Staff member
Hope she's feeling a bit more comfortable with the tube. And that the vomiting has stopped!!

Re the d - May be different for Izzi, but when Stephen was on the formula only, his dietitien told us not to be surprised if he had diarrhea throughout the six weeks as 'what's going in is liquid, what's coming out will be liquid'. This made me a bit nervous as d had been one of his few symptoms - so wasn't sure if it was working, wasn't working??? Anyway, this was the case for him (altho I have read that others did not have the same experience) but there was no sense of urgency, blood, etc. BMs went back to normal as soon as he started eating solid food.

I hope you start to see improvement really soon! And that each day is a bit easier!
 
littlemissh

littlemissh

I agree with kelly. When i had the pump it was just lent through nutricia who provided training, the rental of the pump and the backpack as it was a little portable pump. This meant that it could be run overnight and more slowly. They made their money as their products were used.
In the uk it depends what area youare as to which company they use, it may be similar in the states.
Will your insurance not cover the rental or is it the package of home support etc that they will not cover. Life would be so much easier for you with a pump.
 
izzi'smom

izzi'smom

Thanks for that, Tesscorm. She's still having urgency, accidents, and blood...but it is only day 2, really, and yesterday she didn't even have a whole can. I have faith for the future!!
The pump just isn't covered, nor are the supplies. We have to pay $75 for a months worth of formula, which is fine...I'd probably spend that to feed her for a month anyway. Our insurance is strange...but at least we have insurance! :)
Her dad managed to get a while can in her, plus I did 60ml earlier...and the pump should be delivered in about an hour...HOORAY!
 
Entchen

Entchen

Chief Dandelion Picker
Dear kind, beautiful mom to Izzi, you are doing a fantastic job helping Izzi get used to having an NG tube; the effort that you and family are putting forth just shines through this entire thread (and other posts -- I rarely comment due to no experience with childhood Crohn's, but I do read and send warm thoughts).
 
izzi'smom

izzi'smom

Pump is here...I am *loving* it! :dance: :) Still quite a bit of fussing (y'know, compared to eating) and backpack has a few kinks to work out (bag tends to fold and stop flow) BUT I don't mind using the pole as I hate having her up and wasting calories at this point. She *still* has AWFUL d...up 10 times in the night last night :( and still c/o pain, throat and belly. We're getting there, though! :) Thank you so much for all of the support...it SOOO helps.:rosette2:
 
DustyKat

DustyKat

Super Moderator
Thanks for the update Angie!

I am hoping, wishing and praying that this does the trick for your gorgeous baby...:hug:...I know as each day passes things will be become easier and more comfortable for you both. Sending you all the luck in the world Mum!

Dusty. xxx
 
muppet

muppet

I'm really sorry that you're going through this. I feel lucky that we've never had to deal with much medical "apparatus" when we're home, we usually leave that stuff behind at the hospital. I can't imagine how difficult that has to be.

We'll be thinking about you.
 
Z

Zoodles

Hope that the pump is the solution to all of your needs. I'm still trying to talk with Brendan's care manager about their youngest Humira patient.
 
izzi'smom

izzi'smom

5 cans today...
:dance::dance::dance:
Which means 1250 calories (I am fairly certain healthy 4 year olds need 1200) plus some crackers, italian ice, and juice...looking forward to her weigh in tomorrow so I can tell the doc (who was SUPPOSED to call me today which is why I carried 2 phones in my pocket all day...ARGH) that she is gaining...YAY!:)
 
rmk

rmk

Hey Angie I know what you mean about feeling like the worst Mom, but it's not true, Izzi is absolutely gorgeous, my son Tadhg is 11 so he drinks the feeds like a shake or juice for now, so no info on the NG. I hope it gets a little easier after today for you all, every time we try something new i get so scared for him too. Wish you all the best, Rachel
 
izzi'smom

izzi'smom

Not much to update, but...
We tried for 6 cans today...but she vomited at 5 so I let her off the hook. I *think* she is a few ounces heavier, though YAY! She did eat a few things. :)
Her doc called today (2 days later...glad I didn't hold my breath) to tell me he wants to hospitalize her to try "IV fluids and steroids, which I know wasn't helpful last time" ??? OK. He is also pushing for an enterogram because of the vomiting. He wants to hear back from me Wednesday regarding her weight...and we'll go from there :)
 
Tesscorm

Tesscorm

Moderator
Staff member
Hope she's becoming more accustomed to the ng tube and that she is beginning to gain weight! :)

Good luck to you and Izzi - hope she doesn't have to go back to the hospital!
 
AZMOM

AZMOM

Moderator
Just wanted to say thinking of you all....... Let us know what you do about the hospital......

J.

PS Dex.......can't live with him, can't live without him....:rof:
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Ah well, I gladly sacrifice myself to be every mom's punching bag!

Let us know how she does today Ang! Are you going to try to break the 5 can threshold again? Good luck to you an Izzi!!
 
izzi'smom

izzi'smom

Hmmm...not sure, Dex. We are working on #4 and 5 right now. Her dad and I discussed it and he think it's when she gets excited (we were playing/laughing one day, running/having fun trick or treating yesterday...etc) that she vomits. I don't know.
I know she isn't getting enough sleep...there was no school today and she took a 3 1/2 hour nap. (she goes to bed at 7:30 and wakes between 6:30 and 8). I feel awful about it but her brother usually wakes her up in the am despite keeping him on a separate floor :( I am certain she wouldn't sleep in the hospital, either, though (Last time a nurse insisted on waking her to assess her during the 11-7 shift, besides being woken by the IV and vitals and bathroom trips.)
Just going on and on again. Ack. Sorry!
Tomorrow's another day :)
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
I'd say that's a likely possibility Ang! Excitement for a child is probably similar to stress for an adult. What do you think you'll tell the doc tomorrow??
 
izzi'smom

izzi'smom

I'm gonna tell him to shove it. :p She was at 54# tonight, up from a low of 52# the 27th. I did 5 1/2 cans today. (For good measure I'll give her a can before weighing her tomorrow [insert evil grin])
If he wants to do an MRI enterogram I think I'll allow it, though. It must be frustrating for him to wonder about the degree of her disease, and although if she doesn't have surgery for a while I know they will need to repeat it I can see why he wants to know the degree of her disease.
:)
 
hbonsky

hbonsky

You're definately not the worst mom ever!! I have felt this way several times. Zachary had the tube for a while and got used to it. He is so spoiled rotten because of my guilt over him being so sick all the time. It will get better :)
 
kimmidwife

kimmidwife

Hi Angie,
I am also feeling like the worst Mother ever. Caitlyn is so unhappy and wants to eat so badly. I am letting her have broth since I saw in the EN thread that one of the Mother's posted that her doctor let her child have any clear fluids. She wants to know if she can have pudding? I am going to go buy her some ice pops to suck on. She did admit to me that her stomach has not hurt in 2 days. Yay I hope it keeps up and maybe she will not have to stay on the EN for to long.
 
izzi'smom

izzi'smom

is caitlin getting her feeds at night? Izzi is not hungry, which may be partly her crohns but we feed her during the day instead of at night.
Our doc said she can eat. When she wants to I let her (not often). We try to stick to low fiber low fAt low residue foods. He want 90% of her calories to be from the formula, which leaves her about 100-150 calories.
 
DustyKat

DustyKat

Super Moderator
Hey Angie,

How did you go with the doc?

I hope things are continuing to go well for Izzi and she is gaining weight!

I wish your gorgeous baby loads of love and luck...:goodluck:

Dusty. xxx
 
kimmidwife

kimmidwife

Hi Angie,
I am also wondering how it went? The MRI's are not bad Caitlyn has had several and they are quite helpful. Caitlyn only got 3 cans of formula down today. She is drinking her's so it is only during the day. She is supposed to do 7 per day. She also had a bowl of broth and some gatorade. I will make her drink one more can at least before bed. She also said her stools have become very loose but I know others here have said that is normal from drinking only liquids.
 
izzi'smom

izzi'smom

i only spoke to the nurse, who will set up the MRI and bloodwork, which we haven't had for a while (we get it done at our Remi appts). She is still holding her own as far as weight goes.
Izz's stools have become looser/lighter also. she's still having blood, though...hoping it will subside soon but doubtful.
I'm sure Caitlyn doesn't want to hear that if she drinks all 7 cans it's unlikely that she will be hungry, but it's probably the HABIT of eating that is tough to kick. We're lucky we don't have that problem right now...

My 20 month old has croup so when it rains, it pours...just managing to keep it together lol! I took him to the ER for a breathing treatment yesterday afternoon...it hits him hard and fast and I HATE it when he can't breathe. Figures it was 65 out yesterday (unusually warm) so I couldn't take him outside to alleviate his symptoms.
 
Crohn's Mom

Crohn's Mom

Moderator
Oh goodness...a baby with croup AND a daughter with an NG tube ! You're one amazing mommy and I hope you have some hair left ! LOL

Thinking about you :)
I hope the bloodwork and MRE give you all some answers !
 
AndiGirl

AndiGirl

Your Story Forum Monitor
I just wanted to send my love and concern. I sure hope that your baby is doing better.
 
social me

social me

Angie I am sorry you and your daughter are struggling so badly. I know how it feels as a mom to see your child so ill and yet you can't do a thing to help them. How hard it is to see you children wheeled away as you stand there thinking. This can't be real? You are a wonderful and strong mother try to stay positive and take one hour at a time. We will pray for your family. God be with you.
 
QueenGothel

QueenGothel

Location
Michigan, USA
Hey I am catching up on izzy. Sorry I have not been present just got over a 10 day stay at children's and a blood transfusion. I really need to post what is going on with my DD too. I hope Izzys is doing better I have a lot more to read to find that out. Hugs momma!
 
QueenGothel

QueenGothel

Location
Michigan, USA
Well I played catch up I think. I read they upped her dose, and I would have been ticked about that nurse as well. I probably would have turned into a total phsyco. How has she been doing now that she has had sometime for the meds to work? Does she still have the tube? How was the holiday? How are you doing? Holding up momma?
 
izzi'smom

izzi'smom

Ahhh...the tube was doing fine but they tried to advance it during her MRI and it came out of her mouth. I decided not to replace it (insertion was pretty traumatic-she cried for a week). Shortly after her last Remi dose she was syptom free x 2 weeks so am eagerly awaiting her dose Thursday to see if it happens again. If not we will look into staring Tacrolimus.
Our Christmas was WONDERFUL <3 I am so lucky!
I am holding up fine...sleep deprived and haven't worked out in months but I'll get there...:)
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
That's the first time I've heard of Tacrolimus. Is it like Cimzia? How is it administered and how often??

I hope the remi works but you don't sound confident Angie. Good luck Izzi!!
 
L

LilyRose

Hello Angie, I have been reading your posts, and i just wanted to say that you are doing a wnderful job. You are a wonderful advocate for Izzy and Izzy is doing a great job too. I hope the next does of Remi helps again.

I have a little boy (6) who has crohns - although mostly well at the moment. I know it is hard to see little ones so upset, and wanting to make it all better.

Take care,
LilyRose
 
izzi'smom

izzi'smom

It's an anti organ rejection drug, taken daily orally, although it can be administered via IV. It's main SE is neurotoxicity, and blood levels need to be monitored, as too much doesn't work and too little isn't effective either. (So labs daily/every other day in the beginning). It's been studied a lot in fistulizing Crohn's, but our doc in Boston has used it regularly to treat refractory and steroid dependent cases also.
Thanks Lilyrose :)
 
Mountaingem

Mountaingem

:hug: I just wanted to commend you for being such an great advocate for your daughter! It must be so unbelievably difficult to go through this with your child. I was at the GI today and I could hear a little one in the next room crying through some procedure, and it made me want to cry...you Crohn's Moms and Dads are warriors! I hope your beautiful girl gets some relief soon!
 
izzi'smom

izzi'smom

awww...thanks for asking-it means the world (((HUGS))). The increased dose didn't touch her this time, and she had a terrible night last night between incontinence and a cold she is coming down with. I kept her home from school so she could nap ( and so her cold doesn't get terribly worse) I called today for an appointment...we go in Tuesday to discuss if we are going to continue with remi :(
I have been lurking...reading but not posting much. It feels like I have no new news...can't wait to share something good someday! :)
 
DustyKat

DustyKat

Super Moderator
Your time will come Angie, I know it will...:hug:

Good luck for Tuesday!

:hang: Mum, you are doing fab. :)

Dusty. :heart:
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Sorry Angie! That's all we want for any of them, good news! Have you and the GI discussed what's next options? Changes or combos?
 
izzi'smom

izzi'smom

Sooo...he wants to try Humira. After I research more (and talk to her dad), that is lol!
Remi really isn't working. She has had a few super urgent trips to the restroom, and 2 bad accidents (one at night, one at school, which she didn't tell her teachers about and waited an hour to get home :()
He has promised to read up on LDN while I am re-researching Humira (it's been a while)
We are also getting some more in-depth testing done, and he would like to repeat her colonoscopy within the next couple of months, as he claims some kids don't have great inflammation markers in their bloodwork.
He has ordered the Remi antibody test...anyone have it done? I realize it has to go to California but his nurse claims we can ONLY get in done in Syracuse, where there are *5* labs that will draw it "for free" (she claims otherwise we will have to pay $500 oop). I think this translates to "we don't have to get insurance preapproval if you get it done here". (Our doc is in Syracuse, but I usually plan bloodwork ahead of time...she was tired/cranky at the end of our appointment, and I had already promised her no needles today).
My poor son is sick with a fever and burping/vomiting phlegm...the back of my mind is spinning with "what if he has IBD"...make it stop LOL!
Enough of my mental wandering tonight...off to bed for me!
 
Tesscorm

Tesscorm

Moderator
Staff member
Angie, I'm so sorry Izzi hasn't responded well to the remi. :( Poor little girl, she certainly deserves to get some relief soon!!!

I hope you ALL have some better days just around the corner! :rosette2:
 
DustyKat

DustyKat

Super Moderator
I'm so sorry to hear this Angie...:hug:...I so feel for Izzi, poor love...:ghug:

I hope your little guy is feeling better very soon, :heart:

Sending love and healing thoughts to you all, :wub:
Dusty. xxxxxxxx
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Wow, you got your hands full Angie! Whatever decision you guys make, I pray it gives little Izzi a looooong vacation from crohns! I know your minds buzzing with what-ifs about your son. Is there a stomach bug known to be going around? Good luck!
 
Brian'sMom

Brian'sMom

Location
Midwest
Angie,
So sorry to hear all the trouble you are dealing with.
My son had the antibody test done with Remicade after he had the big allergic response on infusion #3 and it came back positive.

A question I'd ask the doc, doesn't Remicade and Humira work the same? Binding up the TNF. I think I heard somewhere that some crohn's kids don't have the big TNF problem, but I could be soooo wrong. I just remember our GI mentioning that since Brian originally responded really well to Remicade (Dose #1) that he'd also do well on Humira. They said his only problem with Remicade was that his body fought the ingredients of it(antibodies)
If this is helpful: After 1st infusion Brian was almost immediately 'cured' of his cramping and diarrhea. He was so happy. Then he came down with strep throat. They went ahead and gave him infusion #2. After that one Brian would say, 'I think Remicade is only kinda working'. By #3, terrible allergic reaction. Not sure if him being sick ruined everything or not. Infusion nurses were shocked that the GI doc went ahead with 2nd dose when he tested positive for strep the day before!!
All behind us now, for what its worth, I like Humira better. I like that its all human and that its given at home. (Every 2 weeks sucks, but its fast and then over).
 
izzi'smom

izzi'smom

IDK about a bug, Dex. I mentioned to his dad about taking him to the doc today as he was vomiting and his dad thinks it's a waste of time. But he's had a fever since Saturday...aww heck I'm just worried. He's had d off and on a few months, and the fevers/coughs come and go, but the vomiting is new.
We are getting a HACA level tomorrow to check for antibodies for Remi...while we will probably try Humira regardless it may factor in to how much of a chance we give it. (Remi may have worked/may not have...she got really healthy for 2-3 weeks following the second to last infusion-but it may have been a coincidence).
 
Johnnysmom

Johnnysmom

Angie,

I know there is a nasty stomach bug going around my kids school. A mom was telling me yesterday they were sick with it for days and the D was around for 2 weeks. Hoping your son is feeling better soon! ((((Hugs)))) I know this is the last thing you need right now. Hope all goes well with the Humira. :)

Tiffany
 
izzi'smom

izzi'smom

Dexky said:
With Izzy's history, I can't believe your husband would think getting him looked at by a GI would be a waste of time! Somehow, I think you'll win that argument:)
Click to expand...
Just to be clear...ex-husband to be lol! :eek: We have been separated for about 2 years now but get along really well considering.

He actually is usually on board with every hare brained idea I come up with lol!

Xavier has a checkup in a month and they have to take blood for lead levels...I will see if I can persuade his doc to pull an IBD panel also. :)) At the very least it will put my mind at ease while being minimally invasive considering he already will be getting bloodwork.
 
Last edited:
QueenGothel

QueenGothel

Location
Michigan, USA
Sorry Angie that the remi didn't work. This whole IBD world is hard on all of us. I pray for your little girl when I pray for Rowan. They really need to figure out why IBD is such a growing disease and find a cure.
 
izzi'smom

izzi'smom

Poor kid was so worked up about bloodwork she threw up after :( It didn't help that we had to drive 30 minutes to a lab that does the HACA for Remi levels...she had the whole trip to stew about it. Really interested to get the results and see if she has built up resistance or not...
 
Brian'sMom

Brian'sMom

Location
Midwest
Angie, I'll be interested too. Sweet Izzi...and so brave.

Mary, I agree about your statement about this being a growing disease. And with really young kids! I used to think I noticed it more because my son has it,but I think its on the rise. I already recently found out about 4 kids in my area...all under the age of 11 that are in the beginning stage of being diagnosed and doing the 'guessing medicine game' we all have to endure!!
 
izzi'smom

izzi'smom

I remember telling our gi that I was shocked there was enough kids for four peds gi docs (we see our doc in a. Small city in upstate ny)...he said there was enough work for a fifth...ibd is increasing in the young ones (5-6 and under) and early teens according to him.
I *do* wish they'd figure out why as well as focusing on a cure...let's stop kids from *getting* this diseaase in the first place! I want all of our kidsto feel better but I *really* don't want to see any other kids suffering either. I have been looking into ways to fundraise for the ccfa this year...
Sorry for typos...its my phone!
 
Brian'sMom

Brian'sMom

Location
Midwest
Do you think its antibiotics? My son had bronchitis. It took 2 rounds on antibiotics to get him well. (They used 2 different ones)...immediately after...9 months of diarrhea. Then this diagnosis. The GI even said that 'triggered' it. After the fact, our pediatrician said that some illnesses go away in time and some antibiotics are over prescribed.

Or do you think its all the over processed food? In some countries crohn's isn't on the rise.
 
Tesscorm

Tesscorm

Moderator
Staff member
I think its a combination of all of the above... 'progress' brings lots of good and bad. It's great that we have antibiotics and other meds but, what damage are they causing? All the antibacterial agents we use (hand sanitizers, cleaners, etc.), they are creating a 'cleaner' environment, perhaps, but how does that affect us, both in regards to our immune system not developing properly and the chemicals themselves.

I also think that doctors have so many drugs at their disposal now, that it's now common practice to just prescribe the quick fix, they've lost the motivation, knowledge and predisposition to consider diet, environment, etc. Not blaming doctors here, just saying it's been a gradual shift in society. When I was 5-7 years (going back to the 1960's), I had juvenile osteoporosis. It reached the point that I couldn't walk. I remember taking 'pills' (could've been vitamins though, or aspirins for what I remember now :lol:), however, in the end, my main treatment was physiotherapy. AND, being Portuguese, my doctors told that my parents that I would gain big benefits from a trip to Portugal for an extended period to build up vitamin d from the sun and ocean. My parents arranged this and I stayed with family for over two months. I've seen, from home movies, the progress in my ability to walk before, during and after the trip. Doctors, at that time, had fewer drugs to offer, I think they were forced to be more innovative in using what was at their disposal - diet, exercise, etc.

Sorry... a bit of rambling here... :)
 
izzi'smom

izzi'smom

Hmmm...Izz was on some topical antibiotics for thrush at about 1, but not anything else. She was a super healthy kid before this (didn't visit the doc except well child visits between 2 and 4 years). I even refused antibiotics after my c-section with her because I was breastfeeding. (I often joke that I did everything "right"...she ate organic, no refined sugar until 2, etc and look what happened! My son now eats candy for breakfast just so he won't get Crohns lol (kidding))
My doc has also talked about anti-bacterial stuff being a factor...I didn't use these products when I was pregnant with her but they are hard to avoid (most of the newer hand soaps, for example, are antibac). I still avoid them but you have to wonder...we survived for years without disinfecting every surface...
I also believe that the drug companies are in the docs faces, pushing their products. Unless we are there to advocate on our kids behalf to ask for "alternate therapies" (enteral nutrition, even LDN as it is a drug but not commonly used yet, and I was just reading about fecal transplant for c-diff and colitis), it isn't mainstream. I think for a long time many parents were fine with drugs (often I hear that docs prescribe antibiotics because the parent wanted the kid on meds, and it was easier to prescribe than argue), but we are a new generation of parents...look out! lol.
Oh, dear, I think I've caught the rambling bug also ;)
 
DustyKat

DustyKat

Super Moderator
I have thought about why for so very long now and since Matt was diagnosed I have made endless comparisons.

The things I can say with certainty are: Neither of my children had antibiotics until they diagnosed, none. They were both breast fed for lengthy periods of time. They had little take away food and a lot of the food they had was home grown. Neither drank soft drink to any great degree, in fact, Sarah none at all as she has never liked it. They drank milk but not huge amounts. The thing they drank and still do to the greatest degree is water. They had occasional chocolates and lollies, they were never the best examples of a perfect diet but they were far removed from the worst. They weren't raised in a sterile environment, the house has always been clean but not excessively or obsessively so. They have had pets and they have had regular exposure to farm life...sheep, cattle, chickens, shooting, riding horses.

I eventually had to stop asking myself why and stop the comparisons and console myself with the fact that in our case the biggest piece of the puzzle was genetic. When Matt was in hospital in January last year he was reviewed by a couple of Crohn's specialists and one of them said he had only had one other patient that had their Crohn's exactly mirrored in another family member...a mother and her two daughters. So it is genetic then! As I said, I consoled myself with that and still do and guess what? I still question myself at times...I will read something on here and wonder if I am just using that as a convenient excuse so I can absolve myself that of any wrong doing I may done when they were growing up.

(((Sigh))) I don't imagine the thoughts and what ifs will ever end until there is cure!

Dusty. :heart:
 
Brian'sMom

Brian'sMom

Location
Midwest
I think I'd have to agree about genetic. I also was a mom who didn't even like to give tylenol...even down to not giving much soda. The only other family member is my husband's sister. I guess the other 'environmental' things are just the triggers, maybe maybe not.
 
izzi'smom

izzi'smom

Agreed that it is genetic, although what makes it psoriasis (my grandfather and I) or Crohns (dd) or Graves disease (my niece)? Maybe that is another environmental link?
When the ped was trying to diagnose Izz EVERYONE asked about Crohns or colitis in our family but no one really asked about other autoimmunes.
Heck, I know it doesn't really matter, for us anyway...still rambling!
 
DustyKat

DustyKat

Super Moderator
I personally think there is a link between the autoimmunes...just as there is a link between asthma, eczema, allergies, bronchitis, hay fever and now they think migraine. As a parent you may have asthma but your child has eczema and yet another child may have hay fever and so on. Although asthma is not officially classified as autoimmune by some it is looked upon as one. I think they are all linked by some type of allergic response by the body which in turn elicits a flawed inflammatory response.

In my way of thinking, which is likely flawed! :lol:, I can see that the autoimmune disorders may have a similar connection, a common gene or response perhaps, from which the autoimmunes are born and then each individuals journey has the potential to put them onto the path of one or more of those disorders. A parent may have fibromyalgia and a child Crohn's.

Just my two cents worth!
Dusty. :)
 
izzi'smom

izzi'smom

Dusty, our doc in boston told us this very thing...when I said we didn't have a famial tendancy for crohns he asked aboutother ai disorders. I mentioned my psoraisis and he went on to list a bunch, a few of which I recognized.
 
Johnnysmom

Johnnysmom

Agree on the genetics. I had an autoimmune response (transverse myelitis) last February. Johnny was diagnosed just 8 months later so I think we might have even had the same trigger. I would also say that Johnny has a strong immune system. He never had fevers as a child and was rarely sick. I wonder if a strong immune system makes crohns worse or develop at a younger age. I think about this stuff constantly but I know I am not going to figure out an answer. I do thinks researchers will someday. What a wonderful day that will be!
 
Tesscorm

Tesscorm

Moderator
Staff member
I've wondered about the 'strong' immune system as well. Stephen was rarely sick before Crohns, even compared to my daughter who seemed more likely to catch whatever was going around. And, I've read so many parents here say that 'my child was never sick before being diagnosed with Crohns'. Makes me wonder if their immune system has always been running at a higher level and then one day, a more vulnerable system in their body just gave in to the inflammation, be it the intestinal system, joints, lungs, etc. And, perhaps what determines the more 'vulnerable' system is no different than what determines if someone is better at math or english - we each have our strengths and weaknesses.
 
DustyKat

DustyKat

Super Moderator
That's an interesting though about a strong immune system...

Both of my children slotted into that mould. Never had antibiotics, had many a year at school where they didn't have one day absent, Matt didn't miss one soccer game or training for 9 years and I could count on the fingers of one hand, between the two of them, that they vomited. I well remember parent's talking about their children having a night of vomiting and me saying that my kids weren't vomity kids. Whoa, didn't that change!

Dusty. xxx
 
You must log in or register to reply here.
Top