I feel like the worst mom ever today...

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Interesting...makes me sort of glad my son has been sick for weeks (never thought I'd say that lol!)
I'll have to ask other parents...wonder if there *is* a ink...
 
:) Sad that, in hindsight, being a very healthy kid may have been an indication of trouble ahead! :ybatty:

And, while the idea that a strong immune system is interesting, we're all still left with the same questions...:ywow: Why do some people have stronger immune systems, why would some people's systems be 'overloaded' and give in to inflammation when very young and others much older, what causes the overload or trigger, etc. :yfaint: :ybatty:
 
I never thought about the autoimmune link! I also just asked family members about IBD. Never thought about all the others...We do have asthma, allergies in our families, my husband has mild sclerderma morphia brought on by stress. (Also an autoimmune that topical steroids creams get under control, etc. I learn so much here :)
 
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Got the ball rolling for Humira today...working on getting insurance approval. Still waiting on bloodwork results.
I'm looking into getting on Humira myself for my psoriasis also...has a high rate of "cleared skin" and a great "improved" rate also. Steroid creams aren't cutting it for me these days (I have been using them for 10 years). It is SO much easier to make a drug decision for myself than for Izz! (I have held off on stronger drugs for 8+ years...since a doc prescribed methotrexate and its list of side effects scared me off. Metho STILL scares me, for myself or her!)
Maybe we can give each other our shots lol!
 
Wow, we are the complete opposite. I am the laid-back mom, Alex ate all kinds of junk food, fast food, candy, it's still what he prefers! I feel SO guilty all the time. He goes on food jags, like, as a toddler ate store chicken nuggets and broccoli for lunch every day for like a year. He's the pickiest eater in both texture and trying new things. He will eat healthy, but comes undone when he has to drink an Ensure. He hates carbonation, so no soda ever, nor fruit juice, only water and some milk.

He was always sick and on antibiotics a ton and was in daycare. I had them when very first pregnant with him for a sinus infection, then again after his C-section. Then he had them once/month his first full year for horrible ear infections. Ear tubes helped, but then it was tonsils and adenoids out for sleep apnea and constant inflammation. Then it was asthma. Each time, it seemed necessary, but now I wonder if I couldn't have done something differently. Seemed to be a strep infection of his bottom that finally triggered Crohn's. What is interesting to me is that once his immune system finally kicked in, it went into overdrive, he has hardly been sick at all since before his first fistula - his first sign of Crohn's.

Definitely genetic. No other family history of IBD, but IBS, yes, diabetes, migraine, seborrheia, eczema, asthma. sigh... :)
 
So it seems to *really* not matter how you raise 'em...izz ate a ton of fruit, had very few processed foods and nofast food until she was 3.
When is alex starting humira? We are waiting for insurance approval.
I suffer from ibs too...darn stress!
 
Oh my, your daughter is so beautiful. My heart goes out to any child that has to deal with such a horrific illness. I'm sure I speak for most people when I say this is hard enough to cope with as an adult.

I wish you all the love and luck in the world xxxxxxxxxxxxxxxxxxx
 
My mother has raynauds, I have hashimotos, my sister has graves, sister in law has RA... Lots of autoimmune diseases in my gene pool. hoping my youngest whom suffers from eczema and is lactose intolerant doesn't have other issues. Angie didn't you say you had your son tested for IBD? Was it just a blood test? Did you take him to a GI or just his ped?
 
Sorry two comments playing catchup. Rowan is in the hospital and they cannot explain the elevated WBC or the fevers. They told me today that her immune system elevates when she becomes inflamed. that is what they think as of now bc they keep taking cultures and cannot get her to grow anything but have her on both flagyl and IV antibiotics. No reason just put her on them. Just in case. She has taken amoxicillin once since she was born and it was not even a whole dose. I remember getting a call from the pharmacist saying they were waiting on the doctors call bc it was not even a high enough dose to do anything. I think they just gave it to me then to shut me up thinking I wanted it but I didn't I just brought her in bc of the fever lasting more than 3 days. Stupid. They really need to figure out what is causing all this auto immune stuff.
 
Well the reason I meantioned it is they were talking about having a crazy strong immune system. They are completely baffled about all her negative tests and fevers. They are thinking it is her immune system in overdrive. I really think you all are on to something with this conversation.
 
Thanks Eve!
Mary, he doesn't go until the beginning of March...and it's just his well child check up but I am hoping they will draw an IBD panel for me along with his lead levels. He actually had a normal bm today for the first time in a month, which makes me feel a bit better, but still...a few extra tubes of blood wont hurt him and will help to put my mind at ease at any rate.

Izzi's WBC was elevated when she was flaring...(our ped originally thought it was an infection). I remember the hopeless feeling of her bleeding and stuck in the hospital and being unable to help her. You must be exhausted! Our situation was different because she didn't need transfusions...I insisted on taking her home as they weren't doing anything for her...and I think the stress of her being hospitalized was making her worse. I am hoping things turn the corner for you soon. :)
Agreed about the autoimmune...there seems to be a bunch of links but I wish they would figure out a bit more about it, and soon !!
 
> izzi's mom: When is alex starting humira? We are waiting for insurance approval.
I suffer from ibs too...darn stress!

Frustrating process! our insurance (which is really great actually) considers Humira a "specialty drug", it wasn't enough for the GI office to do authorization, we also had to go through a specialty pharmacy. Even though it was marked urgent, there was some mixup for 2 days, then they don't process during weekends, so I've been calling every day this week and we should finally get the meds delivered Fri. The GI nurse will give his first dose, then we will have a few home nurse visits to train us. He'll get it every two weeks as long as he tolerates it and it works. it's been 2 weeks since we heard he had antibodies to Remicade and his inflammation has been up since new years', so I'm beside myself afraid he'll get a new fistula in this lull, as he got one in each of the last two Januarys.... sigh.

I hope you get started soon too and it works well for Izzi!

Jennifer
 
oh, forgot to add, that at one point I was dx'ed with IBS too, but found it's more of a wheat sensitivity than true gluten intolerance. Amazing how once I started asking around, I hear of one cousine with gluten intolerance, another with fibromyalgia. We also have hay fever and skin sensitivities. It's nutty.
 
I'm pretty sure Humira is always handled thru a specialty pharmacy. Ours is delivered to our door by UPS. Last year the company used FED EX. Both overnight deliveries since its refrigerated. I always lean on our GI clinic to push insurance thru. They are well versed in getting what they want for their patients.
 
Kathy, we started getting 3 month supplies this last time. I guess they feel the need to save on shipping costs...so they're sending $18K worth at once:). Hell, that little box is worth more than both of our vehicles and half my house:)
 
Mark,
I wish we could do that! The one small box of 2 pens comes in a big styrofoam thing in a larger cardboard box. (This is silly, but I don't like throwing the styrofoam in the trash!) I also keep the freezer packs!! My freezer is getting full of those dumb things! (They keep a cooler of beer pretty cold tho!!)

Our electricity went out in a storm once. I only had one pen in there...if that happens to you, whoa, big$$!!
 
Dexky said:
Kathy, we started getting 3 month supplies this last time. I guess they feel the need to save on shipping costs...so they're sending $18K worth at once:). Hell, that little box is worth more than both of our vehicles and half my house:)
Click to expand...
:rof:
I wonder if there is a street market value for Humira...I've got some bills I'd like to pay off ;)

We got approved for Humira but are waiting for the doc's office to decide if they should call the pharmacy or if the insurance company is going to do it. :angry-banghead:

We got sryinges instead of the pen to be able to control the injection better...but I am wondering what you do if you get a bad dose/break the glass/pull back and get blood...if it is an overnight delivery I am guessing it doesn't matter if your injection is off by a day or two?

I am also still waiting for lab results...she was going to "check his office" the last time I talked to her and I haven't heard back. Maybe I should ask them to automatically send me all of her results :)
 
I've heard that if you inject slowly it does help with the 'burn' of the medicine. I just think the pen is easier and less hassle. And EMLA numbing cream works wonders with 'not feeling' a bunch.
My husband has given the shot for the last year cause i didn't think I would ever be able to do it. But last Friday, I gave the shot! It went beautifully.At this point, I think we could learn to use a syringe, but Brian would freak...I think! Also, kinda don't want to mess with a system that is already working :)
I'll be curious how it goes for you and Izzi. Angie, did you decide to use it yourself for your psorisis? I would love to 'know what it feels like' to get a shot of the Humira.
 
I hear that the pen makes a loud pop, and I am told at times it makes the kids jump/makes it difficult to hold still x 10 seconds)...Izz is sensitive to noise. I have a graduate nursing degree and am comfortable using a syringe//I think lol! She hates the EMLA...she has a reaction to it (turns red) and the waiting is the worst part...it is a reminder of what is to come lol! I am glad you gave him his shot...hard to be the one to inflict pain, I think, but B must be getting used to it by now, right?!
I see my dermatologist on Thursday. He has been pushing me to use other drugs for the last 8 years...I am fairly confident he will be OK with it. You KNOW I will keep you posted. :) I am looking forward to ditching twice a day topical steroids. :D
 
I love the pic Angie!!! What an absolute angel!!! :rosette1::rosette1::rosette1:

Dusty. :heart:
 
TY...I should change my avatar but I love that pic of her...and it was just before her diagnosis. I will have a hard time letting go of it...dumb the things I choose to cling to lol!
 
Alex had his loading dose of Humira yesterday, it was pretty bad. They did two epipens at the same time, one on each leg. I think the pop scared him, I didn't expect that and he howled, it really hurt. It was shocking. We tried numbing cream, but another friend recommended ice packs and that might've gone better. It was quick though, I put ice packs on immediately after and that helped. The nurses do another epipen in 2 weeks, but then we have to switch to the syringes, he's on the lower 20mg dose for maintenance and the epipens are only 40mg. I know I'll just have to put my mind to it, but it'll be hard.
 
I feel terribly for you and Alex. It must have been so hard. :( Hopefully, once you get to the syringes, they will be easier to tolerate.

I'm sorry you have to do this... it's heartbreaking when we have to let our children go through painful procedures. :( :(
 
I am so sorry...poor Alex (((HUGS))). I am going to try to remember to bring ice packs to our appt with us...thanks for the reminder! Keep me posted...how long is the injection site sore for? I have to remember to go get Izz a "prize" for doing well...works like a charm. ;) Are you going to be doing the injections yourself next time? Hoping it goes well for you :)
 
Those pen shots really hurt. My daughter could not tolerate them. They did not offer us the option of a syringe. We tried the ice but it did not help her. Someone else on the forum mentioned the numbing cream but you have to put it on at least 30 minutes prior to the shot if you are going to use it. Our doctor did not even offer it to us and I did not think of it until after she refused to d anymore.
 
Our HACA test came back...no Remi in her system at all. Glad to see that moving on was the right decision. Should be receiving a call in 24-48 hours to set up Humira delivery :dance: Maybe *this* will be our wonder drug!!
Coincidentally, other than severe belly pain 3-4 times daily, her bowel habits are close to normal. (Well, the *new* normal lol! Normal to IBDers would probably make the outsiders cringe) :ytongue:
*SO* wish I could find a rhyme or reason to the pattern!!
 
Kim, I found out about the sryinge on here, but read through all 70 pages of the Humira studies I printed from online and found more info there. So sad we can't trust our care providers to keep us well versed on all of the options...it's not as if you don't have enough going on!!
 
Thanks, I feel bad that I can't help him more with it. He's a howler, I try to get him to breathe.... It's also hard because generally, he doesn't feel bad. Mostly fatigue. He's 10 and so in the moment, he's not aware that feeling crummy isn't normal.... The next dose is also by the nurse, but will just be one shot. Then I think we have a home nurse come for a few visits to train us. .... on a better note, I let him sleep in today and miss school and he's bouncing off the walls. Guess it's working already. He says his legs are sore at the site when he walks, but it's not stopping him from jumping around while playing his video games. :)
 
When my son was about 12, he hurt his knee a had to have it drained. It's a painful procedure and takes a few minutes to complete. He was in a lot of pain so while the doctor was draining, I had him focus on me and count backwards from some odd number like 67 but count every other number. It forced him focus on something else and seemed to help. I hope the next dose goes a bit better.
 
Jennifer, have you noticed any redness near his shot sites? My son takes benadryl a half hour before and again the next morning due to site reactions. He hasn't had any since. He uses an ice pack and though it still burns, he has never let it bother him much. I hope it works so well for him that Alex can say it's all worth it!
 
I'm responding to several posts here: I do think the 'click' of the pen bothered Brian at first. He yells a karate yell thru it now, so on a count of 3 he's already yelling, before the click...none of us hear anything!! We also always use ice plus the numb cream. We move the injection site around. Seems like higher up and to the outside/inside of his leg hurts the least. Straight on is when he complains most. Before we ice, we mark visible capillaries so we don't hit them because that causes extra pain. We don't have site reactions anymore...seemed like once allergy season was over, so was the site reactions.
BUT MOSTLY, Brian has gotten used to the whole thing.:) Its not that big of a deal anymore.
Hope everyone joining us in the Humira group have great success!! Its given my son, so far, a flare free life.
 
Angie,
I'm literally sitting here in tears going back and reading to the beginning of this post. I have a beautiful 5 year old little girl and I can't even begin to imagine her having to deal with this awful disease. It is just so wrong that someone so young and beautiful has to struggle with this. I am sending so many good thoughts your way.

Granted I was giving the injections to myself, however i was on Humira for 2 1/2 years and never once struck a vein and got blood. So hopefully you won't have to worry about it. And while it's not ideal you can give the next dose as soon as you got your replacement if you needed. I did end up calling the toll free nurse line one time as well as they were pretty helpful if you ever have any questions.

Sending good thoughts your way!!!!!!!!!!
 
@Angie - I so hope Humira is the wonder drug for Izzi, you both deserve relief and to be able a breathe easier. Fingers, toes and everything else crossed! :hug: Good luck!

@Jennifer - I'm so sorry to hear that Alex had a rough time with the injections, poor love... :hug: I hope more than anything you are able to find a method that eases the pain come injection time and that the bouncing off the walls continues unabated for a very long time! Good Luck!

Dusty. :heart:
 
Yes, will try the ice pack and try a different site. we did sort of go straight on mid thigh. He has small red marks at the injection sites, only one bruised up a bit. I too asked the doctor about using Benadryl beforehand as he did with Remicade, but she didn't think it necessary. Might relax him a bit tho! ;) The karate-chop yell is a great idea. The next one should be at home, so maybe that'll be easier too. I did point out to him a few times how he's feeling better must be from the medicine, so hopefully he'll realize it's worth it.

stardreamer: yes, I think we all agree with you, it's really really unfair and heartbreaking. We just take it all one day at a time. Poor kiddos. But there's really terrific medication out there to keep them healthy and that's what is important to focus on.
 
Just got off of the phone with the pharmacy (mini-vent...whose automated service called to tell me they needed to speak with me and to call right away...only to be put on hold for 15 minutes...ARGH!!) and the rep forgot to "release" the order so it may not come tomorrow...BLAH!!
Maybe I can hire somebody to deal with all of this phone bs so I can sit here and snuggle my kids instead of giving myself heartburn stressing out about things ;)

Awww, thanks, stardreamer! I may commiserate a lot on here but I truly feel that we could be worse off. Crohn's is an awful disease but she has the potential to go far in life, unlike some other kids that are far sicker. :) I often wonder how difficult it would be to parent WHILE having Crohns...I am also thankful that I don't have it...I am sure it could have been me!
 
I hear you iszzi'smom, about the phone calls! Is it Walgreens Specialty pharmacy? That's who we had to go through. They said it was marked "urgent" but still takes 3 business days and they are backlogged. ugh. I also get annoyed that the GI nurse will call at home when I constantly give her my cell phone to reach me. *vent*

So, Dexky, last night one leg started in with a prickly red rash all around the injection site. the other leg has a little. So we gave him some benadryl and I'll report it to the doc. Sounds like a common side effect for Humira. He got these prickly rashes on his arms after his last remicade dose, but also after a standard blood draw - which should have no allergy. maybe it's from the stress of it, like hives.
 
We received it!
Through care a script...and it was sent from FL to NY overnight...weird that there isn't a closer pharma. Fingers crossed for tomorrow!!
 
This is worrisome enough with a teen, your girl is just a little child, that's heartbreaking to me.
Since my big overgrown girl and your tiny one will both be starting Humira tomorrow, I'll be reading to see how it goes for you guys.
No comparison as V is like an adult nearly, but I'm sure we share the same concerns.
Best of luck.
 
Totally a comparison,iamaboveitall...they are our little girls, no matter their age! I think some aspects of cd are easier with a 5 year old (fecal incontinence is almost common ;), social concerns are easier to deal with). Wishingv all the best...it is a tiny needle so hoping it isn't too bad...hoping to hear good news!!
To all the rest of you well wishers...thank you so much, and I'll post tomorrow night about how we did!
I visited my dermatologist today and got a script for myself...I won't be too far behind her!
 
Here I am at 5:45 a.m. like a nut. Barely slept.
I hope both of ours feel excellent by two hours post-injection.
I'm choosing delusion at this point.
 
I hope it works wonders for Izzi Ang:)!! And Violet too ^^ mom! Welcome to you by the way. What's your name cause I ain't typing that all out :)

Today is EJ's dose day as well as Kathy's Brian. Maybe, we'll all end up on the same schedule:) We can all help each other remember!! Good luck to you both!!
 
Angie, I hope the injection was tolerable for Izzi :Karl:

And, for all your other babies as well - Violet, EJ, Brian :Karl:

More than anything I wish none of us had the need to know or experience any of this!! :mad2:
 
Thanks, girls.
Dexky, I'm Julie, I should add that to my signature.

I hope little Izzi didn't feel as much pain as V did. I've heard a spectrum of answers from folks on that, from barely felt it to agony. V's first shot done by nurse was the worst; V did the next three HERSELF and said it hurt far less when she injected it very slowly.

IzzisMom, I thought of your little kiddo when V started crying with the first shot. I hope she did great and soon feels great.
 
We are home...she watched videos on the way there to distract her and we met our doc on the walk to his office. :) She cried for about 10 minutes (while I was icing her legs), vomited, then took the shots like a champ. A few tears about halfway through the injections (we did two; one in each leg simultaneously), but as soon as we were done she was fine!
I practiced on myself last night at work with a plain needle...I couldn't even feel the needle (and I couldn't find one as small as they are). It must be the injection that causes the pain...she didn't complain at all while I was pulling back to check for blood...so I am guessing that you can administer it pretty slowly.
I will be obsessing at work tonight wondering/making sure her dad checks her sites to be sure they are clear!

Dumb question...why don't all medical offices have puke bags/emesis basins? This is the second time she pukes on herself because they couldn't find something for her to puke in, and it happened to my son last month also. I am going to start carrying one in my purse lol! I already keep them in the car...

Dr. Rivera is optimistic about Humira because her HACA was positive. Her CRP is only slightly elevated at this point, but her vit D, calcium, and iron are still a bit low so we'll be getting supplements.
An optimistic day!!
Off to sleep before work comes around again :)
 
Oh excellent news! Yes, V said the needle was painless, it was the drug that killed. SLOW injection rate helped a LOT, she said.
Izzi's nurse and you both must have had good technique.
Awesome to hear. Now let's hear that they are back to normal living and symptom free...straightaway.
 
Yay!!!! I have been following this post for awhile now and these kids are giving me strength!! I will be starting Humira shortly and maybe we will all be on the same schedule. I hope everything continues to go well!
 
So glad to hear the injections went well for Izzi. Sounds like the anticipation was the hardest for her? I hope Humira helps her feel better quickly!

Can she take pills? I found chewable iron for Alex: Natural Factors Easy Iron
and his calcium/vit D is: Nutrition Now Calcium Soft Chew

Jennifer
 
She stinks at pills. We discuss it about once a month, but she makes herself vomit. (We were supposed to take a pill for her colonoscopy about a year ago...epic fail.) We have since tried mini m & m's, along with guzzling 16 oz of her fave drinks...I have no idea how but she manages to keep that tiny stinking piece of candy on her tongue lol! I need to watch that video soon.
She's already on ferrous sulfate, but I looking to see if we could decrease the amt of meds she takes...oops looks like she's getting a couple of extra supplements!
I just looked...she was diagnosed just over a year ago- 1/30/11. We should have had a bathroom party ;)
Oh, and there was blood in the toilet today for the first time in a month or two...c'mon, Humira-work your magic!!
 
Poor baby girl. I will be praying that tomorrow will be better for both of you. I know the pain your feeling, I have been there. My daughter was diagnosed at 8. When my daughters bottom gets sore she uses A&D which seemes to help.

Sorry, I'm still new at this. I thinks my dates are off.
 
Thanks, hopefulmom! My original post in this thread was a few months ago...but I swear by bordeaux butt paste for my kids :D
Looking for help deciphering lab results. Her platelet count is listed as a critical result (534 x10E3/uL)

Crp has decreased since march (from 6.8 down to 4.8 mg/dl) :)

Neut, lymp, and mono are all newly abnormal, plus her creatinine is low, alk phos is high,wbcis high.. vit d is low (10) and looking back it was low in march...kind of upset he didn't already have her on a supplement. :banghead:
Off to research these but any additional insights welcome :)
 
So I have learned a few things (always good ;))
Alk phos levels could be due to pentasa (although we have been off for a month at least OR vit d deficiency.

Not sure why bilirubin and creatinine are mildly low.think br tends to be high in ibders)
Decreased mch may be due to iron defiency
High platelet count common in ibd as platelets are increasingly believed to be involved in inflammation (' thought they were just for clotting)
Obviously her white count is off, and everything assoc with it.
I don't quite understand the segs/bands/ lymph ratios, although her lack of band eoson and baso may be steroid related.
Now to get her on some supplements and try to get a few of these #'s closer to normal! :)
 
So fab to hear all went well Angie! Izzi is such a trooper, good on her!...:medal1:

Alk Phos levels are often elevated in children/teenagers when they are going through a growth spurt/puberty.

I hope this is Izzi's wonder drug hun and she is soon feeling on top the world!

Dusty. :heart:
 
Izzi'sMom, V takes LIQUID ferrous sulfate, you may want to ask your doc about this. Easier absorption and you can give in several smaller doses over the course of the day so she needn't swallow a ton of the stuff all at once, and easier on the stomach that way. She also gets LIQUID Vit D3.
V's platelets are always high, that's part of the inflammatory response. Her RBC, MCH and MCV are always off like Izzi's.
 
Angie,
Glad it went well. Like Mark said, Brian and EJ are on the same Fridays! We injected last night too.
The humira has a sting to it, but at least it doesn't last long.
 
imaboveitall said:
Izzi'sMom, V takes LIQUID ferrous sulfate, you may want to ask your doc about this. Easier absorption and you can give in several smaller doses over the course of the day so she needn't swallow a ton of the stuff all at once, and easier on the stomach that way. She also gets LIQUID Vit D3.
V's platelets are always high, that's part of the inflammatory response. Her RBC, MCH and MCV are always off like Izzi's.
Click to expand...

Sorry...she is already on liquid fs. When I say she stinks at pills, I mean she doesn't take them lol! Thanks for letting me know vit D comes in liquid form, also...I will make sure they order it that way. :) The fs tastes terrible, but if we mix it with the right juice she doesn't complain much.
 
My daughter has been low in iron for a long time now, our GP told her she can discontinue to take the iron supplements she has been taking as it obviously isn't working (ie she's not absorbing it) and she suggested we speak with the rheumi about it and get her opinion. But, I'm not sure about this advice??? Doesn't make sense, wouldn't some supplements, even if barely absorbed, be better than none? How much of the liquid iron is needed per day?

By the way, both Stephen and Emily take the liquid D3. One drop is 1000 IUs so very easy to take...
 
Tesscorm, the dosage may need to be super high.
Violet gets 250mg ELEMENTAL iron per day, that is a sky high dosage.
Not 250mg ferrous sulfate, 250mg elemental iron.
Her supplement is: 44mg elemental iron in each 220mg FS per 5ml, and she gets 28ml per day.

Some folks figure dosage on the FS content, not the elemental iron content and don't give enough to replace the huge losses/malabsorption these kids have.
 
I used that super chlorophyll powder and put it in PB. It helps a lot with anemia. I got mine from unicity. Rowan went from 9 to 13 in 3 weeks. But hey I am not a veteran, but somehow I have graduated to senior member. lol I was also giving her ferrous sulfate... I read that ferrous gluconate absorbs better. Again I am not an expert but I am a big researcher. I use .orgs and .govs most the time so I can fire back at the doctors. Since they are not trained in nutrition.
 
Izzi's mom

Do you have iron studies and full blood results. Are there any notes/comments on the results.
catherine
 
IzzisMom, did they do ferritin as well?
And it's been two days post injection. I want them back to normal already. :biggrin:
 
No....I love our doc but I have to push a bit to get testing done. While I don't want them drawing blood every week just to draw it (she's 5 and it's scary) I *do* want to keep an eye on her.
I am not sure how Izz is faring...I am in the middle of my work week (I work 7 days on/ get 7 days off midnights) and only have her for 4 hours a day :(
How is V doing?
 
No change here, she still feels like a dishrag.
No bad reactions, though.
I just don't know what we'll do next if this 3mo trial fails.

I was just thinking of what V has done to assess her always low iron stores.
He always does ferritin, iron binding capacity and iron level itself.

He does fecal lactoferrin often. I asked for that to be done in two weeks after the next injections, and every four weeks hence. Nice noninvasive way to assess gut inflammation. If V's doesn't drop I'll be d/c'ng the Humira. It's the main way we assess her level of inflammation, if your doc doesn't do it you may want to ask about it, since it just involves a stool specimen.

Her doc always asks me if I want to add any tests and orders anything I ask for. He is a rare gem, he gives all pts his personal email and answers me right away usually. Thank God for him, I hear all kinds of stories about uncaring and idiot docs, and have worked with more than a few.
 
I'm late here but Claire's doc doubled her iron. She takes the ferrous sulfate (324 I think) twice a day. Just got labs back last week. Ironically her folate numbers are high BUT best H&H we've had in months.

Hugs,

J.
 
J...glad her h & h is looking good :)
We are supposedd to be doing ferrous ulfate 3 x a day but we only do two...I can try to also give her a dose at lunch to up her levels. I just feel bad as I. Am always giving her meds.
Thanks for the link, dusty...what would we do without you??? I knoow there is a ton of wonderful info here...why do I always forget to use it?
Hard to tell if the occasional fatigu is from iron deficiency anemia or just the crohns, and the anemia is just from the inflammation. Ill take a closer look at her bloodwork.
 
Dusty, an excellent link.
I just checked V's TIBC, ferritin, tranferrin and iron against the info in the link and her results are right in line w/anemia of chronic disease.
Thank you for that!
 
Just need to whine a tiny bit...pharma wont fill script for D3...one more thing i need to pay for oop-argh!
 
Shot #2 tomorrow :) She seems a bit less apprehensive about it...says it will only pinch a little for a second and then she gets her ponies :)
We see the GI in a little over a week.
Still no word on my Humira...I am told we are waiting on insurance approval still. Story of my life loL!
Haven't seen any major change, although I wasn't expecting one yet. No blood, only a couple of stools a day, still having pain.
Down to one dose of Pred a day, though, and two weeks until done!!
Hoping she can get off of the Pred for a while this time...those poor swollen cheeks!
 
Well I'm glad things are holding steady for now :)

Bring on the end of the dreaded Pred right ! LOL
You gotta love to hate that stuff !

Good luck with tomorrows dose ~ seems like she has a great attitude about it!
 
imaboveitall said:
Tesscorm, the dosage may need to be super high.
Violet gets 250mg ELEMENTAL iron per day, that is a sky high dosage.
Not 250mg ferrous sulfate, 250mg elemental iron.
Her supplement is: 44mg elemental iron in each 220mg FS per 5ml, and she gets 28ml per day.

Some folks figure dosage on the FS content, not the elemental iron content and don't give enough to replace the huge losses/malabsorption these kids have.
Click to expand...

Holy moly that is a huge dose.:eek2: Rowan though 4 has severe UC and had 4 blood transfusions in 3 months and takes 325 Ferrous sulfate 30 el iron I think.... That is a crazy high dose. They told me to find Rowan 15mg of ele iron... Ferrous Gluconate so she can take it twice a day... Supposed to be easier on the guts per new docs. I really like these new docs.
 
I was wondering how Izzi was faring. NO change for Violet yet, next shots tomorrow too!
Her 12y/o sister made her promise to wait until she gets home from school to do them so she can watch. :eek2:

Mary, yes, a HUGE dose, the druggist questioned it at first and no wonder. She's been at that dose since dx, 3.5 years, so it's actually a lower dose per kg than when she started; she was 59lbs then and is 128lbs now.
 
Angie, good luck tomorrow! I hope the dose goes well and it is just a VERY quick pinch! :)
 
SHe did pretty well...but I didn't lol! She was crying and I guess I didn't check the syringe well enough...when I pulled back to check for blood I got an air bubble that had been in the needle. I called the pharmacist, who told me to go ahead and restick her with the same needle (and .6ml instead of .8ml by the time I got done expelling all of the trapped air). She handled it like a champ and now I know to check it more carefully for air (I am super used to handling plastic syringes but have never touched a glass one...I think it makes me nervous. Well, along with her crying lol!)
She fussed a tiny bit when I first pushed...she asked me to do it more slowly and was fine after that :)
 
What a sweetheart! That's amazing that she can handle it all so well! And, amazing on you too, mom!:rosette1:
 
Awwww, bless her...what a champion!
goldstar.gif


Dusty. :heart:
 
Hmmm...she had a red itchy patch on her cheek today...anyone experience this after Humira? I emailed a pic to her doc but her nurse didn't seem to think it was related. (I didn't notice it until around 12...and her shot was around 10...but I wasn't really paying attention to her-I know, bad mama lol!) I applied some topical Benadryl and told her dad to watch her tonight.
I am not sure how long, Mary...she is also almost off of her Pred (down to .5ml today and done next Friday!!!!) so time will tell. Her disease is so wishy washy...makes me wonder if there is something in her diet but after months of food journaling I can't find a link. She is really stable right now, I guess (only in the bathroom a few times a day but awful pain a few times a day also). I guess I just wish "stable" was "better", know what I mean??
 
Unfortunately yes I know what ya mean. I am saying extra prayers for izzi tonight. I find a connection with Our Lady of Lourdes... Without that I wouldn't have made it. It comforts me to see Rowan with Jesus and Mary. I will picture izzi and row with them for now on. I pray the medicine works for her. Your doing great mom.
 
EJ has never had any reaction other than itchy red skin around the injection site. I hope it's nothing Ang!!
 
Angie,

Until Johnny was off the Prednisone he didn't really become "stable". I don't know how that drug effects them but Johnny had normal inflammation levels but would still vary every couple of days with his bm consistency, sometimes blood, sometimes nausea, etc. Nothing seriously disturbing but I was constantly afraid he wasn't going to do well once he came off. It has been two months now since he has been off Prednisone and he has evened out considerably. The Dr. also told us he considers Johnny in remission now and we just got that news yesterday. So I would be hopeful that you will see some positive changes once she is off the prednisone. It might take a bit longer though because she has been on it longer than what Johnny was on it. I know it doesn't really make sense that she would be better after the Prednisone and maybe it was just that the 6mp took 4 months to really get going in Johnny but he is doing better now.

Praying Izzi does well with Humira and the Prednisone taper goes well!

((((hugs)))))
Tiffany
 
Angie, I hope the itchy patch is gone today! And that the Humira and tapering will bring her to an 'improved' stable. She really deserves to be feeling better soon. :rosette2:

Tiffany, great to hear Johnny's is remission! :congratualtions: Must have been wonderful to hear the doctor say that!
 
JMom, that felt good to read...REMISSION for your boy. I LOVE success, it keeps me going. :)

IMom, could it be eczema showing up?
YAY IZZI for taking her shots so well, just a little kid, and not freaking out over it is awesome to me. Looking for a success post from you guys soon, followed by one from me!

V did her shots too; she kills me with her coping ability.
:heart: to all these kids and their strength they shouldn't have to use. *sniff*
 
Tiffany...how exciting!!!!! I am so thrilled for you...give that boy an extra squeeze for me!! I am bothered re the pred taper because it worked amazingly well at first (she was COMPLETELY normal...solid stool 1 x a day, no pain). Every time we weaned her symptoms came back and now (we have not tried to wean for months...she has been on a low dose since early fall) she is "stable" but not "well". Her symptoms are all over the place.
Julie, if it is eczema I will cry. I suffered with it as a child and although I am sure the treatment has improved I was in SO much pain...my skin was raw. I had a bad flare in my late teen years followed by the onset of psoriasis. Crohns is enough for these kids...dam@ the extra intestinal manifestations!
 

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