C winter update-frustrated

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Okay, thoroughly confused. I talked to the GI nurse about the heart rate and GI wants C to try a px of iron supplement, not sure of the name but it starts with an "n". So , I'll pick it up today.

Also his FC results came back. They were taken while in the hospital and a week after the ct scan that showed quite a long segment affected in the TI. The result was 127!

This is what I know:
1. A week before the FC he was in a definite flare with episcleritis, stomach pain and inflammation felt by GI on exam. He went from exam to remicade to CT that day.

2. The next week still having joint pain in knees, weight was failure to thrive point so GI admitted him to give fluids and start EN. FC was also done at this time. Exam in hospital doc still felt inflamed area(or was that scar tissue?)

So questions:

1. So does the low FC result indicate that the affected area seen on ct scan is scar tissue?

2. Or is it just due to the fact his affected area is in the TI and FC isn't as precise?

3. Did remicade lower that affected area(if inflammation) to a level that was only minimal in the week between infusion and FC test?
 
I don't know Jack's area of inflammation in TI and small intestine only showed a slight elevation in FC (90 at base to 395 when inflammation present on MRE). I think it's possible for remicade to lower level of inflammation but maybe it's just not keeping it there.
 
I wonder if C is dealing with scar tissue and simmering inflammation that really raises it's ugly head right before the next infusion.

We go to the GI on the day we would've been scheduled for remicade so that should tell us more too I guess, ifbsymptoms arise.
 
Reading your post, my first inclination was scar tissue. But I also think Remicade could have cleared up any inflammation pretty quickly. Hmmm...
 
Yeah and now I'm upset. The GI nurse calls back to say GI feels it is a bit of both. I'm really appreciative since it was after hours. Then she goes on to say regardless we won't be changing treatment right now. At first, I didn't catch on to what she's saying and I say I think the GI appt scheduled for the day his remi would've been will give us some insight. Then I understand what she is saying and I say, the GI has already dropped remicade. She said when and I said when we were in hospital. Her reply was oh. Wth kind of reply is OH and thanks for calling after hours but look over case notes or start taking notes on what you've said Mr. GI. I couldn't even say anything else I was so upset.
 
Oh gosh clash I am so sorry you guys are going through all this! If I were you though I would call back tomorrow to speak with the GI. To often we have gotten inaccurate info from the staff. Sending you a big hug.
 
When is his apptmt? But I do agree with Kim... if his appointment isn't soon, I would call back tomorrow and either ask to speak to the GI or, at least, tell the nurse that you were left confused after her call and would like to clarify...
 
I can say for DS he had one FC at 243 while on remicade.
Our Gi said it was from a mini flare 3 months before.
He stated it takes a very short time to increase to the thousands for FC but can take a very long time to decrease to normal levels even on remicade .

I would talk to the Gi .
 
His appt is on April 17th, about 2 and a half weeks away. I know the GI won't be in the main office tomorrow so it will be Wednesday before I can call back.

I thought C would be perturbed about this as well but he said, I don't have a remi scheduled and if he wants me to stay on remi then he can explain it to me at the appt. The hubby has said the same that today's Congo really changes nothing and that he would rather speak with the GI in person so we can all look at each set of results together and have his undivided attention.

C is still gaining, not sure if I mentioned but he is at 125.
 
How frustrating. I would agree with a call to GI being in order to clarify and then when your meet face to face you can have your questions ready and research done.
Fabulous news about continued weight gain!
 
So today we ended up at the ER with the elevated heart rate. I was hoping they would take his iron levels but know because that is sent off, small local hospital.. C mentioned there was a feeling of tightness in his chest when his heart rate goes up so we spent 6 hours there while they ensured he wasn't having a heart attack. They kept calling it chest pain and he'd try to tell them no it isn't pain just like a feeling when my heart rate goes up. So we now know he isn't have a heart attack and no blood clots. Follow up with GP which we wouldve went to first but he's on spring break vacay with family.

Oh and CVS doesn't know if C's iron supplement is otc or px but they don't have it in stock and have no idea why it didn't come in today. I'm a little freaky about the iron supplement anyway since there is no number showing deficiency and no one has looked at his ferritin levels.

Oh and after 6 hours in ER, C pretty much has banned me from ever taking him back to an ER, ever again.
 
:ghug::ghug::ghug:

1. So does the low FC result indicate that the affected area seen on ct scan is scar tissue?

If you take the possible effect that Remicade may have had then low FC levels coupled with persistent symptoms would then to point to scar tissue.

2. Or is it just due to the fact his affected area is in the TI and FC isn't as precise?

Initial studies did suggest that FC was not as reliable an indicator of inflammation in the small bowel as it was in the large. However later and more extensive studies now say that its reliability is equal.

3. Did remicade lower that affected area(if inflammation) to a level that was only minimal in the week between infusion and FC test?

If there is a combination of acute and chronic inflammation then it is possible that Remicade could have had an effect on the acute inflammation resulting in lower numbers. Acute versus chronic (scar) would fit with the Remicade effect. Remicade is fast acting, so much so that it can have the side of creating scar tissue due to a healing process that is too rapid. I don’t mean this is the case with C, I am just demonstrating its potential healing times.

Oh and CVS doesn't know if C's iron supplement is otc or px but they don't have it in stock and have no idea why it didn't come in today. I'm a little freaky about the iron supplement anyway since there is no number showing deficiency and no one has looked at his ferritin levels.
Click to expand...

As you know, it really is imperative to get his Iron Studies done so his ferritin levels can be reviewed. Regardless of his Hb you need to establish if you are dealing with anaemia of chronic disease or an iron deficiency anaemia. As has been said though, chronic inflammation can artificially inflate ferritin levels so the whole picture needs to be looked at.

Anaemia can cause tachycardia (fast heart rate) simply because the heart has to work harder to get less, mature oxygen carrying red blood cells to the vital organs. Rest will improve the situation as the heart has less work to do. Exert yourself though, even something as simple as getting up and walking and the cardiac workload instantly increases and so does the heart rate.

So what is causing it? It may well be the type of insidious bleeding that can occur in the small bowel. It’s not overt but rather more like a dripping tap, not much on its own, you can’t see it with the naked eye, but over time all those drips add up.
Or it could be scar tissue, acute inflammation or both. They will both cause malabsorption and the TI is one key area where folic acid is absorbed.

The supplements: Most of the iron supplements start with F or have Fe in their name. Nu-Iron is one exception that I can think of and you are justified in being concerned with supplementing iron if in fact iron levels are normal. Short term use is not a problem, only if used over longer periods of time.
Another I can think of Nephro-Fe. This is a combined iron/folic acid preparation.
Just be aware of these combined types of meds if folic acid is needed more than iron, we were caught out with this once. Sarah was already on Folic Acid 5mg three times a week and needed an iron supplement. The GP decided to kill two birds with one stone and prescribed Ferro-F. The iron component was fine but when her next blood result came back her Folate had dropped significantly. The problem was she had gone from 15mg a week to 2.1mg as the Ferro-F only had 300mcg of Folic Acid.

Good luck and thinking of you guys! :heart:

Dusty. xxx
 
Thank you for all that info Dusty. The questions you addressed are exactly what I am going to bring up with the GI and will now be incorporating your replies.

I went back and read my post from last night. Wow it is a wonder anyone got anything from that.

Just to be clear all of that was sarcastic banter. I was not worried that C was having a heart attack that is just all the hospital latched on to when C mentioned chest tightness which made the trip fairly useless.

C's heart rate is elevated at all times now , meaning even when sitting or lying it can be higher than normal. It may not be tachy but still high, kwim. So sometimes 90 resting, sometimes 104 but then if he gets up and walks it goes to 125-136 and remains there. The really great triage nurse felt C was possibly dealing with orthostatic problems due to low blood volume but unfortunately he was not in charge of C's visit.

The iron supplement the GI px'ed is polysaccharide iron brand name niferex. C's GP being on vacay sucks because I would really like to get an iron study done before we start with supplementing. I do feel this is one of two things:

1. Some form of anemia due to the reasons Dusty mentioned.

2. An orthostatic issue caused by the excessive bed rest which has led to a deconditioned state.

ETA: They did a bolous of fluid fairly quickly because the triage nurse said that would build blood volume as opposed to a slower drip. His heart rate did improve with this, at least resting hr improved.
 
Okay, I have misread things, I thought this was C’s second ER admission in the last week. :facepalm:

Re the dehydration, I see you are pushing fluids so…do you still think it may be playing a part in things? Have you seen his urine? Is he losing much fluid via the bowel?

I’m sorry, I should have articulated better. Anaemia can cause increased heart rate at rest. I was thinking along those lines with the lower numbers at about (104) and up around 130 on exertion.

And just a couple of other things that I know would have thought about that may be feeding into the increased heart rate:

Pain - is any present.
Infection - will increase heart rate.
Anxiety - either with his own situation and/or that of the extended family.

Dusty. xxx
 
No Dusty your post was dead on to me as far as what you conveyed. I completely got everything you were saying. I felt you understood my post I was just worried everyone thought I was concerned C was having a heart attack when in reality I was hoping for iron studies and lab work. Yet the ER latched on to chest tightness in a 17 yo and so we got EKGs, xrays and d dimer results...ughh.

He is urinating regularly and I don't think he is dehydrated. He gets plenty of fluids I was thinking more of deconditioned state and orthostatic intolerance due to low blood volume. A hypovolemic type of situation due to being in the bed for so long. This is probably far more unlikely than some form of anemia.
 
Oh and the CBC last week at rheumatologist and this week at ER showed no infection. He has no pain and I seem to be the only one quietly stressing about his health. Since the feeding tubes with stylus came in he's all pro at the feeding and is enjoying his week of spring break...well except for me hauling him to the ER yesterday...He wasn't happy with that at all.
 
Okay kimmidwife hit the nail on the head the appt for remicade hadn't been cancelled and that coupled with the reg nurse being out resulted in the GI thinking we were still pushing remicade. He would rather forgo the treatment and do another eval instead. So at this up coming appt we will be discussing the next step for treatment.

C has his physical therapy eval next week and is looking forward to that. He is also weirdly looking forward to the next MTX shot to see if it doesn't hurt again, huh?
 
Grace looks forward to her Mtx shot. I think she feels it helps. I guess if she thinks that, I won't argue.:hug:
 
Ok wow I'm going to have to go back on anything I said about the local ER. The doc that saw him yesterday just called to check on him and went over all the lab work with me and complimented C on how well he seemed to handle his illnes and how polite he was. She said his hemoglobin and hematocrit was stone cold normal. I can't remember the hemocratit but hemoglobin was 13.8(didnt ask for range) but googling if she counted him as an adult then he is at the very bottom of the range but if a child then it wouldn't be. What do you guys think?

She was pleased with who our GP was and said she'd be glad to make sure all docs got all the test results.

ETA: all other labs she went over with me were normal as well.
 
That is very impressive! Glad to hear. I am very curious what the doctor will say at his appt. I know you will keep us posted.
 
The ranges are different everywhere. Sarah hemoglobin is 11.7 which is considered normal for an adult female. My youngest daughter is 11.5 this is also considered low normal she only 15.
 
I'm going to pick up the lab today. I looked at his CBC from the rheumatologist which was 7 days before the one done at ER. His value was 14.4 and range was 12.0-16.0. I wonder and I guess it depends on the units used to measure if the drop from 14.4 to 13.8 in a week is significant? I will go by and pick up a copy of the labs today and see if the same units of measurement are used as well as the normal range the hospital lab uses.

ETA: What you are saying Dusty , about NNR then male and female would be in line with the rheumatologist notes. She considered 14.4 , new onset anemia even though the range was 12.0-16.0
 
Yes, compare apples with apples. :)

That said, I personally wouldn’t see 14.4 in NRR of 12-16 as indicative of new onset anaemia. Even fluctuations 14.4 to 13.8 may be just that, a fluctuation, unless further testing tracks a downward trend. I think the rheumi needs to further clarify her comments.

Just a side note about me. :ybiggrin:
I have at times become quite obsessed about blood numbers, can you believe that?! :lol: But the most frustrating times of all is when different labs have been used. One minute I have been sailing along in a sunny dream world of no asterisks and then BAM! We use a different lab and evil rears its ugly head in the form of an * Arrrrrrrgh!

Dusty. :ybatty:
 
Ha...no Dusty you obsessed?

The rheumatologist nurse only explained it by saying the rheumatologist was real particular about hemoglobin numbers and C would need to be checked in 4 weeks. Since it was just a note on the labs and I didn't hear from her by phone about it then I can only assume she was flagging it but didn't feel it was terribly concerning.

I'm going to make an appt with C's GP for when he gets back next week. Yesterday evening sitting up C's heart rate was 114. I know with exertion it will go even higher. The polysaccharide iron should be in today and I guess we will just supplement until I can get in to see the GP. I really hate supplementing without knowing the numbers of an iron study but I don't see any way to get that done until GP is back next week.

Although, I'm freaking out about this heart rate and all the blood work and what it all means C is not concerned at all. He doesn't feel bad(although I think he seems more fatigued) and is just going along as if he doesn't have a care in the world...ahhh to be young again!
 
Clash,
I am wondering if he was better hydrated on the second blood draw. Dehydration can make your hemoglobin more elevated since your blood is more concentrated.
 
Could be kimmidwife. He did look a little dry to me when we went to the ER. I even thought at the least it would be good if they gave him fluids.

I'm just ready to get to the bottom of all of this.

Btw everyone, my husband's oldest niece came through the hip replacement surgery well. She is in a lot of pain but the doc said they would have her walking by this morning and hopefully discharged tomorrow. So far no markers of infection, thankfully!
 
The hemoglobin is good. My son (20) would love to have such a hemoglobin; the best he can do is 12. I don't know what to make about the difference between 13.8 and 14.4 without a third value to see if there's a trend. If dehydration affected the HG values, he would have been better hydrated with the 13.8 than the 14.4 (less hydrated).

How long has he had the elevated heartrate? Did they do an ECHO and/or EKG in the ER? What do his doctors attribute the elevated heart rate to? It doesn't appear to be due to anemia or dehydration.
 
xmdmom, the last time he was anemic his hemoglobin levels were normal but his ferritin levels were deficient. So he has had normal HGB levels and been anemic due to the low ferritin levels before. At that time he also had an elevated heart rate.

They did ekg, xray and blood work including d dimer to check for clots and every thing was good. On the ekg it was normal, sinus tach though.

His GI is going off my phone call and discussion with rheumatologist and feels it is probably anemia again, hence the polysaccharide iron. The GP is on vacation this week but we have an appointment for Monday so I am going to get him to run and iron study.

Just picked up labs from Monday a week ago and this week from ER, they were also faxed to GI today.
 
I've heard of iron deficiency with a normal hemoglobin but I'm not familiar with anemia with normal hemoglobin. Anemia is usually defined as a hemoglobin below a certain level.

I was not aware that low iron by itself (with normal hemoglobin) could cause a fast heart rate. I thought elevated heart rate only occured with a significantly lowered hemoglobin.

Did he seem to respond to the iron last time? I don't know anything about polysaccharide iron.
 
He did respond to the iron but he had a lot of issues with the supplement he was px'ed. I can't at the moment remember the name but due to that is why he was px'ed the polysaccharide iron this time. He wasn't on it for long last time and it seemed to me the start of remicade and how much he improved on it in such a short time did ore for the anemia that the iron sup. But it has been so long I might be mistaken.
 
I looked up polysaccharide iron and saw Bifera, which my son did try, but it didn't work for him. I could definitely believe that the Remicade or other effective treatment for Crohn's would improve anemia faster/better than oral iron.
 
The brand C is pxed is Niferex but the pharmacy is having a hard time getting it and it is frustrating me to no end.

I agree with you about the treatment getting him there faster than an oral iron supplement. Im hoping for the iron studies first of next week and if all are normal then I'll take C to my Electrophysiologist and let him check him out, do an echo and hopefully an event monitor or at least a halter monitor.
 
If our gi got the same drop in haemoglobin results she would retest the haemoglobin again earlier the normal. The retest would be on confirm whether the drop was a normal variance between tests. Or that the haemoglobin was indeed heading in the wrong direction.

My understanding is the level of haemoglobin is not always reason why the symptoms occur. When the haemoglobin drops to the level the individual body is not use to quickly you get more severe symptoms. Some people get symptom at higher levels.
 
Catherine, that is what the diagnosing GI told us with C. He said if he was experiencing symptoms and ferritin was low , then HGB wasn't as important as some people experience symptoms at higher levels than others.

Since the first test was at rheumatologist and the second was at ER, I got copies of both maybe units of measure is different?

The one done at rheumatologist on 3/25:

Hemoglobin 14.4 range 12.0-16.0 g/dl
Hematocrit 41.1 range 36.0-49.0%

At ER on 4/3:

Hemoglobin 13.8 range 13.5-17.1 GM/DL
Hematocrit 39.9 range 39.3-49.7%

ETA: Thinking maybe GP will run one on Monday as well too.
 
Yes people may be symptomatic at different hemoglobins but I'd be really surprised if someone got a fast heart rate due to a hemoglobin close to 14. It's definitely contrary to everything I was ever taught about anemia. That doesn't mean it's not true. :)
 
Thanks, I didn't think the units were different but then wasn't sure since capitalization was different! I thought maybe there was a difference in range for the same reason you mentioned.

It is going to be a long weekend for me as Hubby and I are going out of town to visit relatives and C will be with my parents. We were supposed to go for two nights but down sized to one.

It is spring break for C this week but doesn't mean much since he doing flex school with independent study.
 
Update:

C had his GP appt today for his elevated heart rate. Of course both times it was taken at the appt it wasn't tachy, 92 and 88. But GP had hospital report where it was 126 the checks throughout that ER visit.

He is checking his ferritin levels, tsh levels and has him on a 24 hour heart monitor. Of course when we got home C called me upstairs and just propped up on his bed it was 124 so hopefully the monitor is catching all that. The aggravating part is this is just a 24 hr monitor that has to be sent off and read as opposed to one of the new holster monitors or event monitors that auto uploads so we are in for a two week wait.

At the GP today, C was 127.6 lbs so still gaining weight!

Oh and I go into his room a little while ago and his formula is just drip, drip, dripping into the floor! He had unhooked to go to his car and get some work and didn't put it on hold or something. Worst part....He was sitting 4 ft from this and didn't notice...seriously?
 
So I am starting to freak out a bit today. C's iron levels should be back and if it isn't some form of anemia causing his elevated heart rate then I don't really know what to think. I guess it could be deconditioning, not really sure if it fits. He has his pt eval on Wednesday and I'm don't know how his heart rate may affect that.

It really just blows my mind that I went through all the diagnostic tests for an elevated heart rate and episodes of sinus tachycardia to find I have some crazy dysfunction of the autonomic nervous system with a silly sounding acronym, POTs, just a few months ago and now C is experiencing an elevated heart rate. I just feel this feeling of dread of here we go again. All rationale tells me it is ludicrous to think we could be dealing with the same thing and another part of me is worried that it is something even more concerning(not taking away from those that suffer with POTs).

I'm both ready and afraid to get the iron results back. Days like today totally suck.
 
Clash I promise you V has the same thing when disease is active and I was told by the pedi CARDIOLOGIST (yes she was seen by one, had an echocardiogram, EKG etc) and GI both that dysuto will be exacerbated by active Crohn's, and not to worry unless she starts fainting.

Not saying your fella is A-ok or don't investigate, just trying to help your worry :hug:

He likely has POTS as V and you do. Does his BP drop with standing? V's does and she gets tachy (ex HR went from 84 to 126 in doc's office when he made her stand up, diastolic BP often is in the 30's).
 
Thanks imabiveitall. We haven't checked his sitting to standing bp. Since his hr just started being high regardless of sitting or standing and the increase wasn't more than 30bpm I haven't really allowed myself to go down that road. He can be sitting with a hr of 111 and then after standing for several minutes it will be like 136. So close to the required 30bpm increase for a POTs dx. But C doesn't feel dizzy from it or really anything other than he can sometimes feel it race. When my hr is over 105 I can physically tell but maybe that is due to age difference or something. Also I don't have the drop in bp upon standing so not really sure how that feels, my runs a bit low on its own, 90/60, feels normal to me.

If he needs further investigation then I am thinking of getting the ped GI to refer us to the ped cardiologist at the children's hospital. I know he is almost 18 but in our area he would see the same adult EP cardiologist I do and that guy is a bit too indifferent for me.
 
Start checking his BP when sitting, standing and lying down. If it fluctuates, you are likely dealing with dysuto. (This was per the cardiologist, she did this in exam). V has just diastolic hypotension (dysauto related), her systolic is always normal but diastolic can get so low it cannot be detected. This freaks some nurses out.
I was told the tachy is the heart's response to the dropped BP, (trying to pump faster as pressure is lower) so maybe your guy's BP is also dropping.
 
Ha! Great minds think alike, had the nurse check bp sitting and standing and no change. We turned in the heart monitor so more results to wait on. She called right when we got home to tell us C's ferritin was on the low side. It wasn't in when we went by. I don't have the units but his level:

37 range 26-388

I guess it depends on the type of dys. you have for POTs a bp drop is not required just sustained heart rate of 30bpm within 10 minutes of standing(40bpm ages 12-19) in the absence of orthostatic hypotension or a sustained heart rate of 120bpm within 10 mins of standing. Right now C doesn't meet the criteria by a poor man's tilt table but who knows.

So what does every one think of the ferritin level? The GP said ferritin doesn't affect heart rate HBG dies but agreed that symptoms could be individual at different levels just wasn't sure 13.8 would be low enough to feel symptoms. He hopes the monitor will help direct us.
 
Certainly anyone can respond differently to their body's fluctuations but HGB of 13.8 doesn't seem to be significantly low (ie S is always around 130-145, I imagine the equivalent to 13.0-14.5). When I had problems with low HGB a while back, I had a racing heart rate at any type of exertion, walking up a hill (not steep), going up more than 10-12 steps, unusual fatigue - at the time, I didn't know my hgb was low and just thought I was out of shape :facepalm:, but when my dr tested, my HGB was around 83 or 87 (8.3 or 8.7) - much lower than C's???

But we all know our kids respond so differently to various lab results so I guess that could include sensitivity/response to HGB levels.

Is C's ferritin level from blood or stool? We have different levels here - S's results are always ferritin-blood, normal range is 10-171 and S varies widely from a low of 14 to a high of 67 (no 'clear' trend, no 'strong' relationship to treatment, just wide jumps). Our ferritin-stool range (31-300) seems more similar to the normal range you mentioned, in this test (S was only tested once, a month before diagnosis, while flaring), he was at 92.

Not sure if any of that is helpful???

:ghug:
 
When M had iron infusions, her ferritin level was 6 I think. Her hemoglobin was 10-11 (but she's always on the low side, that's normal for her).
37 doesn't strike me as very low, but I suppose if it's usually higher it could cause symptoms? Sorry, I can't remember much of what the pediatric hematologist told us!
 
Thanks guys. This was a blood test that he had not stool. I only remember his heart racing that one other time. I'll go back and see if I can find that lab, I don't think the HGB was much lower but it seems the ferritin was much lower than the value he has now. The nurse at the school kept checking his hr then because he was in her ofc sick so much(right before and during dx) she was always concerned about it but once we started remicade I remember it leveled out because she was happier when she checked. This only sticks out because it seems that woman was calling me 3x a week about his heart rate. I finally just told him to call me if he felt unwell and I'd sign him out because a trip to her office for CD symptoms always resulted in a hr check and phone call.

But any who, this doesn't seem terribly low to me either so hopefully we will have more direction when the monitor results come back. The GP did say he wanted him to go ahead and start taking the iron the GI px'ed. I just found a pharmacy that had it yesterday. My pharmacy has had it in on order for a week!
 
Do you have the other iron numbers?

If I remember correctly C's Crohn's is not in remission.

The ferritin level is Ok, as long as it is not being raised by inflammation.

We have rarely had ferritin out of range but have had all other numbers out range on the iron panel.

Sarah's ferritin level was 180 when told her iron levels were zero.
 
Catherine, I can't even tell you if the others were run, I'll call tomorrow and ask. I wouldn't doubt it if they weren't since ferritin was the only one I mentioned. Which is ridiculous but seeing as I had to push on the ferritin with the GP I bet that is all he ran.

I can't wait to get to the GI, I don't fully understand all the correlations between the different iron values but I know I can get him to run everything and go over it with.

Just frustrated tonight. Thanks everyone, you all keep me sane and help me to keep pushing forward.
 
Yeah, just reading all this, I think I once remember writing out a nice, easy to read post about how inflammation affects iron (I guess it was an issue at some point and I researched it :lol:) but now... I can't remember how it all connects! :ybatty:

Hopefully, the monitor will shed some light on what's causing the hr fluctuations and you'll have more answers from the GI as well!

For now... try to sit back and set aside the worry for tomorrow (a glass of wine may help! :wine:)
 
Fwiw DS ferritin was a 9.7 (10-300)
After oral iron ferritin is 25.??
We haven't seen Gi yet but will soon to discuss .
Not sure how all the iron numbers fit either .

Good luck
 
MLP, what type of iron sup was he on? I know you've mentioned it before but I was just wondering.
 
I don't know if you are buying an 'easily absorbed' type of iron supplement but, my daughter was first using Slow-FE and when her iron wasn't increasing at a quick enough rate, her doctor changed the supplement to Proferrin and this one made more of a difference. But, she was almost 18 years old, not sure if either could be used for children.

Kimmidwife has also mentioned a liquid iron supplement that her daughter has used.
 
DS takes chelated iron. Iron bisglycinate by Albion labs from solgar .
Chelated iron is "suppose " to be easier to be absorbed and cause less Gi upset etc...
That said DS had diarrhea and some blood when he started the iron .
Gi had us add a small sandwich and so far so good .
DS has been on it since the end of January .
 
Not sure if Proferrin is chelated iron (didn't see mention of it on the site) but here's their description. FWIW, both my daughter and I use it and the only side effect that I've found is that it makes both of us 'more' regular (in a good way, no diarrhea nor constipation). It does say for adults - although, perhaps, C would be considered an adult in this case??


What is Proferrin?

Proferrin is an iron supplement made up of heme iron polypeptide naturally sourced from bovine hemoglobin. It is indicated for adults, 18 years and over to prevent or treat those at risk of iron deficiency.

What is heme iron?

Heme iron is essentially the iron in hemoglobin devoid of the protein which is removed during digestion or processing. Heme iron is readily absorbed via specific heme receptors. Heme iron absorption is not affected by food, phytates (bran or wheat), polyphenols (compounds in tea or coffee), calcium, or by achlorydia (low stomach acid). Heme iron is absorbed as is by the intestine, without any additional processing or conversion needed.

You may take Proferrin anytime with food or drink as there are no dietary restrictions.

Side effects such as constipation, diarrhea, nausea, upset stomach and cramping are less than are found when taking ionic or salt irons.
 
Probably totally off base but was C taking pred recently? Patricia posted re adrenal insufficiency even after tapering and was just wondering if this could be a factor in C's heart rate??
 
No, C hasn't had pred sins dx two years ago.

So meds he has started recently or had dosage change. Started xyzal(allergy med) for the season about 3 weeks ago, mtx injections, celexa 10mg a day, and he has been on 2000 of vit d but he started EN which is supposed to provide all nutrients, need to check and see how much vit d that would be. So maybe a med or dosage change has caused the hr increase?

I could guess this out into next year but probably won't get anywhere. Ughh.
 
Yes, you're right abt the guessing! :ybatty: we just hate the waiting!! :)

Re vit d - S did supplement with 1000 while on supplemental en bcz formula only provided 600 and he was taking another calc plus d supplement. Total was 2000. So, yes, check what his formula provides. He may not need the extra d??

The worries never end... S had a really bad cold/flu last week with fever, coughing, etc. :eek: didn't want to panic but tough when you're not thr to see how they really are. Then, Yesterday, txts 'mom, I feel way better but when I cough, my phlegm is brownish-red. What do u think?' :eek:utahere: 'I'm coming!' :lol: But, didn't panic, we talked our way into thinking it might hv been the tail end if the sinus infection and seems to b gone tdy. Whew!! But hate how easy it is to panic. Of course, I was immediately thinking remi and lung infections, etc! :)
 
Don't you just love the college years...independent enough that you usually aren't in on any day to day details until the dreaded sick texts! I swear the first year J only tested when she was at the point of deathly I'll. It has come full circle by her senior year so I'm getting daily updates now most of which entail why she needs extra money for the month!

I hope S is over the flu/sinus gunk and back to the college life quickly!
 
:lol: I get those 'i need money' texts too... and mostly from my daughter who lives at home! :D
 
Kimmidwife, I looked that up last night. I guess it could be a possibility but this is the second year he has used and had no effect last year. Anyway, I'm putting it down as a question for sure!

He had his pt eval today, took about an hour. He will swim with the pt twice a week and has some at home exercises to do.
 
Tesscorm, I just got the sick text from my daughter. Her text at 12 am no less was: I don't feel good.

I asked what was going on and she said nauseated and headache. There is a bad stomach virus going around her uni, goodness knows I hope she doesn't get it!

It is my birthday weekend and we are planning to go see Lion King in Atlanta. We try to catch a couple of plays a year when time permits, also gonna do some shopping. My daughter is going but C had already seen it on Broadway so he isn't. After we planned all this he got invited to prom so I'm gonna miss that. I have told him to make sure he gets plenty of pics and all that jazz. So sad I'm mot going to be here but he is probably glad, I always drive him crazy with pics! Of course if J has the stomach flu I'm not letting her near me so I might have am extra ticket and they serve wine at intermission! LOL!
 
:lol: Is the ticket up for grabs?!?!? :bigwave:

Hope J doesn't get sick!! It would be a shame if she couldn't see the show with you. :( And totally get missing C's prom! I would be so upset as well (but, honestly, S would probably feel the same way re me taking pics!! :rof:)
 
Hey, I just saw your post in another thread that said the boy has gained 18lbs! In just four weeks!
Love love love it. :thumright:
 
I know, imaboveitall, it is so fantastic! This is on our home scale that is one of those techy fitbit scales. The day before his hospital admission on the fitbit he weighed 111 now he is 129. He has been weighing right after shower in the morning. He was admitted on March 13 so today is exactly 4 weeks ago!

Also, the PT told C when he was manipulating his ankles and such that he could tell something about growth plates, C couldn't remember exactly but that it meant he still had some growing to do. Does anybody know how he could've determined this or was it just something positive to say?
 
Now could C convince my daughter to try ng tube tube feeds ;) ?!!
That would be a feat!
Very glad he's gaining! Not sure what the PT meant though.
 
Thanks Maya142 we are so happy with the weight gain but honestly my harping didn't get C to try it either, it was probably more to do with me talking about Tesscorm and S. He did so well on it and Tesscorm made it seem like it was no big deal for S. That and the remi nurse freaked out on C about how much weight he had lost and how serious it was that he just finally said okay I'll do it! It helped that he couldn't really stomach boost or ensure!
 
First, C just gave himself his MTX shot and he has a little belly pudge! The look on his face when he saw it was quite funny.

Second, I hate nighttime, his hr has been higher in the evenings and he said he felt a little short of breath. His hr was 128 sittingvat the time. Last check 97 sitting so it had cone down. I am just ready forb some answers but having to wait on the monitor results to come back. I'm going to call tomorrow about tsh results, maybe they are in.

He doesn't act like he feels bad, in fact he was pretty much bouncing off the walls today so I'm trying mot to get worked up.

No CD symptoms yet and we are 6 days out from when our next infusion would've been. Fingers crossed symptoms stay away!
 
It has been some time now I guess, since it was tested, I think Dusty. When he goes to GI next week I'm going to push for a CBC with diff., an iron study, a vitamin panel including B, D, folic, magnesium any others I should ask for?
 
You have covered just about everything we tested regularly Clash. :) The only other things I have tested on a regular basis is LFT’s and UEC’s (I think that is what you guys call a CMP?) and Zinc.

Oh and ESR, CRP.

Dusty. xxx
 
Does he occasionally take zofran? It can cause prolonged QT and tachycardia. My son was having issues with tachycardia and shortness of breath while on Prednisone but he was also occasionally taking zofran. The night we landed in the ER I can't remember if he had taken any zofran that day, I didn't even think of it at the time because it wasn't a med he took regularly. They found a prolonged QT on DS's EKG. Once I read the black box warning for zofran I thought maybe it was a possibility.
 
Dusty, he had CRP and SED checked 2 weeks ago. CRP was .5 range <.60 and SED was low normal. I'll have to look at LFT and CMP not sure about those!

Johnnysmom, I had no clue about zofran and heart issues. C doesn't take zofran though and his EKG was normal, just sinus tach.

I did notice the corner of C's eye was a little red last night, usually I would automatically think episcleritis which would mean CD symptoms soon to follow. But allergy season is so bad here that upon closer inspection his eyes seemed to have that allergy glaze redness. The next few days will tell the tale on that.
 
Hey guys, hope all are doing better. Nick has recently complained of a feeling like his throat is closing up and has occasional fits of coughing which sound forced, to the point that I say relax take it easy, breath. He says it make s him feel like there is something to clear and he can't breath. They are few and far between but a little scary, it occurred to me they may be acid reflux and explained this to Nick, but find the power of suggestion to be very powerful. Perhaps I will add a Zantac to the mix.
 
Hopefully, that will take care of the problem. If not you might want the doc to check he may need nexium to be px'ed.
 
Sooooo....the heart monitor results came back normal which is the craziest thing I've heard. During that 24 hour period we took his heart rate twice with two different types of heart rate monitors each time and both times the monitors agreed with each other, both timesbhis heart rate was in the high 120s while he was propped up in bed.

His GI appt is Thursday morning, I have a list of questions and concerns a mile long. Hopefully, we will decide on a way forward from here. His weight gain is so awesome. Just from the time he ordered his tux til 2 weeks later when it came in the employee at the tux place could tell he had gained weight.

We are three days out from when his next remicade should've been and so far no symptoms have started to return. That is so odd to me, how over the course of two years on remi he went the bulk of it with no symptoms(i know lack of growth is one but I mean stomach, mouth ulcers, blah blah blah). Two "flares" and both times we thought this is it, remicade is over. So strange that the doc implies that the disease has progressed to a long segment yet a day after his last remi all CD symptoms improved. This disease is so damn confusing.

He has his first swim therapy today and a second job interview at a restaurant he applied at. He is so excited about the possibility of a job. I''ve told him that just putting himself out there is awesome and if he gets it great if not there will be other interviews. I'm a bit concerned about overloading himself but all is a part of life, I guess.
 
Sounds like great news!

We experienced the same thing with Johnny, on 6mp for 2 years and still struggling to gain weight and high fecal cal. Then one day- his fecal cal was 47 and he started to gain weight. I don't know if the process of healing just takes a very long time or if his body decided to go into remission on its own. We hadn't done anything new, things just started working.

Keeping my fingers crossed that he gets the job!!
 
Thanks for the update Clash! :)

Good to hear the heart monitor results came back normal BUT I hope you can get to the bottom of the tachycardia. :ghug:

It is so brilliant to hear that C is continuing to gain weight! :dusty:

About the healing: I wonder if sometimes it is like the chronic wounds I deal with…

You have breakdown.
You stabilise the wound and for sometime it doesn’t get better but it doesn’t get worse.
You may or may not change treatment a number of times with no obvious response but again it doesn’t any worse.
Then for no rhyme or reason the wound suddenly goes through a phase of rapid repair.

…I guess it could be.
m1703.gif


Dusty. xxx
 
Great update, love to hear of weight gain.:)

Keep on with those feeds and he'll look great even if he feels crappy. I know people wonder how V can be so sick when she looks so healthy. Keeping his nutritional status stable will carry him through periods of disease activity with one less concern. :hug:
 
I've thought that too, Dusty. If I had to put C up to others with active disease with symptoms he hasn't had it that bad yet the disease progresses.

If I had to list my concerns, the common ones would not come into play, bms, stomach pain, mouth ulcers, inability to eat, nausea. My concerns would be:

messed up sleeping schedule(inability to fall asleep)
Episcleritis has shown up right before infusion more times than a flare of bowel issues
Lack of growth before EN
Lack of endurance energy during activities
And of course progression of area from February 2013 MRE to March 2014 CT scan
Last but not least area being deemed a stricture.

The GI keeps saying C's disease is worse than what appears in blood work and symptoms exhibit. But finding a way forward from a place where symptoms aren't constant seems to be a difficult one. Doc says if things go downhill then surgery would be next step but to me he is using(has used) appearance, symptoms and blood work as markers when he has clearly stated they aren't great markers. I think doctors find it hard to meld obvious progression of disease with what they see before them which puts C in this strange holding pattern most of the time. Just frustrated guys, sorry.
 
Well C's GI appt is tomorrow and all is still going well. His weight looks good, tonight he probably ate 1500 calories ovee what his intake should be. Along with formula feed he had tacos for lunch and then steak, sweet potato, soup and cheese cake for dessert! This is not his usual routine at all but as we were in the city and went out to eat he really wanted to eat at a favorite restaurant.

So far this stretch no CD symptoms and since switching to MTX injections from pills he has had no back pain! Yay!

He did get the job he interviewed for I'm just hoping, hoping, hoping it doesn't over tax his system and have him backslide. He was so thrilled to get the job and is chomping at the bit to start. He told them about his CD and spondylitis and the boss was really great about it. The boss said he better not find out C was missing pt or doc appts for work. He told C he was really impressed with his maturity and the way he presented himself. He was the youngest at the interviews and the only one called back 2nd interviews and hired at this round so over 30+ kids! So fingers crossed it is something he can handle.
 
I am really proud of him. But the best part was seeing the pride and excitement on his face when he got home to tell me...priceless. He had been saying he didn't have a chance because he was young and it was a college town so college kids would get it over him. You all should've heard some of the interview answers he gave...the boy is a salesman!
 
Wow, lots of congratulations for C!!! So great for you too... so happy and proud of your baby! We just live for these moments, eh?!!! :D
 
Update- GI appt

GI appt went well. C looks good and feels good. GI was pleased with his weight. He said C case was complicatated. He thinks we are most likely dealing with scar tissue since his FC level was low and it had been a good indicator in the past.

We are going to continue with the ng tube and mtx injections. He does feel C is going to need to do surgery but feels it would be better to do on our terms and not in an emergency situation. He thinks the ng tube is providing the weight he will need for surgery. He says the MTX maybe helping too but said there was no way to really know until we fully eliminated feeds. C wasn't put on EN for a flare but to provide nutrition due to obvious malabsorption. The GI said, originally all studies dealt with EEN but now CHOP and other studies had shown almost equal to equal efficacy with 90/10% feeds.

When we first visited the nutritionist she said they would write C up as 90/10 but anything C got in food beyond 10% would be fine because weight gain was the goal. The hospital said the same, anything over what formula would be providing would just be gravy. GI at this appt said since it is obvious C is getting more than 10% food(last night supper was ribeye, baked sweet potato with brown sugar and butter, loaded potato soup and cheesecake for dessert!) that technically the EN wouldn't/shouldn't be treatment but just nutritional supplement but that as good as he was feeling maybe it was or maybe mtx was sharing the load.

So labs done and fc to be in place when needed. Keep gaining, taking MTX injections and will follow up after 4 more weeks. If symptoms arise call right away. He doesn't want to overload C with tests and appts but will be scheduling an MRE and possibly a scope. Heart rate was 77 in his office and he said looking at all the numbers and levels it was not related to any type of anemia, possibly deconditioning and improvement may be seen with PT.
 
Glad apptmt went well. Hope the need for surgery can be avoided or, at the very least, postponed for a long time!

And, hopefully, you do see the HR issue pass with his continued PT. I know doctor told you not anemia related but just for reference (since the topic came up...), I posted a pretty decent article on Iron and the different testing on the Kids' research thread. I need to read it a second (possibly third time) to really get it straight in my head but, it was relatively 'easy' to understand. :)
 
Thanks Tesscorm! I 'll read through the link. Hr went through several scenarios involving iron studies and then vitamin b and anemia of chronic disease and it seems two more he said C didn't fall near the parameters for any of them. He also discussed ferritin and how it can be a marker for inflammation and how that can skew results of something else but I don't remember all the details so that link will definitely help me get it all straight in my head.
 
Clash,
Glad to hear the appt went so well. That is awesome news! May it only continue! Our follow up is in four weeks too so I will be hoping both our kids continue to do well!
 
That is so brilliant about the job Clash!
ban-woohoo.gif
Well done C!

It is also wonderful to hear that the appointment has gone well, so happy for you and your boy. :hug:

Couldn’t agree more with the sentiment that is far better to go into surgery on your own terms. Makes for a much better outcome and recovery. :)

:mademyday:

Dusty. xxx
 
That's a great update. Hope things keep going well on the EN and Metho.
Congrats on him getting the job - a big boost for his confidence! Hope he enjoys it.
 
Update:

Today is C's third day on the job, he is loving it so far. I can tell he is worn down but this is literally more than he has done in a year or more. We are still doing EN, well except for this morning when I told C I would refill the bag and ended up trying to pour the formula into a bag that was closed! Ughh.. instead of waking him up to disconnect so I could change the bag I just cleaned up the mess and went back to bed. So when he got up he got all but one of the cans in that he had missed before going to work.

He hasn't complained about his heart rate, I've ckecked it a couple of times and it has been normal so not sure what that was all about. We are supposed to be scheduling with an ped. EP cardiologist but C is wanting it to coincide with next GI appt so we don't have to make the two hour drive twice.

PT is going well, mainly because the C thinks the PT is hot so he volunteers for longer swimming...ha teenage boys.

I'm hoping that the rigors of the new job don't pull him down but for now he is happy and is really enjoying it so we will just have to see how it goes.

His English proxy contacted me last week and C is tied with another student for the highest average in the class. I worry that he is gonna let school slip with the new job but so far so good.

Hope everyone is doing well!
 
Last edited:
Thanks for the brilliant update Clash! :dusty::dusty::dusty:

I am so happy for C that all is going well and long may it continue! Happy for you too mum. :ghug: Onwards and Upwards!

:mademyday:

Dusty. xxx
 

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