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Glad the weekend went well and you're not seeing any side effects!! Woohoo!!! :banana:

Hoping all goes well on Tuesday!!! :hug:
 
Thanks so much for the fab update Clash! Fingers, toes and everything else crossed it keeps going that way!...:goodluck:

Dusty. xxx
 
Update:

C had his infusion 2 days ago. It seemed to all go well. I was concerned about his weight. On 10/18 he was 115.8 lbs and 10/30 he had dropped to 113.4(actually more as this time he was wearing jeans and every time before I've made him wear basketball shorts). He has lost weight consistently since august. He was on pred from Feb. until finishing the taper the first of June and gained a significant amount of weight. So I'm going to speak with the GI about it at our next appt, which is December 10th. If there is reason before then I will bring it up with the GI nurse.

C told the Remicade nurse he is feeling good. It is true he does seem to feel pretty good but some things still seem a little off. Maybe it is just me and that "waiting for the other shoe to drop" syndrome.
 
Glad things seem to be going relatively well! :) Pay no mind to that 'other shoe' - it's firmly entrenched and ISN'T going to drop! :D

It's too bad he won't go along with supplemental EN - it really would help him gain some weight.. but, he's a teenage boy - there's only so much a mother can do! :facepalm:

:ghug:
 
Thanks for the update Clash. :)

It certainly is good to hear that he is feeling well and the infusions are going fab. YAY!

BUT...

I hear you on the other shoe! I have one that constantly dangles over my head. I feel guilty that I can't shake the 'what ifs' but it is what it is and so spend most of my time like a tightly wound spring, ready to jump into action at the first sign of trouble!...Yo Rinny! (I hope someone gets the reference! :lol:)

Thinking of you guys. :heart:

Dusty. xxx
 
Hahaha...Pals through thick and thin! Before my time but I've seen all the reruns!

But you are right it is hard not to do the "what if" game. I feel like I am getting pretty good at it though....I can do "what if" into the wee hours of the morning...blech!
 
:lol: I wonder if the 'what ifs' are rosier when seen through Crohnsincts merlot coloured glasses!?!? :biggrin: (I'll let you know how it works out for me tonight! :lol:)
 
Tesscorm, yes let me know how that works out...with my luck it wil just make the "what ifs" come from further out in left field, before you know it I'll fit right in with a House M.D. episode!


Dusty- Yep what a difference pm and am make!!
 
You know... The thoughts did have a southern twang! Whatever did dexky get off to? I've often wondered abt him. (What did u do to him?!? :eek:)

:)
 
Tesscorm said:
[

:lol: Aww, poor Dusty... You just plop yourself down in your rocking chair, pick up those knitting needles and careful you don't start rocking too hard after your vino!! :hallo3:
Click to expand...


Dusty and Tesscorm,

You guys aren't old!:eek:

I know all about rocking chairs, I've seen them in museums!:thumleft:

We younger folks have recliners that rock. You should try them!
 
Ha, see we old folk are still sharp of mind! :lol: Now where did I put the car keys???

What did I do to Dexky??? I put the hard word on him...:wink: and he...:eek:utahere:
 
So yesterday we did a labwork up. I meant to post the labs the GI had ordered but it slipped my mind. Just going from memory, CRP, ESR, CBC comp. with platelet diff. those I absolutely remember then something along the lines of comp. metabollic panel(?) I may have worded that incorrectly.

Anyway, the lab tech said we should have the results today and I am so impatient!!! This will be the first 6 week stint that incl MTX with Remicade. C has been doing really great with no usual symptoms of a flare popping up late in the time between infusions(his next infusion is next Monday)

What I have noticed:
-Still dealing with joint pain in the back(says he feels like an accordian smushed together and his back needs to pop but won't)

-Every so often the inside corner of his eye gets really red. I've noticed off and on for about a month. At first I figured allergies but then saw the EIM poster Crabby posted on a thread and it looks like the pic relating to Eye EIMS. C says it doesn't hurt or itch. It only lasts a day then it is gone so not sure if it is CD related.

I'm going to discuss both of these issues with Ped. GI and get a referral to eye and rhuemy. I don't need a referral to get these appts. but I would perfer to use someone that deals with CD patients and I am assuming the Ped GI might have certain ones he refers patients too.

I have brought up the rhuemy before but always get sidetracked before the end of the appt. and never get back around to referral. Ughhh...why am I so scatter-brained!

Anyway, trying to be patient on getting these results but it is not my strong suit. The CRP and ESR has never really been indicative of C's disease activity but we can usually determine if things are going down hill if he is trending downward toward anemia.

Trying really hard to will the office to call with the results quickly!!!
 
Hey Clash! I hope those results are awesome. Ryan has done super well with methotrexate. It seems to be our saving grace right now.

On the eye thing...does it show up the day or so after the injection?

Make a list of questions! I get scatterbrained too. Make a copy of the list and hand it to the Dr. That way, maybe he will bring next question up if you get sidetracked! You can write answers on your copy!
 
Oh Clash! You need to take a lesson in patience from me:ylol2:

I am willing those results right a long side you.
 
Sending lots and lots of wishes that all comes back with good results and that you get them NOW! :D

Stephen describes his back pain/discomfort exactly the same! ... that his back needs to pop! OMG, he's even done it! Sounds AWFUL! I keep telling him it can't possibly be good but some doctor, forget which one, said if he doesn't do it too often, it's okay (I still don't believe that! :eek:) In any case, Stephen swears yoga and stretching help! He went to yoga for a little while 'regularly' but now just goes, maybe once a month, and stretches at home in between. But, he does go to yoga on his own accord whenever his back or shoulder hurt him so it must help!


jmckinley said:
Make a copy of the list and hand it to the Dr.
Click to expand...
Great idea!!!
 
Jmckinley- Chase doesn't take MTX injections but instead 10 pills every Friday. That is an awesome idea, to make the copy for the GI.

CIC- :rof: on you and patience and :hug: on helping me will the results!

Jmrogers- hope our latest results are as good as Jacks when we go on Monday!! How is the rehearsals for the play coming along?

Tesscorm- Chase pops his back at times too(more than I care to hear because it sounds blech!!) but it pops several times like pop pop pop pop, ewww. Interestingly enough, he has asked about yoga recently as he did some game program on Wii that the yoga stretching really helped. So we will now look into that!
 
:lol: I know, doesn't it sound horrible?!?!? OMG, and my daughter does it too!!! :eek:

Just FYI, Stephen does hot yoga. I'm sure any type would help though, we just happen to have a hot yoga facility around the corner... :worthy: (yoga smiley)
 
HOT YOGA Tesscorm????????:eek2::eek2::eek2:

What in Sam Hill are y'all doin over yonder.

What is that? Ya do it in a bath tup?:rof:

No wonder the world skewed up!:eek:
 
Clash I hope you boy gets back some good results.

When I was a teenager I would lie in bed and stretch my back and I to would here the pop pop pop. I started exercising and stretching and it did help.
 
HOT ;) - we all wear skimpy, sexy outfits! :lol: It's no wonder teenage boys are flocking to yoga! :lol:

Seriously, it's yoga done in a very, very hot room! I suppose the heat helps relax the muscles and allows you to stretch further??? I love heat but, these classes are 75-90 minutes and I was dying in there! Stephen literally comes out of there completely drenched! :eek:
 
Tesscorm said:
HOT ;) - we all wear skimpy, sexy outfits! :lol: It's no wonder teenage boys are flocking to yoga! :lol:

Seriously, it's yoga done in a very, very hot room! I suppose the heat helps relax the muscles and allows you to stretch further??? I love heat but, these classes are 75-90 minutes and I was dying in there! Stephen literally comes out of there completely drenched! :eek:
Click to expand...


Well I'll be..... I'm telling my husband while he's working in the hot barn he's really doing hot yoga! But I AM NOT wearing a skimpy outfit, no matter how he begs.:rof:


Thanks:hug:
 
Gab has that same back pain ~ and pops her back too !
Ive been cracking my back for years so I really can't say anything about it negatively LOL.

The Ped GI told me today that if Gab's docs decided to add MTX to her Cimzia that it is awesome for joint pain. Has it helped with that ?
I'm going to start researching about it because she agrees with me that its pointless
to add 6mp or Imuran since 6mp has already failed her terribly in the past. I will research the Imuran too ~ she did say they are basically the same but that Imuran breaks down in the body to "make it's own medicine"? At least I think that's how she put it ? Anyhow, I'm going to read about that a little but really study up on the MTX.

Good luck on the results ! Hope you hear really soon !!
I have no patience left to send you ~ even virtually ~ or I would LOL.

xoxox
 
Crohn's Mom, I would say it has worsened since MTX but I think it just comes and goes. C, being confident in the fact that he knows everything:ycool:, insists it is not CD related and will go out of his way to associate it with something else:eek:. But he also refuses to subscribe to the idea of EIM's altogether(I think it is a combo of denial that CD could affect even more and the fact that I am the one telling him there are EIM's associated with CD:ybatty:)

I have to say that C has not experienced bowel symptoms or flare issues(night fevers, ulcers, joint pain in the knees, fatigue) since starting the MTX. I was really worried about the side effects, nausea, flu like symptoms, fatigue etc. that many have mentioned with the MTX pills but he hasn't experienced anything. He is taking 10 pills(25mg) every Friday(GI said to take on Fridays so he would have the weekend to get over side effects) and it doesn't slow him down one bit(touch wood or kill a crow or cow or what ever it is CIC does to appease the CD Devils:tongue:)

Still no word I just left a message with the med. asst for the GP. The GI gave me the order to present to GP so we wouldn't have to drive to ATL for lab work.

Oh and my freakin' tree lights have a bulb out and it is one of those trees with the lights already attached and I can't for the life of me get to the bottom of it!:ybatty::ybatty::ybatty:
 
Hope you hear soon! I am having to attempt patience myself these days but it's not really working - just feel myself getting more demented! :eek2:
Hot yoga??? Now there's an interesting concept - was hoping the yoga teacher was just really hot :rof:
 
Okay, so I just went a picked up the labwork. The GP didn't order the labwork, his lab only carried it out and faxed it to GI today. We have an appointment with GI on Monday, at which time we should go over labwork. Since the GP didn't order the lab work he didn't have any notes on it and the med. asst couldn't tell me what it all meant. I put a message in to the GI nurse ostensibly to ensure she received but then was going to ask about the results. It was late in the day though and they are closed on Friday, so not sure if I will get a response since our appointment is Monday.

Okay, so he got a CMP, CBC with platet diff, CRP and it stated for him to get ESR but all I see is SED, I guess they are the same.

He had some low flags and high flags:

CMP panel



Chloride 98 L 100-111 MMOL/L
Glucose 134 H 70-99 mg/dL
ALK Phosphatase 174 H 50/136 UL
AST/SGOT 13 L 14-40 U/L
CRP .40 H 0.0-3.2 mg/dL


Under his CBC panel

RDW 16.4 H 12.2-16.1%

also in normal ranges:
WBC 6.6 4.3-10.3 K/UL
RBC 5.02 4.31-5.71 M/UL
HGB 14.6 13.5-17.1 GM/DL
ALT/SGPT 21 12-78 U/L

oh and SED was 5 0-15 MM/HR but SED has always been normal

Edit: also wanted to add CRP was elevated but only slightly so it was .40 normal range 0.0-.32 mg/dL
 
Last edited:
So I was a little worried over the H and L flags on the labwork. The GI nurse just called and said they had the lab work and the GI would go over it in detail on Monday at the appointment but she wanted me to know he was pleased over all. I don't have the previous bloodtest for right after we started the MTX but I guess in relation to it and the others C has had in the last several months these are results to be pleased over, maybe?

Sorry but when I see the H and L flags I get a little freaky but she assured me he would go over them in detail on Monday and since C is feeling better than he has felt in months to the point of driving me a little batty then I get to climb in my bubble and drink some wine!!!
 
His labs look pretty good overall. His glucose is a little high did they make him do the labs fasting or after eating? You can sometimes get a random high on that. I wouldn't be overly concerned but do have it repeated when he is fasting. The rest all look pretty good. Did he have a fecal calprotectin?
 
Thanks for the info Kimmidwife! It's funny they didn't ask for him to fast but I debated it with him that morning but he won out and had a chicken biscuit and soda.:eek2: I did look back through the labs I do have for him and I only see one other time out of five that it was high and that was 144 the rest of the time it was between 79-85.

He had a FC test two months ago, the level was 1200, it was the deciding factor of moving up the doses and eventually adding the MTX. He didn't have one this go round but I think he may have one the next six weeks, I'm going to ask on Monday.
 
Yeah, I think we'll skip the breakfast on the way to the lab and see if that changes things.:ybatty::ybatty:
 
Yes it is important especially as I was told kids with crohns are at a higher risk for diabetes. When he had the 144 was he fasting or was it also after eating? Also how long a time was there between eating and when the lab work was done if you remember?
 
This time he ate on the way to the doctor's lab. The one with the level of 144 was taken in the first of May at 2:40pm and he has never fasted so he had at least eaten breakfast, lunch and then possibly even a snack on the way to the appt. Could the fact that he ate on the way this time and all day the last have an effect?
 
Also, this time he ate on the way to the doc(finished in the p-lot), and then we waited to be called for about 20 to 25 mins. I posted the other eating schedule in the above post. Thanks Kimmidwife!
 
That is a short amount of time between eating and the test, that is good it probably is just elevated from his food intake then. I would have been more concerned if it was over 1-2 hours between eating and blood drawing. It still cant hurt to repeat a fasting test but it will probably come back normal.
 
I'm going to make sure we fast next time so should I just go to the lab first thing in the morning before he eats? Or how long after a meal? Thinking about it now, the May test he would've been in school and I definitely would've bought him a snack and probably a drink(most likely powerade) when I picked him up and he would've eaten it on the way to the doc. I'm going to look at the other test dates and times and see what the most likely scenario with them was.
 
Thanks, Kimmidwife. Looking up some of the other values, a couple being off(high with some low with the others) it says that can be related with B12 or folic acid deficiency and another one due to vitamin D deficiency. Of course, there are other possible reasons but he started vitamin D a little while back because it was low normal and started folic acid when he started MTX. I'm thinking about asking to have those tested as well as B12 next go round.
 
It cant hurt to have them rechecked. How long as he been on the supplements? You want him on it for at least 3 months before having it rechecked.
 
It has been almost 3 months for vitamin D, and 2 months for folic acid I would say. So by the time the next infusion after this one rolls around I'll ask for them to be pulled.(6 weeks from now and we will fast then for the gluclose too!) I love this forum and all the info and support everyone gives, thanks so much!
 
No problem! This is the first chance in a while I have had to sit and be on the computer with no interruptions. With five kids it is hard to get some quiet time sometimes!
 
Clash said:
He had some low flags and high flags:

CMP panel



Chloride 98 L 100-111 MMOL/L
Glucose 134 H 70-99 mg/dL
ALK Phosphatase 174 H 50/136 UL
AST/SGOT 13 L 14-40 U/L
CRP .40 H 0.0-3.2 mg/dL


Under his CBC panel

RDW 16.4 H 12.2-16.1%

also in normal ranges:
WBC 6.6 4.3-10.3 K/UL
RBC 5.02 4.31-5.71 M/UL
HGB 14.6 13.5-17.1 GM/DL
ALT/SGPT 21 12-78 U/L

oh and SED was 5 0-15 MM/HR but SED has always been normal

Edit: also wanted to add CRP was elevated but only slightly so it was .40 normal range 0.0-.32 mg/dL
Click to expand...

I agree about the highs and lows and glucose. :)

SED is the same ESR.

ALK Phosphatase 174 H...Likely you do not need to worry about this one. A high reading at C's age is a bonus, it is an indication that he is growing and/or going through puberty. :):)

Good luck for Monday!

Dusty. xxx
 
Thanks, Dusty just looking back through his other labwork I do have, which isn't all or even the most recent, the ALK was 111(normal 50-350 U/L) at time of dx(Feb), 89(normal 50-350 U/L) right before starting Remicade(May) and 154(normal 50-350 U/L) right before 4 dose of Remicade(Jul).

I did have another question though, with the previous result levels in the ALK phosphatase it listed the normal range from 50 to 350 U/L why such the descrepency between that normal range and the one listed on his labwork this time, 50-136 U/L?
 
Hey Clash,

Have you changed labs?

Perhaps the range they quoting are now is the normal adult range.

I have seen labs quote paediatric ranges in the higher ranges you had quoted previously. The ranges changed every three years, so 7-9, 13-15, that sort of thing with a cut off at 16 y/o. I imagine they do this to take growth spurts and puberty into consideration and therefore an abnormal result is not recorded.

Dusty. :)
 
Update: Just met with C's Ped. GI and went over the lab work. Doc was thrilled with his numbers and progress since adding MTX, he is considering moving C out to 7 weeks on Remi. C has had no symptoms since the add of MTX but the doc is a little concerned about his inability to hold his weight so he has ordered more blood work and we will go from there with everything. Since everyone in our fam is kinda scrawny he doesn't expect him to be a bruiser but just on the safe side he is checking some things out.

C is getting his remicade now.
 
:D :D Nice update!! :thumright: :thumright: Glad to hear re the symptoms, metho and remicade!!
 
That is fandamtastic!!!!!! Ugh! Moving out makes me nervous but he's the doc. Also, I think I have told you this before but weight gain was one of the last things that came around for O. It was a good amount on prednisone then very slow after that then after EEN it started coming back on. I am guessing cuz that is when she really turned the corner. Hoping that is what's up with C too!
 
:dance::dance::dance:

Love it.
the moving out part would have me on edge as well.....
Glad the numbers are good.
As far as weight.
One the papers research set ion- states ibd kids do not have a higher resting energy state but do need more calories than they can consume so they recommend supplementing - there was a chart
by age - I think C would fit in the 3 cans a day at this point. let me look.
Table 4
Suggested Amounts of Supplemental Nutrition by Age and Weight
Additional caloric needs
Age (yr) Weight (kg) (1) (1.05–140% above RDI) Amount Formula/day (2)
3–6 15–20 40–380 1.5 oz — 11⁄2 cans
7–10 20–35 50–500 1.5 oz — 2 cans
11–15 (Girls) 35–55 60–570 2 oz — 21⁄2 cans
11–15 (Boys) 35–55 65–645 2 oz — 21⁄2 cans
16–18 (Girls) 55–60 70–590 1/3 can — 21⁄2 cans
16–18 (Boys) 55–70 80–750 1/3 can — 3 cans
1. Weights based on 50th percentile for age and sex
2. Based on 240 kcal/oz of supplemental formula, 8 oz per serving
Supplemental Drinks—Nutritional Information based on 8 fl. oz serving size
Product Kcal/ml (g/L) Protein (g/L) Carbohydrate (g/L) Fat (g/L)
Boost 1.01 43 173 18
Boost Plus 1.52 59 200 58
Ensure 1.06 37.2 167 25
Ensure Plus 1.5 55 211 48
Kindercal* 1.06 30 135 44
Modulen 1 36 108 46
Nutren Jr* 1 30 127.5 42
Pediasure* 1 30 110 50
*Formulated for ages <10 years of age
Click to expand...

from:
http://www.practicalgastro.com/pdf/January06/FaubionArticle.pdf
 
Thanks for the responses guys!! So due to traffic during rush hour it took us an hour to go 15 miles on the interstate coming home!!! Ughhh such a long trip!!

MLP, thanks for the post, the GI suggested C start supplementing. I told him about our previous efforts and he said he could start with Carnation Instant Breakfast but try to get on Boost or Ensure, since his inflammation seems to have calmed, if inflammed he'd suggest one of the more easily digestable. He said it was okay to start with one a day but he would like him to have worked up to 3 a day in the next week and to continue until next appt.

He also changed his mind about the 7 weeks for now. He came over and spoke with Chase and the infusion nurse and she told us about it when we were scheduling the next infusion. He said he is going to go six weeks again this time and possibly next time depending on everything.

With the lab work he wanted, I think it was a couple of thyroid tests(?) just to be safe not sure exactly what else, I asked could we also check vitamin levels and he said that sounded like a plan so he was checking D, B12, Folate, Zinc and Magnesium. Results in one to two days on all labwork.
 
Haha 6 weeks? Glad he saw it our way!

Carnation Instant Breakfast...oh to be a teen boy who needs to gain weight!
 
Thanks for the fab update Clash! :):):) I am so happy for you both that all is going so wonderfully well!

Onwards and Upwards!
Dusty. xxx
 

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