Appointment Update

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Okay....I emailed the GI. I told A I may check her out of school for blood work and she had a fit. She suddenly felt better, and I know she just doesn't want to miss the fun end of school year activities. Poor thing. I also emailed her teacher and asked her to keep an eye on her today. Teacher said she was going to email me because A had been quiet lately and didn't seem well. Also, another student reported that A had been screaming in the bathroom. So I emailed the GI a quick update and he can decide what, if anything, needs to be done. Hope I'm not jumping the gun.....
 
After all you've been through, don't think you could possibly be jumping the gun!

I hope things can be resolved without much more delay! :ghug:
 
^^^^ Agree with Tess 100%…you aren’t jumping the gun! :ghug:

Good luck mum, I hope all is sorted ASAP and A soon feels much better, bless her. :heart:

Dusty. xxx
 
No word back from the GI....hopefully tomorrow.

A is essentially the same. Her activity level has declined substantially and we've had to cancel some of our weekend plans. We are considering modified school days for the upcoming week. She asked her teacher if she could come home early on Friday and that NEVER happens! Her BMs are urgent, bloody, and painful. We had quite the disaster at a friend's birthday party yesterday evening, but as A says, "Things could always be worse." Her temperature seems to range between 99.5-100.5, which is elevated for her (she's typically between 97.8-98.8).

And if my FIL tells me one more time that he can't help but wonder if A's health issues stem from her nervous nature (I wouldn't even consider her to be an anxious kid!)....you may be hearing about me on the news......
 
I hope you hear from the GI soon DanceMom. :ghug:

Oh my, I hope A is okay with things, bless her. :heart:

Can’t family just be the most wonderful creatures at times…Not! :yfrown:

In my thoughts,

Dusty. xxx
 
A is so tough, she always amazes me!
Hope you get some answers SOON:ghug:!
 
I'm so sorry A has been suffering so. Maybe the discharge came from the rash? Broken/burned skin can ooze yellow serum... Just a thought anyway. I hope she is doing better now...
 
No major changes with A. Her bottom looks normal (not red) and she says it only hurts a little (probably that stupid fissure). She's been hanging tough and staying at school all day and then dancing all evening. Unfortunately she seems to have lost 2 pounds but I'm hopeful that she'll regain it soon.

GI emailed me back and wanted labs done today. Something to compare to the labs she had when coming off the mtx 6 weeks ago. She doesn't read well in labs so I expect them to be normal. Also ordered fecal calp and alpha-1 antitrypsin which will give a better picture of what is going on.
 
Most of the labs are back. CRP looks great, as always. Globulin is low again - 1.8 (2.0-3.8). WBCs are the lowest they've ever been - 3.7 (4.5-13.5). They're usually in the 3.8-4.2 range. She's not on any immunosupressant medication (and hasn't been for 6 weeks), so any ideas why the WBC is so low?

Going to collect the stool samples tonight. That's always fun....lol.
 
Grace's WBC has always been low even before humira and mtx.
Hers is around 3.2.
What her lymphocytes at?

No doctor has seemed concerned other than to say she will have a hard time fighting infection.
 
Lymphocytes and Neutrophils are both 1676 (low average). Her stool test in February showed a moderate amount of WBC. So it seems she is pooping them out? Has Grace had her stool tested for WBC?
 
Yes she always has some in the stool but not enough that docs get worried.
Plus Grace has seen a pediatric Urologist before who said,
unless she's having multiple UTI's that having a low'ish number of WBC's in the stool is not a concern.

Her labs (blood) say her Lymphocytes are 1.0..................... Ref 2.0-8.0
 
Perhaps Grace's doctors are not concerned because she already has a diagnosis. Things are still up in the air for A. On medication - globulin is usually normal and WBCs are around 4.0. Off medication - globulin is always low and WBCs drop.

She'll have another CBC next week when we have the immune labs done. We will probably get stool and immune results around the same time. Hopefully we can get some answers!!
 
Dusty - They believe it is a sign of a deficient immune system. That, coupled with the consistently low IgG is what prompted further immune testing. We are scheduled to get those labs done next week. If it turns out not to be an immune deficiency then I'm not sure what is causing the low WBCs. For now, the Rheumo just puts "chronic leukopenia" on all of her paperwork.
 
Out of all the causes that would be what I would think too, or with the weight loss is there some sort of malabsorption going on??

Dusty. xxx
 
Just collected the last of the stool samples! Of course the lab is closed for the weekend so we now have a freezer full of poo! Lol This was some of the nastiest stuff I've ever bottled up. It had a very distinct smell, I just couldn't quite place it. And the consistency was that of melting ice cream. I thought I'd read someone here say that solid stool was better for a fecal calp but we are long past that point. Hopefully we still get accurate results!

A looks run down. You can see it in her face and lack of energy. We have a busy weekend, but things should slow down next week and she can rest. Okay, off to PT!
 
All stool samples have been turned in! So far we know that she doesn't have c-diff (didn't think she did) but we're still waiting on the others to come in. Overall, A seems to be doing better and I think the freedom of our summer schedule has been helpful. She's getting more sleep and isn't exposed to all of those school germs.

Speaking of school, I received an email today stating that A was being placed on attendance probation next school year. All 21 of her absences and 5 tardies were excused with a physician or lab note, so obviously I had quite a bit to say in my email to the AP. I'm sure I'll get a generic half-hearted response.

We are getting her immunity labs done tomorrow and I have mixed emotions that I'm sure you can relate to. While I'd love for these labs to lead to a diagnosis of some sort so we can stop the endless testing and begin treatment, it feels so wrong to *wish* for anything but perfect labs. Just trying to take things one day at a time and appreciate that for today she feels well!
 
Today was not a great day. We went to the Children's Hospital (not our hospital) to have the immune labs done. It took over an hour of back-and-forth with the insurance company before they would agree to draw the blood. The phlebotomist had trouble getting blood and this has been an issue lately. She said she could feel scar tissue and recommended using the other arm from now on. I was so paranoid that they wouldn't organize the labs properly and they wouldn't make it to Cincinnati Children's on time. They reassured me that things were fine and sent us on our way. Because we were near the coast we made a quick beach trip, had lunch, then headed home. As we pulled into our neighborhood the lab called and said we needed to come back - they forgot to draw a vial of blood. Ugh! So we made the hour and 1/2 trip back in a hurry because FedEx was scheduled to come in 2 hours. We had a different phlebotomist this time and used the opposite arm. She also had trouble and said A had scar tissue. What the heck?!? Are her veins really shot?? So this time I refused to leave until the lab manager confirmed that they had everything they needed and I watched them package it up myself. I'm sure they thought I was neurotic. So now we wait....and hope and pray the vials make it across the country in time. I think I've developed control issues, lol.

But seriously, could A really have scar tissue? She's been a difficult stick for the last few months and is sore for days after a draw. She now gets a pretty horrific bruise and swelling in the area where it was drawn. She used to always be an easy stick, sometimes had a mild bruise, and only occasionally was sore for a few hours afterward. Maybe we've just had some crappy phlebotomists lately??
 
M has scar tissue too and sometimes it takes a couple sticks to get blood. M has figured out which veins work best and will usually point the phlebotomist to the one that usually works -- not sure what we'll do when she has scar tissue there! The nurses who do her Remicade infusion said scar tissue is quite normal in these kids -- who knows how many sticks they have over the years!

If it's painful for A now, could you use numbing cream or something?

Hope you get some good answers soon.
 
Also make sure she's well hydrated days she needs needles... I'm sure I've read that being well hydrated 'plumps up' the veins and makes it easier to stick. Maybe someone who knows for sure can confirm??
 
We start loading up on fluids a few days before a scheduled blood draw. She also wears long sleeves until they are ready to draw because we were told that would make her an easier stick. We've even used heat packs before! None of that seems to help though. We've used Emla cream before but it doesn't eliminate the soreness that persists after the draw (probably because it bruises and swells anyway). She sits like a champ while they are digging around, I just worry that we are damaging her veins and she's only 9!
 
Hydration does help veins Tesscorm, as does warmth but for some people it just doesn’t seem to be enough. :( I am one of those people, I just have next to no superficial veins.

The phlebotomist makes a world of difference, the one I had yesterday was fab. The more they dig around the sorer it will be and the more likely they blow a vein and you end up with swelling and bruising.

Matt has had copious amounts of blood draws but as far as I know they don’t have any issues drawing blood from him (mind you some of the phlebotomist’s are hopeless and this is with a kid that has veins popping out all over the place!) and scar tissue has never been mentioned, he normally comes home with only one bandaid. Unfortunately though, it is not uncommon for a vein to become scarred and collapse if it is used repeatedly and when veins are difficult to locate I wouldn’t be surprised if they are using the same one over and over again. :ghug:

What an absolute balls up with the tests! Little wonder you, me and no doubt the everyone else here is a control freak!
You know what, I am so much of a control freak that if I am in town, about 30 minutes away, and get take away I check the bags before I leave! In my defence, you would be amazed how many times the order is missing something! :lol:

I hope the tests all arrive at their destination mum and in the right condition!

Dusty. xxx
 
Dance mom,
I hope you guys get the results quickly and finally have some answers. I know how frustrating the being in limbo is.
 
Stool tests were all normal. I will never understand this. She's been feeling good (other than joint pain) for the last week or so, so I guess we'll just be thankful for that. We still have some immune labs to finish up the beginning of July. Other than that I think we'll just hang out and pretend things are normal.
 
DanceMom. I really hope things get better soon.
They have hard time getting blood from my daughter so they do get it from her hand instead of her arm. It is more painful, I think, but she says it is the same. They always use a baby needle.
 
Thought I'd give a little update.....

A had her dance rehearsals/recitals this weekend. That means long days, staying up late, and a crowded backstage area with germs (2 pukers and 1 with explosive diarrhea...OMG...). A has been very tired (understandably) and her joints have flared back up. The diarrhea is also making a comeback. She has 2 days to rest before heading to Nationals. I'm hoping things settle down in that time.

On a positive note, she was awarded a full tuition scholarship for next season! The studio owner recognized her on stage for her hard work and dedication despite her illness, and said she was an inspiration and role model for the entire team. Proud Mommy moment!!

Hoping to get the immune lab results this week. I plan on emailing the Rheumo nurse tomorrow. They have a tendency to sit on results and not share.
 
That's great news and a help for sure. Congrats!!


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
 
Our Rheumo nurse is a joke. After my email on Monday I got no response (even though I could see that she received it). I wrote back this morning requesting her lab results only to be told they weren't in. When I wrote back saying that the lab paperwork stated they would be back in 9-10 days the results conveniently came in the mail 30 minutes later. Whatever. All are normal (according to her....) and the B-cell panel is still pending. She's supposed to be mailing me orders for the pneumococcal lab which we'll have done next week.

A seems to be feeling okay other than joint pain and the weakness/burning in her arms and legs. Her first National competition didn't go so well and she took the loss pretty hard. We're leaving for her second National competition tomorrow and hopefully it goes better!
 
What happens next if the lab results are normal?:hug:
For joint pain, is something like voltaren gel an option? M uses it on her joints when her IBD is flaring instead of taking NSAIDs.

Sending hugs and good luck! Hope you get some answers soon!
 
The immunological labs she had done were rather complicated and I'm not sure the Rheumo expected them to be abnormal. From what I could gather at the appointment, he wanted these done in case her pneumococcal turned out normal then maybe we'd have something else to go on for the immune deficiency route. At this point it is looking like she could possibly have CVID, but if that's not the case maybe it is a more rare immune deficiency that could be detected by these labs. I got the bill today and it is nearly $5000 for 4 immune labs and a CBC (should be covered by insurance).

For joint pain we ice the joint, use a cream like Icy Hot, wrap it for activity, and Tramadol if it becomes unbearable. Our PT said she did not feel that therapy was helping A and felt that her pain wouldn't decrease until the underlying problem was detected and treated. I'll discuss that with the Rheumo at our next appointment. I'm not sure if the PT and Rheumo communicate because we used a local hospital for therapy. At this point her joints are our biggest issue.
 
* In re-reading the Rheumo nurse's email I got a huge kick out of what it said. She let me know that A's "testes" were normal and not to worry! Glad to know that my daughter's "testes" are okay! lol*
 
So maybe that's been the problem all along, the testes you were unaware that were ok. There's always one that makes it a little more "fun".


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
 
Finally got the Pneumococcal lab done today. Had to battle with the Rheumo nurse all morning to get the order since she has to be told 3 times before she does something. A was an easy stick and we're both very grateful for that!

Unfortunately she's been battling explosive diarrhea, stomach pain, and now a low-grade fever. She just seems tired and run-down. She's also complaining that her tongue and roof of her mouth hurt but they appear normal.

Quick question....do you notice that your kids require more sleep than their peers? After spending the last week with the other dance families at Nationals I realize that A's friends don't sleep as much as she does. She will easily sleep 12+ hours if I don't wake her and still be tired during the day. I try to make sure she routinely gets 9-10 hours of sleep but her friends seem to function okay on 7-8. My other daughter (she's 7) is our early-bird and she usually sleeps about 8-9. Maybe I'm over-analyzing this, and I realize all kids are different, I just feel like she sleeps an awful lot and still seems tired.
 
Glad you got the test done!!

Fatigue is a common symptom...One of S's early symptoms was coming home after school and sleeping. In hindsight, it's so obvious something was wrong but, at the time, was easy to explain away (teen boy, new demanding phys.ed. program, hockey play-offs, etc.)

It's also a sign of anemia (with or without crohns) - S was anemic by the time he was diagnosed (I was also anemic a while back and, also, found myself taking 'unusual' naps that I somehow justified??).

But, with malabsorption issues, I imagine there are likely other deficiencies that could also cause fatigue.

Having said that, my kids are night and day when it comes to sleep habits, even now that S's crohns seems to be in remission. So... cud just be A's habits as well. Try to think back to before she was showing any signs of sickness - do you remember if she tended to sleep more than others then?
:ghug:
 
My daughter definitely needs more sleep - around 10 hours and most of her friends can get away with 7-8 (though I think 9 hours are recommended for teens). Given how awful she feels most of the time, I kind of expect her to need more sleep -- I imagine she gets exhausted just from pain/diarrhea etc.

Just for comparison, her older sister whose arthritis is well controlled, is like a completely normal college student -- up at all hours of the night and probably gets 6 hours of sleep during the semester.

Really sorry to hear A isn't doing well. Hoping you guys will get some answers SOON!
 
Grace sleeps a lot during flares. I know she's feeling better when she doesn't need to nap.
How long till you get her lab results back?
 
In the past this lab had taken anywhere from 3-7 days to come back. Her Rheumo appointment is next Thursday so hopefully we'll have the results by then. If she isn't protected for at least 70% of the serotypes that should be enough for the Rheumo to make a diagnosis (her IgG and WBC are also consistently low). If she is protected for at least 70% of the serotypes then we may move forward with the CTA to test for vasculitis. With the low fecal calp I think Crohn's is off the table for now.
 
Glad they got the blood okay. Tiredness is a big problem for us. Although my son doesn't sleep more but is a lot more tired than his friends and can't do as much activity
 
Our Rheumo appointment is tomorrow and I'm very anxious about it. My biggest concern is that after all this we still may not have answers.

A seems to be battling a cold but is otherwise okay. She still complains about her back and she sleeps an awful lot. I think the Elavil helps quite a bit because her stomach aches are minor and short-lived. She still has a visible fissure but it doesn't bother her every day. She's managing, but of course I'd like to see her full of energy and without any pain like she was when she was on Prednisone (my frenemy).

Now to keep my mind busy until our appointment.....lol
 
Sending so much good luck! Hope you guys get some answers and treatment for A:hug:
 

Similar threads

C
Looking for advice
Replies
12
Views
3K
mullyjl
mullyjl
C
Your thoughts, please. 10 yr old.
Replies
14
Views
1K
Crohns dad
C
A
What would you do?
Replies
22
Views
2K
Delta_hippo
D
Pilgrim
Ehlers-Danlos Syndrome
Replies
1
Views
1K
my little penguin
my little penguin
P
Humira Fail What Next..
Replies
23
Views
5K
my little penguin
my little penguin

Latest posts

Back
Top