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09-13-2011, 08:51 PM   #1
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Infinite Rollercoaster

Hi Forum Friends - I've been reading and keeping up with everyone but a terrible poster lately.

For those of you that "know" us, here's the latest.

* finally met our new neurologist since the relocation. LOVED her. She increased Claires Neurontin a bit and her feet are pain free for probably the first time ever. I was so used to the daily complaints that when she stopped I almost worried. Ha ha. She has ordered an MRI in October while things are clinically stable from a neurological perspective so we have a baseline.

* Not ecstatic with GI right now (sorry Dex). Had the followup kidney ultrasound which has revealed continued hydronephrosis and enlarged ureter. Had to remind him who ordered it (he did) and why (fortunately I remembered). He is supposed to get in touch with Nephrologist and let me
know if this is something for us to just continue to monitor or nothing to worry about. Chased him down the hall to get a prescription he forgot. And when I got home I realized he scheduled no labs for the next SIX months. Now those of you who know me know that I will get the lab orders. But good grief, you can't be on Methotrexate without monitoring the liver at least every three months when things are stable. I know that and I'm not the doc.....I'm just the Mom.

* Aother uphill on the roller coaster is we ran into her Rheumatologist in the cafeteria. He came to GI clinic to go ahead and see her to save us a visit. How thoughtful! Joints are good. That makes us all smile.

* This week has been the start downhill again I'm afraid..... Claire has been off the prednisone since late August. Monday morning brought plenty of bright red bleeding. This morning was a 1am wake up call with the dreaded middle of the night diarrhea. Tonight she had zero appetite. Sigh.....

I hope it's all a fluke and I'm overreacting to the roller coaster.
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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
09-14-2011, 05:15 AM   #2
Dexky
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Well J, I wouldn't like Dr. A either, if I ever needed him ASAP! In so many ways, we've been very fortunate. He's been our only GI so I have nothing to compare to. I'm so sorry to hear things are potentially going downhill for Claire. I know it's killing you Julie as sure as any disease you could have yourself.

Have you started looking for a replacement GI?
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EJ dx w/ Crohn's 12/09
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09-14-2011, 05:25 AM   #3
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Oh J...

Fab news that the neurologist has sorted the foot pain...YAY! Also fab news that Claire's joints are doing well! YAY!

So sorry to hear about the GI issues though.... I too hope that more than anything it is a one off and things soon settle. Do you think you will look for another GI?

Loads of love and hugs to you both,
Dusty. xxxxxxxx
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09-14-2011, 05:58 AM   #4
dannysmom
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Hi Julie. Thanks for the update. I've been reading about your daughter for a while now. Your rheumi sounds nice. Sorry about the blood and D!
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09-14-2011, 10:13 AM   #5
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Julie,

Yea!!! for the good news.
Boo!!! for the bad news.

Here's wishing the next reports to be all good.

Take care,
Vicky

Last edited by G's mom; 09-14-2011 at 11:42 AM.
09-14-2011, 11:37 AM   #6
mizgarnet
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Julie, sending hugs and prayers your way.

Wendy
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09-14-2011, 08:47 PM   #7
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Thanks everybody for the support. I'm still giving some thought to the MD situation. I don't want to do something rash if I'm overreacting.

J
09-14-2011, 09:56 PM   #8
Brian'sMom
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Julie,
Thanks for the update on Claire. I've been thinking of you both often.
GI docs can be frustrating...they all seem to depend on the mom's more than they should. Some, though, are better than others. I would think about checking out another if it continues. You need to feel assured that the doc is on top of things. (But I know that changing things up has its own stress factor)
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
09-15-2011, 07:37 PM   #9
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Hey J

I haven't been around much lately either, but I still think of you and Claire often!

I'm happy to hear some things are sorted..but very sad to hear that the blood and D have returned

Glad to hear from you,
big hugs and love,
~T~
09-20-2011, 10:13 PM   #10
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Okay - got a little from GI. They talked to Nephrology about the kidney issue and they do want to see Claire. As much as I am starting to hate having to break in new docs , it is probably better to be safe than sorry.

On the downside of the coaster, more blood and a mouthsore. Yes, Dex, I emailed. We'll see where we get.

J.
09-21-2011, 04:54 AM   #11
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Keep us updated J! Thanks!
09-21-2011, 08:19 AM   #12
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Hang in there Julie
09-21-2011, 11:38 AM   #13
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Sorry to hear about the continued problems. But sometimes a new doctor can be good. I am in love with our new hematologist.

Hoping things get better.

Take care,
Vicky
09-21-2011, 11:39 AM   #14
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Out of curiosity, why is she on Neurontin for her feet? What is her diagnosis? My 13 year old still has undiagnosed chronic pain years after a bad Remicade reaction. Curious how your story compares.
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09-21-2011, 05:26 PM   #15
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Hey J,

Oh man, that bloody roller coaster, I hate it with a passion...

Like you say hun, better to be safe than sorry when it comes to seeing a Nephrologist. Now refresh my scrambled brain . How long has Claire had renal issues and does it coincide with her flaring?

Sarah, Matt and I know Gabs have all had issues with hydronephrosis and ureter issues and it is best to get on top of things before any lasting damage is done. I know in my kids case and I would imagine it was the same for Gabs it was caused by the inflamed and swollen bowel pressing against the right ureter (Claire's is on her right side?). This caused obstruction and slowing of the urine out of the kidney, this back up then results in the renal pelvis becoming enlarged.
Sarah's and Matt's resolved once the bowel was dealt with. I'm not sure where Gab's is with hers at the moment. I think there was was some improvement post surgery and they are continuing to monitor it...maybe T will be along with the latest on things.

Good luck mate!...

Thinking of ya, always!
Dusty. xxxxxxxx
09-27-2011, 08:49 PM   #16
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I don't know how I missed these couple of messages - sorry!

@muppet - The Neurontin is for the unresolved foot pain that remained since her acute transverse myelitis episode. On 10/3, the Neuro is doing another MRI to be sure no new spinal cord/brain lesions.

@Dusty - I was backwards. It was the left kidney and we discovered the hydronephrosis back in April. Since it hasn't resolved when the flare subsided (repeat scan), GI advised further investigation. We have learned that Claire has duplicate ureters and duplication systems in that kidney. This was news to me!!! Basically, the top one is functioning fine. The bottom one is refluxing urine back tot he kidney. They rate the severity of the reflux from 1-4. Claire's is only a 1. Since we have not had issues with recurring UTI or kidney infections, the nephrologist and urologist are inclined to "leave it alone". I am in 100% agreement.

@everyone - Today isn't my best day. After talking to the GI office about the events of the last two weeks (plenty of bright red bleeding, mucus and pain to the point of tears when she has NEVER cried over abdominal pain - she is my tough cookie), all agree a flare is coming on. I agree too although I had to say/type it out loud. We've only been off the stupid prednisone a month. Anyway, the plan as it was explained to me today is a quick 6 weeks of pred, change the methotrexate from oral to injection i hopes for better absorption (the injections don't freak me - we've done methotrexate injections before years ago with the arthritis) and add colazol. Anyone out there used colazol???????

I'm in agreement with the methotrexate and the colazol. Although I have to wonder if it will work since the methotrexate didn't get her into remission all those years ago. The prednisone makes me want to grind my teeth, stomp my feet, yell NO NO NO NO. Part of me thinks we could try a couple of weeks on everything but the prednisone and then the other part of me says, "Julie - what are you thinking?!?!?!? " Feel free to weigh in.

And the rollercoaster rolls on......

J.
09-28-2011, 05:02 AM   #17
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Ugh J, I know the pred was the last thing you wanted to hear! Please give this child a break already!! She has endured way too much in her life!!

I've never heard of Colazol but I hope it's Claire's magic bullet!!
09-28-2011, 06:00 AM   #18
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Dex - looked up the drug (Colazol is the brand name). Looks like (again I'm guessing) he must think the bleeding is low b/c this is a UC med.

Balsalazide(bal sal'

Why is this medication prescribed?

Balsalazide is used to treat ulcerative colitis, a condition in which the bowel is inflamed. Balsalazide is an anti-inflammatory drug. It is converted in the body to mesalamine and works by reducing bowel inflammation, diarrhea, rectal bleeding, and stomach pain.
This medication is sometimes prescribed for other uses; ask your doctor or pharmacist for more information.
09-28-2011, 08:11 AM   #19
mizgarnet
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Julie- Give Miss Claire a hug for me.

Wendy
09-28-2011, 10:37 AM   #20
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Is it a 5asa drug, like Pentasa or Asacol or different than those? (I was just wondering because Brian's aunt has UC and can't get it under control...she's taken Pentasa before)

I hope it gets Claire back on track. Have they ever thought of using steroids that don't affect the whole body... is it called Entercort? We also always were prescribed Prednisone so I don't know much about it, but heard it works mainly in the colon. I'm sure you know waaaay more about all this than I!
09-28-2011, 07:36 PM   #21
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K - I think it's similar but plan to read more tonight We tried Pentasa unsuccesfully in the past - caused a liver crisis We've also failed Entocort recently. Sigh.....
09-29-2011, 10:53 PM   #22
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Hey J,

Re the kidney issues...Wow I bet that was a surprise! I agree, with a rating of 1 I would leave well enough alone and continue to monitor.

I think it is worth giving the Methotrexate another go, perhaps failure to produce remission in one instance may not prove to be the same in another, and I also wonder with Claire's growth and maturity if that changes her response to medication?
I don't know much about Colazol but I imagine that her adverse response to other 5ASA's had led them to similar drug that is metabolised differently, definitely worth a try.

I hear you about the Pred J but I guess my concern would be, by withholding the Pred are you jeopardising the chances of the Meth/Colazol working?...do they have a better chance of kicking in and being effective with the Pred kick start?

Either way hun, I so hope that Claire gets relief soon! Bless her...

Thinking of you mate,
Dusty. xxxxxxxx
10-04-2011, 10:19 PM   #23
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Well we started the pred today. Oh joy......

Yesterday was a horrific roller coaster day. Went to the children's hosp for brain/spine MRI - since it was 3 hrs in length, Claire was sedated. She did fine during the scan but had horrific complications inrecovery. Her sats fell bur rebounded with a little O2. Then sudden fever of 103.5, tachycardia, high bp, high respirations, she complained of pain in her head and that she was unable to feel her hands and feet. They said we were going to have to stay as she was unstable. Her little face was bright pink and eyelids literally purple. The anesthesiologist said he hadn't seen anything quite like it. About 2 1/2 hrs later, it was like someone flipped a switch. All her vitals normalized, she was eating Teddy grams and wanted to go home. And they did let us go home - quite late.

I'm so thankful she is okay.
10-04-2011, 10:49 PM   #24
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Oh hell J, what a scare! Poor Claire...bless her and poor you!...

Thank goodness she okay.

Good luck with another round Pred, I will be thinking of you hun...

Loads of love,
Dusty. xxxxxxxx
10-05-2011, 05:21 AM   #25
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Whoa J, now I know what your fb status was about!! Glad it turned out ok. Bless her heart!!
10-05-2011, 08:12 AM   #26
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OMG, how terrible for you and Claire!! Very happy all turned out well and you're both back home!

(I think you need off this rollercoaster and onto a nice swan ride! LOL )
10-05-2011, 12:11 PM   #27
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(I think you need off this rollercoaster and onto a nice swan ride! LOL )
Ditto!
10-05-2011, 12:32 PM   #28
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J- Did she have some kind of allergic reaction to something?
(Brian's allergic reaction to Remicade was scary and almost ended in admission too- sounds similar except the hands and feet part)
10-05-2011, 12:39 PM   #29
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How scary !!
You must have been scared out of your mind
I'm so glad she rebounded so quickly and you were able to go home!
Good luck with the dreaded Pred ...

much love,
~T~
10-05-2011, 06:52 PM   #30
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I swear I couldn't make this stuff up if I tried.

Neuro called today. Overall the MRI was unremarkable EXCEPT for something on her left frontal lobe. I was told that while it looks benign that the possibility of a tumor cannot be ruled out. Since she's clinically stable from the neuro perspective, the plan is to repeat the MRI in three months. If there are changes, we are headed to neurosurgery. Praying there won't be......

The anesthesiologist did not think it was an allergic reaction. However, I emailed my favorite doc (her rheumatologist) and asked him to take a look at the record. I've also requested a concise list of the medications she had to carry with me for the next round of anesthesia so we can avoid them if possible.

Honestly I don't know what else to do.

J.
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