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Infinite Rollercoaster

AZMOM

AZMOM

Moderator
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.
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
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?
 
DustyKat

DustyKat

Super Moderator
Oh J...:hug:

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, :heart:
Dusty. xxxxxxxx
 
D

dannysmom

Location
NY
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!
 
G

G's mom

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:
AZMOM

AZMOM

Moderator
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
 
Brian'sMom

Brian'sMom

Location
Midwest
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)
 
Crohn's Mom

Crohn's Mom

Moderator
Hey J :)

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

AZMOM

Moderator
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 :ylol:, 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.
 
G

G's mom

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
 
muppet

muppet

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.
 
DustyKat

DustyKat

Super Moderator
Hey J,

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

Like you say hun, better to be safe than sorry when it comes to seeing a Nephrologist. Now refresh my scrambled brain :lol:. 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!...:goodluck:

Thinking of ya, always! :heart:
Dusty. xxxxxxxx
 
AZMOM

AZMOM

Moderator
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 :ysmile: - 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?!?!?!? :voodoo:" Feel free to weigh in.

And the rollercoaster rolls on......

J.
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
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!!
 
AZMOM

AZMOM

Moderator
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.
 
Brian'sMom

Brian'sMom

Location
Midwest
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!
 
AZMOM

AZMOM

Moderator
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.....
 
DustyKat

DustyKat

Super Moderator
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...:hug:

Thinking of you mate, :heart:
Dusty. xxxxxxxx
 
AZMOM

AZMOM

Moderator
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.
 
DustyKat

DustyKat

Super Moderator
Oh hell J, what a scare! Poor Claire...bless her and poor you!...:hug:

Thank goodness she okay. :)

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

Loads of love, :heart:
Dusty. xxxxxxxx
 
Tesscorm

Tesscorm

Moderator
Staff member
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 :ghug:)
 
Brian'sMom

Brian'sMom

Location
Midwest
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)
 
Crohn's Mom

Crohn's Mom

Moderator
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~
 
AZMOM

AZMOM

Moderator
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.
 
DustyKat

DustyKat

Super Moderator
Oh my goodness J...((:)hug:)))

You are right hun, you couldn't make that up! UGH. It would be an understatement to say that I hope more than anything that it is indeed benign. Is there anything they asked you to look out for in the meantime?

Always here and thinking of you mate...:heart:
Dusty. xxxxxxxx
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
I know how frightening it is to hear something like that J! Just keep the word "benign" bouncing around your head! Hugs to you mom!
 
G

G's mom

J,

Unbelievable! I am so sorry for all you and Claire are going through. I can't imagine how awful that day was. I hope things improve soon.

Take care,
Vicky
 
Brian'sMom

Brian'sMom

Location
Midwest
Oh Julie! I wish we could all give you a much needed hug! I agree with the others to try and keep thinking it is nothing to worry about. The doctors plan is to wait 3 months and rescan...I think that is because he thinks it's not going to be an issue either.
 
AZMOM

AZMOM

Moderator
Dusty - we cOntact her immediately for vision changes, loss of balance, increased numbness, etc etc etc
 
DustyKat

DustyKat

Super Moderator
Okay J. I know you will be well on the ball and I am right beside you mate.

I have ABSOLUTELY everything crossed that the three months sails by with no neuro signs...:goodluck:

Always here, :heart:
Dusty. xxxxxxxx
 
Tesscorm

Tesscorm

Moderator
Staff member
Sending lots of wishes that all is fine for the three months! But, it's just so hard to wait! But, as everyone has said, try to remember that the doctor is 'comfortable' waiting for three months - if he/she felt there was more urgency, the three months wait period wouldn't have been suggested.

Praying that you and Claire that the 3 months pass quickly and without event!!! :ghug:
 
AZMOM

AZMOM

Moderator
:dance: Claire is feeling great. I hate that ol' prednisone but it is so nice to see her run, jump and play and NOT be spending her waking hours in the bathroom! The Methotrexate is going well so far. No complaints - even with the switch to sub q.

On the other hand, I'm worried about her brother. He's a cross country runner and over the past weeks, his time has gotten slower and slower. He keeps vomiting at the finish line. Over and over and over - at the last race, they had a paramedic look at him before they would let me take him. :-( This is very unusual - both the slow time and the vomiting. He says he can't run because his stomach hurts so badly. Then the other night, homework took hours and hours because he couldn't stay out of the bathroom! Ugh. Of course, he's the ripe old age of 12 and doesn't want me to look at the BM. Keeps saying "It's fine Mom". That may be, but a month of stomach pain is too long.

Yes, Dusty, I've emailed her doc tonight to see if he'll take Hunter. If he won't or the appointment will take a million years to get, I'm going to try one of the partners. Sigh....... I'm sure it is nothing but something doesn't smell right.......

J.
 
DustyKat

DustyKat

Super Moderator
:emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance: Woohoo! So fab to hear that Claire is doing well J!...long may it continue hun...:hug:

Oh man, I'm so sorry to hear about Hunter, :(. I hope and pray more than anything that you can get in to see Claire's doc ASAP and nothing serious is found...:goodluck:

You're in my thoughts mate. :heart:
Dusty. xxxxxxxx
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Oh man J! I'm happy for Claire but I can't imagine how scared you must be for Hunter! Is Acra even in the country? Or do you mean Claire's GP?
 
AZMOM

AZMOM

Moderator
Well I meant Acra - Claire has a 11/3 appointment so I would think he is around. However, the nurse said today we have to have a primary care referral since he hasn't been there. Sigh...

Tonight I palpated his abdomen. Okay first of all, my kid has a washboard stomach! I wish I had that belly. LOL. Now in all seriousness, Dusty, what do you make of sharp pain in right lower quadrant when pressed? Cried again tonight on the toilet. He let me check the "product" tonight and I didn't see any blood. Some mucus. Mostly normal. He says "I don't feel good" and gets teary. He can't have weeks of appendicitis and no fever. So I'm not thinking appendix but I'm at a loss of what could be hurting so badly down there!!!!

Going to try to get him to pediatrician tomorrow.

J.
 
DustyKat

DustyKat

Super Moderator
Hey J,

Well, RLQ pain is notorious for ileal crohns, particularly terminal ileum. The thing is, when you palpate if it is the appendix then you should get what is called rebound pain...it doesn't hurt so much when you press down as it does when you release the pressure...so press down, hold for a second or two and remove your hand quickly. Then ask him if the pain is worse when you press or let go. I still wouldn't rule out a grumbling appendix especially if he has the classic rebound pain.

Good luck with Paed appointment! I don't imagine you will have any trouble getting a referral?

Thinking of you...:hug:
Dusty. xxxxxxxx
 
Crohn's Mom

Crohn's Mom

Moderator
Hey J :)
So happy to hear about Claire ! yeah!! Hope she continues to get better and better !

I wanted to comment on the bit about Hunter and the appendix. (not trying to scare you...just inform) Last year, July, JJ had been complaining of a "tummy ache" and nausea and a bit of diarrhea for about a week and a half. Then on July 4th his dad took him to the Nascar race and had to leave early because JJ "just didn't feel good", so he brought him home. JJ wasn't in agonizing pain or anything, just kept saying it hurt and he didn't feel good. NO fever at all. He vomited a little, but he hadn't really eaten much in the previous 2 days, so it was just a little liquid. At some point that evening I decided to palpitate his abdomen and when I got to that lower right side he teared up and said that really hurt. Again, not agonizing.
"Something" in my gut didn't feel right about this so I suggested going to the ER. He threw a fit and said no way that he just had a little bug and I was being ridiculous! LOL.
Well, I won and insisted he didn't have a choice and better safe than sorry.
They immediately did a CT scan on him once we arrived, but they did say before hand that because he could walk and talk and wasn't crying in pain, he was probably "fine".
About a half hour after the test they came in and said they were prepping him for emergency surgery and it was a really good thing I followed my instincts because his appendix was on the verge of rupturing! He was in surgery in less than an hour.
Sooo...my point ?? LOL ...
Hunter doesn't necessarily need to have the "typical" appendicitis symptoms for that to be the problem and the way you describe the rebound pain I wouldn't rule it out.
If he is not eating, vomiting, or just real nauseous, etc...I would take him to the ER and have a scan just to be safe :) IMHO.
Best of luck to you with getting him an appointment soon!
love to you all!
~T~
 
AZMOM

AZMOM

Moderator
Well hell, T, he's gone to bed! :ybatty: I'm just going to pray it's alright until morning. I don't think I'm going to let him run tomorrow though. Probably better get a CT instead.

I'll let you all know whats up.

J.
 
Tesscorm

Tesscorm

Moderator
Staff member
Glad to hear that Claire is feeling so much better but so unfair that you now have a new worry! I hope you get some answers for Hunter quickly!

Good luck!
 
AZMOM

AZMOM

Moderator
Lying here with brain on overdrive. Ang I shoulda had wine! Dusty & T - no rebound pain to speak of. Just pain when I press about halfway between ribs and hip bone. Very teary and tired :(.

More tomorrow....

J.
 
AZMOM

AZMOM

Moderator
Peds ordered labs and plain abd xray. Called and said all was normal. Said if goes on a couple more weeks will do GI referral. Thoughts?
 
D

dannysmom

Location
NY
Oh - I am sorry about Hunter. If this has been already going on for a whole month, I do not see why you need to wait another 2 weeks for a GI referral .. :(
Good luck.
Glad Claire is feeling better.
 
DustyKat

DustyKat

Super Moderator
Weeeeell, you know how I feel about normal test results. Bloods aside, a plain abdo X-Ray will tell you basically nothing when it comes to IBD.

If I were you I would look at what is in front me regardless of what the tests say. If Hunter continues to have pain, and what ever other symptoms he may have, and you are not happy with how he is progressing then I would be pushing for something to be done sooner. Are you at that place now?
I don't know how long you have to wait for a GI appointment but it may be worth getting the referral and the appointment set up now, if you don't end up needing it then all you have to do is pick up the phone and cancel.

In my thoughts, :hug:
Dusty. xxxxxxxx
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
"Labs are clear" is the news I'd want to hear but it doesn't explain anything. Something is going on if he is still vomiting and in pain. No rest for your weary mind J. Sorry!
 
izzi'smom

izzi'smom

Hmmm...I agree with Dusty. Glad to see that the bloodwork is OK but ask for the referral now...it may take two weeks to get in as it is! We have refused all abdominal xrays for this reason...they will show an obstruction or an impaction and can show free air (from a perforation) but without drinking contrast will usually show nothing else.
...and next time, self medicate with wine...helps me sleep! :) Hoping today is a good day for you all (((HUGS)))
 
AZMOM

AZMOM

Moderator
I felt the same way about the xray. I'm pretty sure he thought H was constipated. We will be with the kids 24/7 for the weekend so that will help my decision.

Thank you all for telling me what you think!!!!

J.
 
AntsMommy

AntsMommy

(((Julie))) (((Claire))) and (((Hunter)))

So sorry I haven't been on the board in quite some time ... will write another post for that.

My experience with Ant's lower right pain was that it was his Crohn's affecting his terminal ileum where he had a stricture (and as you probably remember all this) after three hospital visits/stays/multiple x-rays and CT scans showing no appendix issues, finally the phlegmon that didn't improve, he had the surgery.

NOT saying Hunter needs surgery! Just saying that maybe it could be something relating to Crohn's and regardless, I would not be comfortable waiting another two weeks to see what happens.

Isn't it crazy that we Crohn's parents actually think it being something as easy (though not "easy" at all) as the appendix would be a blessing - surgery and it is gone forever? Sigh.

Sending you all hugs. I promise to check in more often!!

Kelly
 
AZMOM

AZMOM

Moderator
He seems somewhat better but still routinely complaining. Scheduled with Claires doc December 12th unless there's a crisis prior to......

Another cross country parent approached me at a restaurant this week to tell me how concerned they all were about Hunter. Made me sad.....

I just love you all for checking on us.

J.
 
Crohn's Mom

Crohn's Mom

Moderator
Awe J...Is Hunter the type that says "I'm fine" ?
My Austin is, and it seems to make things harder. I've had a few of his coaches come to me with concerns about his pain and breathing during football practice. I hate that .. I feel like I'm supposed to "fix it" NOW!
I hope Hunter is doing ok for the moment...

big hugs and love to you,
~T~
 
kimmidwife

kimmidwife

Hi Julie,
A couple of things. Firstly that definitely sounds like an allergic reaction to one of the anesthetics. Good idea to get a list and review it carefully with the anesthesiologist before getting anesthesia again. Second, If there is even a slight possibility of a brain tumor do not let them wait 3 mos to repeat the scan. Brain tumors can be very fast growing and if it is one it needs to be treated ASAP to get the best results. I would take the scan and go for a second opinion. A close relative was just diagnosed with a brain tumor and they said if they would have caught it sooner it would have been much more treatable and now things are way more complicated and it grew over a few months to the size of a baseball in her head!
Lastly, you mentioned your doctor was only doing labs once every 3mos on the methotrexate. I am surprised our doctor made Caitlyn have monthly labs when she was on the methotrexate.

I am going to keep you guys in my prayers and pray that there is no brain tumor and that your daughter will improve on the methotrexate. It worked great for my daughter for 2yrs. Please keep us updated.
 
AZMOM

AZMOM

Moderator
Thanks Kim. I should have quantified my quarterly remark. Claire was on methotrexate years ago for arthritis. After monthly labs for a year, our Rheumy let us go to quarterly. Since she's new now (again), I would prefer monthly for awhile at least. There are days that I adore our GI and other days that he makes me be the doc I think.

I appreciate your care and prayers.

J.
 
kimmidwife

kimmidwife

You are absolutely right AZMOM. We often have to be the doctor for our kids by being their advocate and reading and learning as much as we can. This forum is so helpful for this. I have learnt a lot here.
 
DustyKat

DustyKat

Super Moderator
Hey J...:bigwave:

How are Claire and Hunter going? Fingers and everything else crossed that no news is good news hun...:hug:

Thinking of you all, :heart:
Dusty. xxxxxxxx
 
AZMOM

AZMOM

Moderator
Awwww Hi Dusty. :)

Claire is doing great. She will be off steroids 2 weeks on Tuesday. Fingers toes eyes crossed, etc that it will continue! Last time we made it about three weeks before the bleeding returned. I'm trying not to think much about the upcoming MRI and enjoy her feeling good.

Hunter still complaining - appt 12/12.

Love you for thinking of us....

J.
 
DustyKat

DustyKat

Super Moderator
Thanks J...:hug:

Soooooo fab to hear that Claire is doing well! :) I too hope it lasts and lasts hun...:Karl:

I'm sorry to hear that Hunter is still having problems. :( Good luck with the upcoming appointment mate. :hug:

Sending you and your kiddos loads of love, luck, prayers and the very best of wishes!

Much love, :ghug:
Dusty. xxxxxxxx
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
I'm glad to hear Claire's doing better J! I hope there's a nice, easy explanation to Hunter's ongoing symptoms! Good luck!
 
AZMOM

AZMOM

Moderator
Not whining. Not crying. Just sayin........2 weeks to the freakin day off of steroids and you know it.......bloody loose stool and a mouth sore. That's what I get for posting how well things are going! :ymad:

She's asleep. I'm drinking a BIG glass of red. Will it help? No! Does it taste good? Yep.

Praying that I'm completely overreacting and it's a coincidence. Yeah, Dusty, I know......;)

J.
 
Crohn's Mom

Crohn's Mom

Moderator
Awwe Damn J...I'm sorry :(
Maybe tonight deserves 2 glasses ?

luv you...I hope it's a coincidence and the wine has affected your judgement! :)
 
AZMOM

AZMOM

Moderator
And her Daddy (who's a dear, by the way) is sleeping like a b-a-b-y in the other room. Bless his heart.....I think he knew to stay away. :lol2:

J.
 
Crohn's Mom

Crohn's Mom

Moderator
I've noticed my husband has the same calm, cool, and collected attitude! I think they (secretly) count on us to do all the worrying for them! :)
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Sorry J! I don't know what it might be, but it seems it's time for a new approach for C. Have you discussed what's next possibilities with Acra?
 
AZMOM

AZMOM

Moderator
Well Mark, this was plan B. He mentioned in & out nightly NG tube to me once. For a variety of reasons (NONE of which include clinical efficacy arguments), I'm not a fan. However, if she flares, we have to figure out something.

I'm hoping my "wine down" last night was not me toasting the failure of methotrexate. Only time will tell.......

J.
 
M

mizgarnet

Julie-Come on down. I have some homemade blackberry wine that will cure what ails you. Keeping your family in my thoughts and prayers.

Wendy
 
Tesscorm

Tesscorm

Moderator
Staff member
Julie, I so hope Claire has no more symptoms today and it was just a one-time thing! And, hoping for nothing serious to come out of Hunter's appointment! :ghug:
 
izzi'smom

izzi'smom

Oh, man...I am so sorry. I hate that! I would have had wine with you last night...;) I am wondering if (for us) a therapeutic dose of steroids is our alternative to surgery (although I am dealing with the hormonal backlash of it the last week :( ). UGH. Hope tomorrow is a better day for Claire. and you, of course..."wine" away! ;) Nobody deserves it more!
 
AZMOM

AZMOM

Moderator
Hunter has lost weight. Claire has gained weight. I have a 12 year old that weighs only 8 lbs more than the 8 year old. That makes me nervous!
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Like you needed more to worry about! Is your aversion to NG tubes doubt it will help or the obvious problem of trying to insert it daily? I would imagine Claire's been through so much that it'd be easy for her to get used to.

I hope it's just a moot point and the metho proves effective but I can't help but have my doubts. I'm sure you know nothing about those:)
 
DustyKat

DustyKat

Super Moderator
Ah hell J...:(

I hate that you are going through this. Grrrrrrrrrr.

Just know that you and your babies are in my thoughts and prayers hun, always!...:hug:

Much love, :heart:
Dusty. xxxxxxxx
 
AZMOM

AZMOM

Moderator
Last two days relatively uneventful. No increase in frequency. She did cry, point at left side at bedtime and tell me there were thumbtacks in her belly. :(. Just watching and trying to determine the tipping point when I should make the call. A lot depends on how much blood I see this weekend.

Those of you not on FB haven't heard the latest Claire funny. She asked me if I wanted a hearing aid for Christmas. After I expressed some mock horror, she asked me if I wanted a thong! I had no idea she knew what a thong was!!!!!!! This girl........love her :).

J.
 
AZMOM

AZMOM

Moderator
Mark - I have some more reading and research to do. However, I feel about EN a little like I do about steroids. While both induce remission, both are not long term solutions to keep you there. That said, we're damn near out of options so I may change my tune.

Oh and Claires last GI was concerned about the psychological ramifications for Claire because no matter how sick she's been she Loves to eat. That discussion was a couple of years ago though and if I've learned nothing else, it's never say never.............

J.
 
DustyKat

DustyKat

Super Moderator
Hey J,

Thinking of you hun, ugh, the waiting and watching is so hard, so many decisions, so much second guessing...:hug:

Ahhhh J, Claire never fails to put a smile on my face! Bless her...:ybiggrin:

In my thoughts, prayers and wishes, :heart:
Dusty. xxxxxxxx
 
DustyKat

DustyKat

Super Moderator
I hope all goes well with Hunter's appointment tomorrow J. Thinking of you and loads of love, luck and wishes...:goodluck:

Dusty. :heart:
 
AZMOM

AZMOM

Moderator
Ok after watching him wince when lower rt abd examined (TI Dusty???), he is ordering lab & stool studies, CT & scopes. We are waiting now for our fist full of paperwork.

At least he didn't take any convincing to evaluate him.

J.
 
Crohn's Mom

Crohn's Mom

Moderator
So glad to hear he is getting testing done quickly ! Sorry he has to tho :(
Have they completely ruled out his appendix being the problem yet ?
I'm still crossing my fingers for "just" that !

big squishy loving hugs
xoxoxoox
~T~
 
AZMOM

AZMOM

Moderator
T - I'd looooooove *just* that. I don't think anything is ruled out yet.

BTW mothers - collecting stool samples is one of our God given talents. So is carrying them to the lab. I tried to hand H the bag and he said, "Thats tour job, Mom. I'm way too young for that.". Lol lol

J.
 
Tesscorm

Tesscorm

Moderator
Staff member
I do hope the tests indicate that it is nothing more serious than 'just' his appendix! You already have so much on your plate!:frown: Sending lots of luck with the tests!:ghug:
 
AZMOM

AZMOM

Moderator
Noticed on the labs, he's also checking for Celiac. CT next Tuesday.

It means the world to me that you all "checked in" on me.
 
Tesscorm

Tesscorm

Moderator
Staff member
We're all on this rollercoaster ride together... who else really understands what we're feeling and when we need that extra little boost up! :hug:
 
AZMOM

AZMOM

Moderator
Man of the hour. This is a carefully supervised (by mom) ladder plank this summer. Where did I get these beautiful, nutty children?

IMG_0237.jpg

J.
 
Last edited by a moderator:
Crohn's Mom

Crohn's Mom

Moderator
That's hilarious J !! LOL

I can't help you with the sizing, sorry, really wish I could tho..it messes up the page ! hahaha

love you..best of luck !! :)
 
Tesscorm

Tesscorm

Moderator
Staff member
:rof:LOL... wish I could help! No techie skills here!

... almost 'live action' as you scroll across the screen.........
 
G

G's mom

AZMOM said:
T -
BTW mothers - collecting stool samples is one of our God given talents. So is carrying them to the lab. I tried to hand H the bag and he said, "Thats tour job, Mom. I'm way too young for that.". Lol lol

J.
Click to expand...
:rof:
I bet you have the best time in your house when everyone is healthy. It sounds like y'all still have a good time even when they are not feeling so well. I hope they figure this out soon and it is a quick fix.

Take care,
Vicky
 
DustyKat

DustyKat

Super Moderator
Hey J!

LMFAO at Hunter! What a hoot...:ylol:

Hmmm, yeah, lower right quadrant pain is TI/appendix area. It certainly is good know that they are going to tackle this head on and not sit on their hands about it. It goes without saying that I hope more than anything that all signs point to something that is simple and easily treated...:hug:

Sending you all the luck in the world J! Always. :)

Dusty. :heart:
 
izzi'smom

izzi'smom

Missed the last page...lol at the stool samples...thank goodness for a baby potty-so much easier-and tell me again why I never have a brown paper bag when I need it?!
Oh. My. at the plank. Who thinks that stuff up!??! Hilarious!
 
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