Little Farm Girl and a New Journey

Crohn's Disease Forum

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Hugs...
Glad she was able to sleep .
Sending good vibes for you to be strong ( aka use the Ibd mommy backbone crohnsinct gave you) and tell the doc " we want answers and when should we be back for a scope"
More than one parent has had their child scoped with in a few days of talking to the Gi .

Our Gi did this for our older son given DS's Ibd history.
Thankfully he was clean but still needed done.
 
Yay... I am so glad she is feeling better. I wouldn't say that at the doctors appointment. Don't lie but don't spill your guts. Something are best not said point out all the reasons you need the scope. Hugs to you both. Let me know if I need to bring the vice.
nutkick.gif


I hope they can control your nephews symptom... Poor kid.
 
Write down all her symptoms and possible causes of them and what DOESN'T cause them (like a 'cheat sheet) so if they try to tell you something like IBS, you won't let them sidetrack you and immediately ask how IBS could cause joint pain, etc. I also find it really help me to have my list of questions with space to write the answer. Again it keeps me from getting side tracked and forgetting a question. When the apptmt seems over, I look at my sheet and if there are blank spaces (ie unanswered questions), I do say I still hv some questions. I always kick myself when I hvnt done this bcz that's when I forget stuff!

Also, - use lots of 'but, what about' and 'yes, I see, but I wonder abt' etc. Its a non-confrontational way of pushing the point when they say 'no', they'll be forced to answer all your doubts abt their 'no's.

Good luck! Will be thinking of u tmrw!!! I hope you get answers and they agree to a scope!!! Hope she's having a good day today!
 
One more thing... If they tell you they don't believe its ME or Crohns or whatever, ask them what symptoms she's missing (ie why they its its not 'whatever'). It cud be something you've forgotten to mention or didn't 'connect'. When Stephen was at emerg, just as the dr was leaving, Stephen said really just in passing 'oh, yeah, I had some canker sores a few weeks ago...'. I don't even know why Stephen mentioned it as I didn't think they were connected at all. But the GI jumped on it and started asking a whole bunch of more questions.
 
Will be thinking of you and grace tomorrow. Docs owe u guys some answers and more tests if they do not have the answers. Grace has suffered enough without a comprehensive treatment plan.
Hope your twins son is doing ok.
 
Yay for Grace sleeping through the night - bet you didn't :lol:. Hope your nephew gets his meds right so he feels better.
Good luck with the appointment!!
 
Will be waiting for your response. Be tough momma. Be nice, but tough. They do like informed parents. Try not to go off on tangents talking about odd treatments they wouldn't do. Don't mention the Internet either. They hate google and webmd. If you bring anything up about the Internet refer to pubmed or .orgs they will take these more seriously.
 
Good luck at the appointment, hope the GI puts you on a path of healing for your sweet little Farmgirl!!
 
Good luck today mrs . Lewis had to wait 3 years for his scope , as every docter barr 1 said its not crohns, and we had one doc backing us , I went to my gastro doc and let out 3 years of sleepless nights , and pain that my ltttle boy had on him and boy did he listen lol 2 weeks later we were booked in for a scope ..... Just saying lol... Good luck today .xx
 
:dance:We're almost ready to head off.:dance:

Just a special thanks to you all for your encouragement, advice and laughter though these tough days. I deeply appreciated it.:kiss:
Also I felt a need to tell y'all that because we're heading into the city and I might be killed.:voodoo:
Now where's my rolling pin????:rof:
 
It's Monday!!!!!!

Forget the big girl panties...you put on your b#@3ch girl panties! Channel your forum friends go in there and don't let them push you around. Don't forget your log! Love Tess and Mary's advice! I know as you get closer the prospect of a dx is more scary and it will be so tempting to accept more wait and see or maybe this or maybe that but think about how much she has been suffering. It is time for answer!.

Good luck with the drive, the city, and the appointment. Let us know when the scopes are.
 
Just remember to keep scanning and looking over your shoulder!!! :shifty:

Good luck hun! You are in my thoughts! :goodluck: and above all else...be safe! :lol:

Have a safe trip!

Dusty. xxx
 
Quick update:


Meet with GI today.
He's concerned about ALL her symptoms.
Ordered a Barium Enema. Waiting for call back. Could be this week.
Put her on Zantac
Referred her to Rheumy, Hematologist and OPT Doc (eye's).

Everything was going well when Grace needed to go to the restroom.
I came back to hear the GI say, no, no,no IBD would have blood in stool and she would be sicker.:ymad: Scooping would be the last thing needed. My hubby said GOOD.:ybatty: The GI did admit at my pushing that she "could " be heading in that direction so the Barium Enema will help show if it is. I asked about her stomach and he said he feels the Diflucan can cause that and said get her off and if no change , give him a call and we'll set up the scope and he'll probably do the other one too.:yrolleyes: He also wants her to start Zantac. I said last time things got worse in her GI track. He said we'll have to wait and see and put her on Senocot once or more a week. He ordered more labs. We'll get that done tomorrow.
I got home and opened a letter stating our GP is retiring soon.:( So now I get to GP shop.:ymad:

Grace is doing OK. She lost 2 lbs but seems happier than the last few days.

So there ya go. Not everything I want be more than I thought.:hug:
I pushed and got everything but the scopes.:confused2:
I still hate the city but nicer with the Tom-Tom.:tongue:

Oh, we might be heading back to her allergist because after 1 1/2 yrs. of no problems her wheezing/asthma is flaring up, all at the same time.:(
 
Ugh! Sorry we are experimenting some more and that it is more wait and see.

NO BLOOD IN STOOL = NO IBD???!!! Since when?! I could just hear the screams from over half this forum now. And I am sorry...she would be sicker?! Well she is pretty darn sick right now if you ask me!!!!! How would he like it if his small child were in poor Gracie's condition?

A new GP? Well I know you like the current one and I am sure he is lovely but here is one thing I could get behind.

So how long are you to wait to give the "getting off Diflucan" to make a change..ie: when can you call and request scopes? Was the Diflucan for the Candida? So he didn't buy the Candida theory? What did he say about those blood results from a while back?

Yay for the specialist referrals. Celebrate those victories! Although it might mean more trips to the big bad city!
 
I agree with Crohnsinct - What!!!!! You can tell him my son has never had blood in his stool ever :ybatty::ybatty:
Sorry to hear they are not keen to scope, but at least you are getting more done. The barium enema should show a good deal and at least they did say they would possibly scope! Hope the tests go well and Grace copes ok with them all. Try and have a relax this evening before it all starts
 
Hugs...
So frustrating .... We did hear the you need blood for crohn's but at least ours still did a scope since DS complied and started small amounts of blood.
Glad you got referrals. Hope they can fix some things.
Maybe your Rheumo will be like outs an push things so you don't have to.
2 lbs is a lot for a 3 year old.

One other thing to google since her asthma is acting up as well.
MCAS- mast cell activation syndrome .


Good luck on the extra doc visits you will be a pro at the city .
Also remind your your DH --you do the talking he just takes notes
In case you miss anything.
My DH has spoken up more than once - I feel your pain.
 
Barium enema just scheduled for this Friday.:eek:
I just hope it helps.
I still feel her problem area is in the small bowel.
But this still has to be done!:confused2:

I might have to go with out hubby.:eek:
Watch out big city here I come.:ymad:
 
Hi Farmwife,
I'm back after a long hiatus and catching up on threads and saw this one...just read it all the way through.
First of all WHAT a cutie she is :rosette1:!

As others above have said, NO BLOOD =NO IBD= doc is a moron, plainly put.
Violet and MANY MANY others have never had blood in stool, either frank or occult.
That said, I have two old (20+ years) ex-colleague physician pals (neither are GI men but one has an uncle who IS a GI and he says he agrees with him that: "I've never seen a case of Crohn's without bloody diarrhea".
My point is that MANY experienced docs subscribe to this totally erroneous belief.

Small bowel disease can be asymptomatic and doesn't cause bloody feces.
Little Grace's symptoms sound more like colonic disease which yes, is often bloody but NOT ALWAYS.

Personally I am appalled that they aren't RUNNING to scope her.
The ignorance in the med profession kills me. Please insist on scopes, both TOP and BOTTOM.

As MLP said, mast cell activation disorder OR systemic masto (not the same thing) can cause similar symptoms to Grace's. The pathologist must stain a certain way to look for mast cells in the specimen and ask for a tryptase level to be done when they draw bloods.

HUGS :Karl:
 
nutkick.gif


I love this smiley now.

So this barium enema is with an MRI? Cat scan? Hoping he means MRE? I am disgusted with the fact that he requires blood to be present to do a scope. Where did you go? Motts or DMC? Whom did you see? Sorry but I am dumbfounded completely. I know almost all of them down here.
 
Mary-We went to Devos in Grand Rapids.
Now to every one that's upset....he's only doing what he thinks is right. I don't believe that he would ever put Grace in danger. He's very knowledgeable and friendly. HOWEVER Grace is NOT typical and doctors don't always "think outside the box". Lets face it most GI doctors don't see 3 yr. olds for IBD. He's NOT against scoping her but he feels she doesn't have IBD. I pray he's RIGHT.:hug: Hopefully this test or more symptoms will change his mind. I just felt the need to defend him a little.
 
Got it you like your doc and trust him that is a good thing.
Your right most Gi 's don't treat 3 year olds with Ibd our didn't treat many 6 years olds at the time either .
The problem we have here is everyone else has Ibd blinders on - that is what we. know inside and out since we live it everyday.
If you were to go to another forum. Guarantee she would have a lot of flags for that disease as well since FTT , abdominal pain, joint pain are all very non specific .
I would recommend you get a referral to the big city hospitals diagnostic referral group they take cases like graces and help you determine the big picture not just the Gi picture which may help her more.
 
Trust me mlp I'm not against looking at other options.
As much as I love everyone here, I want to find the cause more than anything.
I think that's where Mary's hospital, she took Rowen to would be the BIG hospital to go to.

My hubby just got in and we have lots to talk about!

Thanks y'all.
 
i know the GI is not scoping but is at least doing further testing.

All our advise is clouded by what we know now. I did not push when the GP said no scope due the thinking we were dealing with IBS not IBD.

Any sign of worse symptoms get on the phone to GI.

Wishing you all the best. Make sure you get copies to all testing results.
 
The doc saying that with IBD there shall be blood is why I reacted by attacking him.
A pedi GI should know better for sure.

The reason scopes are paramount isn't to determine if this is IBD per se; the importance thereof is, you obtain tissue samples, thence histologic data which shall reveal disturbance(s) at the cellular level. What we call, " hard data".
IBD is only ONE of many disorders that can be ruled in or out definitively via histology.
That kiddo has something very wrong, whether it is immunologic, endocrinologic, metabolic or hematologic in etiology and a tissue specimen from the gut is a good place to start.
 
Yay for the answers that you did get! Yay for progress! But totally disagree about blood=IBD!! Just plan on telling them there's not a change and getting it done. You'll be much more comfortable knowing they took a look at her!

Back to the big city!

Sorry your GP is retiring. I know how it feels. I loved LOVED Ryan's Pediatrician. He retired when Ryan was 3. I was so sad to see him retire. I like the one now, but he is oh so hard to get in to see.

All in all, I'd say it was a good GI visit!
 
Suffering kids and docs who make dumb remarks are a combo that gets my back up. :ymad: I know you knew I meant no offense :smile:.
 
Oh sure Julie returms after a long absence and it is all kisses and roses and I am the bad guy! Talk about your prodigal forum member! I am calling the wedding off...AGAIN!

I am also not attacking him...btw...but seriously Gracie is a complicated case (and not because of her crazy mother) and there has been so much wait and see and maybe this maybe that...I think things need to move in some direction and agree with Julie on the scopes being a good start.

Hey Julie, I know you just got back and I don't want to scare you away but have you seen some of Izzi's threads and how horribly wrong we can turn things on this forum? Good thing you are back to bring back some dignity to the group:rof::rof:
 
I have nothing to add to all the great info above! :D But, I'm glad you will be meeting with the other specialists, especially the rheumatologist! Please be a PITA mom and push for those appointments quickly!!!

And, no blood here either! :ymad:

And, yep, to bring the husband or no...??? Would like the support but could be more trouble than it's worth! :lol: I usually go alone! :) (I'm actually setting up a Skype account so I can bring all of YOU!!! :thumright:)
 
NO BLOOD NO IBD!
That reminds me when my daughter first got diarrhea the GP said it can't be IBD she has no mucus... well to this day she's never had mucus.

I still think Grace needs to be scoped.

Oh well at least they're doing more tests
 
No blood = no IBD = my kids don't have Crohn's! Yeehaw! I am doing the happy dance! :poop::poop::poop:!!! And don't anyone dare burst my bubble! :yrolleyes:

Oh well hun, he may not have come at scopes just yet but at least he is starting to look ay? Any diagnosis is a process of elimination so this a start and you can now get the ball rolling. I hope it gives you the answers you need but if not it gives you the power to demand further investigation and it will continue that way until you do indeed get the answers you need for your baby.

Thinking of you, :heart:
Dusty. xxx
 
Thanks for keeping us posted :) The no blood=no IBD makes me shake my head. My little boy didn't have issues with blood until AFTER he was diagnosed and on the mend. But I feel that Dr. C and his associates had considered it and wanted the scopes to prove it. And isn't mucous more a sign of C-Diff than of the IBD anyway? I still feel pretty clueless about Crohn's and how it manifests, and trying to get my 4-year old to talk to me is hard to say the least! Praying for you Farmwife!!! Feel free to PM if you want to talk :) Every time I sign onto the forum, I am more and more grateful for it!
 
Hmmm...my daughter had approx. 5 foot of bowel removed last year and an ileostomy placed. She also had many, many fistulas, and 2 VERY large abscesses ~ laid in bed for a year straight except for doctors visits and the occasional trip to the living room to watch a little tv with the family. But hey. never ever did she have even a single drop of blood in her stool ! Hmmmm...Hmmmmm....Im with Dusty ~ time to celebrate ?!!?? LOL

Seriously, I'm glad youre at least getting some tests done :) And happy that she's feeling "ok" for the moment. It's a shame this is such a long process and so complex, but youre doing a fabulous job ! :ghug::ghug:
 
Change in the air!!!

Talk to head nurse, who'll talk to doc.
She was NOT happy, not happy at all and said neither will doc be!!!

Change in the air!!!

She called and got us into the pead. eye doc here in town for tomorrow and then to the docs (GP) office to get blood drawl and "talk" to doc about next step.


Of course I could be blowing this all out of proportion and be let down yet again.:yrolleyes:
 
It is a shame that all tests can't be done immediately and am frustrated for you that they couldn't just do the scope :facepalm: but, at least you are seeing some new specialists and will get new thoughts (especially from the rheumi). Unfortunately, there is a 'process' to be followed and, as frustrating as it is, sometimes the best you can do is nudge it along. :ymad:

Just keep doing what you've been doing, stay on top of everything... ie, keep calling back and pressing for rheumi appt date, etc. And, barium x-ray may show enough to warrant a scope??

In the meantime, hopefully, she stays feeling a bit better :ghug:
 
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Hey farmwife I've just read through the posts and caugt up on gracies docs analysis I say go with your gut instinct whatever that may be lewis never had blood in his poo he just had the abscess.s it took us 3 years for them to do a scope lewis had just turned 3 when his probs started if your trust your doc then go with that we didn't and went to see 3 others and out of the 4 1 did say she wasn't happy so she pushed for a scope took 2 years but he had it and well the end is Met all you guys. and in septmeber he was diagnosed with crohns . Hope gracies o.k. Today .xx
 
crohnsinct said:
Hey Julie, I know you just got back and I don't want to scare you away but have you seen some of Izzi's threads and how horribly wrong we can turn things on this forum? Good thing you are back to bring back some dignity to the group:rof::rof:
Click to expand...


crohnsinct stop trying to pull people into our insanity!!!:redface:


Update:
Grace is happy but.......................................
Weakness on her left leg. Constantly falling but her leg is not in pain yet. Last time she had this for a day or two and then bad knee pains until I gave her three doses of meds to make it stop. WHAT COULD CAUSE THAT?
My doc still hasn't heard when the apt. for the rheumy is yet.

The GI said no miralax or Senocot till after the test on Friday.:shifty:
Nervous about that given last time of her prolapse and bad pain.
 
FW, Violet had unilateral leg weakness for a few months last spring.
No joint inflammation, no injury. Just the knee giving out. She was in phys therapy at the time for her POTS and the phys therapist couldn't see anything wrong, she saw a Big Dog rheumatologist during that time, he found no reason for it.
It did NOT HURT. Just couldn't support her weight.
It resolved on its own. It was very odd.

That cutie doll needs the rheumatology appt, I am so glad she is going.
Waiting is the effing WORST :voodoo::voodoo::voodoo:
 
Hi Farmwife,
Been running around and just had a chance to catch up. ( also had to watch the debate last night so no time to go on the computer). Anyway I am glad they are doing something but am thinking is an X-ray even a barium one really going to show anything much? Are they doing a fluoroscopy maybe? ( it is a more intensive X-ray where they take live pictures as the bowel processes the barium). I still say keep the push on for them to scope her. Like the others said she needs the biopsies done so you can know microscopically what is going on.
 
Fwiw DS 's first official test was an upper Gi with small bowel follow through ( X-ray fluoscopy) it showed nothing except his system moves things slowly through the gut.
The radiologist was never able to visualize his TI. He even told us then and there that was good since it meant he didn't have some horrible like crohn's.
Wish I had seen that doc again to show him the biopsy report.

Good luck Friday
 
Well I am not sure weqather to be happy or sad for you - at least things are getting started and at least she is having the barium enema soon.
SOOOOOOOO glad she is finally being referred to the other guys as well.
Weather this makes any difference or not but Freddy has been on 5mls of Senokot twice daily for a long while so if the twice weekly senokot does not work then it is possible to increase it (it can make their poo bright orange so be warned!!).
I know it is so frustrating having to do one test at a time but at least you are on the right road. If the enema is normal the GI will probably be like 'oh well its normal - see nouthing wrong - just carry on as you are she is perfectly healthy' - do NOT accept this if you feel that there is something wrong (which I think given what she has been through I would be surprised if there wasn't) - if it's normal then ask him 'so what are you going to do now to find out what is wrong with my baby?'
Good luck for Friday - and especially good luck in the city (I do hope there are no nasty Crohn's inct types lurking around!!) ;)
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 
grrrrrrrrrr - my computer only showed me half the posts AFTER I had posted the above!! so now it makes no sense!!!! sorry if I seem like a crazy person!! and hope you get to see all the doc's SOON and hope that poor grace survives without the senna and miralax till Friday with no nasty prolapses etc. xxxxxxxxxxxxxxxxxxxxxxxx
 
Update:

Grace collapsed in the store with belly pains.
I got her to the car and she cried most of the ride home.
She said she needed to use the bathroom and went poo.
The BM still had undigested blueberries she had 5 hours earlier.
Right NOW she sits on a heating pad because 15 minutes ago she starts crying mama, mama my knee, my knee. Also right now her wheezing/asthma is acting up.

Tomorrow is pead. eye specialist in town. Then labs will be taking after that.
So she will be a ball of fun tomorrow night.:yfaint:

I'm ready to throw in the towel and crawl under a rock. I just fell like no one is going to help her. Keep in mind I running on empty and for the next two days things will be just a crazy.
 
hugs hugs hugs.

I could have written your post many times over the last two to three years.
It does get better you will get there . You are doing your mommy best and getting her some tests.
WE did find the other specialist tend to push the GI so hopefully that will happen in your case.
They may see XYZ which is common in GI problems ABC-- so they talk tot he doc.
Pretty soon you have a clearer picture.

Do you have a pulmo handling her asthma ?
An asthma action plan?
http://www.healthychildcare.org/pdf/MedAdmin/AR_AsthmaAction0-5.pdf


IF she is having symptoms ( needing albuterol for wheezing is a definite one) more than twice a week then typically she should be seen and possible add or change her maintenance meds ( sorry three asthmatics in the house = too many yeasr of exp and ER trips.)
Good luck this evening
 
mlp she had a bout of asthma when she was one that lasted 6 months. Never to be seen again till a few weeks ago. Basically when everything flared up so did it. We have a nebulizer but no meds for it because it's been so long. Our allergist handled it last time.
If it stay then back to him we go. Of course he said kids that young don't get full blown asthma. It's just called wheezing. :yfaint:My mom about hit the roof and said your bother was a severe asthmatic since BIRTH!:yfrown:
 
IF she is actively wheezing - get her to the ER.
SHe needs albuterol period.
They can call it what they want but needs albuterol. I have seen with Ds how fast they can get bad and given she is not on any meds to keep inflammation down in her lungs.
Do not wait things tend to get worse in the middle of the night since your cortisol goes down so wheezing increases.
This not something to fool around with.
They can give you meds at the er for your nebulizer.
IF Ds is wheezing for more than 20 minutes we have to go to the ER and that is with albuterol - since you have none you need to take her in.
HUgs
 
To be offically dx with asthma you need three episodes of wheezing/severe coughing within a year when they are too young for a lung function test.
 
Praying for you! I hope maybe these things will push along the tests, etc. I still don't understand why everyone seems to be writing this off! I think we all need to come and pay you a visit! A bunch of angry parents with you will get the job done...or get us arrested! :) Seriously I am praying for you to get the answers soon! We love you!
 
:ghug: Hugs Farmwife! I really hope you get some answers for Grace soon! I would be ready to camp in the Dr office like Occupy GI!

If her asthma does not stop, get to an ER! Ryan's old Pediatrician used to tell me to look at his ribs. If the ribs really show (like the skin is going between the ribs when breathing) then she is having a really hard time and she needs a breathing treatment. Also watch the number of breaths per minute. It should be under 50-60. We have gone to Dr before to be sent straight to be admitted when Ryan was Grace's age.

I am so sorry. I know you are on your last nerve with this! Here for you!
 
Thanks everyone.:hug:


Update:
Grace asthma is getting worse; off this morning to get meds.:tongue:

I'll be off for a few days. Pray for Grace. The test is three hours and NO sedation tomorrow.:eek:
 
hugs hugs and more hugs xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
you will get through this, and so will Grace, just take each day at a time - or maybe hour at a time.
My second child had 'asthma' since very young and all the Dr's kept telling me was 'he's not 5 he can't have asthma' they made me feel like I was mad, eventually I convinced them to put him on steroid inhalers (he would cough so much in the night that he would wake up with broken veins all over his face), because they were so blase about it in the summertime I stopped the steroid thinking he didn't need it - ended up rushing him to hospital bareley breathing - was awful - after that the Dr's did admit that he probably did have asthma and he is now on 3 different asthma meds.
Given that Grace has so much going on at the moment I think it would be best to get some ventolin from your GP - you don't want her to have any more difficulties.
more hugs xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 
yet again my computer didn't show me the most recent posts till after I had posted the above! - sorry - hope Grace got the meds and wil be keeping my fingers crossed for her tomorrow xxxx
 
I hope Grace is feeling a little better today.i was just doing some research for Tess on the thread about her son about fecal calprotectin testing. Maybe you could ask the doctor to order that test for Grace. It is a simple stool collection and if it comes back positive it is good evidence that she needs to be scoped. It may be a good first step.
 
Eye's look good! Ya!!!:dance: Perfect vision!

The pead. eye doc said that Grace might be having migraines. :ywow:
He said this is how is can start and she might get abdominal migraines later on!:voodoo:


Update:

Grace is happy and no pains as of yet.:dance:
Leaving the WEE hours of the morning. Be back I hope :shifty:5 pm.
 
God love you guys :Karl:
I have been down the asthma path also. V was asthmatic from ages 2-4. Viral trigger, twice in six weeks in ER in status asthmaticus back to back nebulizer tx did nothing. She had to have solumedrol IM to bring her out of it. Pedi pulmonologist said ALWAYS keep prednisolone in the house and if 2 back to back nebulizer tx didn't bring her to baseline, USE it 3-5 days at 30mg/day. He did not hesitate to call it asthma.
My point being, hers was INFLAMMATORY in nature, not due to bronchospasm.
Grace's may also be.

God I hope you get answers, and soon.

With love,
Julie
 
The hospital has given us a social worker. Is that normal????:eek:
She called and introduced herself and said the test came back good but...
The GI does wants Grace to do a mobility study.
Only a few hospitals are set up for this. 2 in Ohio.
Sorry girls she never brought up Chicago.

We meet with our GP on Thursday to discuss our next options.

What to do???? :confused2:
Go to another GI and see if he scope her? What if he doesn't???
Stay and wait 2-4 months for this study to be done????
Something is wrong with her track.
What in the world is a mobility test/study???:yrolleyes:

Update on Grace:

Happy but........not hungry much, bathroom trips have double: still liquid to soft and pain in her bum tonight. :(Oh let's not forget her worsening cough. Still wheezing BUT no full out asthma attacks yet.
 
Myreinhard said:
I just wanted to say to Farmwife, and izzysmom...

GO TIGERS, sweep victory. AWESOME!
Click to expand...


Oh Mary I had to tell you this.

My nephew was taking by medical transport to Mott's Hospital on Friday. His symptoms are worsening for the Epilepsy.
Yes that sad but my pride come in when my 9 year old nephew LOOKS at the ER doc and says,
WE'RE STATE FANS. :ymad:
The ER doc says,
WELL I STILL TOOK AN OATH TO SAVE YOU!:rof::tongue::rof:
 
First try breathe.
See what the GP has to say.
In the mean time-
Call both of the two centers in OHIO.
Tell them you want a records review and a second opinion.
That way - fresh set of eyes can look over everything.
They can schedule whatever set of tests they feel she needs including a scope/motlity testing and anything else might as well get the most out of your trip if you need to head that way anyways.

I know a few GI's at one of them so PM me if you want. We went through the process twice so worth it IMO.

As far as the social worker...hmmmm.... not too sure on that one.
DS has multiple specialists - no social worker but I do know some of the larger hospitals sometimes throw those in as part of the package just like a nutritionist or psych eval.

hugs.
 
Is she on albuterol for the wheezing & pred?

Did you call your allergist? they could get her in for a "sick" visit which it sounds like she needs.
wheezing should not be happening even with albuterol.
if so you need to head to the ER.
What does her GP say? can you call the oncall ped?
 
:rof::rof::rof:

Glad to know we aren't the only ones getting into to trouble with sports affiliations. Our GI is an Auburn and Mizzou fan. Bama played Mizzou the weekend after Ryan's first reaction. GI came in to see him with his Mizzou stuff on (Ryan was decked out in Bama gear)...GI says "you just wanted to come back next week so you could brag!" :eek2:
 
Food study is when they have her eat a certain food and see how long it takes for her stomach to digest it. I believe, don't quote me on this. And yes a social worker is the norm in Michigan. I had one at both hospitals, once I became more demanding.

GO BLUE!
images


He is funny glad he is keeping his sense of humor. I hope he is doing better. He is in the right place. ;)
 
Thanks:hug:

But when he first mentioned it on Friday he was talking about the rectum!
Today it sounds like he wants both ends done!
MLP mentioned in another thread that this study could be painful.:eek:
How so mlp, or don't I want to know. BTW I love your idea about them reviewing her case.
:ghug:
Good night y'all!
 
I hope the wheezing is resolved soon! Sorry to hear about your nephew, Farmwife but how adorable about the fan statement.

Jmckinley, my hubby is originally from Alabama and both of his parents are Auburn alum. Hubby is a UGA alum but is all Aubie at heart, which means he is having a rough go of it this year!
 
Sorry to hear that Grace is still having all the toilet issues and cough! I would agree about asking for a second opinion, have to say I really think it would be best for a colonoscopy - I can't understand why they won't do one. It's not like she hasn't been sick enough or in enough pain.
The motility study is a good idea, but another 2 - 4 months wait is very frustrating. No idea about the social worker.
Hope they manage to get your nephew doing better.
 
A motility study is when they look at how food and fluid move through the digestion tract and it generally means the upper GI tract, so can include the oesophagus, stomach, duodenum and into the small bowel.

Social workers seem to be part and parcel of the hospital team here in Oz. Every time my kids have been in they pop by and see how things are going and if they can help with anything.

Dusty. xxx
 
Oh God, FW...this is absurd.
They need to scope her already and obtain tissue specimens and determine what is going on at the histological level. Why they refuse is beyond me. I cannot imagine.
She is symptomatic, failure to thrive and they are going to wait 2-4 MONTHS?

I am speechless. :voodoo::voodoo:
 
Sorry I don't know much about the motility study but I have thought that maybe that is Grace's problem so sounds like a good thing to investigate me. As for the pain...Bah! Little farm princess is a tough girl. That last test with no sedative...all the pain she has endured...she laughs in the face of pain!

Now, as for the 2-4 month wait...I cry B.S.! I would also want to know from the doc how a motility issue would be causing all the blood result issues and why he is so sure it is not IBD because to make this poor child wait another 8 weeks he must be pretty darn sure it isn't IBD.

I love MLP's suggestion of just making the visit in OH a complete visit. Call and get the test scheduled and get in to the GI team there. SEnd your whole file oh and your journal to for good reading!

Good Luck...hoping and praying for an answer soon!
 
Oh and all your sports talk is really entertaining. Our puny little state doesn't have a major sports team...heck no real big college team either...well except UCONN Basketball.

But heck I think we are the decorating/food capital of the world ala Martha Stewart so if you need to platter those special brownies real nicely I am your gal!
 
Still sending hugs for you and Grace!!! The 'waiting' is sooooo frustrating! I'm so sorry that things just can't get done sooner!!!
 
Hope the motility testing results in some answers for your little Farmgirl. I have to say you have the patience of Job! Maybe, the GI really doesn't think IBD and this direction goes to what ever he is thinking. Did he mention he was specifically leaning toward? I hate that you are having to do all of this waiting, I know that you are just hoping to get to the bottom of things quickly so you can start getting Grace to feel better.

I don't really have any experience with the testing you are speaking of, although can someone tell me the name of the test where as you are drinking the barium shake they have you on this table that shifts and moves different ways as they take xrays? I assumed this had something to do with testing for motility issues. It was the first test our GP ordered for C before sending him to GI. We were sent to GI only after anemia showed up.

Good luck with the upcoming tests, I hope they find answers for Grace.
 
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Farmwife,

We were never given a social worker but I think you should take advantage of whatever she can do for you! She should be able to navigate all of these different Dr's for you.

If you find yourself in Ohio for testing for Farmgirl give me a call. We are in Cincinnati and my guess is Cincinnati Children's is one of the hospitals that has that study. PM me and let me know and I will give you my number.

Hope you get some answers soon. (((((Hugs)))))))) Tiffany
 
I have read thru most of the threads on your daughter but not all yet, so you may have done this already. I went thru the Mayo clinic in Jacksonville with one of my blockages and was told Mayo clinic in MN was awesome as well. Dr. Cangemi(sorry can I say his name??) was an excellent GI and actually who got me started on biologics. I was told by a patient Mom at that time, (they had just transferred to Jax from MN and daughter was 6), that the Mayo clinic in MN was remarkable and had an excellent Ped GI. Hope this helps!:rosette1:
 
:thumright:We had the BIG decision making appointment with our GP and...............

He does feel that the GI is being good in what he believes to be the possible problems and ruling them out. However the mobilities study he wishes to do will be of more benefit IF scopes :thumleft:are unable to answers that question properly. Scope are a must I said!!!
NO GO, TILL THEY SCOPE MY GIRL! Doc agreed!
He found a GI Doctor at the University of Florida called Sarah Glover and her specialty is IBD and Mass Cell activation which ME is a part of.
He will try to contact her today or tomorrow. She was at Chicago GI clinic for years so he's hoping maybe their would be someone closer to us that would specialize in it the ways she does. He is STILL going to contact our GI and "discuss" Grace in more length and see if perhaps he would do the scope and let the biopsies be sent else where to get the stains.:thumright:
He's just thinking of more that one option.
Still no word from the rheumy dept. :frown:
Blood work came back and......
LDH back to normal for now!
WBC is still a problem along with a few other
but hey their not that big when I'm in my nice bubble!:rosette1:


UPDATE::frown:
Belly pains.
Left leg giving out.
pains at night again
Pee-pee accidents at McDonald's play yard.:cool:

Black specks AGAIN in her stool. IS THAT BLOOD OR NOT!!!!!!!!!
No iron pills no berries of that color. So what could it be????

:soledance:
 
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I looooove these bubbles!! I'm bouncing along right with you!

I'm sorry still nothing more definitive but, at least, he is in your corner and trying to get some answers.

But, sorry I'm sure I missed something along the way, is the motility test definitely scheduled? Will it be of any diagnostic value if you don't get the scope? I hope you get the rheumi apptmt soon... from what has been said on the forum, the rheumi can often be a big help in moving towards some sort of diagnosis.

:ghug: (you know... this little smiley kind of looks like a bunch of bubbles hugging :ybiggrin:)
 
Sounds like you have a great GP who is ready to fight your corner!! - Yay!!
I hope you get the scopes scheduled soon - and get some answers for poor little farm girl!
Totally love the new Avatar!! - what a cutie!!
sending hugs and good thought's your way! xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 
No Tesscorm the test is NOT a for sure thing yet.
We're not against it but scopes are the way we what to go.

Our doc just feels that ME (Mastocytic Enterocolitis) would better explain her symptoms than anything else right now. Also he's hoping because of her age she would be a good test subject to follow through out her childhood. They are starting to think that ME is a strong precursor to UC and Crohn's. To study her might help put that puzzle together. Right now I don't care as long as we find out one way or another. Even if the scopes come back clear and no ME, then I would feel better about moving on to something else.
 
Oh no! Poor Grace...:hug:...I hate to see that she having hard times again. :(

Since the GP is all for scopes I hope he can find a doc, speak to them directly and get the scopes organised...(((sigh))) I will keep my fingers crossed and my eyes closed tightly and repeat over and over again...I wish Grace could have a scope. :hug:

Always thinking of you and your gorgeous girl, :heart:
Dusty. xxx
 
Looks like Chicago is in your future like it or not!!!!!!! Let us know when the scopes are scheduled and we will meet you there!

I am starting to like this GP. Good for you for sticking your ground.

Scope! Scope! Scope! Scope! (said in my finest chug chanting voice)
 
Oooh bubbles, I like my bubble too :ybiggrin:. No idea on the black specks in the stool - I would think it might be blood coming from higher up in her intestines, especially if she isn't eating anything that might cause it.
Sounds like your GP is getting the ball rolling which is great.
I'll chant too - scope, scope, scope!! Hope they get back to you soon.
 
One little secret we learned.
If your Rheumo is higher ranking at the hospital than your Gi things tend to move pretty quickly.
Just depends who you see and who is in charge of what.
Just saying if you haven't chosen a Rheumo yet- unless your Gi is the dept head then your out of luck.
Hope they can get to the bottom of it.
One thing that comes to mind if the gp believes it is ME( similar to mast cell disorder ) is there a reason why he is not starting her on the Zantac/Zyrtec/ cromolyn combo since they help ME and Ibs stomach pain???
 
mlp,
Doc told us to hold off right now on the meds.
He needs to find out what she can't have before scopes.
Plus, how far away will the scopes be.
Her wheezing is staying about the same. No big asthma attacks YET!
The Zantack I have and she was on that before and caused GI symptoms to get worse.
Matter of fact that's when the constipation started but stayed after she was off it.
So I think I'll push for a different kind.

I wish that rheumy would call again Grace is crying in tears sitting on a heating paid.:frown:
I took a video of it! I wish I had the e-mail to that dept. so I could send it and say look what your making child go through.:mad2
Good night y'all.:rosette2:
 
I know rest will be hard to come by but I hope you and little Grace are able to find some peace tonight. :hug:

Dusty. xxx
 
Yay scopes!!! :dance::dance::dance: I am so happy the GP is on your side and willing to listen. I have heard of Sarah Glover she is supposed to be really great. I am so happy you guys are hopefully finally going to get some answers. I am so sorry she is in pain again. Sending her hugs and you too!
 
It sounds like the GP is really in your corner! I hope you get some answers soon. Sorry to hear Grace is feeling bad. The new profile pic is adorable!
 
You seem to be closer and closer to getting an answer! That is so exciting! It's so much easier to deal with something when you have a name for it. I'm still praying you get the scopes. I shudder to think what B would be dealing with if his GI had not ordered them a few days into his hospital stay. He said he just had to SEE what was going because he didn't want to rely on just blood work and stool samples. It made me feel better when all the nurses and other doctors (attendings/interns) at the hospital indicated they had complete confidence in Dr. C. Your GP sounds like he has his head on straight :) And I agree...your new pic is so cute! :)
 
I am so sorry to hear Grace is not feeling well!! Give her lots of hugs from my way as well!!!:hug: And here's to wishing the scope gets done!!!! :goodluck:
 

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