LDN and my little farm girl

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Most GPs don't know too much about IBD.
Any problems we have l ring the GI even if l don't think it's IBD related. And they are usually very good if they can't help us they refer us to someone who can.
 
:ylol:Tess your amazing! Not just because of your typing skills but because you haven't gone postal on any docs yet!

Ya, well she's not easy to get into and it takes a couple of days to get a call back but..................I GET WHAT I WANT! So for now I guess I'll stay. Not because I'm smart but because Tesscorm is.:lol2:
 
Fab news to hear that she's doing much better!!! :dance:

I think you're right. Stick with the Devil you know! You probably know more about Grace's condition than any Doctor! If she's willing to listen and try your suggestions, then surely that is pure Gold in Doctor terms xx
 
:mario2:She went poo on her own. Then I said , no meds in bum tonight. :emot-dance:She than shouted, Praise the Lord God! I love this kid.:rolleyes:
 
I'm so glad Grace is doing better.. does she only see a GP and not a ped GI? I LOVE my pediatrician and she is amazing, but no way would she be "qualified" to handle the GI stuff.. I didn't realize you don't see a pedi GI..just curious as to why.. might be how it's done where you live, etc.. Not judging, just curious..

But biggest thing is that your baby is doing better.. I am so happy for you both!
 
LJS
Where we live????:ymad: For crying out loud, :ymad:how bad do you think Michigan is???? :ymad:
Just kidding!:ylol:

Yes she sees a pead GI. Along with other specialist. However it is her GP that wrote the LDN.
 
FW
Specialists are the ones trained to handle their area
The GP/ped is able to handle the normal childhood stuff ( colds, flu, ear infections etc...) NOT IBD or arthritis or eye "stuff"
YOur individual specialist should be the captain of the ship on each areas.
I understand your GP prescribed the LDN (not sure why your GI didn't if the doc is ok with it)
but the GI should be calling the shots on how to care for her GI tract.

GP just dont have enough training in that area to fully understand everything that goes into IBD.

That said you shouldnt expect your GP to be able to handle all the specialty areas that is Grace. Only the normal kid stuff.
 
I guess I should have been clearer MLP.
I was not implying that her GP should also act as a specialist but
rather she seems flustered with what all the specialist have to say and are doing.
My hubby said that would happen to anyone that only sees me for 20 minutes.:yrolleyes:
Ya, I guess he's right. :ymad:
I'm just nervous ( worried is more like it or just plan crazy) that she's feeling overwhelmed.
:yfaint: But again the sound of reason (hubby) said she's the kind of doc that will call and ask more questions if she has to.
 
^^Yeah dat MLP!


O's GI is like our general contractor. All goings on get reported to him and he decides if we need to see anyone and who that anyone shall be. He wants reports from all docs. Of course if it is a simple ear infection/strep throat issue we go to regular ped but they have it down to notify GI of the visit and detail the meds she is perscribed.

So much of what can go wrong in a body tracks back to the GI system. O had a miscellaneous eye infection and then a week later complained of hip pain and a stiff back...the two don't sound related at all, right...well they could be...ankylosing spondylitis. GI heard all this and ordered the appropriate tests. No way to expect a regular GP to perk up at those two complaints.

I know your GI is far but a partnership with him is critical. Especially given the two issues you are juggling.

BTW - tests were 9 days ago and no news so assuming she is all clear on the AS front. Just overworks her body.
 
I agree with MLP about the GP and the GI. Our GP was gold only because she took all of our concerns seriously, did research, gave us quick referrals when we needed them (dermatologist, rheumatologist, etc) and checked with our GI before she did things like prescribe antibiotics for ear infections. A GP really doesn't know anything about treating GI issues compared to a Ped GI.
 
I agree with others in reference to your GP. I see that our GPs (practice of 3) also have hard time keeping up with everything going on with Danny ... it is just too much information. I do provide my own summaries from time to time - especially after reading some specialists letters that get things mixed up!
 
Love Jack's GP and even though he has IBD himself he still refers to the GI for treatment/guidance on anything other than standard colds, well child visits etc. Lucky for us the GP just moved into the same building as the GI and are now on the floor directly above the GI
 
I agree with Niks. Stick with the devil you know. I sensed that our GP was getting a little overwhelmed at one point too. At an appt I just flat out said, "We have a lot going on here, do you think you can keep up?" Thank goodness he said yes. I still do all the coordinating between docs and clinics, but when I need back up (or Emla creme, no questions asked) he's my guy.

He knows a little bit about a lot of different things, while I know a lot about the few things particular to my kids. Our relationship is the complete opposite with our GI. Somehow it all works.

Do you really want to start over with a new doc? That's a lot of work.
 
FW, I don't think it would hurt to ask around to your friends if they have a pediatrician that they love who is knowledgeable. I work with a pediatrician and have worked for years with general practitioners. Our pediatrician is solid gold in what she knows and is willing to do and I wouldn't trade her for the world for any GP. She had a background in being a hospitalist pediatrician and I think that made her much more comfortable with chronic illnesses. I don't think there is anything wrong with looking around and seeing who is out there.
 
Grace has a rash across her neck now. It's small blisters and don't seem to itch much. None of them have opened up yet. Any thought?

:eek:Today Grace asked me to put a suppository in. :eek:That's a new one. I said why and she said please put it in. WOW!:confused2:

Also more pee-pee accidents. Plus tonight will be the second night of pain meds for her knees.:yfaint:
 
How often do you update your Gi ?
We call at least once a week
Sometimes more if things are bad
Rashes and joint pain plus constipation go with an Ibd flare for DS
Hope things calm down soon
 
*IF* I go more than a week or two they assume she's fine or we're dead.:smile:

If the rash gets worse I'll call her Allergist.

I guess for us, what equals a flare is............

Constipation+Joint pains+Tiredness=Flare

She's not to tired yet.
 
I'm with Caroline on asking around... Asking doesn't mean changing, but opening up your options.

We are extremely blessed with our GP and GI doctors. It was our GP that said it was Crohn's and sent up to the ER at Children's. When they sent us home, he picked up the phone and said I'm sending them back - look again. It's a large practice (probably 6 or 7 doctors), we've been with them for 16 years - truly amazing group (really get to know the families!) I know there has to be others out there like them.

Our GPs work hand and hand with our GIs - after every appointment we have with our GI she sends a detailed letter (never less than 3 pages) with labs, next steps, etc...

Sorry she's not feeling well again...

HUGS...
 
I have blister like things on my feet and have for over a year. Don't know what they are, but never had them before they said I had crohns.
 
No happy it doesn't hurt or even itch....right now.

Teresa ( 723crossroads ) I've been meaning to tell you, I love your avatar.
 
I'd mention the new rash to her GP ... especially with her allergy history. Sorry the "something new" seems to never end!
 
Fwiw you can't get shingles unless you have had chicken pox first .
The chicken pox lays dormant in your system until for some people it comes out as shingles much later .
;)
 
Sorry to hear that! I would have said molluscum maybe for the rash, but I'm not sure how quickly it can spread. Really wishing things would improve!
 
Lack of pain doesn't rule out shringles either. Sarah had no pain with her shringles until she had the rash for 10-14 days.
 
Thanks Shell,

Her rash is still there and now Turing dry and itchy. Calling a Derm tomorrow.

She vomited twice in the morning and for the second time ask for a suppository. Their was a hard BLACK piece of stool and then soft behind it. Great, now what's going on.:yfaint:

Also more pee-pee accidents. Going to call GP and see if we can get Grace in for an ultra-sound on the bladder.

Other than that...............she still smiles.:ghug:
 
Bless her. Hope the rash clears up soon and she doesn't continue vomiting.

Chicken Pox is pretty obvious. I think you'd know if it was.

Good luck with calling GP xx
 
Farmwife, you and Grace are amazing. You guys are dealing with so much adversity at the moment and you still manage to smile. Wishing you lots of reasons to smile soon. You guys deserve a break.
 
I hope the rash turns out to be nothing! Sorry you and your princess are still having new things popping up. Time for a break for you!
 
Farmwife said:
Thanks Shell,

Her rash is still there and now Turing dry and itchy. Calling a Derm tomorrow.

She vomited twice in the morning and for the second time ask for a suppository. Their was a hard BLACK piece of stool and then soft behind it. Great, now what's going on.:yfaint:

Also more pee-pee accidents. Going to call GP and see if we can get Grace in for an ultra-sound on the bladder.

Other than that...............she still smiles.:ghug:
Click to expand...

Is the rash both sides or does it stop at the midline? Shingles is only one-sided. The pee accidents could be from the constipation - the stool pushes on the bladder and makes it hard for little ones to hold it. Meds can also have the side effect of not allowing someone to urinate completely (urinary retention) so they have to pee sooner than expected. One of my daughters had that at your daughter's age when she was on a seizure med... We backed off the dose and she stopped wetting the bed and having accidents again. I'm not sure an ultrasound of bladder would tell you much except perhaps whether she is voiding completely.

Hope that helps.
 
GI said put her back on Miralax (which doesn't work:ymad:) and start senna every three days.
We have an apt. in a few weeks will see how she's doing until then.

She has her first Derm apt. in a few weeks also. We made apt. with a Derm down at the children's hospital. At least they've seen kids like Grace before.

Her GP gave a script for a bedside cameoed (sp?) (child size). :confused2:

We're going to wait out the bladder issue and I do believe it have to do with this flare.
 
Tomorrow is a full 3 weeks for LDN.
Were still hitting a few little bumps on the road
BUT nothing out of control as of yet.

I'm concerned that her tummy and drainage is becoming an issue.
6-8 hrs later I can pull (through g-tube) out food or vitamins.
Than the next she's draining normal. I don't get it.
The painful hiccups are back. :confused2:Acid reflux is causing havoc also.
I don't believe LDN has anything to do with this.

So hopefully her mini-flare will be under control soon.


:ghug:
 
Hope this flare goes away soon. Can't remember - does she take an antacid for the acid reflux?
 
MLP -she can have boiled chicken & over cooked rice. She also can have smarties and cotton candy. Keep in mind that she has stopped eating most of that. She can only have about a 150 cals from food.

DustyKat-Yes were doing bolus feeds IF she can't drink it by mouth, she's been doing all by mouth the last couple weeks.


Sascot- she's on a PPI.


Update- This is her third stool that is hard at the beginning. Why did it go from soft for YEARS to now hard? Had to use a suppository again.:confused2:
 
I know really nothing about the food allergies, etc. but, when Stephen was on EEN and he was allowed freezies, popsicles, candies, etc.... one thing they stressed he could NOT have were chocolate popsicles or candies. I don't know what it was about chocolate specifically but perhaps you could try to replace the smarties with another type of treat/candy (ie Stephen was allowed lifesavers, gummy candies, etc.). I wouldn't think just one or two smarties would cause a problem but maybe...??

Hope all settles soon! :)
 
Tess I don't think it's the candy. I've removed those for a long period and nothing changed. Smarties are so FAKE theirs no real allergen.

Shell- I know add water through the g-tube each time. Also she can drink ice water and often does plus her Splash has a lot.
 
we had to buy canada smarties from a US "nut free shop" for Ds due to allergies-
otherwise I would not have known there was a difference
 
Has any of you or you kiddo's have had a red dry rash around (but not in) you belly button?
It's spreading but not a bother to her yet.

Oh, I love allergy season but the rash "things" are new to me.
 
I forget has she seen dermo and what daily antihistamine is she on?
Cerave creme is the best over the counter creme comes in a tub
Very good for allergic kiddos
May want to try wet wrapping as well.
Hope the dermo has some advice
 
Our Smarties are your Smarties Tess. :)

Thanks mlp, they say you learn something new everyday and today you have taught me two new things!

Dusty. :study:
 
I tend to deal with most rashes with an antihistamine cream. If that doesn't work, then I go to the docs.
 
Please be careful with antihistamine creme
It can not be used if the child is on a daily antihistamine there are warnings on the box.
 
She is on an zertek (sp?).
I'm using good old glycerin on the spot. That's the only thing that works for us.
It's still there this morning but hasn't spread.
I'm just so frustrated...if it's not one thing for Grace, it's another.
We NEVER had all these allergy type problems before.

On the GI side of things and joint pains, she seems better. Maybe the LDN is kicking in.
Hey I'll take while I get it.
 
FW allergies tend to show up more around age 3-4.
It is called the allergic march
Grace is atopic on all fronts so be prepared for more not less.
I would let her allergist know about the rashes as well as Rheumo/Gi
Since they can be from non allergic things as well.
Also keep in mind with an atopic kid
What creme sunscreen worked before may not work again.
Since the immune system is ramping up between ages 4-6.
 
:eek:For crying out load.................... a yeast infection now!:eek:

:ymad:Are you kidding me! What in Sam Hill is going on with my girl???????????????:ymad:

Is this because of LDN?????????

I'll be off to the walk-in tomorrow with Grace if this don't improve dramatically.

Have a good week-end y'all.:ghug:
 
:eek:Weird!!!!!!!!!!!!! When asked about her leg yesterday she said it felt weird.
I notice sometimes when she has had leg problems (weakness, not baring weight on it), I'll ask does it hurt and she'll say no. Yesterday was a BAD day for her leg. I asked again and she came up with the word WEIRD. She said it felt weird. I think she means numb but being 4 she doesn't understand that word.

So what causes a leg to have pain in the joints one day and then a "weird" feeling the next?
I did call the Rheumy and they said we can wait till October.:yfaint:

I'm getting concerned that LDN is causing to much of a flare.
Will she be able to pull out of it?
I'm already coming up with another plan in my head. :yrolleyes:
The problem is, my head has no plans. :lol2:HUSH y'all.:ymad:

Still not pooing, unless helped.

:confused2:Sorry I'm just a worry wart today.:confused2:
 
Poor little princess. You know I'm currently a big fan of LDN but she may need something more for now to get her all healed up and feeling good. You could always try LDN again later. Jack was in a good spot when we started and was symptom free for the most part or as I like to say was about at 90% when we started. Now I'd say we are at 99% (if I could just get him to eat I'd say 100%).
It is not that there are no plans in your head it is just so full that you are having a heard time grasping that one plan :)
Hope her leg quits feeling "weird" and she is up and running around again.
 
Hi,
Just wanted to say that I sometimes have a leaky belly button, itches like mad too and gets very sore. My ears often were the same way. I used to have steroid drops for the ears and vasaline for the belly button. But I think sea salt water, not in the sea, but supermarket stuff, was good. haven't had it in a little while, but oh the peg area!
 
FW, that 'weird' feeling... keep in mind it could be RLS (restless leg syndrome)... but maybe we have talked about this before??? Is she low in iron? - when I was low in iron and HGB, I had really annoying RLS!! :ymad: I've periodically had RLS for years (guess it's an indicator of my iron levels ;)) and in my experience, it can happen with only one leg (usually how I feel it) but NEVER happens when in movement... so is her leg feeling weird when she's sitting, laying down, resting, etc. When it's been at it's worst for me, the 'motionless' time doesn't have to be a long time, it's happened even just on a quick drive somewhere.
 
Not sure why you only see Rheumo what every 6 months and the same for Gi???
Typically until things are under control
Visits to both every 6 weeks to two months
Once under control every three months.
That is way too long between visits.

Try to get her to describe "weird " to you
What it looks like to her
Have her draw a picture
Don't describe it for her
Trust me btdt
DS kept saying his stomach was "nervous" in first grade or kindy prior to dx.
He just didn't know the word nauseous yet :(
 
Could it be numbness low B12 levels? Jaime had this, but she had numbness and pins and needles from head to foot, but started in her legs... Just a thought?

Hope her infection clears up soon, and hope you find out what she means by funny xxx :ghug:
 
Could that rash be the yeast also? Candida can cause a rash.

I hope she is feeling better soon. Ready for Princess to catch a break!
 
Farmwife said:
Tomorrow is a full 3 weeks for LDN.
Were still hitting a few little bumps on the road
BUT nothing out of control as of yet.

I'm concerned that her tummy and drainage is becoming an issue.
6-8 hrs later I can pull (through g-tube) out food or vitamins.
Than the next she's draining normal. I don't get it.
The painful hiccups are back. :confused2:Acid reflux is causing havoc also.
I don't believe LDN has anything to do with this.

So hopefully her mini-flare will be under control soon


Can she eat at all? Sugar cures hiccups or a small spoon of pnut butter. Or also salt in yogurt works too. Keep in mind for when she can eat.
Click to expand...
 
Jmrogers4 said:
Poor little princess. You know I'm currently a big fan of LDN but she may need something more for now to get her all healed up and feeling good. You could always try LDN again later. Jack was in a good spot when we started and was symptom free for the most part or as I like to say was about at 90% when we started. Now I'd say we are at 99% (if I could just get him to eat I'd say 100%).
It is not that there are no plans in your head it is just so full that you are having a heard time grasping that one plan :)
Hope her leg quits feeling "weird" and she is up and running around again.
Click to expand...



Ya, I know! I was just kinda, sorta, prayin that this would work.:yfaint:

The LDN is doing a good job with her joint pains. I mean it's worth it for just that.
 
Spooky1 said:
Hi,
Just wanted to say that I sometimes have a leaky belly button, itches like mad too and gets very sore. My ears often were the same way. I used to have steroid drops for the ears and vasaline for the belly button. But I think sea salt water, not in the sea, but supermarket stuff, was good. haven't had it in a little while, but oh the peg area!
Click to expand...


Thanks for the info.
Grace has eczema (I think but pretty sure it is). I've been treating it and it looks better. It's spreading to her Mini button now. I've already tried to smack her hand away a couple times.
 
Tesscorm said:
FW, that 'weird' feeling... keep in mind it could be RLS (restless leg syndrome)... but maybe we have talked about this before??? Is she low in iron? - when I was low in iron and HGB, I had really annoying RLS!! :ymad: I've periodically had RLS for years (guess it's an indicator of my iron levels ;)) and in my experience, it can happen with only one leg (usually how I feel it) but NEVER happens when in movement... so is her leg feeling weird when she's sitting, laying down, resting, etc. When it's been at it's worst for me, the 'motionless' time doesn't have to be a long time, it's happened even just on a quick drive somewhere.
Click to expand...

It could be. I believe she's had RLS before.
However it makes the leg weak and she can't walk on it to much. Does RLS do the same?
 
my little penguin said:
Not sure why you only see Rheumo what every 6 months and the same for Gi???
Typically until things are under control
Visits to both every 6 weeks to two months
Once under control every three months.
That is way too long between visits.

Try to get her to describe "weird " to you
What it looks like to her
Have her draw a picture
Don't describe it for her
Trust me btdt
DS kept saying his stomach was "nervous" in first grade or kindy prior to dx.
He just didn't know the word nauseous yet :(
Click to expand...

We see the GI every three months.

Good ideas about having her draw a pic.
I'm careful not to put words in her mouth.
I think "weird" means numb but I'm not sure.

Her Rheumy said since she has more good days than bad she can wait until October. However, they said they can get us in sooner.
YES, I've already called and they said she can still wait.:yfaint:
 
723crossroads said:
Farmwife said:
Tomorrow is a full 3 weeks for LDN.
Were still hitting a few little bumps on the road
BUT nothing out of control as of yet.

I'm concerned that her tummy and drainage is becoming an issue.
6-8 hrs later I can pull (through g-tube) out food or vitamins.
Than the next she's draining normal. I don't get it.
The painful hiccups are back. :confused2:Acid reflux is causing havoc also.
I don't believe LDN has anything to do with this.

So hopefully her mini-flare will be under control soon


Can she eat at all? Sugar cures hiccups or a small spoon of pnut butter. Or also salt in yogurt works too. Keep in mind for when she can eat.
Click to expand...

:eek:Great!!!!!!!! Grace is going to want hiccups all the time.:lol2:



Also how in the world do y'all do multiple quotes on one post.:ymad:
Click to expand...
 
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RLS never caused any numbing for me. Actually, most (all) of the RLS sensation would go away once I started walking or moving my leg for a bit...
 
Lol, FW, really, my hand can't help but go to itchy areas, every species find this a natural reflex action. Poor girl. Hope it gets better soon. Does she have any oral zinc? that's brilliant for the skin but from inside as topically its not so good.
 
:soledance::rosette1::dusty::thumleft::mario2: :us_flag:

Just an update:

Hooray for LDN!!!!

Grace's most recent labs look GREAT (well except the blood sugar)!

The GP is happy with the progress and we're hoping that the little bumps were still hitting will resolve with a little more time.

Her muscle pain has almost vanished and her appetite is back.
Which is great when you can't feed her much food.:yfaint:

Her LDH total for the first time in a long time is finally back to normal. :smile:
That was the only real numbers we had to go on for her disease during flares.

I'm as happy as a lark!
Hopefully the GI will feel the same.:ghug:


We have a GI meeting on Friday.
I'm making my list of question already!:eek2:
 
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:dusty::dusty::dusty::dusty::dusty:
Fabulous news! Hope it keeps on improving, she deserves a break and just to enjoy being a princess :queen:
 
Thanks everyone.:ghug:

I just hope this means that LDN is working.
Also when talking to the GI it will give us some wriggle room. I think???
:sign0085:Who knows what he will say tomorrow.
I hate when you think it's going to go one way and you walk out totally shocked:eek: because you didn't see it come. KWIM

My Grandpa gave me a "thingy" (new word) to keep track of Grace's blood sugar.
I'll test her twice a day for 4 days. At least we should know if it was a fluke.

So off to the city tomorrow. I have to say that I'm getting use to the driving and location.
I still wish the hospital was in the middle of a field.:smile:
 
FW talk to your gp
There are better test to see over the past three months if she has been having issues with blood sugar.
Depending on when and how you test with thingy
You could get very wonky not useful at all numbers
Discuss your concerns with your gp
Good luck with the Gi in am
 
Yes Catherine. My Grandpa is a diabetic. He told me how and when are the best times to do it. I guess I'll take his 30+ years of expertise.:smile:

MLP I'll ask IF number seem off! Thanks for the advice as always:ghug:

Have a good night y'all.
 
My husband has it for the same reason.

I was asking about machine itself, as our things records 3 months of readings. So if you got a funny reading your would have it recorded on the machine.

I am sure you got instructions on it use.
 
Wow! It is so brilliant to read that Grace is doing fab! :dusty::dusty::dusty:

Sooooooooooooooooooooo happy for you FW! :):):)

I was just reading your other thread re BSL's. Doing the conversion it surely is on the lower side and naturally you need to look at the NRR of your lab but for a couple of the labs I have used here that figure is the low end of normal or maybe only a snig under it. I hope it is only a one off hun and not something new for you to worry about. :ghug:

Good luck!

Dusty. xxx
 
We have to decided to part ways with Grace's GI.
We parted on good terms and smiles.

I have nothing bad to say about the GI and the hospital.

So Monday we're back at square one. Well.......at least we have a dx's.

Gosh, now that it's been made final, I feel sick.:yfaint:

Hugs to all this week-end.:ghug:


The good news is Grace went to her first Zoo. She loved it and the monkeys even came up to the window to greet her. SO CUTE! No pics forgot camera.:confused2:
Oh, she grew an 1 1/2 in 6 months. YA!!! :smile:
 
You mean you didn't use the vice?

Well can't say I didn't see this coming but what was the straw that broke the camels back? Do you have a back up plan? How long will it take you to get in to the other GI? Grace is a complicated case and needs to have a GI driving the bus.

I know I am not telling you anything you don't already know. I know you have another city doc somewhere (Cincy please) up your sleeves.

Good luck!
 
1-Cincinnati Childrens
2- Mayo Clinic
and her GP has an "in" at John Hopkins

Cincy would be the best and most practical.
I have no idea how long. The Social worker from Devos will do all the switching over.

I have all week-end to obsess on it.
 
UGH! Is this the same social worker who was working on it last time? Did they give you any idea of how long it would take? Just your patient city friend wondering....
 
Yes the same one. She was a help last time. I pray she will be again.
Grace's GP already said she'll make sure things get done too

Now that Grace has dx's, I hope she'll get in faster.

At least Grace is stable and happy. So waiting a bit to make sure LDN is working won't bother me.
 
Just lurking and glad all is going much better. I can't believe you will be venturing our of the state. Good for you and your big girl britches. Before you know it you will be a city slicker... Not gonna happen. lol. Hoping this trend keeps going in this direction still have to catch up on your other threads. You take care my FW friend. Doing a fabulous job per usual!
 
If you can get your appointment at the Liberty campus of Cincinnati Children's (if you decide to go there) you won't have to venture into the big city. It is also closer to Michigan so it would save you about 40 minutes of driving. We had our first appointment downtown and it is a pain, huge compared to Helen DeVos and not as easy to navigate. Johnny now has all his appointments at the Liberty campus.

Good luck FW, I hope you find some solid answers and relief for your girl!
 
Thanks Johnnysmom,
I'll ask about that campus. I don't know where the EGID's clinic is at. I hope it's at that one. Grand Rapids was crazy to us. I can't imaged it where you are.

QueenGothel,
I looked at Mott's but I coundn't find any info about it. I NEED a GI that has treated these.

Of course the insurance will be a HUGE factor for us. I just hope we can make it work.
 
http://www.cincinnatichildrens.org/service/c/eosinophilic-disorders/default/

Wait list for those with egid a dx may be still over a year.
It was 3-4 months two years ago.
Chop /cchmc all tend to have a 3-4 month wait list for general Gi stuff

How will you handle things if she goes down hill prior to getting in to see a new Gi ( 3 months is minimum wait time just to be seen)?
Your gp really isn't equipped to handle it.
Is your current Gi handling things until she gets officially in with another Gi
Or did you completely part ways?

One thing you need to put into place.
If she gets sick at 8 am most Gi s require a plan in place where they can physically "lay hands" on her before the end of the day.
At the very least - a children's hospital locally that they can phone in directives .

Do you still have those options open ?
Not saying not to go .
We have more than a few times
But logistically you need to be prepared because the docs will ask how do you plan to handle those situations.
Since we all know Ibd can go from 0 to 60 in less than 24 hours.
We also know hospital care is a given .
 

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