Jae's update and sibling issues

CarolinAlaska · Jan 28, 2015

Well, Jae did pretty well since moving to Illinois in August. The first part of the transition was difficult with a new school and no mom around for 3 months. She was really stressed, but she was gaining weight and grew a few inches, so I felt overall she must be doing well. However, over the past 3 weeks or so, she's been having blood when she wipes and has some sores on her anus, just inside. It hurts to poo

. Her appetite is decreased and she has abdominal pain every morning

. She is thinking that she is flaring. We have an appt with her GI tomorrow afternoon.

DD#2 (age 10) has been having abdominal pain 3-4 times over the past week, and has had to stay home from school because of it twice. The other two times I made her go anyway. She says her stools are normal although she had diarrhea on the first day. She is overweight (has been all her life, but this last year she gained in extreme. She is gluten intolerant like Jae and I am, and has had issues with abdominal pain all her life, and has always been gassy. I took her off dairy a week ago, but hasn't made any difference. I'm thinking that soon I'll have to bring her to see the doc about her chronic abdominal pain issues. Anyone with kids who presented with IBD like this? What tests should I ask for first?

crohnsinct · Jan 28, 2015

T has always been on the larger size for her age and that is one of he reasons why everyone ruled out IBD for her. Couldn't be Crohn's she was growing! Abdo pain every since she could speak. Not enough to make her stay home but enough to mention it. Normal bm's...well according to everyone else...that is if you consider once every 3-4 days normal..which I was told by the GI it was.

Jan 14 she had a pretty severe time of it. Took her to doc he agreed to run blood tess for celiac, sed rate, crp etc. I asked for Fecal calprotectin. Bloods all returned normal so doc cancelled fc test.

Fast forward a year and no weight gain but we are figuring she is done growing so not freaking. Ped says go to GI just in case. GI says she doesn't have Crohn's let's do an FC to put this thing to bed. Elevated numbers twice. Scopes in January and the kid has Crohn's.

My point? There are many atypical presentations on this forum. There are also many who don't show inflammation in blood tests. Some (but fewer) don't show in FC. I would request bloods and an FC test to start and take it from there.

Could it be possible she was inadvertently glutened? :blush: For as many Celiacs out there who are underweight there are just as many who are overweight. Has she had a Celiac panel run?

CarolinAlaska · Jan 28, 2015

She has not had gluten, but traces don't usually bother us. We're not celiac. Can you have Crohn's and be overweight?

Sascot · Jan 28, 2015

Sorry to hear Jae is flaring. It's so hard to tell what to do with siblings. A faecal calprotectin is always a great start and no needles involved.

Maya142 · Jan 28, 2015

My daughter was not at all overweight but had the same sort of chronic abdominal pain that you describe - bad enough that she occasionally missed school from it, but not terrible. Stools were normal, besides occasional constipation (which we put down to not eating enough fiber).
IBD can be sneaky - I have seen members of the adult forum who say they are overweight and have IBD. I also know of one teenage girl who goes to our infusion center who has ulcerative colitis and is overweight.

crohnsinct · Jan 28, 2015

I certainly wouldn't rule out IBD on the basis of weight and like Maya have read of adults who were heavier who have Crohn's.

If she has gluten sensitivity she could have progressed to Celiac.

I would start with the FC and if that comes back as no inflammation maybe do some blood tests and take it from there.

Beyond that there are a host of other things it could be. Abdominal pain is the number one reason people go to see a doc. It is also the most frustrating to try to figure out:voodoo: Ours was a seven year journey to here.

my little penguin · Jan 28, 2015

:voodoo::voodoo::voodoo::voodoo::voodoo:^^^^ yeah that
Dealing abdominal pain yet again ....

Jmrogers4 · Jan 28, 2015

Sounds like a crazy few months for you all. Yes definitely heard about overweight and CD. But wouldn't rule out celiac either. Have to agree with the panel FC and blood tests to start

kimmidwife · Jan 29, 2015

I was just thinking of you guys and wondering how you were doing. Sorry to hear about both your daughters. We had some issues with our other two daughters as well and are currently watching them and getting fecal calp. every six months.
Hope you figure things out. Where in Illionois are you? We used to live in St. Louis and I was stationed at Scott Air Force base in southern Illionois.

DustyKat · Jan 30, 2015

So sorry to hear about Jae, Carol. :ghug: Good luck with the appointment today!

I agree with what has been suggested hun. Since you have reached the point of tossing IBD around then I think you need to proceed with consultation and testing so you can move forward either way.

As to weight? It isn’t uncommon to not have weight loss as a symptom. It fits in the realm of you can’t have IBD because... you don’t have blood, you don’t have diarrhoea, you are overweight. Wish I had a dollar for every person that doesn’t present as the ‘typical’ IBD sufferer!

Dusty. xxx

CarolinAlaska · Jan 30, 2015

Thanks everyone. Kim, we are in north central Illinois . About an hour north of Peoria.

Jaedyn had her appointment yesterday. Not sure I like her new doctor. He said her labs were good. Her 6-MP metabolites were all normal. Her lactoferrin was negative. He said based on that he thought she was doing fine. He did put her on folic acid because her folic acid was low, which never has been low before. We can't help but be frustrated. I had just got done saying that she was having bleeding (that she's never had before), no appetite, abdominal pain and diarrhea off and on. He said her weight was in the 10th percentile, which it appeared to me to be barely on the chart. I asked about her BMI %ile, and he told me it was 14.1. But when I got the take-home form it said her BMI was zero percentile (weight 96 lbs, almost 5'8" - height is 94%ile. He was happy when pushed to schedule an EGD and colonoscopy which he will do on Tuesday. He listened briefly to her breathing and felt her tummy, but has never even asked to look at her anus, even after we told him she had been bleeding when she wiped. I can't help but hope that her scopes show something so we can have some kind of change. Unfortunately her original colonoscopy and EGD did not show much . It was the videocam that really showed her Crohn's in her small bowel.

Thanks for reading!

crohnsinct · Jan 30, 2015

Oh no! I am so sorry it didn't go better. Her weight is 10th percentile because of her height!!!! They have to look at weight for height! There is no way a 14.1 BMI is o.k.!

But glad you have the scopes planned and glad they are quick. Did you happen to tell him that scopes didn't show disease activity? Maybe he is just waiting until he does them to decide to do further imaging.

UGH! Don't we all know too well the feeling of not wanting there to be something but wanting there to be something. :kiss:

Sascot · Jan 30, 2015

Very frustrating! Hope the scopes go okay and show something.

kimmidwife · Jan 30, 2015

If you guys are in a small town then that may be an issue. A lOt of these small town older docs are just not up to date on the latest literature. Maybe think of taking her to Chicago? I have heard there are some excellent IBD docs there.
A BMI of 14% is absolutely not acceptable. 18 and under is considered abnormal.

my little penguin · Jan 30, 2015

Big hugs
Not under standing not checking for blood in the office
That is pretty much a given
Also our std is imaging scopes then pill can if needed
Since blood is always normàl
Second the getting to a major Ped teaching hospital that has an Ibd clinic .
Even then it's hard if your kiddo flares outside the box

Maya142 · Jan 30, 2015

A 14.1 BMI is very low. M's was around 16 and her GI was very concerned and insisted on starting overnight feeds via an NG tube.
If this GI doesn't start being more helpful, I would look for a different one if possible. I hope scopes provide useful information :ghug:

DanceMom · Jan 30, 2015

A's BMI is 14.8. We should be aiming for 18?? She has nice muscular legs and abs, but looks thin and sickly overall.

5'8 and under 100 lbs seems extremely thin to me. I remember that you don't want to do any tube feedings so what other options ate you considering to help with weight gain?

DustyKat · Jan 31, 2015

I am so sorry to hear that you didn’t walk away the consult feeling confident in the doc, that sucks.

I agree with all that said above regarding your lass’s BMI. :ghug:

Good luck with the scopes and I hope he schedules small bowel imaging to compliment them!

Dusty. xxx

crohnsinct · Jan 31, 2015

DanceMom said:
A's BMI is 14.8. We should be aiming for 18??

Yes in general you should be. GI's like the kids to be a little higher even to account for weight loss during difficult times. I am sure you will be discussing her BMI at her appointment next week

Carol: maybe upping the shake intake would be good but I fear there is inflammation that is the root cause and not until that gets dealt with will she really start absorbing her nutrients and gaining. :ghug:

CarolinAlaska · Jan 31, 2015

DanceMom said:
5'8 and under 100 lbs seems extremely thin to me. I remember that you don't want to do any tube feedings so what other options ate you considering to help with weight gain?

I guess we aren't totally ruling out tube feedings - just not G-tube yet. I brought up reinserting the ng tube after the scope while she was under. He didn't engage the idea as an option. J isn't thrilled about it either. My other thought is changing to Remicade. Just because 6MP helped bring down her FC numbers and helped with abdominal pain doesn't mean that it is controlling her Crohn's, does it? I'm also considering throwing out all the sugary fake nutritional drinks for a Whole 30 challenge to see if the diet changes will help her get over this final hump nutritionally. This is not being done lightly, but something has to give and if it can be done with good healthy food, I'm willing to give it another try...

Maya142 · Jan 31, 2015

How old is J? My daughter was 17 and very VERY against the idea of inserting an NG tube every night, but her GI insisted she needed one and M didn't want to have one in all the time, so she agreed to learn how to insert it herself. She was able to learn how to do it fairly easily. The first night was rough (she was very uncomfortable) but after that, I was surprised at how quickly she got good at it. She now thinks using an NG tube is WAY easier than drinking Peptamen.

When we were at the hospital (M spent three days in the hospital because her GI was worried about her low weight and refeeding syndrome) her psychologist was very helpful and so was ChildLife.

I hope J starts feeling better soon:ghug:

CarolinAlaska · Jan 31, 2015

Maya, she has tried several times to self-insert, but hasn't ever been successful.

crohnsinct · Jan 31, 2015

Carol: You are right. Just because her more obvious symptoms are gone does not necessarily mean the inflammation is totally under control

You won't get a fight from me on the move to Remicade or a change in diet.:thumright:

Poor Jae has been going through so much! The stress of the move coupled with not feeling well. You know your girl best, but my girls would push back on the diet in her scenario. You know I am a HUGE fan of food as medicine but maybe go slow. Work with her to pick one thing to delete and one thing to include a week.

Like I said before, I think inflammation may be playing a starring role hear. Once you get that under control I think you will have a clearer picture of where else you can improve.

In the meanwhile just try to keep those calories and shakes up.

P.S.: if you want some good food documentaries to watch pm me and I will send you a list. Watching a few of those is what got my family bought in. When mom speaks all they here is "blah blah blah" But when they watch the movies and see doc after doc and patient after patient talk and when it is on the "screen" it is suddenly magical.

Maya142 · Jan 31, 2015

Poor Jae

I hope her GI can figure something out so she feels better soon. Remicade works like magic for so many kids, maybe it would do the trick for her :ghug:

Regarding the tube, did it have a stylet (wire) in when she tried to insert it? It's much easier with one, M could not do it without one. Also, we used a really small one, 6Fr, which is used on babies.

my little penguin · Jan 31, 2015

Hugs if I remember correctly they place she tried at the hospital didn't have infant tubes 6fr...?
If that's the case smaller is better

DS finally did well on remicade
Gained weight etc....
Even tough his blood looked ok
He loved remicade
6-mp just wasn't enough
Good luck in the scopes

CarolinAlaska · Jan 31, 2015

crohnsinct said:
Carol: You are right. Just because her more obvious symptoms are gone does not necessarily mean the inflammation is totally under control

You won't get a fight from me on the move to Remicade or a change in diet.:thumright:

Poor Jae has been going through so much! The stress of the move coupled with not feeling well. You know your girl best, but my girls would push back on the diet in her scenario. You know I am a HUGE fan of food as medicine but maybe go slow. Work with her to pick one thing to delete and one thing to include a week.

Like I said before, I think inflammation may be playing a starring role hear. Once you get that under control I think you will have a clearer picture of where else you can improve.

In the meanwhile just try to keep those calories and shakes up.

P.S.: if you want some good food documentaries to watch pm me and I will send you a list. Watching a few of those is what got my family bought in. When mom speaks all they here is "blah blah blah" But when they watch the movies and see doc after doc and patient after patient talk and when it is on the "screen" it is suddenly magical.

Yes, I'd love to see the list. Sorry, but I think the sugary drinks have to go...

CarolinAlaska · Jan 31, 2015

Maya142 said:
Poor Jae I hope her GI can figure something out so she feels better soon. Remicade works like magic for so many kids, maybe it would do the trick for her :ghug:

Regarding the tube, did it have a stylet (wire) in when she tried to insert it? It's much easier with one, M could not do it without one. Also, we used a really small one, 6Fr, which is used on babies.

I don't know if she kept the wire in, but it is a 6fr

CarolinAlaska · Jan 31, 2015

my little penguin said:
Hugs if I remember correctly they place she tried at the hospital didn't have infant tubes 6fr...?
If that's the case smaller is better

DS finally did well on remicade
Gained weight etc....
Even tough his blood looked ok
He loved remicade
6-mp just wasn't enough
Good luck in the scopes

The first one they tried was bigger and weighted. Then when they did it later it was smaller. The practice one she has now is 6 fr but it doesn't have a guide wire.

Maya142 · Jan 31, 2015

It's much easier it insert if you insert it with the wire in. Once it's in place, you pull the wire out and it's much more comfortable. Without the wire, M found it really really hard to insert because it's so thin and flexible, sort of like spaghetti.

CarolinAlaska · Jan 31, 2015

So, I've talked myself out of doing the scopes this week. Here is why. I think we're going to switch doctors, and I think it would be better to have the new doctor do the scopes rather than she having to take someone else's opinion. I'm going to talk with her Alaska doctor on Monday to see what she recommends.

crohnsinct · Feb 1, 2015

AW! I am sorry it had to come to this but I think a different doc is needed here. The fact that you cancelled scopes speaks volumes as to your distrust of your doc.

I know you are already on getting a new docs name. Did you check the doc directory here on the forum?

New doc may have quite a waiting time to get in and then even more waiting for scopes. I will be praying it all moves quickly for you.

Absolutely agree on those sugary drinks! First documentary to support that task is Fed Up. It is all about sugar.

A few other people have asked me for that list so I will post it in the diet section.

kimmidwife · Feb 1, 2015

Good luck with finding a new doctor. I think you are making the right decision.

CarolinAlaska · Feb 23, 2015

We're heading to see the new Peds GI tomorrow morning. I'll let you know how it goes.

DustyKat · Feb 24, 2015

I hope all goes well and the new doc proves to be a fab one. :ghug: Good luck!

Dusty. xxx

my little penguin · Feb 24, 2015

Good luck !

kimmidwife · Feb 24, 2015

Good luck! thinking of you guys!

Maya142 · Feb 24, 2015

Sending so much luck:goodluck:!

Farmwife · Feb 24, 2015

Have a safe trip. It's a horrible blizzard up here.

CarolinAlaska · Feb 24, 2015

Clear weather here so far. For that I am grateful. We arrived with plenty of time to spare.

lenny · Feb 24, 2015

CarolinAlaska said:
Maya, she has tried several times to self-insert, but hasn't ever been successful.

I'm sorry your child is suffering again. I think people are different inside and the tubes go into some more easily than others. I never noticed that my son's nostrils are on the small side, until they came at him with that tube.

He drinks his Peptamen.

CarolinAlaska · Feb 24, 2015

Okay, so, Jaedyn and I went to Chicago today to see the new gastroenterologist. We really liked her. We are on the same page. Unfortunately, our Alaska GI's office did not send the records that we requested a month ago. Dr. G, the new pediatric gastroenterologist, wants to do scopes on her again to follow up. She also thinks that we'll probably need to repeat the pill camera. After that is finished, she thinks that it might be a good idea to change her medication to something else (specifically mentioning Remicade or Humira). Jaedyn has been on 6MP for about a year and a half, and it has not put her into remission. Last night I wrote up a whole page about my current concerns and what brought us to this point, and Dr G actually read it before she came into the room! That made me happy. She asked Crohn's pertinent questions, and Jae was much more cooperative with her and got involved in the conversation. (Jae wouldn't talk to the last gastroenterologist because he was a man. I didn't feel like we were on the same page either.)

At this point, Dr G is going to get and read the records and call us to schedule the scopes in 2-3 weeks.

my little penguin · Feb 24, 2015

Glad you got in with a good doc who gets her
Hope you get the scopes soon

ChicagoMom · Feb 24, 2015

CarolinAlaska said:
Okay, so, Jaedyn and I went to Chicago today to see the new gastroenterologist. We really liked her. We are on the same page. Unfortunately, our Alaska GI's office did not send the records that we requested a month ago. Dr. G, the new pediatric gastroenterologist, wants to do scopes on her again to follow up. She also thinks that we'll probably need to repeat the pill camera. After that is finished, she thinks that it might be a good idea to change her medication to something else (specifically mentioning Remicade or Humira). Jaedyn has been on 6MP for about a year and a half, and it has not put her into remission. Last night I wrote up a whole page about my current concerns and what brought us to this point, and Dr G actually read it before she came into the room! That made me happy. She asked Crohn's pertinent questions, and Jae was much more cooperative with her and got involved in the conversation. (Jae wouldn't talk to the last gastroenterologist because he was a man. I didn't feel like we were on the same page either.)

At this point, Dr G is going to get and read the records and call us to schedule the scopes in 2-3 weeks.

I'm so glad you had a good experience with Dr. G! I hope things just get better and better from here on out.

Is your daughter going to Camp Oasis in Wisconsin this summer?

Maya142 · Feb 24, 2015

So glad you have a good doctor! Makes all the difference.
Hope you can get scopes scheduled soon.

CarolinAlaska · Feb 24, 2015

ChicagoMom said:
I'm so glad you had a good experience with Dr. G! I hope things just get better and better from here on out.

Is your daughter going to Camp Oasis in Wisconsin this summer?

We're in the process of signing her up, but we are financially strapped this year and are depending on scholarship help... hopefully she can go.

kimmidwife · Feb 25, 2015

Very very glad to hear about this new doc! It really makes a difference when you find a good one!

crohnsinct · Feb 25, 2015

Sounds like you have landed with a doc you can work with. I hope she helps get Jae up and running in no time. :rosette2:

SupportiveMom · Feb 25, 2015

Scopes are really a good idea. So much can change and sometimes docs like their own technicians better. It is great you have a thorough doctor. Gives you a better peace of mind!

DustyKat · Feb 28, 2015

So fab to hear the appointment went well and the GI is one you can work with!

Dusty. xxx

Sascot · Feb 28, 2015

That's great the new doctor was good. Makes such a difference. Hope the new med works well

Mehita · Feb 28, 2015

Hopefully, this is the just the beginning of lots of good news. So glad to hear Jae seems to like her. I think it makes a world of difference, especially when they hit the teen years.

CarolinAlaska · Mar 17, 2015

Here we go... Jaedyn is in the process of a cleanout for the scopes tomorrow morning. She is doing well - old hat now! A much different experience than 2 years ago!

For the past 3 weeks we've done a whole 30 diet. I don't think it made much change for her, unfortunately, but her weight has been stable (went down to 94, but last weight was her usual 96). She looks frightfully thin, however!

I really miss our pediatrician in Alaska! She was on the ball. The pediatricians around here wouldn't take us either do to our insurance (private) or due to the fact that their practices are full. She will be seeing a family practice doc, and I'm not sure she'll get as good of care as Dr. Schramm in Soldotna gave her

. I may have to switch her to Peoria (40 min drive) if it doesn't work out.

I took daughter #2, Eliana, to see the above mentioned family practice doc to establish care. He wants us to try Zantac 75 for her recurrent abdominal pain issues for 2-3 weeks to see if it makes a difference. She has been doing better on our Whole30 diet, so I'm thinking it may be something in her diet. She probably won't be able to maintain this diet forever, however... For now I will start the Zantac once or twice a day if the problem returns and go from there. I also think she needs a methacholine challenge test to see if she has asthma. She has very low exercise tolerance and says she needs to stop when she runs because her chest hurts.

I'll let you know what we find out with the scopes on Jaedyn tomorrow.

my little penguin · Mar 17, 2015

Can you get E in to see a pulmo?

Glad J is getting a scope soon ...
Hope you get answers and a plan

CarolinAlaska · Mar 17, 2015

I'll look around to see if there are any allergy/asthma docs in the area...

Tesscorm · Mar 17, 2015

Good luck tomorrow.

Re finding a ped, we have LOTS of doctors here who refuse new patients because their practices are full, however, many of these doctors will take a new patient if they have a chronic illness. (Although, not sure how it would be to be with a doctor who is overworked and rushed??) But, if you are not happy with current doctor, might be worth mentioning to the peds who have refused to take on Caitlyn due to full practices.

kimmidwife · Mar 17, 2015

Carolin,
Good luck with the scopes! I know what you mean about trouble finding doctors. We have the same issues here.
They made the exact same reccomendation to my daughter who was having stomach pain. Try Zantac. It seemed to help a little for a bit but now we are going in for an eval with the GI. We are praying she does not have IBD too. Praying your second one also doesn't!

CarolinAlaska · Mar 18, 2015

The scopes went fine after they finally got an IV in her. They didn't see much disease except a little redness at the ileocecal valve area. Story of her life... if she's okay, then why does she weigh 93 lbs at 5'8", and why does she hurt most mornings! She had a different doc do the scopes. We'll see her new doc for follow-up on April 2.

Jmrogers4 · Mar 18, 2015

Another pill cam in order? Jack's scopes were good but MRE showed inflammation in small intestine. Wasn't that where they found stuff originally with pill cam? Once we got that under control weight and growth took off for Jack.
Glad scopes went well.

crohnsinct · Mar 18, 2015

She isn't fine until the committee says she is fine. I vote small bowel imaging! I will let doc pick mre or pillcam.

lenny · Mar 23, 2015

At 23, my older son started having a pain in his stomach, not his bowel. So, he got scoped, but they found nothing. He still has the pain at 27 and says it's always there a little, but worse if he's hungry. I think it goes from a 2 to a 5. No one has any idea why.

kimmidwife · Mar 23, 2015

Lenny,
Has he ever had an MRE or pill camera?

crohnsinct · Apr 2, 2015

Good luck today!!!!! Hope they have some answers for you!

CarolinAlaska · Apr 3, 2015

crohnsinct said:
Good luck today!!!!! Hope they have some answers for you!

Thanks. They pushed off her appointment until today at 11. Heading to Chicago soon.

CarolinAlaska · Apr 3, 2015

We're back from GI. As I expected, she wants to do video pill cam next. She also wants her to do another TB skin test in preparation to changing to a biologic after. Jaedyn was exactly the same weight and height as 5 weeks ago - 96 lbs, 57.5 inches. She mentioned "ruling out IBS first" which nearly set me off. I asked her why she couldn't gain weight and if it was IBS. She realized quickly that that was the wrong thing to say to me and backed up saying something about needing the pill cam done before she changed meds because "once we start Remicade, there's no going back." I just want Jaedyn to be healthy... is that too much to ask? Scopes and biopsies were normal. I didn't get a copy yet.

Farmwife · Apr 3, 2015

No that's not to much to ask.:ghug:
Good for you on standing up for J.

I hope the Pill cam gives some answers.

HUGS

crohnsinct · Apr 4, 2015

CarolinAlaska said:
We're back from GI. As I expected, she wants to do video pill cam next.

Glad she sees it our way! Committee approval granted. When is it scheduled? The committee likes to fast track these things!

CarolinAlaska · Apr 4, 2015

I tried to get it scheduled, but the number that she gave me to call to schedule it gave me a voicemail. The voicemail said that I had to call my GI's office to schedule things. When I called their office, they were already closed for the weekend. Super frustrating! I really want to do it Monday or Tuesday while she is on spring break.

Maya142 · Apr 4, 2015

Really hope they can get you in for the pillcam soon. It's so frustrating to have to jump through hoops for Remicade, but I suppose your GI does really have to see the disease since J's scopes didn't show much.

IBS is completely ridiculous though :yrolleyes:

crohnsinct · Apr 4, 2015

IBS=I Be Stumped :voodoo:

CarolinAlaska · Apr 10, 2015

Well, we've had a busy week. Jae saw the GI on Friday, as I mentioned. On Wednesday she saw a new pediatrician - she hadn't seen any general practitioners since moving to Illinois. We really liked her, although it is a 50 minute drive to see her (no pediatricians closer would see her). She found that Jaedyn has scoliosis. It has never shown up before. Also she found that her right leg is an inch shorter than her left (which when corrected makes her back worse). Her right foot is also 2 cm shorter than left. The doc was concerned about spinal shearing/splitting. She referred us to a pediatric neurosurgeon. Yesterday we spent the day in Chicago for pill cam. Today I took her in for back xrays. The curve is 20 degrees, so she is also referring her to orthopedic surgeon. Sigh. So much for spring break, poor girl. We should get pill cam results next week.

kimmidwife · Apr 11, 2015

Very sorry to hear about the leg shortening and the scoliosis. Hopefully it can be resolved with out any surgery needed.
My oldest had one leg shorter then the other and after a few years it evened out on its own. Hopefully it will be the same for her.

CarolinAlaska · Apr 14, 2015

I'm taking little sister, E, to pediatrician tomorrow. Her symptoms include chest pain (pretty sure it is esophagus), frequent complaints of abdominal pain, bloating and gassiness, diarrhea or constipation, gluten intolerance, frequently missing school - about 1+/week. The first doc recommended ranitidine, which helps the chest pain, but didn't resolve the problem. Today she woke with pain behind her knees. What tests should I insist on for starters?

E is 10 and still wets herself a little frequently. It smells bad, but UA in past has been okay. Previous pediatrician said it was hygiene related, but odor can come even if she takes a bath that day.

CarolinAlaska · Apr 14, 2015

crohnsinct said:
IBS=I Be Stumped :voodoo:

Our new pediatrician hates that diagnosis. I told her what you said it stands for, and she came back with you mean "I Be Stupid".

crohnsinct · Apr 14, 2015

Love your new ped!!!

I would be asking for full blood tests including Celiac panel....and of course my favorite fecal calprotectin! While they are at it, ask them to throw in vitamin and mineral testing. B12 and D for sure. Iron panel.

I heard a doc speak on gluten intolerance once and mentioned frequent bed wetting...not sure if it correlates to E's situation but Celiac would be high on my list of suspicions.

Mehita · Apr 14, 2015

But, she needs to be eating gluten at the time of testing.

kimmidwife · Apr 14, 2015

CarolinAlaska,
That is interesting about your daughter and the urine issues because my daughter had them for a very very long time. She would leak a little if she didn't run to the toilet. Having her go at Regularly scheduled times helped. The doctor said i
She had a small bladder. I don't know if that is true or not. It she seems to have outgrown it finally when. She hit puberty.

CarolinAlaska · Apr 15, 2015

Well, the ped is giving E a good workup. CRP, ESR, IBD panel, celiac panel, TSH, FREE T4, a fecal calprotectin, and allergy panels. She also had an abd xray (looking for stool backup).

CarolinAlaska · Apr 15, 2015

kimmidwife said:
CarolinAlaska,
That is interesting about your daughter and the urine issues because my daughter had them for a very very long time. She would leak a little if she didn't run to the toilet. Having her go at Regularly scheduled times helped. The doctor said i
She had a small bladder. I don't know if that is true or not. It she seems to have outgrown it finally when. She hit puberty.

Kimmidwife, I am wondering today if it is caused by bloating and stool backup pushing on bladder.

crohnsinct · Apr 16, 2015

^i have heard that theory a number of times on here so maybe!

CarolinAlaska · Apr 17, 2015

I missed the peds phone call. E's IBD panel looks normal. Her sed rate is elevated at 22 (normal is 0-10). Respiratory allergens: most of the trees, ragweed, grass are high. IGE is 413 (normal is <100). Food allergens: elevations in wheat, corn, peanuts, tomatoes. Interesting, because she is gluten intolerant. TSH and free thyroxine levels normal. CRP also normal. Celiac panel is pending, as is fecal calprotectin, which we haven't brought a sample in for yet. XRays of abdomen: backed up with stool throughout.

What are your thoughts?

my little penguin · Apr 17, 2015

High IgE overall will hyperinflate individual IgE RAST values and tends to give false positives.
It is not reccomended to randomly ( panel test ) for IgE allergies unless an actual allergic reaction to the food has been seen . Food challenges in the allergist office are the gold standard therefore if you are able to eat a single serving of a food without reacting your not considered allergic.
This is completely different from food intolerance
Additionally kids who test positive to grass and tree pollens also tend to test false positive to food with similar protein structure - hence the wheat corn etc.....

This why allergist are better way to go for figuring out IgE allergies

Sed rate any infections in the past couple of weeks that needed abx?

CarolinAlaska · Apr 18, 2015

No, no antibiotics needed. Just allergic rhinitis symptoms, constipation and a big-time stool backup. She also gets dizzy. Perhaps a cold a couple of weeks ago. What does the high igE tell us?

my little penguin · Apr 18, 2015

Nothing other than she has environmental allergies that probably need treated
Once they are treated ( daily antihistamine and allergy shots ) . The number should go down
The number is high but not extremely high like jobs syndrome etc....

Mehita · Apr 18, 2015

You might want to ask around in your new area what the allergy seasons are like. A bit of a change from Alaska I'm assuming.

CarolinAlaska · Apr 18, 2015

Elli didn't really have much problem with allergies in Alaska. She's now on Claritin and Flonase. I'm giving her some dulcolax to help clear out her bowels today. The doc didn't say what to do yet, the nurse just said she was backed up. I'm hoping for functional problem, not IBD.

For those of you whose children primarily have constipation, what was their clinical picture like? Frequent abdominal pains, bloating, gas, dizziness, food intolerance?

CarolinAlaska · Apr 21, 2015

I almost didn't send the Fecal Calprotectin test. I know that it's so expensive! Today E woke up nauseous again. I feel like such a mean mother to make her go to school, but she has missed so much! She is failing English and Math. Due to missing work. Last night she passed a stool that was the size of a large baked potato! My husband told me this after having to break off a sample for the fecal calprotectin test. I think she must feel these kind of stools are normal because she never tells us about them. They do explain her tummy aches, loss of bladder control, nausea, etc. I did send the stool in because I need to know: Is this normal, or is it a different variation of IBD...?! Still waiting to hear from pediatrician as to suggestions to treat the constipation. In the mean time I've given her a couple of dulcolax on a couple of occasions just to get the ball rolling.

Yesterday Jaedyn and I saw her neurosurgeon. He felt her symptoms were significant and ordered an MRI of thoracic and lumbar spines. She was sick this morning again, and also last Saturday. I do hope the GI calls with the pill cam results today and gives us a plan to move forward!!! I'm finding myself crying easily today and also barking a lot at the kids - as if all this sucky stuff was their fault! Is there no end to it?

crohnsinct · Apr 21, 2015

Aw Carol! You certainly are juggling quite a few balls. easier said than done but try to take it one day at a time...one piece of information at a time and not get ahead of yourself.

FWIW - T has those same bowel movements. Ginormous. I wonder how it doesn't hurt. GI didn't say they are a sign of IBD but she has it so......

My oldest had horrible constipation until about 7th grade. Regular toileting times, high fiber foods, LOTS of water and exercise. Eventually her GI had us doing mega doses of Miralax to get things really soft and moving and very slowly wean off from it. We did that a few times until the problem finally subsided. She didn't have IBD.

Crohns08 · Apr 21, 2015

Just a thought but is homeschooling or online schooling an option? When I was sick and in school they would homebound me and under my 504 plan they would send a teacher to my home for schooling. It really helped me.

pdx · Apr 21, 2015

Big hug to you. I spent most of December through February crying at the drop of a hat. (Sometimes when the supermarket checkers would ask me how I was, I'd start crying. Awkward...) The stressful combo of a really sick kid (or kids), all the uncertainty that goes with IBD, and big time lack of sleep is just a recipe for tears. Hope things get better for you and your kids soon.

upsetmom · Apr 21, 2015

CarolinAlaska said:
I'm finding myself crying easily today and also barking a lot at the kids - as if all this sucky stuff was their fault! Is there no end to it?

I just want to send you a big hug.:ghug:.. Just remember we're all here for you.

Maya142 · Apr 21, 2015

Thinking of you :ghug:

Regarding constipation - both my daughters had constipation issues when they were younger, but only one turned out to have IBD (so far)! Hopefully, it's nothing but it's good to make sure. We were told to use Miralax daily for a while to sort of "re-train" my daughter's body. She was also supposed to sit on the toilet for 15 minutes every day - whether she had to go or not!

Good luck! Really hope you hear from J's doctor soon!

CarolinAlaska · Apr 21, 2015

Well, the pediatrician called this evening. One of E's Crohn's panel tests was positive for Crohn's saccharine cervical IgG (90% predictive value). She is sending us to J's GI and to an allergist.

my little penguin · Apr 21, 2015

The presence of antibodies against the yeast Saccharomyces cerevisiae (ASCA) and against neutrophils (pANCA) has been used as diagnostic serological markers for inflammatory bowel disease (IBD) for many years. The combination of a positive ASCA test with a negative pANCA test has a positive predictive value of 96% and a specificity of 97% for Crohn’s disease (CD).1 However, both antibodies have been found in other diseases, such as autoimmune liver disease, primary sclerosing cholangitis (pANCA), and in gluten sensitive enteropathy (ASCA). Therefore, their role as diagnostic serological markers for IBD seems to be limited.

From
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1774663/

Hope the Gi gets to the bottom of it quickly for you

kimmidwife · Apr 23, 2015

Sorry to hear!

DanceMom · Apr 23, 2015

Is this part of the Prometheus testing? I thought I remembered reading something of that nature on A's report. I do know that she has since had pANCA testing which was negative.

CarolinAlaska · Apr 23, 2015

DanceMom said:
Is this part of the Prometheus testing? I thought I remembered reading something of that nature on A's report. I do know that she has since had pANCA testing which was negative.

No, not Promethius. I think it was either done in-house or at Mayo laboratories.

CarolinAlaska · Apr 25, 2015

J's GI's office called. Pill cam was all clear. We'll not be changing to Remi at this time. She wants us to try Bentyl for 7-14 days and call.

E has an appt for next week with her now.

my little penguin · Apr 25, 2015

Carol
Nothing showed in DS scope MRE etc
But he still felt bad crampjng etc ...
He just started the partial EEN diet I posted
Within two and half weeks things have improved so much from the diet and lose dose pred ( arthritis flare) .
Bentyl did nothing for him but we tried it anyways .

Right now he has peptamen jr and cantaloupe ( few chunks ) and one potatoe a day.
Eventually 50% of the calories can come from the select foods permitted on the diet.

Hope the bentyl helps but I know how frustrating it can be .

crohnsinct · Apr 25, 2015

Sounds like GI is barking up the IBS tree along with the Crohn's which our GI says a lot of his patients have both. But why the lack of weight gain then? Is it an intake issue? maybe you should start a details food diary...I know! One more thing and it stinks!

kimmidwife · Apr 25, 2015

Carol,
Our doctor was barking up that IBS tree also and turned out totally wrong. Bentyl did. I thing for my daughter either.
Good luck with your second daughter next week.

Jae's update and sibling issues

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