Tired the "wait and see"

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momofkkcg

momofkkcg

Joined
Aug 5, 2011
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Hello all! I haven't been here for a while....just floating around waiting for something to happen ...or not happen! Grace is my daughter who started having trouble in 2010 with a case of strep. She has had fevers, UTI's, rashes, Erythema Nodosum, joint pain, eye inflamation, slowed growth, stomach aches...and I'm sure a couple more things I have forgotten.

I'm frustrated! I recently had a friend whose child has had some heartburn and her Ped runs her in for EGD and more. Really?? I can't get anything but funny looks!

I just calculated my Gracie's BMI...15.9. But yeah Mr. Doctor...I'm sure everything is fine. She was in the 50th percentile for for Height, now 3rd, but yeah Mr. Doctor it's ok. She has stomach aches everyday...but yeah Mr. Doctor...I'll wait another 2 months and make a very DETAILED symptom Calendar...and maybe then we can see the GI doc again?

Good grief....this is frustrating...

Sorry....needed a pity party! Thanks for listening!

Lisa
 
So sorry to hear that you are having such trouble getting to the bottom of your Gracie's pain and symptoms. I do hope you get answers soon as you all have been through a lot! Hugs and support.
 
sounds like she has been on quite a few antibiotics; which can tear apart the stomach flora. Suggest you get some good daily probiotics in her. You may need to change if you do not see improvement in a week, but keep it up. Read up on it and you will see its benefits. Hope this helps!
 
Oh my goodness, your poor girl! I hope you get answers soon. Have you gone to other drs? As a last resort could you go to the er?
 
We have seen three different docs...her Primary...an immunologist/Rheum...and a GI doc...for the shortest consult ever. She hasn't been on antibiotics for over a year...well except for October with Strep again.

When we saw the immunologist/Rheum...she was having daily fevers and joint pain for months....after a zillion blood tests...which most were negative...he settled on possible Rheumatic fever type illness and tried a 3 month round of Amox. Nine days into that her fevers stopped and then eventually her joint pain. Which has been wonderful! That was September 2011.

He had hoped once we had the inflammatory whatever it was under control she would start to grow....she has ever so slightly...which is good....but she is still tiny. She is 9...her four year old cousin is the same height...6 year old cousins are taller...this was concering for me at Christmas. But you know...."you shouldn't compare".

Her Rheum mentioned last week that he wishes the GI would have just scoped her so we would know. That's when he mentioned the detailed Calendar to take back to the GI. But I DID take a detailed Calendar when we went before. Maybe a consult with a different GI would be helpful? But then I start to second guess myself....
 
All of our systems are different, but I was on amoxocyllin last year and it took me well over 8 months to recover. While on it I thought my insides were going to implode, joint pain, swollen belly, you name it. Anyway, probiotics helped me get back on track. Many studies done on it to get stomach flora balanced. Nutrition so key to helping improve health.
 
She did get worsening stomach aches with the Amox...so he prescribed a probiotic as well....which caused diarrhea...so we just stopped the Amox about two weeks early...which helped.

I do still have some probiotics...but I'm not sure if that will worsen things again...I think I will stay away from that for now. But thanks for the advice!
 
I completely understand your frustration. We are going through a similar situation.

The pediatric GI we saw fobbed us off the first time round however the next time we saw him he ordered the appropriate tests. Still waiting on results.

He also said to us that it is not uncommon for kids to go undiagnosed for years before they finally get a diagnosis.

Try your GI again it might be different this time and if you don't get the tests you need see someone who will.

One thing I've learned from all this is that I know my son better than any doctor. I know how sick he is and I have to trust my instincts and keep pushing.
 
Been there and done that for both my kids!! It is very frustrating. I really hope you can see the GI soon and ask for tests if they don't do anything I think it is time for a second opinion!
 
We went through a workup when my daughter was under 2 for Failure to Thrive. They did not think she warranted any endoscopies although she already had chronic diarrhea at that age. After lab work and other noninvasive tests, they ended up just saying she was a petite child with tall parents. Fast forward 12 years, she's never gained and has even lost ground. She's had seizures (perhaps nutritionally related?). She is pubertally delayed now which led to the full workup and eventual diagnosis of Crohn's... I won't know if she had Crohn's back when she was 2, but I will always wonder what would have been if she had just been checked then, or anytime in the next 12 years when she was so low on the growth scale... Would she be healthier now? Would she have gone through the nightmarish seizure stuff? Would she have a better self-image now?

I hope your GI doc gives her a thorough workup. The tests aren't easy or cheap, but they can give you peace of mind, or at least the feeling in 12 years when you look back and wonder if they did enough now, that they did all they could do to get to the bottom of it... Keep knocking!
 
Aw Lisa, it sounds like you are having a tough time. :(

Maybe a new GI would be the way to go, although I know that's never as easy as it sounds.

Good luck, and keep going until you find out what is going on!

X
:ghug:
 
I would get the paperwork rolling for a second opinion Gi ASAP.
It can take two to three months typically to get in.
Try a larger Ibd center
https://improvecarenow.org/about/who-we-are

In the mean time
Keep your original Gi appt since you can get in there faster.
Also try a log like this app

https://itunes.apple.com/us/app/myibd/id444728980?mt=8

It free

http://www.aboutkidshealth.ca/En/News/NewsAndFeatures/Pages/SickKids-first-mobile-app-IBD.aspx

Keep pushing it takes time and alot of effort
 
Lisa - second opinion IS in order. Love your heart. And has she seen endocrinologist since she's 3rd %?

Love your heart......

J.
 
We have never seen an Endocrinologist...but they did test her Thyroid...which was normal.

Her immun/Rheum doc (the only doctor by the way that is on board with me that something isn't right) last week mentioned maybe sending her to a Nephrologist. She always has protein in her urine which can be common in children....but in light of this possible Rheumatic fever type illness he feels it might not be a bad idea. I guess kidney damage can affect growth and cause abdominal pain as well. So he took a urine sample and will let me know next week....if the protein is still there we will go ahead with that.

When we were plotting her growth on the chart...I noticed the chart takes a slight dip so to speak...and he said that is when girls start puberty and their growth slows slightly during that time. Ha! Puberty? There is noooo way she will be doing that anytime soon! She is way too small...I'll be curious to see what happens! CarolinAlaska....that is just my fear! What if it was caught earlier (if there is anything to catch) would she be better off? Is there damage that is being done that we don't see?? I try to to dwell and just do the best I can without the doctors thinking I'm nuts! She has had nearly all of the extraintestinal manifestations of Crohn's...but no bowel symtpoms (besides abdominal pain) at this time...her IBD blood work was normal...that is why the GI doc wanted to wait and see if anything else developed.

I love this board! It always makes me feel better...I hate being the one to ask for things. I wish the doctors would just take the wheel and help me figure this out. The older she gets the more obvious that she is abnormally small....and these darn stomach aches go on and on...

BTW...since her last doctors visit she is having muscle pain in her legs....to the point that she had me help her up the steps last night to go to bed. She has had this on and off for a couple of years....muscle weakness/pain. Any correlation? It was one leg yesterday...now both legs this morning.

Have a great Saturday everybody! Thanks for the support!

Lisa
 
I would take nephrologist appointment.

My daughter is short, she has kidney problems and at 16 years she is 5" shorten than her sister with crohn's. We also had a worked done by the pedi try and find out why she is so short. All the tests come back normal but she and I both feel better it has been done.
 
I second the endocrinology referral. If it hadn't been for our endocrinologist testing the inflammatory markers, we wouldn't have gone gastroenterology. At the time Jaedyn was just having intermittent joint pains, growth failure (1-3 % for weight) and lack of appetite with occasional abdominal pains. No diarrhea, no blood, etc. The video endscopy was the test that finally showed her crohn's... after having had the upper and lower scopes and MRE be inconclusive. I hope the gastroenterologist will take all the extra-intestinal manifestations and put them together with the growth issues and choose to be thorough sooner than later. If your daughter is 13 or older and delayed puberty, now is a critical time for her to get the nutrition she needs or she will miss some valuable growing she otherwise won't get. If she can't get the scopes, then I encourage you to supplement her diet with Ensure or Boost at the very least.
 
Gracie is only 9...but in the near future puberty is expected to at least start. I just don't see that happening at all at this rate. We did try some Pedia sure...she did not care for that! Maybe if I tried another flavor it would go over better! I was thinking of starting up some Pepcid again...her Primary recommended that during one of these crabby abdomen times earlier...but I'm not really remembering if it was actually helpful.

Another interesting thing that happened last October...on Halloween of all days...my older daughter of 18 had a severe bought of bloody diarrhea. After hours in the ER and 4 IV bags of fluid she was finally able to stand up! Both of the ER docs we encountered recommended a GI consult as bloody diarrhea is not very common when your 18. So we took her to her Primary...who decided to wait on a GI consult. Now this scared the daylights out of me due to everything that was going on with Grace over the past two years. It makes me wonder if they both have it. My 18 year old has been known to have low ferritin levels (4 the last time it was checked) for years...that we can't seem to get up with supplements...although at 18...it's hard to get those in her regulary. She also had her appendix out in July. Just makes me wonder....

Thanks again!

Lisa
 
No Kaitlin is not underweight at 120...but 5'1" is her height. She never has been very thin like my youngest...I never was concerned with her stature or anything as she grew up...no chronic aches and pains just a busy girl who seemed healthy. I think her growth slowed after she hit puberty. I was alerted to Gracie's growth after I realized her clothes were never changing sizes...I would do my usual buy things at the end of seasons on sale for the next year...worked for all of my kids except Grace...it was always too big! I don't know...maybe I missed something with kaitlin...but I don't think so...
 
Work this out for your oldest. This is for cm. Take father height and your height add them together, divide by 2, take away 13cm. Compare her height to this figure.

The reason why the pedi run so many tests with Rachel, that she more than 10cm shorter than what her expect height using the above formula.
 
His height seems off, given the height of his parents or siblings.He's nowhere near the averages (see below).He drops 20 percentile points or more from one year to the next.He's gaining weight much more rapidly than he's gaining height.Puberty comes very early or very late.
In such cases, your doctor may suggest a specialist.

Most of the time, though, you just need to wait for the next growth spurt. And then you, like me, may find yourself buying your child another new pair of dress-up pants.



Inches and pounds: How much, how fast
Birth to 12 months Infants add 10 inches in length and triple their birth weight.

12 to 24 months Toddlers add 5 inches and 6 pounds.

2 to 10 yearsMost kids have settled into their growth patterns, adding about 2 1/2 inches and 6 pounds each year.

PubertyGirls grow 9 inches and gain 15 to 55 pounds; boys grow 11 inches and gain up to 65 pounds.
Click to expand...
From:
http://m.parenting.com/entry/view/id/8399?KSID=cacedcca67c9cdd4190391742f4f86c4&ints_viewed=1
 
There's no proven way to predict a child's adult height. However, several formulas can provide a reasonable guess for child growth. Here's a popular example:

Add the mother's height and the father's height in either inches or centimeters.
Add 5 inches (13 centimeters) for boys or subtract 5 inches (13 centimeters) for girls.
Divide by two.
Most children will reach an adult height within 4 inches (10 centimeters) of this estimation.

Another way to estimate a child's adult height is to double his or her height at age 2.
Click to expand...

http://www.mayoclinic.com/health/child-growth/AN01610
 
Danny's first colonoscopy came at the request of a rheumatologist. Have you told your GI that the rheumi wants scopes? This helps sometimes. If not, i would look for a new GI. Just curious, where is her constant abdominal pain located? Hope you get some answers.
 
The concern with Gracie's height was that she was anywhere from 30th percentile to 50th from birth on up....then when she got sick when she was 6 her growth stopped. The gowth chart flatlined so to speak and the line just went straight across until we hit the 3rd percentile...now she has picked up a little staying along the 3rd percentile curve. I have heard about growing about 2 1/2 inches per year...but she is only doing about an inch a year...which her Rheum is just happy she is growing at all.

Her stomach aches are usually mid abdomen around her belly button...which her Primary told me are most likely benign. We went to a wedding dance recently and she was so excited to go dancing! She danced with me for about 10 minutes and complained she needed to sit down because her tummy hurt. She tried dancing again a while later but the same results. She just watched the rest of the night. So when the stomach aches keep her from doing things she enjoys...I'm pretty sure they are significant.

I think my plan for now is to wait for the UA results and see if we go to a Nephrologist. And also keep track of her symptoms again for the GI and call them in a couple months and see if I can get her in for an appt again.

I just really hate this gut feeling something isn't right and having a hard time getting docs to investigate further since most of her labs are normal. She had a normal small bowel follow through...so maybe everything is ok? Her IBD labs were normal as well...this is why the GI decided to wait and see what happens. At the time I was ok with that...but she hasn't seemed to bounce back like I had thought she might this past year.

Thank you everyone for all of your input! I appreciate ALL of it! It's nice to bounce my feelings and concerns off of parents that are in the same boat!

Lisa
 
Hi and welcome.

What is it with little girls named Grace. They soooooo hard to figure out.
As you can see in my Sig Grace just got her dx's.
However it was YEARS of pushing and crying to get this far.
Grace never showed in her labs. She always smiled when in front of a doc and she wasn't "skinny", never mind she would eat 3 meals, 2 snacks and 1-3 Boost shakes a day just to keep her fighting weight at 35 lbs.
Still a mom knows her baby.
Keep pushing. MAKE them explain why she is the way she is.
Hugs, pm me anytime.
 
I would go back to my recommendation for endocrinology. They deal with growth failure and will keep testing and monitoring, and at one point her labs may indicate something that will trigger GI to take more action (at least that is what happened for us).
 
momofkkcg said:
Hello all! I haven't been here for a while....just floating around waiting for something to happen ...or not happen! Grace is my daughter who started having trouble in 2010 with a case of strep. She has had fevers, UTI's, rashes, Erythema Nodosum, joint pain, eye inflammation, slowed growth, stomach aches...and I'm sure a couple more things I have forgotten.
Click to expand...


I just noticed the eye inflammation. Do you know the name of it???
We have a mom Momto2girls that her DD was just dx with an eye condition that involves inflammation.
 
Another Grace! :)

Thanks FW -- yes, my daughter Gracie, was just at the eye doc this week and was found to have keratitis sicca -- dry eye syndrome -- from inflammation -- likely from IBD. Our GI was very concerned about that and we see the opthamologist tomorrow for an emergency appt. I wonder if this is what your Grace had?
 
Hi Lisa,
I have to second everyone else's opinion and say get a second opinion!
Also whatever doctor told you girls growth slows around puberty must be reading the wrong textbooks. Growth in girls increases in early puberty.
http://teens.webmd.com/girls-puberty-10/puberty-changing-body
I don't understand what is these doctors problem. I think they are just to overworked and keep pushing away patients until they land in the hospital and then they have no choice but to work them up. A BMI of 15.9 is very low. She needs to be evaluated. A nephrology and endocrine eval are fine but she needs a proper GI work up ASAP.
 
Keep trying to get that second opinion. My son's pain was just around his belly button always - it also never hurt when the docs pressed down on his tummy. Andrew's blood tests were always fine (and still are) - the only test that ever showed anything was the feacal calprotectin. That was the only reason we got to have the colonoscopy.
 
Unfortunately I did not take her to an Opthamologist at the time she had the eye inflammation! (We had been sent there earlier when she had the joint pain and everything was fine) This is how that story went...she gets what looks like conjunctivitis and I take her to Urgent care...we get eye drops. Later the next day her eyes are almost swollen shut and the sclera in one eye is BLEEDING! We go to ER...wondering is she is allergic to the drops or something...they just looked at her and pushed me out the door saying she must have blown a blood vessel while coughing...she had no cough! Went to her Primary on the following business day because no BOTH eyes are bleeding...again...its just a virus and that happens sometimes! I asked if it could be related to all of her other symptoms and he says no....fast forward to when we finally see the Rhuem...show him pictures...and he is convinced it was related and was probably Uveitis.

Soooo...now here we are...all of the extraintestional symptoms have resolved...sed rate down to normal the last time we checked...but we are left with persistant stomach aches and barely growing.

Sascot...nice to know your son had the same stomach ache location! Being I was told if it's there it probably meant nothing...what other symptoms led to the stool testing??

Thanks everyone! I have been getting such a run around I'm afraid even to see anymore docs!
 
Keep knocking on the GI's doors and tell him all you've told us and why you think he has to rule out Crohn's... Sometimes they need a good brick to knock them in the head...
 
To be honest they had pretty much dismissed it as maybe stomach migraines. Our paediatrician is very nice and thought he would send away a faecal calprotectin although he said "I doubt it will show anything"! 6 weeks later I get a phone call to say it was over 1100 and the GI would be doing a colonoscopy within a couple weeks :ywow:
After diagnosis he apologised to us - said he would never just assume again!
 

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