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momofkkcg

momofkkcg

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Aug 5, 2011
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Hello all!

I have been reading your posts for a while...finally decided to jump in and say hello instead of being a creeper!! LOL!

Sorry if this gets long winded...just wanted to share our story so far and see if anyone else has had similar experiences.

My youngest daughter is 7...she has had joint pain on and off for about 18 months. Her Ped always reassured me everything was fine...so at first I didn't pay much attention. It wasn't until this past March that I became worried and started to bring my concerns to her Ped...who keeps telling me everything is fine. Lately...I have been researching her symptoms again...and Crohn's seems to fit as well. Here is the rundown:

Dec 2009...strep throat...joint pain...wants to be carried a lot!
Joint pain continues off and on...nothing major...but sometimes comes down the stairs on her butt...hard time getting in and out of vehicles. Has a few more trips to the doc...has a low grade fever seems like ALL the time...finally in March Ped does blood work...and her Sed rate and CRP are up. Everything else is normal. Told to come back after her fever is gone to recheck...at that time it's normal...doc gives the OK...and we about our lives. Sill has pain on and off...

Nov 2010...decide to have blood work checked again due to joint pain on and off still...now swelling...no redness...labs ok...so I tell myself it's nothing...we move on.

March 2011 to present...Holy cow!!

Urinary Tract infection...Klebsiella...weird!
Breaks out with rash on arms, legs, and hands...doc thinks it's viral...but will label her allergic to Sulfa (taken for UTI)

Conjuntivitis...Twice...had it so bad her Sclera'a hemorrhage!

Bad bruising on her legs...(doc blows picture I took off...says he doesn't really pay attention to bruises below the knee at this age) But after research...I think it's Erythema Nodosum...looks a lot like it...and after studying the picture closer myself...her knees also have a rash and are red...darn should have taken her in!

Low grade fever for 10 days...then says her mouth hurts...gums all swollen and red. Doc says first exposure to Herpes I...she will be fine.

Walk out of docs office from above visit...and notice she is limping...one week goes by...and she can't walk...back to the doc...hip xrays and blood work and labs....everything is normal except one thing...strep throat! No fever, sore throat...nothing...just hip pain!


I look into her growth...had an old friend ask her if she was ready for Kindergarten next year...she says...with disgust...."I'm going into 2nd grade"...I had to giggle...her reaction was a little like...Duh! Here I discover she has fallen from the 50th percentile...both height and weight...to the 13th. Yikes...trip to doc and a thyroid test...and you guessed it...she's fine. He tells me there isn't anything else that would make her growth slow down to be concerned about...she is just going to be short....ummm...now that I have read a little...yes there is!

No diarrhea...but a lot of "My tummy hurts".

I asked my Ped for a referral...now here is the kicker...I used to work with him...for seven years! We had a great relationship! He says..."If I thought there was soemthing wrong with her I would have referred her"...Yikes...he was mad..and I felt terrible! Took me 3 weeks to finally call the immunolgist/Rheumatologist that he did recommend!

Now that I have read more about Crohn's...I wonder if I may be barking up the wrong tree with a Rheumy...but I'm hoping, also specializing in Autoimmune disorders, that he will be able to see if it is Crohn's as well. Has anyone ever experienced something similar...sore mouth and tummy aches are really her only GI symptoms...

I'm so worried about her...and this upcoming appt....and I'm also worried I'm too worried!! UGH!! I'm going nuts!!

WOW...thanks for listening...sorry it was sooo long!

Lisa :ybiggrin:
 
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Hi Lisa,

Your poor daughter - certainly isn't fair for anyone that age to not be feeling well!

Not sure what you mean re 'sore mouth' but prior to being diagnosed, my son complained about canker sores on his gums. I didn't think much of it (he'd just started using a new toothbrush, we thought that was the cause...) but it turns out that it is a symptom of Crohns... His other symptoms were unusual tiredness, fever, weight loss and diarrhea.

I hope you get a diagnosis soon so your daughter can start feeling better!:smile:
 
Tesscorm....Thanks so much!! The sore mouth is mostly swollen red gums...she complained her mouth hurt...and I had noticed her gums being red...she has only had two actual canker sores...but I assumed it was the Herpes the doc had thought it was. She has been sitting around more...but it has been so blasted HOT! She doesn't really have weight to lose...but she hasn't gained much in the last two years...4 pounds I think.

I hope your son is doing well...thank you so much for your reply! I appreciate it!

Lisa
 
Hi Lisa and :welcome:

I'm so sorry to hear about your daughter...:(

So many of the symptoms you describe do have the potential to be EIM's (Extra Intestinal Manifestations) of Crohns. Rashes, joint pain, eye problems, mouth ulcers, slowed development....they all fit. Chronic inflammation will slow a child's development and the fact that her ESR and CRP are elevated may well be the reason for the slow down. Neither of my children suffered with diarrhoea and this is not uncommon if your CD is located higher than the large bowel.

Do you keep a symptom diary? If not have a look at the suggestions we have in the wiki forum here. They really are helpful as it is easy to forget the little things when you are living this day in and day out. Then take it with you to every appointment you have, no matter who the doctor or health professional. It is hard for them to refute evidence that is in black and white.

Good luck hun and I hope you get solid answers soon. Trust your gut, you know your daughter better than anyone and if need be get a second, third, fourth or how ever many it takes opinions until you are satisfied.

Welcome aboard...:hug:
Dusty. xxxxxxxx
 
Hi Lisa! If she's 7 and feels like she's 80, something is definitely wrong!! Whether or not it's IBD, keep pushing till tou get the right answers and a treatment plan that helps get her childhood back on track. Best of luck mom!
 
Hi Dusty and Mark!!

Thanks so much for the encouragement and welcome!

I did start keeping a Diary the past few months...I wish I has started earlier! I won't be able to tell the doc anything from 2010...I was only a little worried at that point...and her Ped had reassured me everything was fine.

It's just so nice to have other people raise an eyebrow to her symtpoms...her doc isn't concerned and neither is my husband. He sees her running around when she is feeling good...and she will when she feels crappy too...and says...."see she is fine". I'm pretty certain she is not....but I hope I am wrong!

I hope your kids are doing well! It breaks my heart to see so many children suffering! My daughter is doing well at the moment...not much for complaints for about two weeks!

I'll keep you informed....and I'll check out this Wiki thing!!

Thanks again!!

Lisa
 
Hi Lisa,
Welcome. I can relate to your situation so much. I felt like I was the only one with radar picking up on Danny's symptoms at first too. He is still undiagnosed. In the beginning of his illness random severe joint pain was as much as a symptom as diarrhea was. I think going to a rheumatologsit is a good idea. They can do a slew of blood work that will check for things like Rheumatoid Arthritis and Lupus. We took Danny to a well known rheumatologist when he was first feeling ill. (Danny had a raised ANA at the time.)

Have you read the letter to people without chronic pain?
http://www.wellsphere.com/chiari-ma...n-t-on-dealing-with-chronic-pain-folks/174990

It talks about how some days are better than others. I also like the part about being happy .. not necessarily healthy. Danny is sincerely happy when his cousins are here and I know it makes it hard for others to understand he is ill. If only they saw him right after the party.

Good luck.
 
Hi Jeanne!

Thanks for the Welcome...and it is sooo great to have someone who can relate!! I read Danny's story....Ugh!...how hard is that to not have a diagnosis of any kind...and no relief of symptoms!??!! Poor guy! I had a hard enough time just asking for this one referral...I can't imagine seeing several doctors...in your case much more! How frustrating!!

I have had a hard time with this upcoming appt....second guessing myself. I don't want to over react! I don't want her to have tests she doesn't need! I don't want docs looking at me with.."oh..here she comes again"...attitude! It took me three weeks to make the appt after I asked for the referral...then I talked to a triage nurse before I made the appt...she was great...and she agreed it was appropriate to make an appt. So...we shall see what happens! I'm scared I'm right and something is wrong...and I'm scared I'm wrong and she will have testing that isn't needed! I'm scared if I do nothing she will continue to get worse and may suffer long term damage!! I'm so torn!!! This sucks!

I hope Danny is feeling well...keep me posted on your struggles and triumphs!! Good luck to you!!

Lisa

P.S. With Danny's joint pain...was there ever redness or swelling?? Gracie never seems to. I am curious if a Rheumy will pick up on swelling I don't notice??
 
Lisa,
Until my son started to have his crohn's treated, I think he didn't know what 'Feeling Really Good' felt like. I think he was having symptoms long before they became obvious to us...diarrhea. I always thought if he was having 'logs' then he was doing good. He always had lots of energy, kinda a bit grouchy, small for his age...I thought these were all personality traits. Now that he REALLY IS feeling good, he's a different kid. I was in denial and had doctors cramming the crohn's thing down my throat...sounds like you have a doctor in denial. You are a good mother, keep investigating. Maybe its not crohn's (and hopefully isn't) but you are doing the best thing in checking it out instead of excusing everything away.
 
Hey Lisa,

My daughter was undiagnosed for 18 months and it was heartbreaking to see the pain and distress she was in, it still breaks my heart now when I think about the level of pain she must have been in :( . It wasn't until the last month of that undiagnosed period that things became intense so prior to that she would have a "bad" day and then carry on for next few days as if nothing had happened. I knew something was up, just couldn't pinpoint anything and Crohns wasn't even on the radar.

She also suffered with joint pain, mainly knees, and it never involved redness or swelling. It was invisible to the eye so something that was easily dismissed as "growing pains".

:hang: Mum! You're doing a great job and are a wonderful advocate for your daughter. :)

Dusty. :hug:
xxxxxxxx
 
momofkkcg said:
P.S. With Danny's joint pain...was there ever redness or swelling?? Gracie never seems to. I am curious if a Rheumy will pick up on swelling I don't notice??
Click to expand...

Hi Lisa,
Never any redness or swelling on his joints. The joint pain usually only lasts for 2-3 days, so he never had any while at the rheumi. We did take him to the Ped the first time he had joint pain (ankle) but she said it looked fine.
 
Just jumping in here ...
Gabrielle has arthritis from her CD.
We didn't even know her joints were swollen, just very painful. When we went to the Rheumi he showed us that her knees were indeed swollen. So yes, it is possible for the doctor to pick up on swelling you don't notice.
I hope you get some answers for your daughter soon Lisa :)

hugs,
~T~
 
Hang in there and don't give up. When Brandon was finally diagnosed at 7 years old I realized all the symptoms from colic as an infant onward were signs.
Brandon had joint pain and I didn't notice the swelling in his knees and wrists but the rheumy did.
Trust your own instincts. We just saw our GI again. About 10 days before each Remicade infusion he gets lots of open sores on his legs and arms. It's happened three times now. The Doc said it's mosquito bites!! Funny how he only gets bitten when the Remi wears off! Trust me it's not mosquitos!!
I hope you get answers soon
Trina
 
Thank you so much for your responses!!

It's so nice to hear your experiences!! It helps me so much! It may sound silly...but it's a relief that some of you saw little things going on (or not so little in some of your cases)...and decided to ask questions. I was so nervous to ask for the referral...and when I did....because of my Ped's reaction...I second guessed myself.

I hope her upcoming appt will shed some light on things...or at least make me feel better if a Specialist can also tell me she is ok!!

Thanks everyone!! I hope all is well with you!!

I'll keep you updated! In-take appt is the 16th...then we go bak to meet with the doctor after test results are back...that is Sept. 7th.

Lisa
 
Klebsiella isn't a common bacterium unless you have a compromised immune system. I know it doesn't mean that only people with immune issues can get it, but how could that not raise a flag with the doctor?
I've started out going to a rhuemy and as wonderful as she is, she only looks at stuff in her line like RA. I would press to see a GI as well. Maybe find a new pediatrician?
 
Carrie630 said:
Klebsiella isn't a common bacterium unless you have a compromised immune system. I know it doesn't mean that only people with immune issues can get it, but how could that not raise a flag with the doctor??
Click to expand...

I know it!! AND last year she got lymphangitis from Staph epidermidis in her foot....AND at the very same time the ER doc noticed a rash I had not...he cultured it...and it was Pseudomonas! All three of these are opportunistic bacteria. I really don't know why the docs have not been concerned...but for the longest time...they weren't...so I wasn't. I changed my mind after the UTI from Klebsiella though...too many to be a coincidnece.

The doc she is seeing is actually a Rhuematologist/Immunologist who has a special interest in Autoimmune disorders....hopefully it's a good place to start anyway!!

Lisa
 
My daughter has had some really weird symptoms for the last couple of days. Last night she was awake for 2 hours in the middle of the night with a tummy ache and her right eye was hurting....really don't get the eye thing...it looks fine. But today she had the diarrhea...uh oh...that's a first! Just once..that was it. THEN tonight she had chest pain and LUQ pain...stopped just about as quickly as it started....huh...wonder what this is about??
 
Sarah's symptoms, although not exactly the same would come on quickly, last a few hours and then it was as if nothing happened for about a week and then it would happen all over again. She nearly always had eye pain though when these episodes occurred.

Dusty. xxx
 
Tesscorm said:
What's the connection with the eye pain? Just wondering...
Click to expand...


If you have Crohn's disease you are at greater risk of inflammation in and around your eyes. When the clear covering of your eye is inflamed, the result is "pink eye" or conjunctivitis. When the inflammation is in the outermost layer of the white of your eye, the result looks the same but is called episcleritis. These surface inflammations are more annoying than dangerous.


A more troubling inflammation can occur inside your eye, in the uvea (or iris), called uveitis (or iritis). Uveitis can also result in a red, painful eye, though it may not be noticeable at all. Other symptoms may include light sensitivity, headache or unequal pupil sizes. The inflammation inside your eye can also reduce your vision and may have lasting effects.


If you have Crohn's disease, you must schedule eye exams at least once a year to ensure the health of your eyes. You should also be aware of changes in your eyes such as redness, pain or sensitivity to light.



Read more: The Effect of Crohn's Disease on the Eyes | eHow.com http://www.ehow.com/about_5108603_effect-crohns-disease-eyes.html#ixzz1Uma3EQqf
 
Don't be afraid to fire your doctor!!! I know you're going to a specialist now, but I just want to post this for the benefit of other confused/concerned parents who might read it:

If your doc isn't responsive to your concerns, ask your friends for recommendations. Ask your coworkers. Search on Google. If you have to, pick a guy out of the phone book and go see him, then if you have to, do that 5 times. 10 times. As much as you can get away with on your insurance and pocket book.

Don't be afraid/ashamed to keep knocking on doors until you get somebody who will investigate, and most importantly, treat!! "Everything's fine" is not cool. Neither are half measures. You need somebody who will think hard about your daughter's symptoms and DO SOMETHING about them.

Most parents are NOT hypochondriacs when it comes to their kids, but a complacent/cavalier doctor will easily make you feel like one. Don't let them!!
 
muppet is right, if you not getting answers from your Ped, find another one. Check if they have correct chart in front of them. Once I was given wrong results.Always ask for a blood work copy and keep all of them handy. Also I'd suggest you to see an endocrinologist. Good luck with your apt!
 
I changed doctors in the same GI clinic. I either had to do that or travel 6 hours to the next good children's clinic. I love our new doctor. She admitted to us under confidentiality that she considers herself "new school" and the other guy was "old school". He was all about prednisone, and lots of it. She was very knowledgeable in crohn's and all its newest research. She actually answered our questions with extensive answers...and in ways we (lay persons) could easily understand! It was uncomfortable at first...but I'm sooooo glad we did it. She has a totally different style. She acts like we are a team fighting this disease and she also thinks about Brian for down the road...like when he's 20yrs, 30...40...even they only see him until he's 18. Its worth it to make the change if you...in the slightest...feel like you don't like or trust your doctor.

Sidenote...my dad saw a doctor for a years for checkups...then he started having some trouble, his complaint...he was having a little bit of trouble swallowing. The doctor gave all kinds of easy easy reasons for why he was having this trouble. It kept getting worse...the doc gave more easy simple reasons for why this was happening. All the while assuring him it was absolutely NOTHING to worry about. My dad trusted this guy and liked what he was saying. The rest of us were in a panic. Finally after about a year of this...and my dad could barely swallow his own spit, he went somewhere else. He had stage 4 esophogeal cancer. Now he has no voice box, breaths permanently with a stoma, had to reconstruct his esophogus with skin from his forearm, had to do 6 mos of chemo and radiation (so now has complications from that) etc. I wonder what would have been the result if in the first year of his complaint the doctor wouldn't have blown it off as 'nothing to worry about'.

Sorry this is so long :) I have no fear of firing doctors. It is our job as patients to get with the right person. The right fit.
 
hello & welcome. my daughter was undiagnosed for almost two years! time and time again her doctor kept telling me she was fine but I knew she wasnt. she did have a very sore mouth and couldnt really open it that wide because it hurt so much. she always had stomach aches and also had random joint pain (w/out swelling or redness) in her shoulders, elbows, knees and back but it would come and go. sometimes the pain was so bad she couldnt walk or carry her bag pack and other days she would be fine. doctors always doubted me but I suggest you go with your gut feeling and get her an appointment w/ GI specialists (dont worry about her doctors reaction) I know from experience that they are not always right. I hope your daughter gets the treatment she needs and starts to feel better. Good luck & best wishes :)
 
Thanks Vanessa!! Thanks for sharing! It makes me feel better to know that other people have had similar circumstances...and eventually took the bull by the horns so to speak!! Her "Intake" appt is in the morning!! I'm very nervous....and excited to hopefully have someone agree with my concerns and look into things! I hope that is the way it goes anyway!! I will feel better if someone would dig a little deeper and make sure everything IS okay!!

I'm so glad I started taking pictures of the rashes, Conjunctivitis...should have snapped some video of her going down the stairs on her butt!! But hopefully I have enough information!

I hope your daughter is doing well!! I'll keep everyone posted!

Lisa
 
Good doctors should never have bad reactions to patients getting second opinions. They take an oath to heal...sometimes the situation my be out of their realm of expertise or knowlege. They should let go and encourage you to do whatever you can to help your child. There is no room for ego's!! I had a preemie baby and the pediatrician wanted to do all kinds of radical things, I called my sister in law who is a neonatal nurse to ask for a doctor's name for a 2nd opinion. I told the pediatrician I wanted to wait to do her stuff until I just talked to this 2nd doctor. She snapped at me, "Am I your child's doctor or not?!!" I calmly responded, "Not now." PS, the 2nd doctor ended up being the one that was right...so in this case, I'm glad I stood my ground.
 
Well she finally had her "intake" appt today...a lot of information was discussed...but basically it comes down to this....they think she has an Autoimmune disorder...but are not sure what...they did even mention we may not find out. They took a zillion vials of blood to check for a bunch of things. The Nurse Practioner was shocked at the lack of blood work my Pediatrician did...he didn't dig onto anything, just looked at the basics....and she was glad at the very least that I asked for the referral...so that made me feel much better!

The picture I took of the bruises on her legs...that my doc blew off...was Erythema Nodosum....I took it with and when she saw it...she said it right away...she even left after talking at length with us to consult the doctor Grace will be seeing on the 7th. She took the pics with her.

Soooo...now I'm fretting over what may be wrong...and fretting they won't be able to figure it out. I know Autoimmune disorders can be so tricky!!

Anyway...good news...I'm not a psycho mom...lol...bad news...I was right.

Thought I would give you all an update!! You have been so great!! Thanks!!

Lisa
 
Whatever it is Lisa, I hope they find a treatment to keep it under control! Good luck!
 
Hey Lisa,

Erythema Nodosum can be an extra intestinal manifestation Of Crohns. I think the main thing at this point is not to have the docs only focus on one thing. Be sure they don't just look at the Erythema Nodosum or the sore eyes or the tummy pains but they look at the whole picture.

Dusty. xxx
 
Thanks everyone!!

I'm pretty comfortable with their approach so far. The NP really listened and she wanted to know everything and what order they occurred in....she started us from delivery to present. We handed her pics of rashes and Conjunctivits as they came up in the health history...she said we were her A+ Patients of the day! Lol...she was great with Grace and had her laughing a bunch!!

After we were done with her history...and after she left to talk to the doctor...she leaned up against the wall and said that Erythema Nodosum is an Autoimmune disorder in itself. But she said we need to find out why she had them, and her other symptoms. So she rattled off a few things that could be going on...Rhuematic Fever, Sarcoidosis....and when you look up Sarcoidosis.....it has a lot of similar symptoms to Crohns....rashes, joint pain, eye involvement, and Erythema Nodosum....So now I'm thinking how in the heck they are going to figure this out??

I'm frightened that since she is doing so well at the moment...they won't find anything...they will want to watch her...wait for the other shoe to fall....and hopefully it never will. But my fear is that damage is being done somewhere in her little body....and we won't be able to figure it out until the damage is severe enough for other symptoms.

You know what??!! These Autoimmune problems really suck!! :mad2:
They are sneaky and hard to treat...sometimes mild...sometimes severe....

Wow!! I applaud you all for learning to cope and carry on with what you have been dealt with....give yourselves a big pat on the back!! You help not only your children....but others around you! You are so strong!! And I appreciate all of your responses...you have helped me greatly! I have been able to come here and share my concerns and you have been great!! I haven't even talked to my friends...I can't...I'm scared too!

You rock people!! :thumright:

((HUGS))

Lisa
 
It's just a different Autoimmune disorder...Crohn's involves the GI tract...Sarcoidosis involves the lungs....

I don't know why she mentioned it...Grace has had zero lung problems....but I think they are just looking at every possibility at this point.
 
momofkkcg said:
But my fear is that damage is being done somewhere in her little body....and we won't be able to figure it out until the damage is severe enough for other symptoms.
Click to expand...

Hi Lisa ... I share this fear too. (Which I why Danny has been seen by over 30 doctors now) We take things one day at a time. Somedays I have more fight in me than others. 2.5 years is a long time and the false Cystic Fibrosis diagnosis Danny received earlier this year really took the wind from my sails. Even if things get worse, at least then hopefully we could figure it out. The blood tests may really help dx your daughter.
 

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