05-26-2011, 05:47 AM   #31
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Good luck T! And I hope, for JJ's sake, you have absolutely nothing to add to your prep thread!
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EJ dx w/ Crohn's 12/09
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05-26-2011, 05:53 AM   #32
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Dusty - Thanks for all the new threads. I read about Matt's biopsies and could not believe what I was reading in your thread!! Danny had a pillcam last summer. The first one stayed in his stomach the entire 8 hours. A subsequent gastric empy study was completely normal. Then he had one endoscopically placed in his duodendum which saw something that could be a crohn's lesion or could be debris. If I had known debris could make results harder to interpret, I would have encouraged more cleansing. Danny was told only to not eat for 10 hours. I will ask about sonograms and MRIs again. Thanks
Good luck Jeanne and keep us posted on how things are progressing.

Much love,
Dusty. xxxxxxxx
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05-26-2011, 09:03 AM   #33
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Big Big Big HUGS MOM! It is so hard with so much that you are going through! Soon, Soon, I hope all is known so you can have your answers! One of these days I will write about my boys. It might be a book though! Sheesh! I am sure you all feel like that with what has gone on & with what continues to go on!



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*John (24) CD dx 12/2006 emergency bowel resec
* Wife of John dx UC 8/2008 Remicade D/C waiting for Colectomy
*Mike (22) 5/2009 emergency surgery IBS dx
*Daniel (13) CD dx 9/2010
Meds taken...Prednisone 60 mg start, ended 12/25
Flagyl (hand Neuropathy) Vancocin for C-Diff, Prilosec.
Current meds, Zantac, Probiotic
Pentasa 1,000 mg 2x a day... since dx
Multi Vit & Cal/D
05-26-2011, 12:37 PM   #34
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thanks Julz ~

I would love to hear your boys' story someday! (if you ever find the time)!

I'm just now getting a taste of what it may be like for you, but at least after the first one, we have a good idea of what to expect with the others and aren't as "scared".
Well, maybe it's we're just not as scared for the same length of time
I don't know how you do it, and with you also not feeling good on top of it ! Geez! Supermom award for you !
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DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
05-28-2011, 09:06 PM   #35
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Ugghhh, I wish JJ had some kind of treatment for something already.
Poor kid has barely eaten in 3 days and his tummy is just hurting all the time.

He started his prep for the colonoscopy on Wednesday tonight ( our doctor starts prepping them about 5 days in advance, a little at a time).
He drank his Miralax down like a champ!
Hopefully we will have some sort of answer on Wednesday cause I really can't stand to see him suffer and there's nothing I can do

Any suggestions on what I can do for him in the mean time ?


Edit: I was wrong, o so wrong Dusty...about the putting JJ to the side burner for a bit. I hate to admit when I'm wrong LOL

Last edited by Crohn's Mom; 05-28-2011 at 09:27 PM.
05-29-2011, 12:59 AM   #36
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Awww, poor little love...

5 days! I know it's not the full deal but, yuck! . I hope he's getting something good at the end of it...

I don't know what to suggest T. Maybe pop him onto liquids like Ensure? But then again I guess he will soon be on some sort of dietary restriction for the colonoscopy.

Oh T, you weren't wrong, just trying to juggle your kids and dealing with the most urgent issues as they arise...

Much love mate,
Dusty. xxxxxxxx
05-29-2011, 02:09 AM   #37
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UMMM....at the end ?? You're kidding right ??
OH dear...we activated my old iPhone for him today in advance !
He is one happy camper about it since he has been begging for about a year !
05-29-2011, 02:43 AM   #38
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Me kidding? Using puns? Never!

Oh no, the pressure's on now T! He already has the iphone...now what?

Dusty.
05-29-2011, 04:29 AM   #39
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Whoa, a five day prep!! Is his diet restricted during this period? Sounds extreme!! Hell with a cell phone, I'd ask for a Mustang convertible!!
05-29-2011, 07:56 AM   #40
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Hi T. My daughter loves her iphone. We have not found anything to make Danny feel better - so distraction works best for him. For Danny it is video games or movies ... but I am sure an iphone works too!
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05-29-2011, 11:04 AM   #41
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Thanks Jeanne
He is loving it ! He likes his video games, but he is much more of an out doors kid who wants to be playing basketball and football at all times. Lately, he's been inside a lot due to not feeling good so momma's soft heart just couldn't resist surprising him

Dex, yes a 5 day prep, but honestly, it's so much easier on them. There are no diet restrictions until the day before the test. He only has to drink 1cap Miralax mixed with gatorade, or whatever, per day until then. It helps in getting their body ready, and there's not much cramping on the actual prep day. Gabrielle has done it this way several times and also the 'adult" way, and she will choose the 5 day prep any day !


Ahhh..Dusty....ummmm, I didn't think that far ahead !
05-31-2011, 10:13 AM   #42
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Well here goes.....Not sure where to begin? I will start with my oldest John. I asked him yesterday when he started having pain or symptoms & he said in Middle School. But I never knew anything till he almost graduated! On my husbands side of the family they always dubbed the stomach troubles as the "Theiss" stomach. You eat something then you run to the bathroom 20 minutes later. So apparently John thought he had that too like his Father & many of his Aunts & Uncles do. NO ONE has ever been diagnosed with any IBD's on either side of my or my DH's (= dear hubby) family. Only the end of his senior year in high school did he really start to complain to us about having pain & problems. But as a male & not wanting to really get into such a sensitive issue he still didn't push the issue too much & also realized if he cut certain foods out he could cut back on the bathroom trips. We finally mentioned it to his peds Dr. who sent him for all the usual first workup of blood & stool tests. Not sure of the exact time line in the very beginning. But I know by the time he was finished with his first year of college he was seeing a GI Dr. who wanted scopes & an upper GI & small bowel series done. Fast forward through the summer & not wanting to take off work because he needed the money for college. He started his second year of college having more issues & still no tests done. September & October the low grade fevers started. Constant pain & more Big "D". He would go to a little 2 bit hospital ER near his college. The first time or 2 they just did some tests & blew it off. I don't remember what they prescribed if anything but they would send him home. The next to the last ER visit they thought he had appendicitis but they were not sure. They wanted to go in & do Emergency exploratory abdominal surgery! That's when I said WOAAAAAAAA! Hold on a minute & called his regular peds Dr. & asked for advise. I gave him all the info of blood work & film results that the ER Dr. from this little 2 bit hospital in the middle of no where told me over the phone. 4 hours away from where we lived. Nothing pointed to a definite appendicitis! The peds Dr. said if it was his Son he would send him to a level 3 hospital like Hershey or Hopkins! So that's what we did. Needless to say the Dr. at the 2 bit hospital was not happy! But right after John was sent to Hershey by Ambulance this Dr. called me back & told me he had another Dr. look at the tests & confer with him. They thought that he might have Crohn's so started him on IV steriods & something to make him comfortable before they sent him on his 3 + hour trip to Hershey. That was the first time we ever heard of Crohn's. He spent 4 days in Hershey with no DX. The colonoscopy could not be completed as his bowel was so inflamed they were afraid they would perforate it. He started to feel better on the steroids & went to see his hometown GI Dr. who sent him for the upper GI small bowel testing the day before Thanksgiving. He went back to College the following Monday & the next morning he called crying in awful pain, "D" , & fever. I called his GI right away & he said go back to Hershey as his test's were negative & showed NO CD! My DH picked him up at college & drove him to Hershey ER where they did a MRI or CT? & found 2 abscesses. One over his bladder & one over his whole appendix area. The next morning they did emergency surgery thinking he had a burst appendix as they could not find his appendix on any of the tests. When they opened him up they found a perfectly pink & healthy appendix tucked under a mess of diseased infected small & large intestine. They took out 7 in. of his large & small intestine along with the appendix & the ileocecum value (spelling sorry). The Dr's still did not know what they were dealing with. Until they got the biopsy back 5 days later positive for Crohn's. The Surgeons said it did not look like Crohn's. He is not symptom free today & has had a small flare but he knows how to control it with his meds & diet. He is taking asecol (SP) & something to help solidify things as his cecum valve is gone.
Sorry so long...To this day I still feel so bad about not realizing all this was going on with him. 11 years ago my DH with our 2 middle son's was in a head on collision & our van rolled on it's side down a 10 foot hill. My DH has had to have 5 major back surgeries. It's been a lot of struggles but he is OK. A lot of constant pain. I am thankful I have my 2 boys & my Husband! It could have been a whole lot worse. It's not an excuse but an explanation of my crazy life!

Now on to Mike the second oldest. He had a lot of the same symptoms as John but tended to be more constipated at times. He started having problems in High School too. I don't think as early as his brother John though. He was DX with Neuro Cardiogenic Hypotension in High School (10th grade). He didn't complain much until his Senior year or after of stomach pain. Almost the same time line as his brother John. Same stubbornness for getting testing done too. He was is Philly going to College & had been in the ER several times for pain. The one time they did a CT they found a pocket of fluid around his appendix area. They thought it was Meakles Diverticulitis. But later testing proved that wrong. Was hospitalized for Constipation. The last time to the ER in his second year of college he had all the classic symptoms of Appendicitis but as we could not go to be with him because my MIL was dieing at the same time. ( Another Crazy Time ) He had a girlfriend with him the whole time. But again the appendix was perfectly pink & healthy. He left the hospital later than a normal appy because he had such bad pain. Also they found "Straw colored fluid". The Dr's never did say What or Why! I will say that my son got jerked around at that hospital & ended up fighting with the Dr's. After that fiasco he finally got all the scopes he was to get done & he was DX with IBS. The GI put him on Pentasas as he still ? . Mike didn't like how he felt on it & now just watches his diet closely. But still is having a issues & pain. He has a lot of stress with college & trying to work his way getting himself through. I still wonder if someday down the road his DX will change. As I think his GI Dr. does too.

Now to Daniel....for a few years he has had that issue of having pain & running to the bathroom after eating something. This was getting worse & more frequent. It would come & go always at the back of my mind if he would end up like his brother John. Last summer he started getting blood in his stool not a lot but a red flag. When we went to his Peds Dr. for a check up we told him what had been going on. He set us up right away with a Dr. in Hershey with a Peds GI specialist. Because of his brothers history. We met a month later with the Peds GI. Who wanted him scoped both ways eventually because of his brothers history also. But first wanted to try the Mirolax to soften things up as it might be causing the bleeding. His reasoning is that sometime there is hard stool at the beginning of a "D" bout that can cause cuts that would bleed. Well that threw him for a tailspin. So we set up the testing & then more things started to happen. His blood tests were elevated but not real bad. His Liver Enzyme GGTP was up slightly but all other liver enzymes were normal. Then he started having issues with his bottom. Graphic here.....He got a large pimple right next to his anus touching it. The Peds Dr. thought it might be an abscess so started him on Bactrum which caused MEGA "D" & nausea. (The Peds. GI likes to use the hometown Peds Dr. to check Daniel out when something comes up then he will see him ASAP or in the ER if needed at Hershey) Like an Evaluation person to out rule any childhood illness & not CD related too! Finally we got Daniel into have his scopes & right away he was DX with CD. The biopsy backed it up a week later. The first 2 months after DX that GGTP liver enzyme continued to go up slowly. But finally came back down to normal along with all the other blood work. As there was just a slight rise in his CRP & SAID rate.

Looking back over my childrens health issues since birth. They all were very sickly with ear infections & sore throat infections. They all had their tonsils & adenoids removed at very young ages plus PE tubes place in their ears. Daniel has had mouth sores & continues to. Never made that connection till recently. Also Daniel had a reaction to an antibiotic at age 4-5 & had Serum Sickness. He ran fevers to 105 + up & down through out the day & night for a month or more. When the fever was up he would cry out in horrible pain & could not use his arms & legs as it hurt too much. He also had 2 or 3 rashes going on at the same time. Hives, BIG HUGE strange amoeba looking rash, & reddness around his joints.

Last edited by MomofIBD's; 05-31-2011 at 11:44 AM.
05-31-2011, 11:41 AM   #43
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I'm a bit out of sorts today...
I am grateful that I have learned to never ignore my instincts; however, I just want them to be wrong today!

Austin had his upper GI and SBFT this morning, along with his abdominal ultra sound.
You know it's never good when you don't have to wait for the results , and the radiologist comes to find you.

Austin has what appears to be a stricture and cobblestonning appearance in his terminal ileum. He also has inflammation in the lining of his stomach.
The radiologist of course can not "diagnose" a patient, but he straight up told me it is VERY SUSPICIOUS OF CD, and he needs to be scoped at both ends a.s.a.p.
He said he will call our pediatric GI today and report this.

Austin is in complete denial and says he refuses to get a diagnosis and treatment because this will stop his dream of going in to the military. Oh ugghh.
I know he'll come around. Poor kid.

JJ has his colonoscopy and upper endoscopy tomorrow morning at 6 a.m.
I have a feeling it will be more of the same news for him too.

I think I'm going to go live in denial land with my son for the rest of the day....He seems to like it there...his music is absolutely blaring from his room
05-31-2011, 12:00 PM   #44
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Oh sweetie I know this is so hard! Denial away! Whatever you need to do! I am with you!
05-31-2011, 08:33 PM   #45
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Thanks so much Julz !
I'm dreading tomorrow and barely acknowledging today
what are ya gonna do right !

And I appreciate you taking the time to write out your story on your boys.
What a rough road you have traveled ..
You're one strong momma !


xoxo
~T~
05-31-2011, 09:01 PM   #46
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@Julz, thanks hun for putting all that into words and it sure one helluva ride that you have had! You are doing a fab job and you should be proud of yourself 'cause I'm sure in awe of you!

@T, Man oh man mate, where does it all end??? Poor Austin, and made all the harder with seeing what his sister is going through. I don't blame you both for wanting to run away or jump into bed and pull the covers over your head! Then JJ, I hope all goes well with the scopes, I will have you and your kiddos in my thoughts hun, as always.

Loads a love,
Dusty. xxxxxxxx
06-01-2011, 05:08 AM   #47
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Good luck with JJ today T!!

Julz, I don't believe I've seen anyone, other than Mike, dxed with IBS but pxed Pentasa! They're just afraid to call a spade a spade!...and how can they ignore family history like that??
06-01-2011, 06:38 AM   #48
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I am sorry for Austin! Hard news ... and all triggered by a jelly fish sting!
Good luck with JJ!

Julz - Thanks for sharing. I am amazed at how many kids actually get diagnosed when they are opened up. Danny is my sickest (and not officially diagnosed) but my other 2 also complain of intermittent abdominal pain.
06-01-2011, 07:15 AM   #49
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Tracy....I am with you all today in heart! It has been quite a road less traveled but so very ruff for us. I may seem strong but believe me I do loose it! As I said before humor gets me through! In fact I have to chuckle at that. You could call me a mighty Minnie at just around 4 ft. 9 in. Tall or Short! Lol! Keep us posted I am sleeping but will check in tonight!

Dusty....I look back over all that has happened & feel so much! But most of all I know it could be so much worse than it has been. It was a lot to type & still some is not there. I was proof reading & couldn't go on. One day soon I will finish the last little bit. Sometimes it all seems so surreal! Did this all really happen. Sometimes my life seems like a book with so many ongoing chapters. I would love to the happiest of ending! We found a CURE! Sighhhhhh someday soon I hope!

Dex....Mikes whole story is so twisted as the Dr's in Philly wanted him out ASAP because my son was hurting so & mad to boot that he said the Dr's dreaded "S" word that involves lawyers Right in front of the Surgeons & Dr's. We think it was the time of year to get the final last surgeries in for the Dr's in training. Since it was a teaching hospital. We should of been there! They were a level 3 Hospital! He had 3 or 4 Interns & Dr's convincing a young man in really bad pain with a slight fever that it was Appedicitis! that CD was NOT Heriditary!!! I believe after they found out they were WRONG they wanted to cover things up! We never did find out what the straw fluid was. They did apparently see a slight thickening in his small bowel if I remember correctly. His GI Dr. at home is the one who did all the scopes & testing. He is the Dr. Who prescribed the Pentasa. I think now that they have found & removed the polyps he will be having scopes in the next year or so. They will keep a closer eye on him. He is a driven young man & has trouble slowing down. It's hard to DX the CD without a biopsy to back it up or anything else that's not concrete evidence. Time will tell! The GI Dr. Said his Colon was so-twisty turny that it looked like the super Dooper looper! That's why the DX of IBS. Which could cause the constipation. But then again maybe in the back of the GI's mind he wondered if it was so early that nothing showed & somehow his gut knew it very well could be CD! Time will tell!

Thank you All!
06-01-2011, 08:51 AM   #50
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It's days like today that make me want to crawl under a rock....and this is exactly why I decided to start this thread ...


First off....JJ did great with his scopes, and pulled through like a champ! Whew!
I always worry when one of them has to be "put under"...twilight or not.
His doctor came out and talked to us when he was finished (my hubby came with us). She said everything looks great; nice and smooth and pink, etc., and she was able to get all the way through. She always gives pictures to take home with us, so I compared them to Gab's when we got home..and wow! It just reminded me all over again how sick she was and no one payed attention ;(
Anyhow, the doctor did not rule out CD as she said that the biopsy's may very well come back showing granulomas, CD, etc.
My husband wanted an explanation (as did I) as to what her thoughts were on JJ's stomach pain if it isn't CD. She didn't have an answer for us, just basically said let's wait on the biopsy's.
So on one hand she's almost insisting that there's "nothing" wrong when she first came out, then she says wait on the biopsy's because he does have a 40% higher risk, then she wanted to know again when does he see the dermatologist because today happened to be one of the days that JJ's eyes are flaring again with the (eczema). She went back and forth and my poor husbands head was spinning. (I usually do all of this completely on my own so he never hears the "medical talk"...just my take) At least he has a feel of what I go through now.

So while she was showing us a diagram of where she took biopsy's from, etc...she mentioned the terminal ileum, which led me to mention Austin's SBFT yesterday and how the radiologist said he had a stricture and the appearance of cobble stoning. She honestly looked pissed off that the radiologist had told me that ! Then she kept insisting that they "just don't know", and how it's a "narrowing" not a "stricture" and what a huge difference there is in the two. And also how they can't tell if it's "cobble stoning" from that test. Then she went and got the report and brought it back to show me the word "nodules"( i think) which she said are probably just lymph nodes...THEN she shows me the "nodules" on JJ's pictures and the "narrowing" in his terminal ileum and says "SEE , JJ HAS A NARROWING TOO AND THOSE BUMPS ARE PROBABLY NOTHING".
THEN...she says oh yeah, btw, did they tell you Austin's liver is enlarged as well ? WHAT!
Backtracking a little here to his appt. last week.....doctor insisted that the labs showing Austin's reactivated "mono" was no big deal and not that bad, and that the CMV virus that was active is a good thing and we all "need" to get that over with. Basically saying that he really didn't have "mono" again. Then today she was all about the "MONO" and blaming the CMV virus as well for his liver enlargement. (and I do realize this does happen with mono...) But this doctor is absolutely driving me up the wall at this point...and my husband as well...and she keeps going back and forth and can't decide. WTF !

I don't even know if I wrote everything here...or if my ramblings make sense...but damn it this is exactly what happened and how all of the confusion with Gabrielle ended with her suffering terrible for months and months ... all because of the 'NO BIG DEAL...IT'S JUST MONO".
I don't even know what to do now, except wait on JJ's biopsy results and keep and eye on Austin.
Do I just go ahead now and take them else where before I regret it...before they suffer? Or do I just let them both "be" and watch and wait a while more ?? I mean...I just don't know....now Austin's liver is enlarged...it wasn't 2 weeks a go.

Please give me some advice here....I'm going to loose my mind !

Edit : The only thing the doctor has is the report from the SBFT, with what the Radiologist saw. She didn't see the actual pictures herself. Why do they rely on the radiologists' report to tell them results, and then discount their results ? It makes absolutely no sense to me. And if the results don't "count" then why the hell do they do the test in the first place ?? She also said it is "normal" to have a narrowing and for the barium to not get through? Why would the radiologist be concerned about this enough to come tell me himself, and then she says everyone's like that ??
She seriously got under my skin today....can you tell ?!??!

Last edited by Crohn's Mom; 06-01-2011 at 09:22 AM.
06-01-2011, 02:49 PM   #51
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Run, run, run as fast as you can to another doctor!!!!

I hope and pray T that Austin and JJ DON"T have IBD but something is going on with your boys and they need to be seeing someone that prepared to find the correct answers and not hum and ha till the cows come home.

In view of what Gabs went through any doctor worth their salt would not question for a second your fears and concerns that your boys may heading down the same path. In fact I would think they would go out of their way to put your mind at ease ASAP no matter what the outcome.

I know you spoke highly of the docs that operated on Gabs, can you get them back to that facility to see a GI there?

If they were my boys T that is what I would do. I would cut to the chase and say to them....

"You know what I have suffered with Gabs, it is heartbreaking and something I would not wish on my worst enemy. Now my eldest son seems to be heading down a similar path to Gab when her symptoms started 9 years ago. Not only that but my youngest son, although presenting differently, also has abdominal issues. I am scared and I need to know one way or the other if they also have IBD. I can't and won't let happen to them what happened to Gabs and their current doctor is again dancing around the edges not committing to anything".

I guess what jumps out at me T is the whole narrowing thing. How is there nothing wrong with that??? Narrowing isn't normal physiology, it may turn out to be nothing serious but it still isn't "normal". Dammit T, I don't want to sound like I'm saying your boys have IBD or anything else for that matter but Austin certainly has something going on that needs to be jumped on and JJ, well unfortunately it isn't all that uncommon to experience the extra intestinal manifestations of Crohns well before the intestinal issues show up. Also just bear in mind hun that the scope only see's so much, I know you know that. Matt's large bowel is a perfect specimen too because his Crohns isn't there.

Go with your gut every time T. To be honest mate, I reckon you've got a lot more of than just your gut to go on here.

BTW, fab to hear that JJ came through the scopes just fine and handled it all so well, kudos to your kiddo!

Much love,
Dusty. xxxxxxxx
06-01-2011, 04:21 PM   #52
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Thanks so much for the "validation" Dusty
It doesn't help me much today that I am beyond exhausted and feeling pretty bad physically myself :/ I am so glad I asked JJ's dad to go with us today tho so he could hear everything as well and see that I don't make this crazy s&%^ up! LOL

In my ramblings I forgot that we told the doc this morning about JJ's new mouth ulcers. (he never had them before this last week, and now he has 2 all of the sudden) So....what was her response ???.....She actually said that he may have brought them on himself just by thinking about them !! Seriously !!??!!

Just ran by the pediatric office and picked up copies of the stool sample lab results for Austin and all were negative/normal. Too bad they can't blame everything in my "imagination" on parasites !

I guess I will wait around a week for all results between both boys to be in, and then I will start the process of moving along to another doctor. The problem with taking them to the Mayo clinic is that it is not a pediatric facility. Gab's doc will take patients as young as 16 if needed I was told, and on one other occasion he has taken a patient as young as 13 but that was a severe, already diagnosed, a-typical case. I don't think it will hurt to ask him if he will make an exception for JJ due to his sisters', and now possibly his brothers' history. Maybe he will be intrigued to study all 3 ? I can dream If not then I am considering Arnold Palmer Children's for them both. For some reason I think it may be best to keep them "together" for now ?
Any thoughts on that ?
I know that I will probably be basically reading what you suggested saying Dusty,.. it's perfect and will help me so much in trying to explain to them how I, MOM, actually feel in all of this.

I just can not believe what is happening. I can not believe that their GI doc has such a lackadaisical, let's not "label" them, attitude all over again! I really didn't think I would have to go down this road again. It's so disconcerting.

Thanks again, so much!

Edit: I keep remembering more....She said that "if" Austin had a stricture or cobble stoning then he would most likely be loosing weight. He hasn't lost any more than the first 6 pounds (thankfully), however, he HAS lost weight....AND....Gab NEVER, EVER, EVER, had a problem with weight loss. It's like she has "selective" memory on what she will and will not acknowledge about his sister's history. UGHHH...
06-01-2011, 04:35 PM   #53
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Wow, JJ must possess some special powers to conjure up things like mouth ulcers!

If the doc at Mayo feels he can't take them on then I would be asking him who he suggests they go to, and yes I would keep them together. I always like to put it to them this way..."If it was your son, who would you take him too"...usually gets them thinking.

Good luck with the test results hun and the recommendations!

Hmmm...gotta say mate, the doc sucks.

Much love,
Dusty. xxxxxxxx
06-01-2011, 05:36 PM   #54
DustyKat
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Okay T, you probably don't need me to say this but picture this...Dusty in the shower thinking about what you have written...on second thoughts scrap that picture!

Again, you probably don't need me to say this but I think the thing that is really getting my back up about the doc goes beyond not wanting to commit to anything but it's the whole attitude thing. It speaks to me of arrogance, a do as I say attitude and that as their mother you have nothing valuable to contribute. There are ways and means of going about things and in my opinion this doc has no idea. I don't know if she has an inflated opinion of herself but she certainly has a poor memory and no ability to correct past wrongs. If she can't admit that she made mistakes in the past then she can't learn from them. Get away from her, she will do your children no good.

Love ya,
Dusty. xxxxxxxx
06-01-2011, 06:04 PM   #55
radchic
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I agree with Dusty. Run as far and as fast as you can. She is actually causing further harm by not getting this sorted out. Don't even wait for the results to come in, start looking and asking now. Good luck!
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06-01-2011, 07:55 PM   #56
MomofIBD's
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T! Mom has said it the best! I couldn't agree more! Radchic too! No we don't want our gut instinct to be right! BUT we do want our children to be treated when they are sick not hemmed & hawed over! Not to mention it's all in "YOUR HEAD" type of response DX! The Dr. is sounding too wishy washy! I hate HOLIER than THOU Dr's! It so smacks of how the Dr's in Philly were with Michael! I am so MAD on your behalf!

How is Gab doing through all this? As well as your boys? Also thinking of You & Your DH through all this!

Try & get some sleep so you can be on top of your game!
06-01-2011, 08:20 PM   #57
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Wow, I got nothing to add T, just do what Dusty and Rachel have said! With Gabs history, and she still discounts these symptoms and your concerns!!! It's unforgivable!! Fire her ass!

On a more serious note T, enlarged liver was EJ's first symptom of PSC. I certainly hope it is nothing serious but it should certainly warrant their full attention to find out what's causing it!!
06-02-2011, 03:26 PM   #58
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Thank you all !
I just received a call from the GI doc's nurse. She wanted to make sure I knew about the stool tests for Austin being ok, and that the ultrasound showed the enlarged liver. She proceeded to tell me that this can happen with someone who is infected with the EBV virus (yes, she said EBV and not CMV) and the doctor wants to have it checked again in 3 months to make sure it goes back to normal. WTF !
ya, I lost it at this point.
That poor nurse...she's so sweet...I made her cry though. Not from being mean...just from me crying; I couldn't help it.
I told her how I feel that no one is listening AGAIN. I said why would the radiologist come to find me and tell me how concerned his is that Austin has Crohn's, and then the dr. blows it off and says how "normal" his test results are.and now she wants to wait 3 months ! I told her I am scared and I know better than anyone that Austin is not that visibly ill at this point. I know he keeps saying he is fine and nothings wrong. He is a 16 year old tough guy that has watched his sister go through complete hell for two years and he wants nothing to do with this disease. Why would he complain ? I said I also know that Gabrielle wasn't that sick either ! She never complained ! She would sit there with every doctor smiling and saying, "oh it's ok...I'll be fine...It just hurts sometimes" and then she would proceed to talk about the positive things she COULD do. I made it perfectly clear that I am no idiot, I know he "looks" ok, but I am seriously sick and tired of doctors ignoring me and I can't believe I am going through these same issues all over again with the same pathetic responses from that doctor!

I'm quite sure she will report my "mini-breakdown" to the doctor, as like I said the poor woman was crying too; she knows Gabs history and this is all breaking her heart she said. I really don't give a flying F&*^ what the doctor says or doesn't say at this point...my sister is coming from out of state for a few days so I am going to enjoy the visit with her and our kids, and then I'm moving on. I'm not going to be made to feel like I am an over reacting mother any more. If a doctor, who clearly knows my daughters history, has to be forced to pay attention then I want NOTHING to do with her or her associate doctors.

@Dex...thanks for telling me that. I have wondered about the PSC in the back of my mind with Gabrielle because of all of her weird liver symptoms through out the years. I will definitely not let this liver issue go with Austin either.
Is PSC something that can "hide" for a long time? Or is it one of those things that when you have it, they know it quickly ?

@ the rest of you fine folks....I'm running ! I'm running! you're all too kind!

edit: as soon as I finished this the dermatologist called and said they have a cancellation for tomorrow afternoon and JJ is welcome to have it! YEAH! His appt wasn't scheduled until the 27th so I am very happy about this!

Last edited by Crohn's Mom; 06-02-2011 at 03:41 PM.
06-02-2011, 04:43 PM   #59
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T while reading this a thought came to mind about what Daniels GI Dr. had said. Sometimes kids can be real sick but have not much pain. They either have a high tolerance or their labs a are just not showing it. I am not saying this to scare you but when learning CPR & other various things in class for my CNA. Children have different chemistry make up. They get a different dosage in meds than adults. They have a lower blood pressure, higher heart rate & so on. When you do CPR it is done with a different count of breaths & compressions. Some blood tests have different values in kids. Their nervous systems are not fully developed & thus they may not feel pain like adults do or perceive it like we do. Look how Daniel has presented with strep throat this year. Yes they are typical symptoms but usually with a sore throat. I know your kids are teens now but their bodies are still going through major changes! This also applies to the elderly. This is why we have different Dr's for different age groups! It's not an exact science & they need to think outside the box. A Mom or Dad is a Childs first Dr. observer. My kids Pediatrician said diagnosing is observation & investigation. I hear the Momma Bear in your conviction & know your gonna do it right! Enjoy your time with your sister. Let us know how the Derm appt goes!!
06-03-2011, 05:01 AM   #60
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T, EJ's bloods showed elevated liver enzymes early on so they began to investigate quickly. They could feel his liver was enlarged by palpation. It' a very slowly progressing disease so I would imagine it could stay hidden for years.

Let us know how it goes with the derm today!
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