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07-20-2011, 02:38 PM   #121
b.lynnleon
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07-20-2011, 02:44 PM   #122
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Hi Lynn and welcome !

What your going through with your GI doc sounds very similar to what my boys are going through as well! The only difference I think is that the doc thinks I am the neurotic one, not my kids ! Its so very frustrating!

Have you checked out the undiagnosed club yet? There's some really nice girls in there
I can only imagine how hard it is for you to try and get through AP exams with the way you are feeling...that's awful!

I sure hope you get some answers soon!
Best of luck!
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07-20-2011, 05:27 PM   #123
b.lynnleon
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Thanks I Hope I get some answers too and the GI doctors must think my mom and I are both neurotic. lol Also I have been referred to the forum, but yet to post to it.

Also I wish your boys good health if they are like me I know they can use some.
09-09-2011, 09:00 PM   #124
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Hi ... Just wondering if there are any updates with our undiagnosed kids?
Tracy, How is Austin and JJ?
Danny, who had oddly gained a lot of weight the first 2 years he was sick, has lost 24 pounds in the last 6 weeks. His calorie intake and activity level has not changed, nor has his diarrhea frequency .... so it is a bit of a mystery. Our next appointment is in 2 weeks. I have my growing list of requests for blood tests and imaging.
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Last edited by dannysmom; 09-10-2011 at 06:48 AM.
09-16-2011, 09:21 AM   #125
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Hi Jeanne
I'm sorry I haven't been around here much lately so I just saw your post

How is Danny doing now? 24 pounds in 6 weeks ?? thats craziness! I hope the weight loss has stopped and settled now ?

My boys have been doing pretty well for the most part; so well in fact that I started thinking (again) that maybe I was neurotic and searching for something that wasn't there out of my own fears. So I had decided to take the watch and wait approach since I couldn't really see a reason to keep fighting doctors when both of my boys kept saying "I'm fine now mom, it's all gone, stop worrying" etc.
Austin has pretty much stayed "fine". I don't think he's going to tell me if there's a problem unless it becomes major. He got tired of doctors very quickly and in turn was getting mad at me So, I have learned to keep Dusty's eagle eye on him and just make mental notes when I see somethings off. Such as: we sit down for dinner and he only eats about half his normal amount...say's sorry mom but my stomach hurts today. I just kind of say...everything Ok? And his response is something like...oh yes, I just shouldn't have had that second glass of orange juice today! So I watch, and I keep it to myself.
He is scheduled for his follow up ultrasound next week to check he liver again tho. It was enlarged for "no reason" a few months ago, so Ill be glad to see if it has gone back to normal. I hope!

As far as JJ goes, it was interesting after his colonoscopy and upper endoscopy. He had no symptoms any more. He felt great he said. I asked off and on for a couple of weeks how his stomach was and he would say it's fine mom. So I was thinking hmmm...all he needed was a good ole clean out to help ?? LOL
And then about 2 weeks ago it started again. Except it started with his old cough from years back. He had a chronic cough for around 3 years straight that no doctor could tell me what the problem was. He was on 8 different medications at once with no relief. I decided after that to take him off of everything because there were no other symptoms and I felt like we were poisoning him instead of helping. The cough finally went away around a year and a half after we stopped the meds. And poof...here it is again. Except this time his stomach aches are back with a vengeance and coupled with migraines and fatigue. The stomach pain is enough that now he associates them with food and refuses to eat more than a tiny bit at a time because he is afraid of the pain that follows. I feel so bad for him (and somewhat guilty as well) .. he came up to me last night and says "Mom, what happened? I thought the doctor said my stomach was fine?" I told him maybe he just has a touch of the flu and he will be ok in a few days. Meanwhile, I have made him an appt. with his pediatrician for this afternoon, and also with the ped. GI for Monday morning. I hope what I told him is right and he just has the 'flu'...but I don't even believe it myself.
09-16-2011, 04:05 PM   #126
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Doctors appointment for Jj was pretty uneventful for the most part.
He kept talking about abdominal migraines. He said he doesn't want to overlook the fact that his sister has Crohn's and we missed it, but he also doesn't want to just assume that JJ has it just because she does. I understand that, but at the same time it frustrates the hell out of me

So he gave him some prescription cough syrup and ordered some more blood work. He said he wanted to run the typical CBC and some others and then I finally spoke up and asked for the CRP and Sed rate and a full IGE count to be run as well He actually thanked me for asking for them specifically. I'm glad he did because I hate speaking up like that honestly, but after all my family has been through with this damned disease, I just can't let the doctors think they are the tell all anymore when I know otherwise.
He also asked JJ to keep a journal or log of his bowel movements, and headaches, and pain, and what he eats and how it affects him etc. So I have showed the doctor and JJ the two applications that I know of for the iPhone that are useful for just that. I figure since JJ is so shy still (who can blame a 13 year old for not wanting to discuss his poop!) then this will be an easier way for him. He agreed that he will try and keep up with it; then all he has to do is show us his log on the app.

I'm interested to see what the GI doctors take on his symptoms returning are on Monday...
09-16-2011, 04:36 PM   #127
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God I hate that you are having to go through all this mate...

I won't comment on abdominal migraine...

Okay, I get what the doc is saying about not jumping to conclusions but since most of the time a diagnosis is made through a process of elimination I would say to him...well let's rule out Crohns before we rule in anything else, not an unreasonable request in my way of thinking.

Dusty. xxx
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09-16-2011, 05:00 PM   #128
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I won't comment on abdominal migraine...
and I don't blame you one bit !

I have been reading about them and it just doesn't fit JJ in my opinion
09-16-2011, 05:28 PM   #129
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Abdominal migraine sounds about as catch-all as IBS! I like Dusty's suggestion, first prove it isn't IBD, then we'll go from there. Hang in there T!!
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09-16-2011, 06:54 PM   #130
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You're absolutely right Dex ! I didn't even think of that and Gab was on 6mp for over a year...duh!
09-16-2011, 07:04 PM   #131
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OH crap! See I told you my brain is a mess ! I posted my response to you Dex...but it was supposed to be on the "worried about surgery" thread! LOL....more narcotics ?? hahah
09-16-2011, 07:11 PM   #132
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Well he couldn't figure that out T then.....................say no more!

Dusty.
09-16-2011, 08:35 PM   #133
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Hi Tracey. Thanks for the updates. I am happy that Austin is feeling better. Too bad JJ started feeling bad again. I am glad you asked the doctor for more blood work ... I really do not think that is too pushy at all. I read in your other thread that the surgeon wants Gab off her med for the surgery ... I really hope your GI can help with either allowing it or ensuring that she will be able to resume it, etc. How frustrating. How is your recovery going?

Danny still the same ... 2 weeks until our next GI appointment
09-17-2011, 04:57 AM   #134
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Well he couldn't figure that out T then.....................say no more!

Dusty.
It's OK Dusty, you can say it!! Never stopped you before
09-19-2011, 04:26 PM   #135
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Took JJ for his appt. this morning...useless !
He is going for an ultrasound on Wednesday morning as well.
I have been looking into switching him to Shand's Hospital, it's about 2 hours away, but they seem to have the best pediatric GI's around so it's worth it to me.
I will wait and see what the ultrasound shows, then call to make the appointment if I can't find something closer in the mean time.

She says...oh your stomach hurts that bad ?? Hmmm...(looks at records) you have chronic inflammation throughout your stomach and stuff so maybe thats acting up again and you need some medicine. Then she leaves the room and says, Ill be right back. We never saw her again...nurse came in and gave us the form for the test and a script for prilosec. I can't get him away from her fast enough!
At least his pediatrician is trying to help ... arrghhh.
09-20-2011, 05:24 AM   #136
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I'd rather spend two hours driving than sit in an exam room for two hours for that bs!!! Ugh!! How can they discount Gab's when looking at Austin and JJ??
09-20-2011, 10:08 PM   #137
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T - I'm speechless. And that IS saying something.

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09-22-2011, 01:58 AM   #138
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Holy hell T, she sounds like a walking disaster!

Run, run, run as fast you can!

I reckon the 2 hours will be so worth it, there's nothing like having trust, confidence and peace of mind in the doc looking after your kids ay? Hell I'm not telling you anything T!

Good luck mate and go for it!

Dusty.
09-22-2011, 10:32 AM   #139
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What to do...what to do...I feel kinda overwhelmed and confused right now...
I got the results back from both boys' ultrasound, and most of JJ's blood work as well. The nurse (from the pediatricians office, not GI) called and simple said "everything is normal for both of them". So as usual, I said ok thank you and please have copies ready for me I will be there to pick them up. I went to get them and the doctor happened to be in the waiting room holding a newborn and just hanging around. He also told me (before I looked at the results) that everything is "fine".; however, he says that Austin has a slightly enlarged liver but he's not concerned so "no worries". I said, but doc thats why his GI ordered the test was because nearly 4 months ago his liver was enlarged, and now it still is and your saying thats "normal"?? He said something like...well that can definitely happen with a viral infection. So I simply said thank you and took my reports and left.
Now I am home and going through them myself. Not only is his liver STILL enlarged after 4 months, but now his spleen is as well !!! And this is 'NORMAL" ???? He is supposedly getting over a viral infection (Mononucleosis), getting better? And now his spleen is enlarging ?? I am so mad right now I could scream ! Yes, his spleen may be only mildly enlarged, but it wasn't 4 months ago, and...he is on the football team !! All I can do right now is picture him getting sacked on the field and BAM his spleen ruptures ! I haven't heard from the GI's office yet to see what that quack has to say.

As far as JJ's tests: His ultrasound was actually "normal", which I am happy about. Also the majority of his blood tests are back, and the doctor said those are "normal" as well. Someone please explain to me why a doctor does not look back over the series of 4 sets of bloods done in the last year and compare them?? I have and almost every single thing that has been tested these last 4 times has risen each and every time. There are some "high" markers on a few bloods that have always been high and are getting higher each time (Monocytes, Eos, Platelets). I know I'm not a chemist or doctor, but these are a few of the "red flags" that were doing the exact same thing through the lengthly time when I was trying to get a doctor to listen about Gabrielle !! So it's subtle .. it's not outrageous levels I know...but give me a fricken break...the signs that something is wrong with my son are there !! Why is it "normal" for a 13 year old to have daily migraines, stomach aches, lack of appetite, fatigue, heartburn, and chronic cough ??? Why must they continue to act like I am some neurotic mother who doesn't know what the hell I am talking about !!

Ugghh....sorry for the rant ! I am obviously so upset right now and I'm at a loss.

By the way...the 16 year old, tough guy, son of mine who swears he is "fine" finally admitted last night at dinner (because he barely ate) that his stomach is hurting a lot lately and he is so exhausted and doesn't understand why because he sleeps at least 10 hours a night, every night. Hmmm....Normal ??
09-22-2011, 11:26 AM   #140
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Hugs Tracy! I am at a loss what else to say ... I am right there with you in thought .... Have you tried to schedule an appointment at the doctor 2 hours away?
09-22-2011, 02:35 PM   #141
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Oh T, my heart goes out to you mate.

Normal is normal and anything outside of that, no matter how mild is not normal. I don't wish or want anything to be wrong with JJ or Austin just as you don't but your Mum radar is on high alert for a reason as you well know.
I know you won't let this drop T, I just wish that after all you have been through with Gabs they would jump on things and leave no stone unturned. It just shouldn't be so hard for you the second time round.

Much love mate,
Dusty. xxxxxxxx
09-23-2011, 04:44 AM   #142
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No kidding T! How on earth can they look at JJ and Austin, with the obvious family connection, and discount their symptoms? If, god forbid, eithervof them progressed to Gab's level it would be criminal in my opinion.

Have they done ultrasound on Austin's liver?
09-23-2011, 08:26 AM   #143
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yes they have dex...maybe I didn't write clearly in my rant..LOL

Austin's liver is STILL enlarged after 4 months, and now his spleen is too !
09-24-2011, 12:25 PM   #144
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Hi T,
When Lucas was first diagnosed an abdominal US was one of the first tests run. It showed an enlarged spleen. This was the single finding that caused my doc to further investigate. Lucas was also playing football. I immediately contacted his coach. He agreed that Lucas could definately not play, but was more then welcome on the sidelines with the team. God Bless that coach! For me, the risk outweighed the benefit. It is crazy that his doc is simply dimissing it. Hope you find another doc..very soon, that will take this all very seriously. Good luck and I am thinking of you and your family.
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09-24-2011, 02:00 PM   #145
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Wow, I can't believe his doctor is not taking these results more seriously! Perhaps it is nothing more than a reaction to a viral infection BUT the fact that this has not changed in four months, that his spleen is now also enlarged and given his sister's history definitely warrants further tests!

I truly just don't comprehend why some doctors don't follow up with any question/doubt? Is it that they're too busy, or that they deal with 'symptoms' all day and become blase about them??? I really don't get it at all! Get to that other doctor! Stephen went from March to May with his GP running tests BUT, as they all kept coming back negative or with only mild 'indicators', her take was 'its a virus' or 'let's wait and see'... at one point, while he was having off/on fever, diarrhea, losing weight, tired and pale, her response was 'let's wait a month' - this was already after two months of tests (altho, to give her credit, she did say if I wasn't comfortable with waiting, to take him to 'another' hospital since we had already taken him to emergency once). We took him to the children's hospital next time he had a fever, literally within 4 hours (HOURS!! Not days, weeks...), they were talking to us about Crohns and then confirmed it a few days later with his scopes.

Sorry if you've already answered this, I may have missed this along the way, but can you not take them to Gab's GI?
09-26-2011, 01:58 AM   #146
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I can't believe all that you have been through! My son has no symptoms of Crohn's. He had an endoscopy to rule out Celiac after being worked up for delayed growth and puberty.

When they saw ulcers in his stomach and inflammation in his duodenum, they immediately considered Crohns and he has no symptoms!!!

He is still not diagnosed and will see a specialist next week and have a colonoscopy and some other work up to see if this is the case.

I hope you can move on to someone else.

They did put my son on 40mg of prilosec for a month the day of the endoscopy and were going to add in antibiotics if he tested positive for h-pylori (he was negative).

It may not be bad to go on them since this can help the ulcers heal. My son's script will run out 3 days before he goes to another doc who only treats IBD in kids and his nurse said to buy the OTC prilosec and have him take 2 pills each of the 3 days until we see them.

Gosh, you deserve answers! I am still shocked that your doctor is so dismissive of everything, especially given your family history!

Best of luck to you and your kiddos!
09-26-2011, 08:08 PM   #147
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Well, the kid who never complains and insists that NOTHING is wrong with him is now complaining quite consistently this week of pain.
Where's his pain you ask?

Well..I will tell you...
It's in his upper right quadrant right about the area where his liver and spleen are !
Uggh.....Is this a coincidence ??
I highly doubt it !
And..to top it off he has had 3, yes THREE, major nose bleeds today!
Does anyone else's kids have, or ever have, a problem with nose bleeds ??
Austin has off and on for quite some time now and we have always attributed it to the season, or allergies, or something of that nature.

I am getting worried about him now again, in addition to worrying about JJ again. Austin really is the "tough" guy who is doing everything he can to prove to me and the world that there is no way in hell that he can have Crohn's or even a cold. So, for him to be actually coming to ME and complaining really is saying something.
I'm thinking I will call the doctor tomorrow and request an abdominal CT scan to be done just to be on the safe side. Does anyone think that's a good idea? OR do you think its a waste of time ??

I gotta tell you....I KNOW in my heart of hearts that Austin has Crohns disease...there is absolutely no doubt in my mind. JJ is still questionable to me and my instincts at this point...but there is just something about Austin that my gut knows to be true. My gut is also telling me that he is heading in the same dreadful situation as his sister....

Someone please take this dreadful disease from all of our families !

Much love to you all and thank you to everyone who has responded so far...I am not very good lately about responding individually I do apologize, but I truly do appreciate every single bit of input !
09-26-2011, 08:43 PM   #148
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Is there a children's hospital near you? They were the ones who took Stephen's symptoms seriously and were on top of it immediately. When we took him to the local hospital a couple of weeks earlier, they did do an ultrasound, took blood, etc. but then told us 'yes, he is a bit anemic and, yes, a bit inflamed but... just go back to his regular GP and have her run some additional tests, cud be an infection, parasites, etc.' and his GP ran tests but then wanted to wait ANOTHER month 'to see', blah, blah, blah... The only people who seemed to ask the right questions and know what to do with the answers were the specialists at the children's hospital.

We took him at 6:30am when we thought emergency would be least busy and it worked... by 11, a number of tests were done and they were talking to us about Crohns and had him admitted by 12!

I really feel for you, how frustrated you must feel!!! I really don't understand why they don't see what everyone here can see - that further tests should be done! Something is obviously not right, it may not be Crohn's but something is off...

Thinking of you
09-26-2011, 08:44 PM   #149
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I don't think it is a coincidence or a waste of time T. Anything you ask for that may lead to an answer is well worth it as far as I am concerned.

Sarah, for just about all of her undiagnosed time had upper abdominal pain. I would also ask that they draw blood for pancreatic enzymes to be tested and an ultrasound of the pancreas if that wasn't done with the liver and spleen. Pancreatitis preceded Sarah's diagnosis and is now considered an extra intestinal manifestation of CD and often precedes a clinical diagnosis. Just may be another thing to rule in or out.

Good luck T and keep us posted!
Dusty. xxxxxxxx

PS. No nose bleeds here.
09-26-2011, 08:54 PM   #150
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Tess: Yes, there is a children's hospital about an hour away from us. However, I had spoken with Gab's nurse at the Mayo clinic a couple of months ago and she said to bring his records and they would set us up. Well...stupid me didn't do it because Austin was getting SO VERY mad at me and at doctors and insisting that there was NOTHING wrong ! So, I backed off because he seemed to be doing so well! I will call his pediatrician tomorrow and ask for the CT scan...I know he will order it because even though he doesn't always know what to do or look for with CD, he always trust my judgement so I know he will do it; even if it's just a "favor" to me.

Dusty...I just can't stop thinking about Sarah !
I don't think I need to say more....
Thank you friend
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