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Doctors won't connect...I have to make choices....

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Posted 9/28/2007 4:49 PM (GMT 0)
Help!!! I am not sure if I am doing the right thing.... my childrens doctors are about a 5-6 hour drive away and getting them to cordinate is so frustrating!

Problem #1) My 12 year old had a bad reation to Imuran (lupus like reaction). Our GI said to stop it immediatly, and will be doing another pill cam in a week to check the progession of the cd. She wants him only on the prevacid and pentasa. Our Reumy called back finally, and agrees that his recent bout of symptoms, hospitalization, etc. was more than likely caused by an adverse reaction to his meds... He wants him to still take the Imuran, drop it to 25mg, and stop the Dicloflonec, and start prednazone(sp)10mg. I called the GI back and she said that I had to make the choice! I refuse to give him the Imuran! and the pred. makes him emotional, bouncy and the last time he was on it, he had more bloody stool then ever before. She said that she was not thrilled with the pred., but to do what I thought was best("follow your maternal instinct") They have told me to stop giving him fish oil, because it can cause more bleeding.....I am sooooo confused! I want to do what is best for him.

Problem #2) My 6 year old had his first colonoscopy and endoscope in July. The biopses and blood work have all came back normal (so did my 12year olds), but like my other son they were able to see some abnormal things... Nodularity of dodenum, and inflamation of and around the iliocal valve... because the biopses showed no tissue changes we still don't have a dx. However, he has had 2 episodes(3-7days of complaints, 3 weeks inbetween) now of bad stomach pain, nausea, and not wanting to eat. I want him to have a capsule endoscope done, but don't know if it is to soon.

Any advice would be welcome... TIA

Nat

PS. I have decided that CD is like a box of chocolates - you never know what you are going to get :-)

Posted 9/29/2007 1:36 AM (GMT 0)
Hi Nat wow don't know what to say find it hard enough to look after just CD for myself but with your children sick too must be hard for you .How do you manage it? As far as the meds I haven't a clue what I would do in your shoes.Is that as close as you can be to your GI wow that is a long way. I think if it were me I would go with the GI if it is the bowels and reaction you are worried about the most. Hard call here because I don't know which is worst Bowels or Reumy problems. Are they treating your 6 year old with meds? Sure hope things improve and somone else might jump in here to help Hang in there and let us know what is going on lol gail
Posted 9/29/2007 7:30 AM (GMT 0)

Thanks Gail. I am not going to give him the Imuran, the dr. has mentioned chalenging the reaction in a couple of weeks, but I will refuse that too. I have never seen my child get so sick so quick... Anyhow, I did decide to give him the prednisone, and he just barely went to bed. I had to drink a pot of coffe to stay awake this evening and now it is 01:00am, and I am wired. Good thing tomorrow is saturday yeah I get to sleep in! I would love it if we had a GI and Reumy closer to us... the next option is Primary Childrens in Salt Lake. It would take about two hours off the drive, but it is a long wait to get into them and a pain in the tooshy to get all the records transfered and all that junk. My husband and I decided to give it till the end of the year, and if the communication does not improve we will look in that direction.

We are not medicating our six year old at this time... and if he does have IBD like his brother then it makes me really nervous. Tyler(11 opps said he was 12 before, that would be his big sis) had symptoms of cd start when he was about 5. The biggest problem with getting a diagnoses was 1) the disease is throughout his small bowel and could not be viewed well with a colonoscopy and endoscope. 2) Except for an elevated ESR his blood work has always been normal (including prometheus test). Even that did not show up though until he was 10. Ty has always presented with -  as our GI put it "a very diffucult nontypical case of IBD". That is not to say though that the DD has not done its damage. Isaac (6) started having very marked symptoms almost two years ago, both boys have problems with C not D. When the D does kick in there is usually blood. Both complian of nausea, and stomach cramps, etc. Isaac blood work and biopses also came back normal. So they won't treat him yet, instead they say that we need to wait and see if he grows out of it, or until the DD progresses. My mommy gut says that he has it, he just does not have the reumy problems Ty has. I don't want to wait until the cd is at the level it is with Ty, to start treatment with Isaac.

I don't know how quick things can change inside someone with cd, that is why I am not sure if it is to early to push for the capsule with Isaac. If anyone has any input on that I would love to hear/read it...

Well this is getting long- did I mention I drank a POT of coffee tonight. Thanks for taking the time to read....

Oh, as far as managing... I get up every mornging and pray that it will not manage me. Then do the best I can with what I know.

Nat

Posted 9/29/2007 11:33 AM (GMT 0)
Hey - as for no 2 with Ty is it? I had v similar results when I had my first scope- both ends- one dr said he was 99% sure I had crohns but the consultant over him said it should pass over time. This led me having to go back to my family dr & being told I was stressed, depressed you name it just because that consultant said I was ok!! Eventually 6 months later of ongoing nausea, diarrohea & vomiting(ususally at the same time)etc. - I'm sure you know the scene! I went back to that consultant who was a bit taken back that I still had symptoms & refered me to a diff consultant who immediately thought I'd crohns before doing another scope but when he re-scoped me i had severe uclerations. & my bloods are always normal!! only had an elevated esr when i was bleeding really heavily & have never had it risen since!! - a good gi will know to go more by symptoms & how he feels.

So I guess what I'm saying if you think he's got it I'd say your right - if i'd been treated straight away I mightn't have needed more agressive drugs.

As for that pred - i hate the stuff with a passion & I'm not even a kid - I really think that shouldn't be given to children full stop. did you ever try an elemental/polymeric diet with him? no side effects - & you might get some sleep!! It worked better than steroids for me!!

Don't forget persist with those dr's until your happy with what's going on!! If not go elswhere - it may seem like a hassle but if things are bothering you is it not more of a hassle to stay as you are? good luck!!
Posted 9/29/2007 12:49 PM (GMT 0)
Just wanted to let you know that I went through a major transfer of my children's records for a non-Crohn's related issue several years ago. It was quite a bit of hassle (as you mention) but in the end, completely worth it. I actually hand-collected the records and hand-delivered them (didn't rely on the "it's in the mail" line). Waiting for appointments was hard for me, too, but as I said, I was MUCH happier with the new situation and so glad I made the switch.

If there's a major-city Children's Hospital available to you, you might want to really re-consider switching your doctors. Sounds like your kids have quite a few issues and I hate that you're not getting the support, expertise, encouragement and attention that you and they both deserve.

Good luck!
Posted 9/29/2007 1:39 PM (GMT 0)
Hi Nat How are things going today ? Hope you finally got some rest .The boys feeling better? It might make things better if you have the two closer to the DR's , I don't know what kind of DR.s are at Salt Lake but if it is a good hos. with the 2 specialist there I would try it. Your sons might need ongoing care for awhile so the closer the better. What kind of rhuemy problems is Tyler having? I know we hate pred. but it does keep get things under control.How does he do on it? Try low roughage it is easier on the system.I can imagine the intestines can use all the help they can get when inflamed. Might be other Mom's on here that have had the capsule done on little ones I don't know. Will be looking to hear from you . Are you getting any relief from tending to the not felling so good boys?How's the Dad holding out .Keep positive about things you"ll get it worked out lol gail
Posted 9/29/2007 5:39 PM (GMT 0)
I hope that you got some sleep, and are doing better today.
Thanks for your post, I really can see how hard things are for parents.

I don't think Pred. should be given to children either.

All the other side affects aside, you run into growing problems.(problems with the child reaching their full potential with height).

I do recall one g.i. doc, my first, who would not use pred. on me period, until I was 15.
When younger and I got ill, I went to the hospital, and they did all they could for me there, without using pred.
(sometimes I stayed for months on end)

I hope you don't have 2 children with this illness.
If it helps, I have 2 sisters, and neither of them have any health problems, aside from anxiety.

There are LOTS of doctors out there, you can always look into a second, third, fourth opinion on prednisone.

Take Care
Posted 9/29/2007 8:46 PM (GMT 0)

Good Afternoon! I was able to sleep until 8:30am, then a friend called to inform me it was snowing. I got up looked out the window and sure enough it is coming down, not sticking, but still dumping. Sooooo now I have a sick boy bouncing of the walls(seriously very bouncy), that seems to have become a bottomless pit overnight, stuck inside. Oh joy!

I really don't like the way he is reacting to the prednosone, but it is helping with the stomach pain, and he is walking on both legs. (he has not been able to put weight on his left leg for about three weeks) His dx from the Reumy is enteropathic arthritis. about two years ago our old ped. Dx him with asthma, based only on symptoms. Severe pain in chest when becoming active and difficultiy breathing. In early Aug. of this year he had a pulminay breathing test and we found that he does NOT have asthma at all. but the arthritis effectd the joints between his ribs and his sternum and have caused him to lose chest expansion. It first showed up when he was two with him waking up at night screaming because his knees, ankels and hips would hurt so bad. Once again because they did not see anything in his blood, we did not get dx. I took him to over 5 different peds. all said the same thing "just growing pains". I have three children, he is the only one that has had this problem. When we finally did get the dx of CD we were refered to the Reumy. He was upset that he had not been seen earlier. We are waiting for him to get well enought to start PT, but he will not regain all of the range of motion he has lost in his hips, and back. We just hope to stop him from losing more.

Isaac is doing good today, Miralax kicked in and that always helps...

Bilirubin -  What is a an elemental/polymeric diet?

My husband and I talked again today and it frustrates me. He is convinced that Ty does not have CD. I think he just does not want to except that this is a CHRONIC, UNCURABLE disease. I know that we can get it into remission eventually, but the question is when? How long? and the answere is only God knows. He does not even want to deal with the fact the Isaac might have it to. It is a hard thing to face!

I am going to call the GI on Monday and ask for the capsule scope for him too. We are already going on the 8th for Ty's and Isaac is getting a recheck . We'll see, what happens.

The boys see the only pediatric GI in the state of Idaho, at ST. Lukes Childrens . They are good, I just don't know how to get the Reumy(he is at Elks Rehab) to communicate with them and the Ped. to communicate with both of them.... I think i might need to start asking for my own copies of everthing so that I can carry info from one to the other.

Sorry this is so long again... I am working on another pot of coffee already today.

Nat

Posted 9/30/2007 1:53 AM (GMT 0)
Hi Nat-
As much as we ALL hate Prednisone, it does work if used the proper way.
Get another opinion. Trust me (and most of us with Crohn's) you can NEVER have to many opinions. I am sure you have gotten a couple. It took me 6 before I found the right Dr. for me. Do not give up. It will all work out. You just have to find the right meds with the right combo's. As far as the Fish Oil goes, I personally have never heard that. It is so good for the inflammation. But I guess if that is what the Dr. said you should do it!
Hang in there and never give up!
Posted 10/5/2007 9:16 PM (GMT 0)
Hey - haven't been on in a while so didn't get to explain the diet!! Basically you just drink special liquids for about 2 months - i was on ensure but there are different brands - no foods are allowed and the gut gets a rest - the amount you drink depends on your weight and height, a doctor/dietician will work this out & your not going to be hungry on it & if you want to gain weight you can drink more. It is good esp for kids - it can ease symptoms really quickly, within a week! Its def worth a try, I can work on its own but may not, like every treatment everyone is diff but it can reduce the dose of steroids needed as well.

Also I myself swear by carrot juice mixed with aloe vera juice i try take it every day, just a small amount though -buy the aloe vera in the health food shop and juice the carrot yourself - don't overdo it at first as it could give diarrohea but i find just one carrot juiced with some aloe vera really help to give a formed stool.
Posted 10/6/2007 1:44 AM (GMT 0)
Hi Nat THe rib thing wasn't chrondritis I know that it effects the ribs. Sounds like getting copies of the boys test might make a difference. Glad to hear they are doing better. Snow gosh sounds a little cold there. I can understand your husband not wanting to believe TY has CD.Hope your day is better and stay with us were here for you. lol gail
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