New Member - Son newly diagnosed

[MicroByte]

I just found this forum the other day and wanted to register to be part of it. It's so hard going through this and not knowing anyone really to talk to, I am so happy have found this and thanks to everyone who is sharing their most personal life stories. Thank you.

My son was diagnosed with Crohn's in February of this year. It all seemed to start on Christmas day and we were at a loss between then and February. He'd have fevers everyday, but they only started around later afternoon or eventing. Hospitals, doctors, blood work, tests - it was a lot for our poor 5 year old. Our Pediatrician finally got with a Pediatric GI and after a few more tests, was diagnosed with Crohn's. I have to say it was a relief to my wife and I given our minds were onto things far worse. I had heard of Crohn's, but never researched it thoroughly.

Since then, he's been on Sulfasalazine after his round of Prednisone and we thought things would be manageable. Unfortunately, it feels like he's gone back to square one and the GI is now going to try Imuran, which I'm fearing after reading all of the potential stuff on it. All I know is that I want my boy to feel good and not have fevers or tummy aches.

Sorry, I'm just getting it out of my system at this point and thank you if you've read this far. I'm constantly worrying at this point and just needed an outlet. I just can't believe that it seemed to happen so quickly.

Anyways, just wanted to say hi and thanks again. I really feel for everyone and cannot imaging what it is like to actually have Crohn's. All I know is that I would do anything for my little boy to feel better and just be happy.

 

[Twiggy930]

:welcome: MicroByte!

Sorry to hear that your son has been unwell but I am glad you have found the forum. It sounds like your Christmas/January was very similar to mine. My son was diagnosed in early February. He started losing weight at some point in December and by the end of January had gone from 83 lbs to 66 lbs. He too had frequent low grade fevers that would show up out of nowhere then disappear. It still feels hard to believe that this has happened to our previously healthy son!

My son has been on Imuran since about 2 weeks after diagnosis. So far he has had no ill effects and it seems to be working on a number of his symptoms.

I hope your son starts to feel better soon. It is so hard for us parents to watch our kids get sick and have no clear cut path to make them better.

:hang:

 

[Farmwife]

:bigwave:Hi, I hope you dear son will start feeling better on new meds. My DD is 3 and has had issues for 2 1/2 yrs. I feel for you and every one that see's their child go from healthy to sick over night. My DD has been a slow but steady decline to what we have today. I don't know what's worse to watch. I'm so HAPPY to hear you have a doctor and specialist that listen. Stay around here long enough and you'll realize that's a blessing. Well any way I just wanted to say hi and tell you what I was told the first time here. ASK QUESTIONS. It will make this journey less scary!
:soledance:Farmwife

 

[Tesscorm]

Hi MicroByte,

I'm so sorry that it is your son's illness that brought you here but glad you found us. It certainly is heartbreaking to see your child ill and not be able to bring about a quick fix. There are many wonderful and knowledgeable members here who are always ready to offer their support and experience. :ghug:

I do hope his medication can quickly relieve his symptoms!

I just want to mention that there is another treatment that has comparable success rates at inducing remission in children as do steroids -Enteral Nutrition - and it has no side effects. However, just know that it is not an easy treatment to follow, especially for a young child. It is usually 6 weeks of a nutritional formula only with no other food (sometimes clear fluids such as broth are allowed). It can be ingested either by shakes (similar to Boost) or through an NG (naso-gastric tube). I believe because children often have difficulty following the treatment, it is not commonly offered in the U.S., however, it is often the first treatment for children in Canada and Europe (as it was for my son). I believe it's most successful if the crohns is in the small intestine and also note that it is not as successful at 'maintaining' remission as the medications. However, it does provide all their nutritional needs and can be used together with medications or with a regular diet as a supplement. Anyway, there's quite a bit of info re Enteral Nutrition in this forum as well as in the Treatment subforum - I just wanted to make you aware of this option. And, feel free to ask any questions!

Good luck! :ghug:

 

[Sascot]

Hi, welcome to the forum. Sorry to hear about your son! At least with a diagnosis you can move forward (even though not where you would have liked to be). I agree that all the thought of the medications is very scary, I was very stressed when we had to put my son on Azathioprine. Still wishing he wasn't on it , but so far ok and hoping it keeps the disease in check. Good luck with everything, hope he improves soon!

 

[DustyKat]

Hi MicroByte and :welcome:

I'm so sorry to hear about your little boy, how very heartbreaking for you all...:hug:

Tess has given you wonderful advice about Enteral Nutrition and perhaps it is something you might consider in conjunction with medication to gain remission or as a supplement as Tess has suggested.

Has diet been discussed with you at all?
I personally don't believe that diet causes Crohn's nor is it a stand alone treatment over an extended period of time but I do believe it does play a part in alleviating symptoms and maintaining remission. There are many diets out there and what suits one does not necessarily suit another, much like everything with this disease! If EN isn't viable for you perhaps you could look into a Low Residue Diet, this type of diet is often very effective for those that are in an active flare like your son is now. This article explains it very well...

http://www.webmd.com/ibd-crohns-disease/low-residue-diet-foods

...also have a browse through the Diet Forum.

Where is your son's Crohn's located?

It would appear that your GI is taking the step approach so Imuran/6MP is a natural progression on from Sulfasalazine. You are not alone in the way you feel about these drugs and it causes us all no end of heart ache at the decisions we need to make on behalf of the most precious things in our lives. Both of my children, although much older than your son, are on Imuran as a maintenance medication. Neither have experienced side effects from it and both are doing wonderfully well. Have a look at the Treatment Forum and in particular the Imuran Forum.

Good luck you little guy and welcome aboard!

Dusty. xxx

 

[MicroByte]

First off, I want to thank each and every one of you. I feel like it's hard to talk to anyone but my wife because no one understands and usually you have to explain what it is.

I'm still coming to terms with all of the different drugs and still in the process of learning what I can about his disease - it's a lot to take in. Our GI has been really great about explaining and reassuring that he can have a great life and it just has to be managed, we just haven't gotten to that point yet.

Tesscorm/DustyKat - thanks for the advice on diet, I definitely need to read up on these. As you mentioned, it's probably a little too difficult at his age for him to be able to do this, but definitely something to maybe consider as he get's older.

Thank you all again for the warm greetings and sorry we all couldn't be here under much better circumstances.

 

[crohnsinct]

Hi Microbyte - I am glad you have found your way here but sorry you had to. Welcome.

I see that the experts have all weighed in. I don't have a lot to add. My daughter was diagnosed around the same time so I am still pretty new at this.

This is a great place to come and complain, get advice, lurk, and celebrate...yes... rest assured you will be celebrating! It just takes time and patience.

I hope the aza works for your son and that he is feeling better soon. It's amazing how the very drug we feared becomes our new best friend when we see the affect it has on their quality of life and it brings back our happy children.

 

[AZMOM]

Welcome......

We're glad you found us but sorry you had to! Big thing is.....y'all are not alone.

Hugs,

J.

 

[kimmidwife]

Hi Microbyte,
I am glad you found us as the others said. Like Tess said, look into Enteral Nutrition. It is something I wish we had been told about in the beginning but for some reason American doctors seem to run right for the hard core drugs and not try other things that can possibly work as well with much less side effects. I too had a hard time accepting all these meds and searched high and low for alternatives. We found something called Low Dose Naltrexone which I also suggest looking into. You can find threads both about the enteral Nutrition and the Low Dose Naltrexone here on this site. After you read up on them feel free to ask us questions. This forum has been a miracle for my daughter and helped us beyond belief.

Kim

 

[ChampsMom]

Hey MicroByte - just wanted to drop a note welcoming you - I hope things settle down soon for you... Great group here (as you have seen).

Prior to my son's diagnoses I had only met one person (in passing) who had Crohn's. Since his diagnoses I swear they've come out of the woodwork! Now anytime someone I know, or someone who knows me is diagnosed with Crohn's or Ulcerative Colitis, I'm tagged as someone in the know... there are many whom you, your wife and son will bless because of this knowledge...

God bless.

 

[LilyRose]

Hello Microbyte!

Welcome to the forum! I am so sorry that you have had to find us, but I think you will find it really supportive here. I know I felt such a relief to have found other parents who are going through the same thing.

My son is 6 years old and was diagnosed aged 5. It was such a shock to us, he has always been really healthy. I've certainly been through the 'Why my son?' phase!! But in fact he is actually still healthy, he is only currently having minor issues.

So hang in there. Hopefully things will settle down soon for your son, and he can be back feeling full of energy soon.

I remind myself that there are lots of parents out there facing the same thing as us, and also lots of people with crogns who are getting on with enjoying their lives, perhaps with some ups and downs, but still living life to the full.

Keep us posted how things are going.
LilyRose

 

[Rypen]

MicroByte hi!
I am also new to this forum....actually I haven't been back on since my original post as life has been crazy busy. Anyway I had to reply to you as reading your post I felt like I could have written the exact same thing about my son. Started with tummy aches and high fevers every afternoon at 4pm and again late evening. Started just after Christmas. After 10 days and 2 lots of antibiotics he was admitted to hospital. 3 weeks and goodness nows how many tests (we too thought the worst) he was finally diagnosed with crohns disease (just in the terminal ileum) It knocked us for a six as he had no symptoms prior to this and was a big strong healthy boy. He is unable to take sulphur based drugs as we also discovered whilst he was in hospital he and I both have G6PD deficiency, so the doctors offered 2 treatment options. Aza and prednisone or aza and eternal nutrition. We went for the eternal nutrition and Aza. Like you my husband and I were horrified at the side effects of the aza but our boys quality of life was most important in the end. They did initial put the NG tube in as our son is 4 but he managed to drink the whole 1.5 liters every day so we took it out. I'm happy to report, pls don't jinx myself) that since the very first day he started modulen and aza the fevers and tummy aches vanished, he has perfect bowel movements and more energy than I've ever known him to have. He is back on a full diet and continuing to have 250-500mls of modulen daily. He's had one flu since being on the aza and got over it in 2 days :-0. If he didn't have to take meds you wouldn't even know he's got crohns. My husband and I are now looking into dietary changes to help along side the aza as we are still very fearful of it for the long term. I feel like im poisoning him every time I give him that tablet. Anyway sorry for the long reply but like I said your boys case sounds so much like mine that I had to respond and to give you some hope that all can be well. Billy continues to have monthly bloods, at our request, and his inflammatory markers are now almost non existent. I'm so happy and hope it continues. I'm wishing the same for your son and wish you and your wife all the strength in the world. Your nit alone.

 

[MicroByte]

Thanks everyone, sorry I haven't been by to thank everyone, I really appreciate all of your supportive words and advice on things.

We started Prednisone again this Saturday and were suppose to start Asa as well. We balked at that, but will finally start that when he get's home from school today. He's on 1ml dose and we want to monitor him to see if there are any side effects tonight. My wife and I are both worried about it, but I can't see any alternative right now. He's doing well with prednisone right now and has really perked up with no stomach pains, hopefully this stays that way.

Either way, I've been a nervous wreck, but just have to remember to take it day by day. Hopefully the Asa works and doesn't cause any serious side effects or issues, time will tell.

On another note, we got a call from his school's Vice Principal today about missing school. Seems like he's missed more than the allowable number of days, but they are going to let him move on. He's in Kindergarten right now, but I'm worried about upcoming years if we have any serious issues again. Yet another thing to worry about.

 

[momoftwinboys]

Hi MicroByte
Welcome to the forum. My 10 yr old was dx last fall. Our school nurse was proactive about us getting a 504 plan in place. They worked with the cafeteria so if he has any dietary restrictions needed they will make sure it is done behind the scenes so he is not singled out. She said it is better to get in all in place so if issues arise later he is already in the files. He has not missed too much school, mostly appointment related. Of course, I say that today while he and his brother are home from school today. His brother,N, vomited this morning and H is fighting a nasty cough. They both played in a flag football tournament on Saturday and played six games on the hour every hour they went to the party that evening and played rugby. They were very sore and stiff yesterday. Soooo, an extra day of rest sounded like a good idea today.

Below links have info on school and IBD
http://www.crohnsforum.com/showthread.php?t=18420
http://www.ccfa.org/kidsteens/?LMI=8

CCFA also has info to give the school/teacher to help understand what your childs needs may be due to IBD.

Hopefully your son is in remision soon and school absences are not an issue when he starts first grade in the fall.

 

[LittlebitsMommy]

I want to say welcome to the forum. There are so many wonderful people here. I am sorry I am not of any help. My son was dx with Crohns also in Feb of this year. I know what you are going through. I would love for Kota to feel better and be able to run and play like he is use to doing. You and your family are in my thoughts and prayers.

 

[dannysmom]

On another note, we got a call from his school's Vice Principal today about missing school. Seems like he's missed more than the allowable number of days, but they are going to let him move on. He's in Kindergarten right now, but I'm worried about upcoming years if we have any serious issues again. Yet another thing to worry about.

Hi - I am glad your son is feeling better. I just wanted to share with you my experience with public schools in NY. (I know that is can vary from place to place.) When my son first became sick, he also missed a lot of school, 6th grade at the time. This went on for a couple of months and eventually he was out for one month straight. That was when the school finally told me about their home instruction offering. Apparantly, if a child will miss 2 or more weeks of school they can apply for home instruction. The application has a section for your doctor to complete and then the school must approve it. Since then, my son has had tutors come to the home everyday for 2 hours. I never knew that schools provided this. I do not think your school's rule for the max number of missed days should be applied to your son. You should not have to worry about school ...but like advised, meet with them and make sure that the school will accommodate your son's needs.

 

[MicroByte]

Thanks dannysmom, I figured this would become a bigger issue next year and down the road, and I'm glad there's some room in there for this.