The Day I Feared Would Come

[SarahAnne]

I was diagnosed with Crohn's at 19, so by the time I had kids it was certainly a fear that they would have it too. My son (9 years) has had abdominal pain and bathroom issues off and on for years. It just recently went from 2-3 times a month to 2-3 times a week. I made an appt. with his pediatrician and she put him on Prevacid last week. We eliminated acidic foods from his diet to start with, and she wanted him to take the meds for a month and come back.

He took the meds for a week before I had to call back. He was having pain daily, and I've picked him up from school 3 times in 10 days. When we went back he had lost 2 pounds in that week. He is not underweight, he is stocky so the weight loss was surprising. She took him off the prevacid and ordered bloodwork and an abdominal ultrasound. We had the blood work done and he almost passed out. The ultrasound is tomorrow morning and we are supposed to be getting a referral to a pediatric gastroenterologist based on his symptoms and my history. He is scared to death, and I am stressed out.

When I was dx'd I had been hiding symptoms for years and was hospitalized immediately. What do doctors usually start children on if they have IBD or suspect it? I want so badly for this to be anything but Crohn's. I've lived with it forever and I can handle it but I seriously don't think I have enough strength to watch my son go through it too.

 

[Farmwife]

Oh SarahAnne I'm so sorry this might be a possibilities.
I hope you get answers quick.
Hugs coming your way!:hug:
What's the next step for your doc to take?


:rosette2:

 

[NancyP]

. He is scared to death, and I am stressed out.

so sorry you are going through this. Your post really touched me! My 16 y/o daughter was dx with Crohn's last summer, and like you mentioned, was very ill and hospitalized. Very traumatic time for all of us. My 9 y/o son was just dx with colitis this week. He isn't very ill, but has been having tummy aches probably 5 out of 7 days each week, since February. Lots of the delay in treatment was probably denial on my/my husband's part!!

First, reassure your son that the ultrasound shouldn't be painful! Except for maybe pressure on his already sore belly. . . . at least no needles!! One thing I kept telling my son was that all these tests were helping gather info so that they could not just relieve the pain, but get at the cause, so the pain didn't come back. That seemed to help my little guy. We had the labwork, but then went straight to the pedi GI and a colonoscopy.

Right now we are about to start meds, I'm just a little leery of what was prescribed. Trying to do a little more research before we start. We have another consult next week so may wait till then, I just hate to let my guy hurt for another week.

Will keep you and your son in my prayers--much harder to watch a child go through it, than to go through it yourself!

 

[crohnsinct]

SarahAnne: I am so sorry to hear of your battles with this disease and that now your son may have it as well. The treatments for children are very individual and vary based on the child, their disease location and severity and docs preference. However, it seems that the treatments now as compared to when you were a child are much better and now the docs try to hit it hard from the beginning. Our doc is a top down hit it hard guy. He says that the quicker you can get a child into remission the less likely they are to need surgeries down the road.

FWIW: my daughter had severe Crohns throughout her entire colon. She had stomach and rectal inflammation. She was put on Prednisone right away along with Remicade. When Prednisone was stopped symptoms crept back in so we supported the Remicade with a six week course of Exclusive Enteral Nutrition and that got her symptom free. The kids who can weather the EEN seem to do very well with it. It is great at inducing remission and mucousal healing but is not as successful at maintaining it and so many (not all though) do find themselves adding some drug at some point.

I can only imagine your stress level having dealt with this disease for so long but how wonderful that your son will have a empathetic and knowledgeable advocate by his side.

Good luck tomorrow and keep us posted.

 

[Tesscorm]

SarahAnne,

I can't imagine how difficult this is for you :ghug: When my son was diagnosed, it was incredibly scary because I knew nothing about Crohns but, I'm sure having crohns yourself, brings it own set of concerns! But, try to remember, if your son does have crohns, you have caught it much earlier (as you said, you hid the symptoms for years), your son will not be in the same position as you were. Also, you are so much more knowledgeable than I was (am), you will be a great advocate for him and will be able to make informed decisions that will certainly help him.

As for starting treatments, from what I've seen here, most start with steroids to take down the inflammation and them move on to some maintenance med (aza, 6mp, metho, etc.). But, my son was given EN has his first treatment (also, one week on IV flagyl when diagnosed). He did six weeks of exclusive EN (no food, formula only) and then continued with 'maintenance' EN and reintroduced food. He has always ingested the formula overnight with an NG tube but there are drinkable shakes. The maintenance EN is 1/2 dose, 5 nights per week. He has been on maintenance EN for over a year and has not added any medication yet (will probably need some as there is some inflammation still present but no symptoms). Its not as commonly used in the US as it is everywhere else, so you may have to initiate the EN discussion with the GI. There's lots of info on EN in the Treatment section.

Good luck tomorrow at the ultrasound. Will be thinking of you :ghug:

 

[~Manders~]

I'm so so sorry SarahAnne :hugs:
No one wants to see their kids sick, especially when you know exactly what they could be in for. I do not have kids, but this is a huge concern of mine when I do have them.
I wish you must strength to help you & your son get through this. I'll be keeping you both in my thoughts.

 

[Jmrogers4]

So sorry you are going through this, I can only tell you how we felt after daily stomach pains and issues with our then 10 year old son. My husband was diagnosed with Crohn's in 1993 with it sounds like something like you, symptoms for years and ended up in the hospital.
When our son was diagnosed and they came in after the colonoscopy and said Crohn's we both said "well at least we know what we are dealing with" I can say Jack definitely looks to his dad for how to deal with things and he tells him how he deals with it. I think it has helped him cope with having Crohn's as he already knew something about it.
You will be strong for him because you're a mom and you have to and he will be looking to you for answers. Then you come on to the forum and rant and rave all you want and everyone on the forum will be there for you.

 

[jmckinley]

So sorry that your son may have Crohn's and that you have had to deal with this also. Sending hugs your way! Like crohnsinct says, hitting it hard and fast seems to be the best course because it may limit the damage for the long run. The medicines have come a long way. You will be a great source of strength and compassion for your son having gone through this yourself.

Be sure to take care of yourself. I have IBS, (not even close to being as severe as Crohns) and it acts up every time my son gets sick just from the stress. Makes us a pitiful pair!

 

[SarahAnne]

I know it sounds pretty terrible, but I was hoping it was excess acid. The pediatrician asked about reflux but I've never had it except associated with pregnancy or prednisone. My son's bio dad had very bad ulcers. When I mentioned that, the doctor said those things could be genetic and put him on the prevacid. I was hoping it would help but after a week it was obvious that if anything it was making things worse.

He had a good day today, good as in I didn't get any phone calls from school and he hasn't complained about any pain. He did use the bathroom twice this morning and immediately when he came home from school. That is normal for him.

We are having the abdominal ultrasound done tomorrow morning. The ped. gastro is supposed to call us to schedule the appointment, if I haven't heard from them by tomorrow then I will call the regular pediatrician's office back. I want to know what his lab work showed as soon as it comes in. I can't stand waiting.

 

[jmckinley]

I've often wondered about the acid reducers. I know that stopping the acid prevents ulcers in the upper small intestine. But it has always seemed to me that acid helps break down food in the stomach. So wouldn't the food be less digested and therefore harder on the small/large intestine?

Of course I got an eyeroll when I asked Dr this.....

 

[Jenn]

Welcome SarahAnne and so sorry to hear about your son. The bloodwork can be scary. My son occasionally feels faint/nauseous during them. I try to make sure he has a healthy/protein snack beforehand and then offer him something fun/sugary afterward. I would have them rule out the pylori bacteria that causes ulcers. It's a long road to dx. For us, it started as an unhealed abscess wound, inflammation markers in the bloodwork, then colonoscopy/endocopy with biopsy. Best of luck!

 

[kimmidwife]

Hi SarahAnne,
I wanted to wish you luck tomorrow at the ultrasound. One thing tough, for my daughter at least ultrasound never really shows anything for her. She has always needed a colonoscopy or an MRE (MRI with contrast). Has your doctor mentioned doing any of those if the ultrasound doesn't show anything?

 

[kimmidwife]

Hi SarahAnne,
I wanted to wish you luck tomorrow at the ultrasound. One thing tough, for my daughter at least ultrasound never really shows anything for her. She has always needed a colonoscopy or an MRE (MRI with contrast). Has your doctor mentioned doing any of those if the ultrasound doesn't show anything?

 

[Sascot]

Hi and welcome. Sorry to hear about your son. Good luck with the ultrasound. Ultrasound never showed anything for my son either - it was only the faecal calprotectin that ever showed anything.
Our GI's first port of call on diagnosis is a 8 week exclusive period of EN which worked wonders for my son! The first med they tend to use in Scotland is the Azathioprine as far as I can gather.

 

[David]

Sarah, I'm so sorry. You, your son, and entire family are in my thoughts. I pray that it's something not serious.

*hugs*

 

[Emily]

Sending a bunch of hugs over to you and your son Sarah! I sincerely hope he is okay. My mom has IBD too, (and I really really REALLY hope he doesn't have Crohn's) but having a mom like you will make the whole experience smoother and more comforting him I promise. You're the best mom for the job! But again, I'm seriously hoping that it's just some awful stomach bug or something. Please update when you can :hug:

 

[Jennifer]

Hi SarahAnne sorry to hear about all this. When I was diagnosed at age 9 they put me on Azulfidine (I believe that's sulfasalizine) and Prednisone. The sulfa drug didn't agree with me so I was switched to Asacol and then later added 6MP before I was 15 (don't remember exactly how old I was). Hope you both get some answers soon. Keep us posted whenever you get a chance.

 

[DustyKat]

Oh my goodness SarahAnne...:hug::hug::hug: I well remember you voicing your concerns about your son some time ago so you must have been on edge sat least since then. My heart goes out to you hun.

I hope all goes well with the ultrasound today and you soon have the lab results. Waiting surely is the pits and your imagination is no friend to you while you wait!

You have been given fab advice hun and I can only reiterate that some things that will dictate his treatment, if you find yourself on this road, are it's location and severity. Certainly the way of thinking these days is to get someone into remission ASAP so as to minimise damage and encourage mucosal healing, therefore the method is to hit it hard and fast. EEN is certainly well worth considering and I hope your docs are open to that.

Good luck and please let us know how you get on. :ghug:

Dusty. xxx