10 yr old daughter just diagnosed with Crohn's

[Makena's Mom]

Hi my name is Becky. My daughter Makena was just diagnosed last week with Crohn's. I've been reading some of the stories in this forum and I cannot tell you all how happy I am that I stumbled upon this website. I've felt so alone the last few months. Here's a brief summary of what got me here:

July 2013 my daughter got a terrible abscess on her butt. We went through several dr appts, lancing it, finally a fistulotomy in November and still is not healed. Her pediatric surgeon referred us to a pediatric GI and she had a colonoscopy/EGD a week ago. He showed me pictures of little white dots (ulcers?) all over, from her esophogus to her colon. And the weird thing is, she's never complained about pain, except while pooping. I just thought she had hemorrhoids. The fistula was almost a blessing in disguise because we would have never known..until it got bad years later, possibly.

So we begin Remicade treatments next week. We live on Maui and will have to fly to Oahu for treatments. Her Dr just called to schedule first appt, next Friday the 27th. Next one will be six weeks later, then every 8 weeks after. I'm very nervous about what the next few months to a year hold. Any advice for our family on getting through this? I don't know what to expect.

 

[crohnsinct]

Hi welcome to the forum although I am sorry you have to be here. My daughter was dx's at 12 and put right away on Remicade. She also didn't have many symptoms until about two weeks before being admitted to the hospital. After 6 months the doctor declared her in clinical remission (absence of symptoms). This summer she will have scopes to see if she has reached a full remission (mucosal healing). Remicade has a good track record and especially with perianal disease.

My daughter is on a 6 week schedule for Remi (used to be 5 weeks). The flying back and forth sounds cumbersome but sure wish I could fly to Oahu for infusions. It may take a while for the docs to figure out the right dosage and schedule but hold in there because when they do and if the drug works it is wonderful.

Unfortunately, we can't really say what to expect as no two kids are alike and the disease presents itself so differently from on patient to the next.

Just take it a day at a time. Peruse the threads (maybe read success stories and REmi treatment forum and parent thread on Remi) here but try not to get overwhelmed and don't borrow trouble from tomorrow. When you are reading always remember no two kids are exactly alike. Just because it happened here doesn't necessarily mean it is the norm.

You have found an intelligent, compassionate group of parents here. Ask anything. They (we) are all here to help you.

Good luck with the Remi.

 

[crohnsinct]

http://www.crohnsforum.com/showthread.php?t=44907

Parents section Remicade thread

 

[crohnsinct]

http://www.crohnsforum.com/showthread.php?t=27079

Success Stories thread

 

[Jmrogers4]

Welcome Makena's mom!
I think I'll join crohnsinct in flying to Oahu for treatment although we do not have any experience with remicade.
My son was 10 when he was diagnosed. He is now 14. One thing to remember is that a lot of people who post are having problems when they are feeling good they are out enjoying life.
This is a terrific group of parents who have some fabulous advice and a terrific support when nobody else really understands.
Hope the remicade works quickly and gets her into remission for a good long time.

 

[Makena's Mom]

Thank you so much. I have a feeling this group is going to help me (and her) in many ways. One thing I keep telling myself is to chill out and be positive around her. Keep home life normal; dinner, homework, movie nights, etc.. I try to save my breakdown's for after bedtime with a glass of wine. Jmrogers4, I love your advice about people posting when theyre going through rough times. I'll keep that in mind. I already noticed that today and got all stressed out. As for flying to Oahu.. can't complain we live in Hawaii, but it has been hard living so far from family. My job brought us here and if anything I am so thankful we found such an amazing dr. Even if he's a plane ride away. At least our insurance covers all the travel. And I think the Remi infusions are going to be covered too.. waiting for confirmation on that.

You ladies are awesome, I love this place already.

 

[crohnsinct]

You are pouring a glass of wine?! YOU'RE IN! We even have a special smilie for that :wine:

If your daughter wants to chat with a girl let me know. O just turned 14 so a bit older but I am sure she wouldn't mind emailing or facebooking your daughter.

 

[Farmwife]

You are pouring a glass of wine?! YOU'RE IN! We even have a special smilie for that :wine:

.

^^^^:yfaint:

 

[kimmidwife]

Welcome Becky,
Sorry you had to find us but glad you did. Sounds like you have found a good doctor to work with and that is really great hopefully the remicade will work great for her. As crohnsinstinct said go over to the remicade section and take a look. This forum is a big help and a great support.

 

[CrohnsKidMom]

Welcome to the forum, Makena's Mom. My son is now 9 and was dx'd in March. He was on Prednisone for a total of 5 months and is taking methotrexate injections for maintenance. Seeing your child with an illness is a hard thing to watch, but relief will come with treatment and you'll be sure to see some improvements soon.

We just had our 1st snowfall on the weekend. I'm also thinking Oahu is a good place to go for treatment-for many conditions!

Take care!

 

[Mehita]

Welcome!

Just curious on your schedule for Remicade. Usually it's scheduled at 0, 2, and 6 weeks for loading doses, THEN every eight weeks. You might want to ask about that?

My son just started Remicade in November for Crohn's and is doing wonderfully. We're really loving it and he's never felt better. Hope it works for your daughter too!

 

[Rocking on]

Well the bad news is that Crohns sucks ass. The good news is you are in freaking Hawaii!

Best of luck to you. Lot's of good stories and good advice here.

 

[Twiggy930]

:welcome: Becky

Sorry to hear your daughter has been diagnosed with Crohn's but I'm glad you have found the forum. My son was also diagnosed when he was 10 years old, he's 12 now. It is really hard to watch your child deal with an illness that you can't make better. I too try to schedule my breakdowns for bedtime but I am not always successful :voodoo: The forum is always a good place to come to find people who understand what it is like to have a child with this disease.

I hope that Remicade works wonders for your daughter and gets her feeling great.

 

[Axelfl3333]

Welcome to the club no one wants to be in.i hope your wee lassie gets better soon and I,m confident for the young and not so young people on the forum that an answer will be found for crohns.theres a lot of money getting flung at it,some will stick!good luck

 

[Johnnysmom]

Welcome Mekena's mom!!:welcome:

The first few months after diagnosis are the hardest. (Was for me anyways) Once you start to know what to expect and what to do when issues come up things get much easier. It is also a mourning process, I felt like life would never be the same. But, you adjust and things get back to normal for the most part.

Glad you have found a great DR. and let us know how things go with Remicade.

 

[polly13]

Hi there and welcome, sorry you had to find this forum as it has saved me from complete breakdown since my daughter was diagnosed. Good luck with the remi infusions and fingers crossed they will work for your little girl.

 

[Brian'sMom]

Welcome to the forum, and sorry to hear your daughter has been having so much trouble. I also struggle with this diagnosis. I have good stretches...but Its brought me to my knees often. I want to add that if affects your whole family emotionally. I will have to say also tho, that it has brought my family closer. (If I could try to find one positive! ) I've been in the mad stage for a while.
I would like to 2nd on checking on the Remicade induction infusions. They are usually spread over week 0,2,4 and then out to 8 or 6.

 

[Sascot]

Hi and welcome. Sorry to hear about your daughter's diagnosis, but you are right- at least you found out before things got bad. My son also had white dots along his intestines when diagnosed and suffered from a bad abscess last year, which needed surgery. Gould luck with the Remicade, I hope it works really well!

 

[araceli]

Welcome to the Forum. Hopefully remicade starts working soon. On what to expect.. everybody is different, usually it goes 0, 2, 4. 6. and then every 8 weeks. it may start working right away or take more time. Some need antihistamines and some don't. For us food, drinks, computer and video games work's very good on infusion days. Feel free to ask any questions. Best wishes.

 

[CarolinAlaska]

Looks like your GI is on the ball, even if you are in tiny Maui! I hope everything is smooth sailing from here on out and that she can find an effective treatment for all of her symptoms quickly without any problems!