New and Not Happy

[L'sDad]

Hi folks. This is lauren's dad. Lauren is 11 years old and was recently diagnosed with moderate to severe Crohns.

Shes on prednisone and started her Remicade treatment while in the hospital. Poor kid, she's the picture of health and one of the sweetest heart's on this planet.

It hurts me and her mom so badly I can't even describe it...but you all know that already.

I just can't believe this comes out of nowhere....she had a horrible rash the size of a softball on the back of her theigh and next thing I know we're in the hospital doing top and bottom scopes. Her insides looked really bad, I guess, but she didn't have the fistuals...so that's good.

We don't have a history of this in our family and I just can't imagine how you go from being a vibrant young lady to having a chronic disease in 3 weeks.:ymad:

My wife and I are doing the best we can to keep her up but she know has severe arm and wrist pain...we're guessing from the IV's but maybe its a Crohns thing. She's at the second ortho dr. today to see what he thinks. The first said it was just tendonitous and there were no fractures.

She just had her first out patient Remicade infusion last week and dropped to 2 prednisones vs. 3....now it looks like she's got some red itchy bumps on her back. She goes this Tuesday for a blood draw so please send up some prayers for her and her family.

Anyone else in the St. Louis area with a 11 year girl with Crohn's wanna get together for a drink or 12?:rof:

 

[__JK__]

Hey L'sDad,

Sorry to hear Laurens having a tough time. Wish her well from me. I was roughly her age when I was DX so I know how tough it can be. The symptoms are tough enough then you gotta deal with growing up. Her story sounds very familiar. I went through a real tough time between about 9 and 12. Mine started with a weird rash all over my legs and I used to suffer with joint pain in my shoulders and elbows. Fortunataly I grew out of the joint pain.

When the rash on her legs clears up it will definately be something to look out for in the future! I think we all have these tell tale signs our body gives us that our Crohn's is about to kick off. Mine is the leg rash. I get it about 2/3 weeks before a flare up. As soon as I see it I'm stright to the doc's.

Best wishes,

JK

 

[L'sDad]

Thanks JK. I'm still not even sure what a flare looks like for her or what causes it. God I hope this isn't the new normal.

 

[chrisnsteph1022]

You poor thing! I can't imagine seeing my kids go through what I have to go through. It must be heart-breaking. I hope they're able to get her into remission quickly and for a long time! The joint pain is a common side effect of Crohn's. I get arthritis in my right hip when I'm flaring.

 

[Emily]

Hey Lauren's dad. I bet its the scariest thing to have this happening to your daughter, I can't imagine being my parents back when I was diagnosed. I hope that the Remicade can kick her into remission and keep her there. It is a long journey to find the right drug. You sound like your doing everything possible and joining this forum was a great idea. So much to learn here, it's a really great community. Many people on here were diagnosed relatively young like Lauren and I assure you, this will not stop her from leading a normal life! Stick around here, it should help out with the stress and worry about all of this, we all can relate!

P.S: if the rashes and whatnot stick around you may want to ask the GI if this is a side effect of the Remicade. If the rashes are causing her a real problem, the GI should switch her med's. The benefits should outweigh the problems when it comes to medicine.

 

[izzi'smom]

Hi there, and just wanted to welcome you...so sorry that you have to go through all of this but hoping that Remi will work for Lauren!! My dd gets a few odd red marks (although not rash like) when she's on Prednisilone.
Glad you found this board...wonderful and supportive people here.

 

[Jenn]

Welcome L'sDad. So sorry to hear about your daughter's difficulties. It was heartbreaking when my 9-year old son was diagnosed with Crohn's last year. It's a huge learning curve and a difficult transition and takes time to cope. I'm glad that you found the forum, there are so many nice people here to share and understand the pain. I hope Remicade helps your daughter feel better soon, my son has done great on it over the last 5 months.

Jennifer

 

[L'sDad]

Thanks for all the kind words. We'll get through it...what other choice do we have.

 

[izzi'smom]

...oh, and a drink or two can help some days too lol! (or twelve).

For us, not them

 

[Del]

That was tough to read...so I cant begin to imagine what ye both must be going through, not to mention Lauren.
This forum is a great resource for information and friendship.
I offer up prayers every day for everybody on this site and will continue to do so..
Stay well..
Take care..

 

[Brian'sMom]

Lauren's Dad, Wish I didn't have to welcome you here...I'm sure you're feeling that way too! But this is a good forum. There are lots of parents here who can help you and your wife as both of you will probably immerse yourself in finding out all you can about crohn's. As for it being in your family...My husbands sister had UC all by herself for 15 years...then my youngest child comes along...now we have family history I guess. No one else in the whole family has it...Yet!

 

[Dexky]

Welcome L'sDad! Not many of us dads stick around for long! Wish we didn't have to be here but glad you found us! Things do get around to a new and different normal for her and your family. I hope she gets to remission quickly!

And GOOOOOOOOOOOO CARDS!!!!!

 

[AZMOM]

Hi Laurens Dad - I'm glad you're here but of course hate it too! . Our kids are so tough.....I remember all too well the healthy-one-day-in-the-hospital-the-next feeling at diagnosis. It's A LOT to take in.

Hoping Remicade knocks her into remission and keeps her there!!!

J.

 

[vness1208]

sorry to hear about your daughter.. my daughter was dx the day after her 12th birthday & is now 13yrs old and doing well. I also dont have anyone else in the family w/ CD so I know how you feel.. this must be a rough time for you & your family but the best thing to do is try to stay strong & positive. my thoughts & prayers are w/ you and your family, I hope Lauren starts to feel better & gets the treatment she needs hang in there.

 

[DustyKat]

Hi L'sDad and :welcome:

I'm so sorry to hear about your girl...:hug:...pity I wasn't a tad closer, I'd happily go for a drink with you! :ybiggrin:

I hope, wish and pray that Remicade does the trick for Lauren, fingers and everything else crossed!

Good luck and keep us posted Dad!

Dusty. xxx

 

[L'sDad]

Just an update..

She's feeling better and helped me all day Sat outside.

Down to 2 prednisone pills per day now

Small bumps on her back are itchy...using benadril cream for those...not really that many and not painful so that's good.

Went for a blood draw today so let's pray for good news there

Been to 2 physical therapy sessions for her arm. Ortho said it was nerve damage due to "too much digging" when trying to locate vein for IV. It is feeling better so that's a good thing.

 

[stratford]

Hey L'sDad,

Sorry to hear Laurens having a tough time. Wish her well from me. I was roughly her age when I was DX so I know how tough it can be. The symptoms are tough enough then you gotta deal with growing up. Her story sounds very familiar. I went through a real tough time between about 9 and 12. Mine started with a weird rash all over my legs and I used to suffer with joint pain in my shoulders and elbows. Fortunataly I grew out of the joint pain.

When the rash on her legs clears up it will definately be something to look out for in the future! I think we all have these tell tale signs our body gives us that our Crohn's is about to kick off. Mine is the leg rash. I get it about 2/3 weeks before a flare up. As soon as I see it I'm stright to the doc's.

Best wishes,

JK

Erythema nodosum??

Of the 5 consultants i've been under only one had a good understanding of this leg rash & active Crohn's.

I hope Lauren is getting better.

 

[Brian'sMom]

Erythema nodosum isn't a rash. They look like raised bruised bumps on the bone. My son had them on his shins. They hurt. They looked like someone had kicked him in his shins.

 

[G's mom]

L's Dad,

So sorry to hear about your DD. My DS(12) has had 5 cycles of Remicade and would much rather do that than all the pills.

Poor thing, I can't believe damage was done while putting in the iv. Garrison has become quite the expert on iv's. He drinks a lot of water for the 3 days before any procedure. He prefers the iv to be mid-arm or right below the elbow crease. (The side of the wrist or hand is very painful for him.) And he has also learned that the J-tip makes his veins collapse and hide. So he takes the cold spray and deals with short term pain to avoid the soreness later. And as a parent I have learned that the nurse gets 2 chances then we get someone else.

Hope she is feeling better soon. I would love to get a drink with you, especially after the Rangers win! :emot-dance:
Take care,
Vicky

 

[Johnnysmom]

Hey L's Dad,

I have an 11 year-old just diagnosed myself so I know what you are feeling. It is unbearable sometimes! My son has issues with pain after IV's and blood draws. The doctor says he has a tendon right under the vein and that is what causes it. We use a litocane cream that helps but he does have pain for several days afterward. So nothing serious but unfortunately another thing for him to deal with.

Wish I lived closer we could have that drink, it would be nice to have someone to talk to. Hope L feels better soon and is back to your normal healthy little girl. You're not alone.

Tiffany

 

[Kat]

Hi Lauren's Dad..... We feel your pain as well! Our daughter is 14 years old and was diagnosed last December (Merry Christmas!). The past year hasn't been the best for us either. We consider ourselves lucky though... our daughter is doing well and is back to being a happy teenager - well as happy as teenagers can be - She is on Remicade every 6 weeks, it was 8 weeks for a while until her symptoms started to show about 6-6/12 weeks. I can say that Crohn's has not stopped her yet and our new life with Crohn's is okay for all of us. Some days are better than others!

We are in the Detroit Area - not St Louis - but would still love to join you for a drink.... You can have that drink in St Louis and we will have it here in Detroit. How about 8 PM Saturday (10/29) - Cheers to our BRAVE - RESLIENT - AMAZING daughters and sons!

PS - I am cheering for the Rangers!!!! LOL

 

[muppet]

Arm and wrist pain is most likely from the Remicade, but unless it becomes debilitating, she should stay on the drug until/unless it stops working for her, because once you stop, usually, you're done taking Remicade. That is, next time you try, you'll probably be allergic to it, having built up antibodies.

The joint pain associated with Remicade gets diagnosed as all sorts of things and is poorly documented (and poorly proven, honestly). In my daughter's case they say it's neuropathic pain, but that doesn't pan out because steroids make it better.

Best of luck to you. The best thing you can do is READ AND RESEARCH AS MUCH AS POSSIBLE so that you know whether or not what the doctor tells you makes sense. Most GI docs are good ones, but there's a few goons out there who just make stuff up, or so it seems.

 

[L'sDad]

Thanks again everyone...except the jerks chearing for the Rangers! Really? The Rangers....whatever.

Seriously, the arm pain seems to be getting better and didn't show up until well after her first infusion...like weeks after.

The rash on her upper legs is back and the little bumps. No pain but very itchy. GI said go back up to 3 prednisone per day and the dermitoligist says it appears to be simply a case of exzema (SP). This is the same dermitoligist that saw her in the hospital and took her original biopsy.

Find it kind of strange that the kid never had exzema before and now she gets it? Who knows.

I'm thinking about buying a Hot Tub...anyone have one and does it help your kiddo's with the skin and joint pain?

 

[DustyKat]

Hey Dad,

Skin problems are a very common extra intestinal manifestation of Crohns. There are threads here about eczema, have you looked in this forum?...

http://www.crohnsforum.com/forumdisplay.php?f=84

We don't have a hot tub and while I would think it would benefit the joints I'm not so sure about the skin.

Who the hell are the Rangers anyway??

Dusty. xxx

 

[G's mom]

First I'd like to start by saying, "Let's Go Rangers!"

We put in a pool this summer and it did help Garrison with joint pain. It also helped him exercise without exhausting him. (If that makes any sense.) He doesn't have any skin problems, but I do. The chlorine did bother my eczema. I was able to keep it under control by showering as soon as I got out of the pool and putting on lotion twice a day. Sometimes I would have to use steriod cream for when my skin was cracked and bleeding.

It seems like, with Crohn's, we are always having to make decisions and pick the lesser of 2 evils. I wish they would hurry up and develop the magic pill and we could all live healthy ever after!

Take care,
Vicky

 

[radchic]

We have a hot tub. Good for the joints very bad for the skin. They have salt water pools but not sure if they do it for hot tubs? but salt water would be much better on the skin then all the chemicals needed. For us, if Lucas or my husband are hurting, in the tub they go. We use ours all year and I live in CANADA! lol Sorry your here but so glad you found us! These people have a wealth of knowledge.

 

[Zoodles]

Hello Lauren's dad and I'll join you in a drink. How's she doing now?

 

[L'sDad]

Thanks folks. She's doing better...I wonder something.

This bad rash and her wrist pain all started after her second out paitent remi infusion. Serum Sickness? Maybe just the very subtle start of one?

You'll all learn that I also like to fear the worst

GO CARDINALS

 

[Jenn]

They give my son Bendryl before each of his Remicade doses and I often give him a followup dose at home for stuffy nose issues afterward. It might work for the itchy rash bumps? A little epsom salt in a hot bath might help better than a hot tub.

I think we've all learned to fear the worst. But have to keep hoping for the best anyway!

 

[Brian'sMom]

I've noticed dry skin before and after all the meds. I have lotion next to every sink, in my car, and in his backpack!! otherwise he starts picking his fingers...which means fingers in the mouth!!
Last winter we put a cool mist humidifier in his room because he was always stuffy and then had lots of bloody noses.

 

[Dexky]

We use benadryl an hour before and the morning after EJ's Humira. We also keep a humidifier in his room all winter. He's also prone to dry skin so, like Kathy, we use a lot of lotion.

Phew!!!! Go Cards!!! But please, make it a little less dramatic tonight!!!!


And they did!!!:banana::banana::cheers:

 

[kimmidwife]

Hi L's Dad,
First of all I want to say Hooray The Cardinals won! THen I wanted to tell you my Daughter was also diagnosed at age 11 and is now 14. She has had a rough rocky road. NOw we are trying a new therapy that people on this forum told us about Enteral Nutrition. SO far so good. Anyway my daughter had very bad reactions to the Remicade and is severely allergic to 6mp. It sounds like your daughter could be having a reaction to the remicade. About the hot tub you have to be careful with hot tubs as they can grow bacteria and with these kids on all these immunosuppressant medications I would be nervous to let them use a hot tub. However I have bee taking my daughter to the YMCA to use the regular pool several times per week and it seems to help some of her joint pain.