Izzi update...

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She sounds like she's doing great in the water!!! Had to have my two boys swimming together for About 18 months because my elder one would cry!!! He got there though. Once her confidence has grown she'll love it!

Hope they got the right biopsies!! Good luck with that xx
 
Glad things are going ok. I struggled with Calcium for Amy - she stopped drinking milk at around 1 year old. The dietician gave me a liquid calcium supplement for a while, but now I just use one from the supermarket.
That's great she's improving with the swimming, hope the change in teacher helps the stress. I was always in awe of my children who could swim well after a few months to a year. I cannot put my head under water without holding my nose and can only do breaststroke :ylol:
 
Thanks for the update Angie!

It is so great to hear that the Tacro is continuing to do its job and her body is tolerating it so well! :):):)

I'm with you on changing swimming teachers. At that age it should be all about encouragement, fun and learning.

Dusty. xxx
 
I agree with Dusty, it was supposed to take her mind off the bad stuff!

For Calcium, we were told to give EJ Tums. We buy the generic ones but they are sweet and he doesn't mind them. A little chalky but sweet:)

I wish we could stay away from the GI for a year!!
 
So glad to hear the good news about Izzi, so nice to know she is doing well and controlled! Swimming is awesome, though we cannot afford lessons my sister has a huge pool and this will be the first year the deck and heater will be functional. Looking forward to sitting pool side and teaching the kiddos how to swim and not sink!
 
I am so thrilled I found two parents of children currently on Tacro! One is on it for Crohns; but his GI only wants him to use it for a year (he has only been on it a couple of months). THe other doesn't have Crohns; she has autoimmune enteropathy but has been on it almost all of her life (she is 8). Yippee!! It gives me faith that she can be on it a bit longer (which means [fingers crossed] a healthy Izz for a long, LONG time!!!!! ;)

"I wish we could stay away from the GI for a year!! "

Dex, I have become friends with him and see him regularly...so we discuss her care as the need arises and he has popped into the lab while we are there to say hi to her. I can only imagine we'd have had to follow up if it weren't for this...we're pretty fortunate!
 
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I hope continues to do well on the Tacro Angie and that she can indeed stay on it for a long time to come! :ghug:

Are the doses for the other two children similar to Izzi's?

Dusty. xxx
 
If we stayed away from the GI for a year Id tap dance naked down the street (well not really but you get the idea :D).

Im all for the swimming!!!!!!

J.
 
Izzi went to her ONE YEAR follow up today!!
All is well...PCDAI 10!
Her doc discussed her Tacro use with some peds GI's in Boston this past week. They AGAIN reiterated it is a BRIDGE therapy. When pressed, they claim that there is no documentation using Tacro long term for Crohns. (ummm...there aren't large, well documented studies for a LOT of drugs used for pediatric Crohns.)

We had a discussion regarding whether to dial back her therapy-that is, try another, lesser drug to see if something that didn't work before will work now. We also still haven't tried a few drugs...they are on the sidelines.

After discussing it at length with her doc and her dad, we have decided to continue therapy for now. In my heart I know that if there is some awful, negative side effect down the road, I will never forgive myself. But for today, she has a childhood. She is making beautiful memories at six years old, and I plan to let her continue for as long as our Tacro luck will last.

We will rescope at the end of summer (July/August) and revisit our care plan then, barring any changes before that.

I met another parent that has a child on Tacro...she has been on it for eight years (for another autoimmune disorder) with no ill effects other than those related to doseage issues.

Gives me hope...

I have been a bit busy at home, so absent here...but doing wonderfully!

pm me to friend me on fb!
 
YAY!! Fantastic news! I know what you mean about worrying about the meds but being so happy that they are having a childhood! It's hard to be constantly faced with choices, but it sounds like she is doing so well. Enjoy it!
 
How often is she having routine bloodwork Ang? It seems we're all just dealing with the best educated guess. If it ain't broke:).
 
Don't let the 'what ifs' of side effects down the road get to you Angie. Easier said than done, I know :)

All meds were new at some point and somewhat unknown. Sounds like you can take great relief in a child being on it for 8 years! Just think of what new meds could be out for Izzi in 8 years!

Glad everything went so well and enjoy!!
 
Dexky said:
How often is she having routine bloodwork Ang? It seems we're all just dealing with the best educated guess. If it ain't broke:).
Click to expand...

We go monthly, Dex. I imagine after a year of normal labs I could probably take her less often...but its a bit reassuring to see normal kidney function and relatively low CRP.
 
After a couple of months of elevated crp, symptoms are back.

10/14 izz is having belly pain and 8-12 bathroom trips a day.

10/10/14 upper endoscopy shows mild gastritis. Colonoscopy shows moderate to severe inflammation with a perfect ti. Histology to follow, but it looks as if our time with Tacro is coming to an end.

I think we are going to do simponi, although we touched on stelara as well. He hasn't prescribed simponi yet so he'll be checking with the rep tomorrow.

It was a nice run while it lasted. :) lol now I have to make up for lost time-plenty of research for me to do on new options!
 
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If she is put on Simponi -- My (older) daughter took Simponi for arthritis, but anyway, she said the injection was MUCH less painful than Humira. Didn't burn at all! We did the pens but were sent the syringe once by mistake, and the syringe hurt even less than the pens (which she said didn't really hurt much at all).

SupportiveMom's daughter is also on Simponi, and I think she also found it much less painful.

Sorry to hear she's not feeling well, hope that changes SOON!
 
Oh man Angie :(:(:( I am so sorry to hear this! :ghug:

Gosh time flies and it is so fab that Izzi managed to get as long as she did with her ‘bridging’ treatment, bless her. :heart: Wish it was longer for you guys though.

Sending you MEGA loads of luck with the next step of your journey! Good Luck!

Thinking of you both. :wub:

Dusty. xxx
 
Sorry to hear the news! It is so hard when they come out of remission. We have unfortunately been dealing with this as well. Keep us posted on what you decide and how she is doing.
 
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Thanks for the info, Maya142! I was wondering if there was a difference-we did syringes with Humira. :) I considered the pens (if I thought she'd do it herself, or if someone else had to give it), but I am thinking she wouldn't want to do it.
 
My daughter totally refused to Humira at first (now she does it because she's in college) but had absolutely no problem doing Simponi. She was much older than your daughter though.

Since she probably won't do it herself, I would get syringes since they really don't hurt much at all. S said they felt like a regular shot, kind of like methotrexate (but the needle is slightly bigger).

Incidentally, we are thinking of putting my younger daughter M on Simponi next - for both Crohn's and arthritis.
 
Oh Angie I sorry it had to come to an end but glad you both got a break for a few months.

Is the school working with you or being difficult?
 
Big hugs
So sorry to hear you need a different med.
Glad she got a little bit of normal for a while at least
 
Sorry to hear! :( I hope it can be brought under control very quickly with the new med! :ghug:
 
Thanks all. Farmwife we haven't had any issues per say. I dropped in to chat with the nurse last week-just a friendly hello-I wonder if my tone in my emails is off. I meet with admin next week regarding her 504. Still waiting on Simponi-doc suggested steroids while we wait but last time we used them they didn't touch her-I hate to try something for nothing. (If I thought they would help her to eat, I would-she has a huge appetite but sits in front of the food crying because it hurts too much to eat. :()
TY, Maya, I will do that.
 
1/7/15 after facing admission, we finally got an answer (her 3 month cough is likely allergies) and got our loading dose of simponi.

2 shots-one in each leg after icing ten minutes. We chose to use injectors as izzi has shown some interest in injecting herself. She claims she hardly felt the injection. That evening she claimed she had less pain. (I wondered if this was partially for to the fact that the injection was far less painful than she anticipated). However, 4 days later she hasn't complained once of pain and is in the bathroom once daily and not at all at night (after weeks of pain, 8 trips a day, and regular accidents).
She will get a second dose two weeks from the first and labs at three weeks.
Right now she is still on tacrolimus but if she continues to do well I may discounting it.
 
So glad it went well! S loooooved Simponi shots (compared to Humira anyway).
It's great that she had a response right a way, fingers and toes crossed it continues.
 
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This is so fab to read Angie! :):):)

I hope with all my heart that this works wonders for Izzi, bless her. :heart: And what an absolute champion she is! :kiss:

:mademyday:

Dusty. xxx
 
Spoke too soon ;)
Quit Tacro 1/16
Second dose of Simponi 1/21, restarted Tacro due to return of symptoms.
Elevated CRP and sed rate, and the rest of her labs are just basically abnormal.
I'm going to see if an increased dose is an option, or if it may take longer for it to kick in (doubtful). otherwise, on the lookout for some more drugs!
 
Oh man ang! This just sucks. I wish I had some pearly words of wisdom. All I can say sis you hAve been here before and with your tenacious pursuit and adorable izzi's courage you have made it through. Hopefully this time will be a little easier!
 
Ugh no Angie! I am so, so sorry to hear this. :(:(:(

I hope the tacro can weave some magic until you can find a longer term solution. :ghug:

Sending absolute MEGA loads of love, luck and healing thoughts your way! :Karl:

Thinking of you both.

Dusty. xxx
 
It took my daughter several doses to respond to Simponi. That was for AS, and the dosing schedule is different (I think?) but I would imagine it would two doses is really too soon to judge.

What dose is Izzi on? We have discussed Simponi for my younger daughter, and both her GI and rheumatologist thought we would start out with 100mg every 2 weeks. My daughter is much older than your though (about 92lbs) and that's probably the adult dose.

Hang in there, sending hugs!
 
Sorry to here this. She seemed to be doing so well. I hope you get answers and solutions soon!
 
She was switched from every four weeks to every three weeks on simponi (supposed to be every 2 but insurance approved every 3). I delayed her third dose until yesterday due to a 103 temp last week. Our doc is also trying to get preapproval for another out of state second opinion.
She is having regular accidents and is beat-we have been sledding, skating, and snowshoeing this week and her fatigue is so obvious but she still wants to do stuff...Love her spunk!
 
Glad to hear about her spunk!
I hope the simponi kicks in soon. Where are you guys looking for another opinion?
 
Thanks so much for the update Angie. :ghug:

Your lass surely is an amazing young lady and one that so deserves a long and lasting break from this bloody disease. Sending MEGA loads of luck that the Simponi gives her this!

Thinking of you! :heart:

Dusty. xxx
 
Thanks, ladies!
Kim, our GI has requested that we see Dr. Hyams in Hartford CT. I hear he specializes in IBD and he has had others from our practice seek his opinion. I have a feeling we'll be approved to see him...but it takes time, which is fine.
An added bonus is visiting another forum member while we are there...Izzi is beside herself to meet other Crohns kids her age. :)
 
D has been on Simponi now since August I think now. It is certainly easier for her to use. No allergic reactions & I can certainly see her keeping to schedule when she is out of the house on her own. It took about 6 weeks to feel a difference with Simponi. I think this drug is the only reason she was able to avoid surgery in October. This was the only drug that made a vast difference in healing in her colon. Seeing the MRI images from March 2014 to October 2014 was like night & day. I hope you see positive results on it.
 
The last two days she is killing me-we went cross country skiing at the park across the street yesterday (well, they skied. I hiked in 2' of snow, taking turns picking them up when they fell). She had been sitting for a few minutes, so I went to check on her, and she was crying because she had to go and couldn't hold it, and that "i hate my crohns, every time I am having fun it gets ruined". I got back to her brother who was crying because I left him ( he fell in the meantime).
Tonight (we were going to ski again but decided against it after yesterday) she was sooo tired and I had tucked her in-she was just falling asleep and had to run to the bathroom. She asked me to tuck her back in and was crying again. :(

I wish I could trade places with her! <3

This consult can't come fast enough!
 
Oh man Angie :ghug: this all sucks so bad. :voodoo:

Thinking of you both and sending tons of hugs and healing thoughts. :heart:

Dusty. xxx
 
Also, are you aware that Dr. Marla Dubinsky is at Mt. Sinai now? Would that be an easier approval since it is in-state?
 
Thanks, all. :)
Momtotwo, we've been to Boston children's twice-they recommend a permanen subtotal colectomy. While I am not fully against this option, she was in remission on tacrolimus when they wanted to do the surgery, and I was reluctant. Now that her remission has ended, I would like to exhaust all possible options before a colectomy, as she will still suffer from crohns plus deal with an ostomy.
Haven't heard of Dr dubinsky. From what Iunderstand Dr. Hyams specializes in ibd and comes highly recommended-and out of network docs are all equally difficult to get approval for-we just have to play the insurance game !
 
I have head of Dr. Hyams (prob when I researched drs in the northeast when we were seeking a second opinion, too.) I understand why you want a third opinion. I would do the same. Actually, I might be doing the same very soon.

Dr. Dubinsky was at Mt. Sinai in CA and is considered one of the world experts on IBD in children. She has also been involved in med research and early- onset IBD. I don't know if her approach would be any different than Boston Children's since i haven't taken my child to see her yet. Mt Sinai is in-network for us and thought it might be on your list, too, since you live in NY.

I hope you get approval to see Dr. Hyams, soon.
 
Angie,
I have also heard excellent things about Dr. Dubinsky at Mt. Sinai. We tried to get in with her while we are in New Jersey but they don't take our insurance at all.
 
No, our insurance picks and chooses in the state lol. He's technically more of a fifth opinion, plus phone consults, but if we are at that point again in the near future I will add Dr dubinskyt to my list :).
I met Dr hyams this weekend- like him so far-fingers crossed for approval.
Izzi has chosen to do her learning fair project on crohns...<3
Eta wondering what insurance? What a shame. We have mvp-I know we have a decent policy so I am counting my blessings.
 
Izz had Simponi on 3/13 and 4/3. I found it interesting that the night of 4/2 she was up almost every hour in the bathroom...the night of 4/3 she was up twice.

Her fatigue still bothers me, and she is down 5# since her well child visit in February (after losing 13# in the 12 months preceeding that). I have a feeling she is still doing OK on the charts, so I'm sure it won't concern her doc.

I came away from our consult with a few things...
1) Try harder to get her on pills-he'd really like her to try uceris to get the steroid benefit with less side effects.

2) Get her off Tacro/Bactrim as it is less effective and not worth the risk

3) Start her on Entyvio 4 weeks after d/cing Tacro/Simponi.

I will call her regular GI after they've received the summary.

He also says that most people that had no initial effect from Remi or Humira won't respond to Simponi, which makes me fairly comfortable stopping it. (It seems to decrease her nocturnal bms immediately following a dose, but this could be coincidental).
 
Sorry to hear she has to switch but hopefully Entyvio will be her miracle drug!
Kind of makes sense though - if she didn't respond to Humira/Remicade, that then a response to Simponi is unlikely. I guess increasing her dose isn't a good option?

Fwiw, M responded quite well to both Humira and Remicade for a while, which is why we chose Simponi instead of trying something like Stelara.

Good luck!
 
Thanks Maya! We've decreased the time between doses but her gi isn't comfortable increasing her dose...again, she's the only patient in the practice on it. The nurse mentioned another patient just got approved for entyvio...not the first-yay lol. They only use uceris for ee though, so again we are on a learning curve.
 
Good luck with starting the enyvtio!
Expect a few days of not feeling well after the infusion. That is what we are finding though I hear it gets better with time.
 
My son gets Entyvio every 4 weeks instead of 8... He has ZERO side effects after the infusion. He has twice gone from the infusion straight to school and play Jazz band for 4 hours at the jr varsity and Varsity basketball games.
That being said.. We can't seem to get off Flagyl/Cipro combo.. When on that he feels great... off that, we have rectal cramps and drainage. I just wonder if my poor son's rectum is far too damaged for any medicine to heal it. We had normal labs from Dec thru March 12th.. went off the antibiotics for 3 weeks and the inflammation creeped up just a bit. Our Mayo GI says Vedo is slower than most meds to work,..but has been winning the race in the long run. I'm with you in trying to keep the large bowel. And our Doctors agree that with his age... Hang on and wait and see. It's just such a pain in the neck. Having it in front of us all the time. Somedays I just want it out!! But its not my body to make that decision!! My son lives with a bag now... and small bowel is fantastic. No issues but that darn rectum. Its scarred and narrow... and sigmoid colon is strictured enough that scope can't get thru. So if Vedo ever helps the rectum... plan is to remove sigmoid colon and reconnect. But this is surely years away. Good Luck Angie. It stinks having refractory crohn's kids. I've been reading about Celgene....
 
There was recently a medscape article called "Current, New and Future Biological Agents on the Horizon for the Treatment of Inflammatory Bowel Diseases"

It has a great image of all the things in the pipeline including IL 23/12, IL 13, IL 6, Etrolizumab (similar to Vedolizumab), JAK inhibitors (like Tofacitnib - Xeljanz, already approved for RA), Laquinimod and even more.
 

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I don't have the link (I forgot to save it - there's my old lady memory :lol:) but if you google the title I'm sure you will find the article. It's a very recent article - published in March 2015 I think, so it should be easy to find.
 
Kathy, I feel your pain! Such a struggle to keep them feeling well-ish. Today marks three years since her last hospitalization...despite Dr. Hyams dislike of tacrolimus, I wouldn't trade the last three years to reduce her risks. Wishing treatment was easier for all'll of them, or at least that it worked regularly.
Thanks for the link, Maya...I'll add it to my reading list.
We are still waiting for the report to reach izzi s gi here-I am shocked they didn't fax it but hopefully it will arrive soon.
Izz has managed to swallow 2 mini m and 's...No pills yet but we keep trying! :)
 
We used
Mini m&ms
Rice
Tic tacs
Jelly beans
With a favorite toy in the package pulled out and put in front for each swallowing session
But not opened till the pills were swallowed.
It took two weeks but worked well at 7.5 years old

Good luck
 
When my Dad was getting me to learn to swallow my pentasa it helped when he covered it in pudding. It went down really easy and the pudding kinda acted like a lubricant. He would mold pieces of bread in smaller sizes and then I worked my way up to the Pentasa. Hope it helps :) We also used tic tacs too.
 
Ty! We have tried a few times over the years and she has come so far! She realizes what she needs to do but I think there is still a bit of a mental leap to get over-knowing that they are pills and not m and ' ms. I told her she has to try to swallow a capsule once a day-if she can't get it down I open it/dump it in her bactrim and we try again the next day. I tend to put a lot of pressure on her-this approach works better (today she tried to swallow the pill while I was in the shower-I had forgotten and just told her to take her meds-she came in to let me know she tried but couldn't get it down.
I actually don't think it is a game changer-I know Dr hyams wants her on budesonide but if she can't do pills she can do prednisone and we will continue to work on it. I think she is ready, though.
 
It is a big leap to try pills. I ended up throwing the capsule so far down my son's throat that he had to swallow! He asked me to do that for every one after that, lol
 
Lol...She would freak out, but that is something I would totally do! She is up to 9 pills a day at the moment-but I keep telling her no pressure lol. Twice this past week we were at the park for under an hour and we had to run home twice-ready for a change!
 
Poor girl. My daughter wouldn't want to go back if she had to go home once. Kudos to your girl for trying to keep on having fun...
 
We emptied the capsule in applesauce pudding etc
But then had him try to swallow the empty capsules
Less stress that way

There is also the oroflo cup
So she can swallow without having to learn to swallow ;)
 
We own the cup, and the pill glide spray too lol. :) didn't think of her doing the empty capsule-great idea! Carol, we have the discussion often about how we allow the disease to affect her life...not the hand you're dealt but how you play it. It isn't feasible to never let crohns affect your plans but I hate to allow it to run her life! That being said, it is a delicate balance and I sometimes feel that I push her too much. I'm grateful that we have a five acre park across the street (and can't wait for them to open the bathroom for the summer lol)
 
Good luck on getting her to swallow pills. We had two weeks of pure torture with my son. He physically could do it, it was all mental. I actually emailed his teacher at the time (he was in 5th grade and had a male teacher that they all really liked, i.e. the "cool" teacher). His teacher took him aside and talked to him and then showed him how he takes his medicine with no water! ;-) the very next day my son took his pills and was so proud to go into school to tell his teacher. Whatever works :)
 
izzi'smom said:
We own the cup, and the pill glide spray too lol. :) didn't think of her doing the empty capsule-great idea! Carol, we have the discussion often about how we allow the disease to affect her life...not the hand you're dealt but how you play it. It isn't feasible to never let crohns affect your plans but I hate to allow it to run her life! That being said, it is a delicate balance and I sometimes feel that I push her too much. I'm grateful that we have a five acre park across the street (and can't wait for them to open the bathroom for the summer lol)
Click to expand...

It would make a difference if we were closer to the park. As it is, we're 2 miles away. Thankfully our park has flush toilets.
 
We like to hike-there are some fabulous parks and waterfalls here-but I have a feeling we will be doing a bit less this year. That being said, I always have spare everything on hand (for her lol...didn't help when we visited a park right before her out of state apt. She said mom there's a hole in your pants. Four inch tear, showing my beautiful link underwear. Wore my scarf around my waist for the consult lol)
She tried an empty capsule today-they are tough, as they float !

Her doc got the faxed report today (almost 2 weeks!) But was busy with patients-I will find out if we need an apt our he will just rx her some new meds.
 
Yeah floating is an issue but less pressure on the kiddo
Have her tilt her head down to drink /put it in
Then have her push her head back to swallow quickly
Once you get the floating pill down the others are a piece of cake ;)
 

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