I just got a call from the doctor that the Apriso is not working any longer. Honestly I was shocked it worked at all. I was hoping maybe she would be one of those really lucky people who stays mild their whole lives. Her fecal calpreotecfim is now back up just under 1000. He is starting her on entocort for six weeks and then we will make a plan for what med to go to. I am just feeling really down in the dumps.

I'm so sad for you. Even when a mom is years into this the disappointment doesn't get easier.
I hope the entocort helps. We just started it here too.
What are the med options?

Sending hugs!! My daughter has been on Entocort for a couple months and it brought her FC down. We are just beginning to taper.

I hope you can get a plan together soon.

Why wait in maintence meds ?
You will still need a steriod bridge till the med kicks in
After 6-12 weeks depending on the med
So now your at 4 plus months on steriods

MLP,
Not sure why but I was to upset to ask.
Pilgrim,
Not sure if he will want to try 6mp or imuran or Jump right to remicade.
Burying my head back in the sand. Just not ready to deal with this.

Really sorry to hear that! Wish you could keep your head in the sand for longer. Hope the next med works wonders.

Sometimes our kids are so much smarter then us.
Caitlyn says to me last night why don't we look into LDN for her younger sister?
I was like now why the heck didn't I think of that?
I am going to call her doctor and speak with him about it. Hopefully this time it won't take forever for him to call me back.
Speaking of that I did say something to him about how awful the nurses are about getting messages to him. He checked the System. There were no messages put into him by the nurse since December. He said he was very upset by this and was going to find out what was going on. He said he is aware of issues with the nurses.

Hope you get a response from her Gi
But didn't C have a second resection and she had been in LDN ???

Tricky when you have two

Does LDN usually bring down an FC that is that high?

It is hard when you have two. What makes it especially confusing is that they can respond differently to medications and their diseases can be very different.

MLP,
She was in remission on LDN for twenty months. Just short of two years. Then it just stopped working for some reason. Her body is very resistant to meds. Entyvio is the only other thing that has worked. The second resection was just two months ago. It was a very small area that wouldn't heal due to scar tissue that had built up. Thankfully it seems otherwise the entyvio is working.

I am so sorry to hear that your daughter is suffering again. Hopefully you will find something that works for her soon.

Just sending hugs... and hope that you will find the right treatment soon!

I'm so sorry, Kim. It's terrible news.

Have a call into her doctor. He is out of the country for the next few weeks.

kimmidwife said:

Have a call into her doctor. He is out of the country for the next few weeks.

How's she feeling Kim? Any better on Entocort?

Maya,
Not yet and she is getting very cranky from it. ☹️

Poor kiddo . I hope Entocort works for her. My daughter's FC went down on it, but it was only 200 when she was flaring (a pretty mild flare) -- now down to 44 after 2.5 months of Entocort (9 mg).

I hope her GI can figure something out for her soon.

We had our follow up with the doctor today. He is concerned about the headaches my younger daughter is having and about the odd skin rashes she is having. He thinks there is a slight possibility it is sweets syndrome but it doesn't really fit the picture and looking at pictures of sweets it doesn't look exactly like it to me.
The plan is blood work, another fecal calprotectin, a dermatology consult, and a CT scan for the headaches.
Then we will meet again to discuss what med to go with next. He wasn't so keen on trying LDN for her. I am going g to push to try it before we try imuran or something else.

Tagging my little penguin - her son has Sweet's syndrome.

Thanks Maya! I forgot I was thinking to tag her earlier and she if she has any pictures of it.

Sweets syndrome lesions can vary in appearance
Ds doesnt look at all like the "books"
The key is you get lesions ( flat or hive like or tiny pimple like - Ds has had all three) and they don't move like hive they can be itchy or sore or both
They tend to come with flu like symptoms ( headaches body aches sometimes fever nausea and abdominal pain /fatigue ) the flu like symptoms last for about 48 hours for Ds
His rash appears with a few spots and they fade over a few days but more new spots are added daily. Total time a week or so of spots .
The only way to know if it's sweets is to biopsy since the appearance can vary so much even with in one person.

CT scans of the brain have way too much radiation please push for a Neuro consult and brain MRI .

If it is sweets realize she probably will need stronger meds than LDN
Sweets is very hard to control and needs immunosuppressants and/or biologics to keep it under control or daily pred

We upped Mtx to control Ds and that wasn't enough
Also upped humira dosing which were are still hoping will be enough
Colchine isn't recommended for Ibd kids but we tried it and failed with lots of D
The other drug dapsone we were told should never be given to kids especially Ibd kids .

Sweets syndrome can get ugly fast
But due to the higher level meds Ds is on for Ibd /JSpA his is milder and has not required hospitalization

30% reoccur until the trigger is under control
We don't know Ds trigger ( not crohns flaring as far as we can tell)
"Catching" the lesion for biopsy is tricky but really necessary
I would post pics but those won't help you since her may look different and still be sweets
Insist on the biopsy since there are other ugly things it could be that sweets differentiated from
Sweets in kids is rarely cancer - that tends to happen in adults so beware when your reading
Make sure your dermo had seen cases of sweets before
It's rare so most kiddo dermo haven't

Thanks MLP. Hers look like a single blister. She had one on one ankle then one in the other then one on the arm then on her face she got several around the mouth. Then one above her eyebrow. It is hard to say if she had flu like symptoms because it occurred over 2 months. She did have a really bad sinus infection right before the ones on the face appeared.
I tried convincing him about the MRI vs CT scan but be is worried she won't hold still for an MRI.

How old is she? Many children's hospitals have movie goggles for MRIs. That helps them stay distracted and still. They can also sedate her if absolutely necessary.

They typically are single
Ds started with one on his arm
Someone's it's one on his chest then a day later another one
Sometimes his back or face or legs
Never a ton at once and most dismiss the rash as minor - nothing to worry about
Allergist thought it was hives

Biopsy is the only way to know
Second the movie goggles but if she has to lay on her stomach say for a abdominal Mre then no movie goggles
Which is harder to keep still

Brain Mre - Ds has had three
Very quick and the movie goggles helped a lot
Just issues if she has braces since its of the brain

I dont think they offer the movie goggles. But I will call him Monday to discuss.
I just realized something, I think she has CDiff. Tonight for the second time in a week she had a poopy fart and I realized it smells like the CDiff smell and looks like that seedy poop as well. She was on antibiotics for 10 days for a severe sinus infection. I guess that could have caused it.
😭

Poor girl, hope it doesn't cause too many issues. Hope you can get an answer for the headaches, etc. I think head MRI's are fairly short, about 10 mins if I remember. We tend to get music through the headphones to keep your mind occupied

I hope she doesn't have c.diff.

I hope not. We finally got all the stool cultures in Thursday and the blood work done on Friday. She was so good during the blood work I am so proud of her.

Finally got her fecal calp back it was 983. Her see rate was 17 and crp was normal. So the budesonide hasn't helped much.
Now he wants to put her on sulfaszaline. Refuses to take try LDN with her. Next step would be Remicade.
I am not very happy about it. But agreed to try it for six weeks.