Lucy Update

[polly13]

Just giving a quick update on Lucy. All in all she feels ok, but
....... Fecal Calprotecton - still elevated slightly at 895 down from 1900 in July
........Offical diagnosis of oral crohns at our last GI vist
........Frequent trips to bathroom
........losing weight - had dropped 2KG at our last GI appointment in October
I think about 2kg since - she is growing and eating.
........lots of mouth ulcers
........Blood work fine (this is normal enough for Lucy)

So we have had an MRE last week , GI has tested her Humira Levels (awaiting call back on this), she is on steroid mouthwash for her mouth ulcers. We see GI again on 10th of January at which point he will make a decision on whether Humira needs to be increased to weekly, we also see the paediatric dentist on the same day. Her little mouth is quite sore at times but she is such a trooper and doesnt really complain at all.

last two blood draws, they had difficulty getting a vein and had to poke around quite a bit when they did get one, also when canulating for the MRE last week, they had to stick her 4 times and poke around a lot when they did get in. This is really new for us as up until now there was never a problem getting a vein for blood. Has this happened anybody else and if so did it right itself or if not how do you manage now.
Thanks Polly

 

[my little penguin]

Vein issues here
We were told scar tissue is forming
So they suggested to GI above or below where they normally "stick" them for blood or iv's

Why would they make you wait 6 weeks to decide to live up humira if she is doing so poorly
?
Can she drink supplements for nutrition to help stop the weight loss ?

Ds is at humira every 5 days and it has made a big difference
Is she on the kiddie dose or the Adult dose ???

 

[pdx]

Sorry to hear that Lucy is still dealing with so many symptoms. I agree with MLP that you should push to get a sooner decision on the Humira increase, once you have the results from the MRE and the levels testing. My daughter is going through a similar flare, and even though our next official GI visit isn't until January, we've been able to make treatment changes already via phone and e-mail contact with her doctor.

You may have already tried this, but good hydration and heat packs can help with vein access. Hydration is harder when you're dealing with diarrhea, unfortunately.

I hope all the testing helps you figure out what's going on, and that Lucy is feeling better soon.

 

[polly13]

Hi have a little update since I posted yesterday, I spoke to GI nurse yesterday who told me that Humira levels were fine and increasing is not indicated. She also suggested that we try putting Lucy on the Cinamon and Benzoate free diet which has had some success in treating oral crohns - anybody tried this?

 

[CarolinAlaska]

Poor Lucy! I have no experience, but I sure hope it works.

 

[Farmwife]

Poor Lucy.
No cinnamon? Interesting, never heard of that.
Grace has vein issues. Lots of scaring.
They wrap her arms in warm blankets to help but they still stick her a few times now.
Hugs to you both

 

[Maya142]

The vein issue could definitely be scar tissue. I agree with Farmwife - we use a hot pack before sticking my daughter so her veins are easier to see. We also try to rotate sites.

So if her Humira levels are ok, what are they going to do get her better? An FC of 895 is actually quite HIGH -- I know it has dropped, but it's still way above normal! And she has lots of symptoms. Are they planning on switching drugs? Upping her dose of MTX?

I haven't ever heard of that diet, but it seems to me that you need more aggressive plan - I would hate for her to develop complications like fistulae and abscesses or strictures.

 

[polly13]

It's a difficult one we had upped the methotrexate but she didn't tolerate it well so we reverted I guess that is on the cards, scope was clear and awaiting the results of the mre.would her mouth affect the calprotectin result?

 

[Maya142]

I don't think so - I think it mostly the lower GI tract.

I guess once you have the results of the MRE you will have a better idea. Her scope was completely clean - no inflammation at all? There must be inflammation in her small bowel which is making her FC so high.

If her levels are ok and if the MRE shows inflammation in her small bowel, then it's likely that she is not responding well to Humira anymore and needs a different medication.

 

[my little penguin]

Fwiw ds levels have always been fine
But since he had symptoms still rheumo increased frequency anyway and it helped a lot
Not saying this is ideal but ...
It worked for ds
When you increased mtx did they increase her folic acid and give her lecovorin to stop side effects
This has really helped ds
He takes 3 mg if folate a day

 

[polly13]

Taking more folic acid and also zofran (anti sickness) she was still vomiting with that but ok on the lower dose

 

[Maya142]

Leucovorin (which is folinic acid) really helped my daughter too. We also increased folic acid and had her take more Zofran, but she still vomited on higher doses of MTX and was so miserable that our doctor eventually took her off it.

We then went to Imuran instead which worked with no nausea/vomiting. Would that be an option for your daughter?

We also have increased the dose (for Remicade, not Humira) when M's levels were ok. It did help - for a while, at least.

 

[Farmwife]

Grace switched to Imran from mtx and that seems better for her.
Might be worth asking.

 

[polly13]

She was on 6 mp before both on its own and with infliximab and it had no effect, does umuran work the same?

 

[Farmwife]

Not sure. Graver never did 6mp but had done sulfasalazine and mtx.

 

[my little penguin]

Imuran is a less broken down form of 6-mp
Ds had issues with 6-mp raising his liver levels
Our GI practice here will not prescribe imipramine or 6-mp with a biologic anymore
We were looking to switch and try Imuran with humira for his Sweets syndrome and GI said their group won't prescribe the two together too much risk
But they will use mtx with humira

I would see if they could try humira once a week
If it fixes her symptoms.....
You will know

 

[Catherine]

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.2011.04792.x/full

http://www.dermnetnz.org/topics/orofacial-crohn-disease/

 

[polly13]

Hi had indicated he would move her to weekly humira but I'm wondering following conversation with ibd nurse. Something is telling me GI doesn't do 6mp with biologic any more - it's 4 years+since Lucy had that combination. To make matters worse poor little pet is down with tonsillitis

 

[CarolinAlaska]

Hi had indicated he would move her to weekly humira but I'm wondering following conversation with ibd nurse. Something is telling me GI doesn't do 6mp with biologic any more - it's 4 years+since Lucy had that combination. To make matters worse poor little pet is down with tonsillitis

Aw! Dangit!

 

[If*]

last two blood draws, they had difficulty getting a vein and had to poke around quite a bit when they did get one, also when canulating for the MRE last week, they had to stick her 4 times and poke around a lot when they did get in. This is really new for us as up until now there was never a problem getting a vein for blood. Has this happened anybody else and if so did it right itself or if not how do you manage now.
Thanks Polly

Hi, a few things that might help. Being hydrated is often important and during draws, sticks ~ can help viens.
Also, are they using a pediatric size needle? They have them for i.v use as well and even some adults can use them. I have found the smaller needles to be very helpful, easy for an i.v and also super painless for the stick.

I hope she feels better soon. May God watch over you and yours.

 

[my little penguin]

Big hugs on the tonsillitis
Hopefully you can talk to
The GI to figure out a plan

 

[kimmidwife]

Big hugs,
Ask for magic mouthwash prescription for the mouth sores. It really helps them heal. Is she taking a good vitamin supplement?
Vitamin C is also supposed to help with them.
I hope the MRE gives some answers. It is so hard.

 

[kimmidwife]

Here is a site with a few recipes for magic mouthwash. Doctors sometimes make it up different ways. In the USA it is prescription.
http://www.drotterholt.com/magicmouthwash.html

 

[polly13]

Thanks for recipes for the majic mouthwash lucy uses a steriod disolved - buednesone (sp?) and it works quite well but once we stop the mouth gets irritated again. I am definately going to ask the IBD nurse about the majic mouthwash next time Im taking to her. Her mouth is actually getting worse - her gums are swelled and coming down over her teeth so it looks like her teeth are tiny and the sides of her mouth are quite sore. IBD nurse tried to get appointment with dentist pushed forward but to no avail so we wait for the 10th of January. There is only one paediatric densit with a speciality in Crohns attached to the Childrens hospital and he doesn't do a private practice so we need to wait. Had thought about taking her to my regular dentist but I doubt he has ever seen a child with oral crohns so I dont think there is any point, I would only be subjecting her to further examinations. She got though her tonsilitis well and finished her anitbiotic without any problems, but she missed a humira dose so hopefully that wont set things back even further.
Somebody asked further up about her scope - the GI on the day said there was some inflamation he thought wasnt sure but couldnt satisfy himself that it was entirely normal either but biopsies came back with only very mild inflamation and they felt that this didnt account for symptoms or calprotectin levels.
HEr bowel is ok at the moment ish (well no worse) but her mouth is getting worse, which has me really concerned because when I think back to when she had her first major flaire (that last almost 3 years) her mouth was a pre-curser to her rectum. Also complaining about a pain in her hip a lot - have a call into GI nurse about this. I hate crohns it lulls you into a false sense of security and before you know it, you child is suffering again and it slowly takes over your life again.
somebody asked about a med change - I think this is on the cards but only a combination of what we are currently on because as far as I am aware we are out of options as she has tried everything. Only two biologics are licensed for children in Ireland, infliximab and humira so if the humira has stopped working or is less effective now there isnt really another option at the minute.
Anyway on we go...........

 

[my little penguin]

Can they give something off label
I know in extreme cases here the doctors can submit paper work to get approval
For things only approved for adults
Links Stelera or simponi
Has she tried ivig ?
Or illaris ?
Both have been used for refractory cases
Can she see a rheumo
About her hip ??
JSpA is common with Crohns
Big hugs

 

[Maya142]

Simponi, Entyvio and Cimzia are used here off-label for kids. Stelara is also starting to be used more (it was just approved for adults with Crohn's).

Cimzia is currently in trials for pediatric Crohn's in the US and I know Simponi is in trials for pediatric UC. They're both also often used for kids with juvenile idiopathic arthritis.

I agree about seeing a rheumatologist, because if it's JSpA, it can cause permanent damage.

 

[polly13]

I don't know if they use off label drugs it has never come up so maybe they do.

 

[polly13]

Small update we see the dentist on Thursday so fingers crossed he will be able to help. Found out both stelara and entivo being used - Stelara only in dermatology but I understand both are being approved. Got referral to Rhuemi don't know how long it will be though!!

 

[my little penguin]

Fingers crossed and good luck
Entivyio does not help arthritis associated with Crohns

 

[polly13]

Thanks MLp nor is it really effective for perianal disease or oral crohns from what I gather - I'm still hoping he will increase humira as I think there is some wriggle room there. My sister is the rep for stelara in Ireland and there isn't anybody as young as Lucy on it for anything here.

 

[Maya142]

I hope he'll consider increasing the Humira - it sounds like that might really help with all her issues.

Fingers crossed!

 

[Farmwife]

Grace was put on the adult dose of humira while we waited for the (stupid, careless, mean) insurance company to sort out Remicade treatment.

It did seem to help more then the pediatric dose ever did.

Sorry as you can tell I still harbor some ill will towards the insurance company. Lol

 

[polly13]

Just wanted to give a quick update as to where Lucy is at now. We got an emergency appointment with the dentist before christmas who really only just confirmed the diagnosis of oral Crohn's and felt that medications she were on were appropriate i.e steroid mouth wash and the fucidin HC cream. She also recommended a benzoate free toothpaste and recommended that we put her on a cinamon and benzoate free diet, she started using the toothpaste immeadiately and she started the benzoate free diet on the 1st January (felt it would be too cruel to not allow her chocolate over christmas) - while the diet is a pain as all labels have to be checked for benzoates and spices resulting in lots of foods that she cant have - it has made a significant difference and her mouth is somewhat improved - so we continue with this for 3 months and review - given the improvement I am happy with this course of action for now in relation to her mouth.
So yesterday we met the GI and the dentist - GI meeting not quite as positive - she has lost another 1.5kg in the last 3 months - totalling I think 3Kg in six months - which is I think about 6.5 llbs, which is a lot when you are only 50llbs to start with and she hasn't grown in the last 3 months. However, scope relatively clearn, MRE clean, bloodwork normal, calprotectin slightly elevated, perianal area clean. Hip pain still continuing but no inflamation or associated stiffness and I am coming to the conclusion that the pain is actually in her belly and she isnt able to pinpoint it - she sometimes has this problem.
Has developed some antibodies to Humira so he has increased the dose to 40mg every two weeks with the hope that will help and repeat all tests again in 3 months.
Have to say I was so proud of my little trouper yesterday, she was able to list off all her symptoms, her list of medications and what day of the week she takes them and listed of the foods that she cant have because they contain benzoates. When we told her that her new Humira dose comes in the preloaded syringe and doesnt have the citric acid in it so wont hurt - she just wanted to know could she give it to herself cause shed like to start doing that herself. She is such a trooper, never complains how much she is prodded and poked - she just gets on with it and I think sometimes because she is so capable and understands and manages us in managing her illness that we sometimes forget that she is only 8 and that she really shouldnt have to be dealing with all this crap.

 

[pdx]

I hope that the Humira dose increase works really well. I'm impressed at how knowledgeable and brave your girl is. (but yes, it's awful that she has to be that way at such a young age...) :ghug:

 

[Maya142]

Way to go Lucy!! What a tough kid! I hope the shots go well and the increased dose of Humira helps her.

Fingers crossed :ghug:.

 

[kimmidwife]

I really hope the increased dose helps and she gets feeling better,z

 

[polly13]

Just a quick update - she has two doses of the new humira dose and her mouth has cleared, while it was getting better with the diet, I think we have to put this down to the humira. Appetite greatly improved also, so hopefully the weight loss was due to her mouth being sore. so all good for now.

 

[my little penguin]

:dance: greatness

 

[pdx]

Glad to hear this!

 

[Maya142]

Glad she is doing better!!

 

[Farmwife]

Awesome!

 

[Sascot]

Glad things are going well

 

[polly13]

Good update after 9 months of struggling. Lucy had GI and dental appointment yesterday, so her mouth is really good and dentist discharged her back to our own denstist ( will see her again if mouth flares) and bloodwork good, no symptoms and she has grown and put on weight since January - so all in all a good day. Days like this I love Humira.

 

[pdx]

What a great update--so glad to hear all of this!

 

[kimmidwife]

Yay for good news!!!! that is amazing!!!!

 

[Farmwife]

Awesome!