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Crohn's Disease Forum » Parents of Kids with IBD » Another year older and a new Dx.


 
01-28-2017, 11:39 AM   #1
Farmwife
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Another year older and a new Dx.

My Grace turned 8.
She wanted her favorite Mexican restaurant, so she could order chicken nuggets.
It was a good family party.
Everyone bought her some kind of art kit.
The next day I found glitter glue stuck on my rear.
Looked like I squashed tinker bell.
Then almost broke my neck on thousands of tiny beads that had accidentally fallen.
I'll make sure to thank my mother in law at the next visit.

Grace was dx with Ehlers-Danlos Syndrome (EDS) last week.
So now we meet with the gi and discuss EDS vs IBD.

At least it's starting to all fit.

Hugs to you all!
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
01-28-2017, 11:55 AM   #2
CarolinAlaska
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I'm glad Grace had a good birthday. I wish I could see a picture of her. I love the word picture of squishing Tinkerbelle with you butt. (I do believe in fairies, I do believe in fairies!) Jae is hypemobile and probably has EDS also. I'm glad things are starting to come together in answers for Grace, but wouldn't wish EDS on anyone. I hope she can find treatments that help.
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Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
01-28-2017, 12:21 PM   #3
pdx
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Happy birthday, Grace!

My kids are 12 and 14, and every flat surface of my house is still constantly covered with craft projects.

Hope that the new diagnosis helps Grace's doctors figure out some good treatment options.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
01-28-2017, 01:49 PM   #4
Maya142
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Happy Birthday Grace!

Sorry to hear she has another dx, but I hope her GI is able to come up with a good treatment plan.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
01-28-2017, 03:20 PM   #5
Sascot
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Was wondering how things were going. Haven't been on for a while. Happy birthday to Grace!! Can't believe she's 8.
Hope the new diagnosis helps with treatment plans
01-28-2017, 10:07 PM   #6
Pilgrim
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Happy Birthday Grace!
You have me in tears, FW. Must have stepped on 10 beads today and pulled 5 from the dryer!
Keep us posted on the new diagnosis and what it means and where you go with it.
01-28-2017, 10:15 PM   #7
my little penguin
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Which eds type?
Type III
is typically benign and associated with hyper mobility
It tends to run in families
Other types are more of an issues
Ds was dx with benign hyper mobility years ago as are other family members

Makes JSpA flares harder to detect and does increase joint pain if pt is not maintained
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01-29-2017, 08:07 AM   #8
Farmwife
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Thanks everyone.

Mlp, it's type 3 with a touch of classical. She just can't be normal. Lol
Unfortunately, benign is not Grace's eds or a lot of kids.
But im thankful it's not the deadliest kind.
01-29-2017, 08:51 AM   #9
my little penguin
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https://www.marfan.org/download/file...ity%20Type.pdf

Benign in meaning it's not the one involving the heart /potentially fatal
Benign in It causes pain , skin issues and joint problem
Which similar to JIA/JSpA require PT/Pain meds to strengthen musucles around the loose tendons near joints

Hope they get her on a good PT program soon
And into a chronic pain program
01-29-2017, 11:26 AM   #10
Maya142
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M also has benign hypermobility. That's not to say it doesn't hurt, just that it's not fatal. PT really, really helps and she does her PT exercises at home daily.
01-29-2017, 11:38 AM   #11
my little penguin
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Ds , most his relative and I have it as well.
As Maya said lots of exercise and working hard not to abuse the overly stretchy joints

Just like ibd vs ibs
Both cause symptoms
Both make you miserable
Only one does horrid damage
01-29-2017, 03:32 PM   #12
Farmwife
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Sorry guys, nerves on edge while trying to deal with this.
Grace's effects her skin (silver tears, very soft skin but not overly stretchy).
Her low blood pressure, dizziness, constant low grade headaches and fainting they say is because of eds.
If she has gastroparesis, eds would probably be the cause.
01-29-2017, 03:47 PM   #13
Maya142
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Sending hugs Farmwife. A new diagnosis is NEVER easy.

It sounds like Grace has POTS. POTS is really common with EDS and so is Gastroparesis. For a while we thought M had POTS because she had the same symptoms - low BP, dizziness, fainted. Typically a cardiologist will treat POTS and there are some lifestyle things you can do that may make her feel better (we were told to increase salt intake and fluids).

For Gastroparesis, she'd need the gastric emptying scan to confirm. It can also be managed with diet changes and of course, medications. Erythromycin is typically used first.

None of this is easy - I'm sorry Grace has to deal with so many more things. Hang in there .
01-29-2017, 04:05 PM   #14
my little penguin
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Second the GP can be managed
The gastric emptying test is fairly easy -and boring

Second seeing a cardiologist for a tilt table test for pots
01-30-2017, 10:26 AM   #15
Optimistic
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Farmwife, I'm sorry to hear about this news. A new diagnosis is scary even if our rational mind knows it can mean new minds can review her and new treatments become options. She sounds like such a happy and resilient little girl. I'm glad she enjoyed her birthday and those authentic Mexican chicken nuggets!

My ibd son has a mild case of type 3 eds as does one of his siblings. We've learned type 3 can be all over the place in how it manifests and how severe. I hope you get some answers and a plan.

Craft on, Grace!
01-30-2017, 10:45 AM   #16
polly13
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Happy Birthday Grace - sorry to hear about diagnosis
01-31-2017, 02:28 PM   #17
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Grace is 8! where has the time gone? Happy Birthday Grace!
Sorry about the new diagnosis, I'm not familiar with it but as always sending lots of support your way as you figure out this new path.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
02-28-2017, 05:53 PM   #18
Farmwife
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Hi y'all.
For those of you in my hemisphere, I hope winter is being kind to you.
For those of you not in my hemisphere.....winters coming for you.
We've had a crazy winter.
One week in the minuses and the next in the 50's.
Hey, I'll take it!

So onto the post.
Saw the gi and agreed gastroparesis need to be considered but
than said she can't do the testing because Grace is on Norco (acetaminophen and hydrocodn) and tramadol (not given together and only if I run out of Norco).
The gi doesn't want to mess with taking Grace off of her pills and neither do I.

The gi and her pain specialist agreed to put her on Nuerotin/Gabapentin.
I guess it's too help with nerve pain.
Anyone try this med.

Things seem to be settling with her jia but now her ehlers-danlos is causing more issues.

Hugs from my little Farm Girl to you all!

Last edited by Farmwife; 02-28-2017 at 06:35 PM.
02-28-2017, 06:03 PM   #19
Maya142
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My daughter was also on Tramadol when we were considering Gastroparesis. We did the test off Tramadol though, so we'd get an accurate result.

Norco plus Tramadol is a lot of pain medication for a kiddo her age - have you considered a second opinion? It can really slow down the gut -- cause nausea, constipation.

We also tried Gabapentin - it helped with sleep for my daughter, but not for pain. We gave it to her at night since it made her sleepy.
02-28-2017, 06:19 PM   #20
my little penguin
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Honestly the gastroparesis test is for fours hours
Not ideal but we have gone off other meds for a over a week just to get accurate test results for other things (Ds does not take pain meds )

Second getting a second opinion
Has she been to an amplified pain clinic for kids
Cleveland clinic and the children's institute are close to you
Both get pain relief while getting kids off pain meds (that have been on them for years)
that other docs can't and still have pain relief
It is truly amazing to see


http://stopchildhoodpain.org/faqs/wh...tment-program/

http://www.amazingkids.org/Medical-S...rehabilitation

http://my.clevelandclinic.org/childr...hab/pain-rehab
02-28-2017, 06:27 PM   #21
Maya142
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We loved Cleveland Clinic! Every minute of it was worth it. M stayed 3 weeks but the length of the stay depends on how much therapy the kiddo needs. MANY kids are able to get off pain meds completely.

They do try and get kids off opioids (especially strong ones like hydrocodone) and replace them with meds like Gabapentin/Lyrica if necessary.

Cincinnati Children's also has a pain program, I believe.
02-28-2017, 06:32 PM   #22
Farmwife
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Lol, sorry Norco now, not tramadol.
I have tramadol when we waited for the script for Norco to be mailed.
Took 5 days to get it,

She is on half doses now but is given full dost for break thru pain. Maybe one a week.
Thankfully her pain is better but not pain free.

Her bowels (at least lower gi) seems to be working good. One to two bm's a day.
It's her stomach that seems to be slow.
02-28-2017, 06:38 PM   #23
Maya142
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Opioids don't work that way for chronic pain - she is not going to be pain free with them, unfortunately. In fact, for chronic pain, they stop working over time. You need higher and higher doses to get the same effect - that's why you should hold off on opioids for as long as possible.

That is typically why they do not give them to kids except for acute pain or for breakthrough pain - not daily.

For example, if Grace is on a half dose now (say 5 mg Hydrocodone) in a year or two, that may not doing anything for her. Then you would need to up it, say 10 mg. Then in another year or so, you'd have to up it again, and so on. The higher the dose gets, the more dangerous it is.

I don't have a particularly good solution, just thought you should know. She is very very young, and has a lot of years ahead of her.
02-28-2017, 06:39 PM   #24
Farmwife
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Thanks Maya
No mom or doc wants kids on this stuff as you know.

Grace had been to a pain clinic. It was amazing and we've worked her off of a few meds. She truly loved it and it got her back on her feet the quickest I've seen her do it.
Our goal is to her off all pain meds but it's a work in progress.
02-28-2017, 06:45 PM   #25
my little penguin
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But your adding new pain meds gabopentin or neurotin
Both are also brain altering in a very little kid
You should try Cleveland or the or the children's institute both are known across the country to get her off meds not adding more
03-16-2017, 10:47 AM   #26
Farmwife
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Hi everyone.

Just an update from the earlier conversation about pain meds.
After talking with 3 doctors we decided to try and wean her off of narco.
I was nervous, very nervous but I shouldn't have been.
She weaned in 7 days. Wow I was shocked.
We also learned that the nerve pain medication works far better at controlling her pains.
We still will have narco for sudden flares and her neve pain medication fluctuates as needed.
The moral of the story. .......
Always check with your doctors to make sure your all on the same page.
Also,
What may sound like a lot of meds to you or others may still be needed to give your child a good chance at a normal life. Trust your docs but question them when needed to.
03-16-2017, 10:49 AM   #27
Maya142
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Glad it worked!! Nerve pain medications are much better for her and they do actually work better for amplified pain.

Way to go Grace!!!
03-20-2017, 01:40 PM   #28
CarolinAlaska
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I'm glad she is finding things that work for her.
03-21-2017, 09:14 AM   #29
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Glad that worked for her Farmwife, I so get what your saying about not wanting to give pain meds but sometimes on balance we have to so our kids have some chance at a normal childhood
03-23-2017, 08:27 PM   #30
Farmwife
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Grace reacted to her Remicade today.
With in 15 minutes of the start
she said she was sick and started coughing.
Alarms started sounding and nurses started descending on her room.
Steroids were given and with in 25 minutes she was stable.
They called rheumatologist and they said give a go for second time but wait an hour.
All went well but I feel like I aged 10 years in that 25 minutes (does that make sense).

Sooooo question 1
Has anyone here have a one time only reaction? She's been on it for 2 years now.

And question number 2
For those who stared have reactions, how long until they pulled it?

Thanks for any feed back.
Hugs
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