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Crohn's Disease Forum » Parents of Kids with IBD » Just realized it has been 7.5 years since diagnosis!


 
09-26-2017, 09:42 PM   #361
Maya142
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Fingers and toes crossed!! It is a LOT of activity in the beginning but they try really hard to make it fun for the kids. It's about 4 hours of exercise - PT/OT, aqua therapy and some sort of group activity a day. Plus they get a home exercise program which they are supposed to do at night.

M was completely exhausted after the first few days, but it was a "good" exhausted - it had been so long since she was able to function normally and do stuff!

These programs are really incredible. It was life-changing for M.
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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
09-27-2017, 01:10 PM   #362
Farmwife
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I'm glad she got in.
Do you know if they will let you be there?
Or do you plan on going in the evenings?
Grace was young so I had to be near (actually I would have been anyway).
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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 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
Azathioprine
09-27-2017, 02:20 PM   #363
Maya142
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If it's the Cleveland program, parents have to be there. The kiddo will be inpatient (parent cannot stay the night with them) but there are sessions for parents during the day and visiting time every evening.
10-10-2017, 10:50 PM   #364
kimmidwife
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Our appt today with the Cleveland clinic in Ohio at the chronic pain rehab programs did not go well. Firstly they told us they never got her records even when I called last week they said they got them. Then they said due to her low weight and the fact she is on a feeding tube during the day they donít think she can do the program.
I am so pissed off. We flew there and wasted all that time. Even if they didnít get her records we filled out an extensive questionnaire so they knew about her weight and the feeding tube before we ever went.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
10-10-2017, 11:53 PM   #365
pdx
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That is awful! So sorry...
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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
10-10-2017, 11:56 PM   #366
Maya142
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We had the same issues - M was too underweight for the program. It took a total of 1.5 years of tube feeding before we were able to get her weight up enough for her to do the program.

It took such a long time because she hadn't been diagnosed with Gastroparesis, so we wasted a lot of time trying an NG tube when she could not tolerate NG feeds.

But once we got her an NJ tube and then a GJ tube, she gained weight quite quickly. We started off with tube feeding during the day, but once she was a healthy weight and had gained enough, we switched to overnight feeds.

She was still on overnight feeds when we did the program.

Her BMI had to be 18.5 before they'd let her do the program - she had to be in the "normal weight" zone. Her BMI was 15 or lower during her worst time, when she was roughly 80 lbs, and there is NO way she could have done the program in that shape. It is a LOT of physical activity - 4 hours a day. The kids are constantly busy and their bodies have to be well enough to keep up.

I would focus on getting weight on her and then revisit the pain program. Any pain program will have similar rules about being underweight.

It was very frustrating for us because we KNEW she needed to do the program, but honestly, I'm glad they made us wait because then M was well enough to successfully complete the program and benefit from it.
11-23-2017, 10:12 PM   #367
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I havenít updated on Caitlyn in a bit. She is going to have an evaluation at the program for pain in NJ. There was a lot of back and forth between her doctors and them and they finally decided they think she can do the program.
I am glad they seemed to have reviewed everything really thoroughly.
She has also developed a new issue with her back.
She is scheduled for an MRI next week and had a CT scan that showed a kidney stone but the stone is small and nonobstructing so shouldnít be causing her ack pain.
The ortho is worried that it could be a disc or something.
Will update more when we have some more answers.
11-23-2017, 10:21 PM   #368
Maya142
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Where is the back pain, Kim? Does it get worse with sitting or rest and better with movement? Does she have stiffness, particularly in the morning or after sitting a long time?

I would see a rheumatologist if the ortho cannot figure it out.

Really glad the pain program in NJ will let her do it!! Has she gained any weight yet? It is a LOT of activity and exercise, so it's the best for her to have a "cushion" just in case she loses a few pounds.

We were told M's BMI had to be at least 18.5 or she could not do the program.

While she was doing the program, she began to feel better, eat more and rely less on her tube!
11-23-2017, 11:37 PM   #369
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She has gained two pounds since the tube was placed. The pain is in her lower back and radiates upward. It seems to get worse as the day goes on but she does wake up with it. It hurts worse when moving or standing up.
The ortho said if he doesnít find anything he will send us to rheum. But I am not sure how much more they can help as she is on Stelara which is already a TNF blocker.
Forgot to add she is also going to start back at aquatherapy and PT.
11-23-2017, 11:48 PM   #370
my little penguin
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Stelara is IL 12/IL 23
It is not anti tnf blocker
It is hit or miss for SpA
Ds takes Stelara plus mtx plus ivig for his Crohns and arthritis

So she may still have SpA
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11-24-2017, 07:54 AM   #371
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She could certainly have SpA. They can do lots of things - they can add MTX or if she is already on it, up the dose. Same with Stelara - they can up the dose or frequency. They can add Celebrex, though that is risky considering her Crohn's history.

PT and aquatherapy are GREAT and should certainly help with pain. But like with Crohn's, if there is inflammation it needs to be controlled or it will progress. You certainly do not want more spinal or joint involvement.

It doesn't sound like typical SpA but could be. I would get it checked out.

Do they know why she has only gained 2 lbs? My daughter gained a LOT more with the tube - over 25 lbs. Maybe she isn't getting enough calories? Or needs an elemental formula to absorb better?
12-17-2017, 09:19 PM   #372
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Hi Everyone,
I havenít updated in a few weeks.
Caitlyn went to be evaluated for the inpatient program at Childrenís specialized hospital in NJ.
They at first were hesitant because of her G tube but then they had a long conversation with her pain management doctor who spoke with their head doctor and they called us to have her come for the evaluation.
They accepted her. Now we are just waiting for them to finalize the insurance and have an opening for her.
The facility is beautiful and everyone seems super nice.
Caitlyn really liked it and is excited to do it.
Caitlynís back pain is doing better but she is having a lot of pain with eating again and with her G tube feeds.
Hopefully the program will help!!!!
12-17-2017, 10:51 PM   #373
Maya142
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Was her back pain ever checked out by a rheumatologist?

Really glad they will take her!! I hope they can get her in quickly.
12-17-2017, 11:01 PM   #374
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We didnít go back yet to the rheumy.
12-20-2017, 05:28 PM   #375
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Hi All!
We had a really productive appt with the GI doctor today. He agreed to change her to-a GJ tube. He agreed she should have a visit with an endocrinologist and he is going to try and help in way needed to get Caitlyn into the pain program.
12-20-2017, 10:42 PM   #376
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WAIT! I thought she was already accepted into the pain program. Did I fall asleep at the switch again?
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
12-21-2017, 12:57 AM   #377
Farmwife
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I think because they were waiting for a spot to open up for her in the pain rehab, CIC.
Hopefully the doc can get her in sooner, Kim.
Grace's stay made a world of difference.
12-21-2017, 10:12 AM   #378
kimmidwife
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I donít know if I posted about it there was a hiccup with her acceptance. One of the team members wanted a letter from her GI doctor and psychologist that she doesnít have an eating disorder because in the past they had two kids with G tubes who has underlying eating disorders.
The doctors and therapists that saw Caitlyn donít think she has one in any way but this one person on the team is inisiting it is ruled out.
Her GI is writing a letter and so is the psychologist she saw in the hospital.
Just another headache for me to deal with.
12-21-2017, 10:35 AM   #379
crohnsinct
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Oh, o.k. well that seems easy enough. Are the GI and psych good with follow up?
12-21-2017, 12:16 PM   #380
Farmwife
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Always something. Hugs
12-21-2017, 12:55 PM   #381
my little penguin
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So confused
Doesnít she already have a dx if gastroparesis which explains her low weight
Prior to the g tube
Didnít her weight go up woth formula and gastroparesis meds ...
And her medical records should reflect

If they donít then you need to chat with her GI asap
12-21-2017, 01:54 PM   #382
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Yes to all that MLP. It is just crazy. Hopefully the letters are being sent today.
12-21-2017, 05:30 PM   #383
Maya142
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We have found pain programs tend to be a little crazy about weight...it was VERY frustrating. It took M over a year to gain the weight necessary (but only 4 months or so after she got a tube) and keep it on long enough before they would take her.

It is a lot of exercise and activity and I understand why they are like that, but it was still very frustrating.

We also got the "Why doesn't she just EAT?" question despite a Gastroparesis dx and Crohn's dx .
12-22-2017, 04:01 PM   #384
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Both doctors sent the letters. Now have to wait for the team to meet again.
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Crohn's Disease Forum » Parents of Kids with IBD » Just realized it has been 7.5 years since diagnosis!
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