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Crohn's Disease Forum » Parents of Kids with IBD » Young Adult With Special Needs & Crohn's


04-25-2014, 06:23 PM   #1
flamingoland
 
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Young Adult With Special Needs & Crohn's

Hi, very new to all this, my daughter turned 20 in the midst of it all. She started vomiting on 1/2, on and off for 3 weeks, pedi (we were about to exit to adult practice, but because she's special needs, figured we'd call them, hadn't been to the new place yet) said it was viral, after the 3rd week, I insisted on blood work, he looked at e coli, etc, and wanted a stool culture even though there was no reason presenting itself, what came out was pure blood. They called to admit her on 2/2 because her potassium was too low (no word on the bloody mess we sent in too!) and there she stayed for a month.

Her GI doc said it was the worst case she'd ever seen and that she'd probably had it awhile and not noticed/said anything, she went away for a few days and had told us (after a transfusion and still vomiting (now with NG tube to keep everyone out of her stomach, though no solid food since 1/13) and diarrhea every 3 hours with all blood) they were going right to Remicade. While she was gone, the other guy GI person decided to leave her on the 60 mg dose of prednesone because he felt it was working (I certainly didn't!) 2 more days of this and she bleed so badly she needed a 2nd transfusion....she's now had 4 doses of Remicade.

She was initially diagnosed with UC because the disease was nowhere except her large intestines, but her GI doc saw a 1/2" gap in that mess and ran one more test (MRE) and then rediagnosed her with Crohn's.....she got readmitted after being home for 2 weeks because of fistulas and an abscess that showed up on the MRE, week of antibiotic IV, then the surgeons came around, they ended up just 'looking around' and putting a drain in, as he said, he didn't want to make her incontinent the rest of her life (at this point).

Now she's on the 6MP in addition to the Remicade, she's been okay (no outward symptoms) the biggest issues are that she has an incredibly high pain threshold, and I mean if she's in pain and mentioning it, you need to get the morphine. She smiled through the entire time in the hospital, the nurses would fight over who would take care of her, she doesn't have a mean bone in her body, and this is so unfair to her (and to all of your children as well).

She functions as a 10 year or so old child, this is very difficult for her to understand (she hated being naked in front of everyone while in the PICU, needing help in the bathroom, and now having everyone look up her butt with the severe peri anal disease).

They did give her a nice book in the hospital that is written at her level (looks like a coloring book) and that was after I jumped up and down on everyone to make them understand that though she's 20, she's not.

Her doc is wonderful, keeps us very much in the loop, and is 'all over it'. Todl her she was her 2nd mother and first phone call, programmed her cellphone number into her phone.

I'm trying to find some kind of support system for her, either another younger child, or one her age that is 'kind'. She really doesn't understand this and doesn't talk about it. We have to ask every day if anything hurts (and once again, if she said yes to anything, it would be more than any one else could probably stand) and how she feels. Glad there are you over here and hope someone has some suggestions for her. We've totally kept her involved in her care and decisions, we made sure we got all her records/tests, etc. The GI department gave us a nice binder to keep track of everything and to keep everything in.


She already has a milk and soy intolerance and we've cracked down even more on that. She and I read the labels together, she asks questions when she goes out to eat (we have a great staff person for her) and knows that you can't ask the restaurant where they got their bread, so it's better to just not have it (so much soy in everything!!!).

Insurance has not really been an issue, she has private though me/my work, and Medicaid because she is special needs.

She did graduate last year (thank goodness, she'd never have if it was this year) so though she's still in a school based program until she's 21, it's not as serious, so not an issue. She works 2 days, 3 hours each, at Bed Bath Beyond and they have been amazing (been there 3.5 years now, never missed a day until now).

So any advice on any of this, please point me, I'm trying to stay off 'that internet', I'm also in the midst of stage 3 breast cancer treatment (finished radiation in December, now on oral chemo) so when it rains, it pours! I can see this is VERY individual, I've asked if she can ever get off Remicade and the answer has been no, yet I've met people left and right (seems everyone has it once you hear about it) who are just controlling it with diet, or on much lesser meds, or only steroids for the flare ups (we just got her off the steroids after 3 months).

So she's on Remicade, 4th dose is in 2 weeks, 6 MP was 50, now 75 because her bloodwork was okay.....flagyl and cipro, 2x per day each, but she is going to cut one of them back to 1x per day for a few weeks, then reverse that...iron every day, vitamin d 1x per week, miralax every day, she still has the drain in, the surgeon is in no hurry to remove it.

She also has a medical team at Boston Children's and though we didn't go there, we kept in very close touch with them and will be seeing them over the next couple of months (not for GI though).

She has also been involved in genome sequencing at the NIH (looking for the gene for her syndrome) and we've spoken to them about exploring clinical trials if we have to.

Thank you, this is actually a very short version of the last 4 months, but it highlights the more important aspects.....I run the support group for her syndrome (which generally doesn't include crohn's as an issue!) and appreciate any advice you have.
04-25-2014, 06:41 PM   #2
Orchid
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Crohn's, like cancer, is very individual but in the level of severity she has biologics are almost a given. If and when she stops having symptoms she still needs to take it for the rest of her life so she doesn't get sick again. I'm sorry that prednisone isn't helping but 60mg is the highest recommended dose and anything higher could cause her to rapidly develop diabetes or serious bone problems. The doctors are likely also worried about the serious mental side effects, which are often the worst in the young and elderly. While diet can help for some, it's not a well researched form of treatment and will not help with the fistulas from fistulaizing CD. The seton they put in her fistula may honestly never come out, many fistulas don't heal and it prevents them from closing up and festering.
04-25-2014, 06:56 PM   #3
Farmwife
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Hi and welcome.
I'm on here for my five year old Grace. I know how hard it is watch children suffer.
It seems like you dear people have really been through the wringer.
I'm so glad for her smile, my Grace is much the same and it makes all the difference in the world.
I don't now what syndrome your girl has but my 8 yr old niece has a similar mental mind set with a very high pain thresh hold, matter of fact she might not feel pain at all. Her older brother (my nephew) is starting to show some similarities also.
But I tell ya, I love that girl and ALL who meet her want to keep her forever.

Her GI is a keeper for sure. I mean most NEVER find one like that.

Please feel free to ask any and all questions.
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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
04-25-2014, 07:01 PM   #4
crohnsinct
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Goodness you have certainly been through the wringer! With all you have been through you and your daughter are an inspiration!

My daughter is now 14 but was dx'd at 12. Sounds a bit the same, no big time signs but the disease was brewing for 2 years until her first major flare. She lost a lot of blood but didn't tell us. We also ended up in the PICU on TPN, receiving blood transfusions. My daughter has been on Remicade for 2 years and we added Methotrexate a year ago. These drugs are only scary until you see them work at which point you fight hard to keep them and thank God they are available. It is true you typically will not stop Remicade unless it stops working or you develop antibodies. My daughter developed horrible itchy, disfiguring psoriasis (on her face no less) but her and her doc do not want to stop the Remicade until they are forced to.

Diet didn't cause nor will cure the disease but diet certainly helps. It helps during a flare so as not to aggravate things but I also am a firm believer in a healthy, varied, anti inflammatory diet. While my daughter was declared in remission quite a while ago, it wasn't until we turned over to a 90% plant based diet that she started gaining weight like crazy and her blood test results are perfect. There is a diets section in the parents forum, have a poke around there to see what might work for you. The drugs we give our kids are strong stuff and feeding their bodies the best way possible I feel helps them keep strong and fight off any infections (suppressed immune systems and all).

My dd has had a passion for special needs kids and adults since she was 9. At lunch she helped the gym teacher with adaptive phys ed. In middle school she ate at the special needs lunch table and got others to join her (I know! crazy that they have such a table in this day and age). She runs the Circle of Friends club at the high school. One of her best friends has Downs Syndrome. She volunteered over the summer at a camp for special needs kids and young adults and continues to volunteer at the center once a week. This is truly what she was put on this earth for. Some of her kids won't eat if she isn't there. One non verbal boy talks only to her. It amazes me. I tell you all this not to boast but to let you know if you want I will ask her if she would like to "friend" your daughter. Not sure which media your daughter uses but I am pretty sure O is on it. I am sure she would even take a call from her as well. We are in CT so pretty close at that. Just let me know if you would like me to ask her.
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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
04-25-2014, 07:04 PM   #5
Farmwife
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My dd has had a passion for special needs kids and adults since she was 9. At lunch she helped the gym teacher with adaptive phys ed. In middle school she ate at the special needs lunch table and got others to join her (I know! crazy that they have such a table in this day and age). She runs the Circle of Friends club at the high school. One of her best friends has Downs Syndrome. She volunteered over the summer at a camp for special needs kids and young adults and continues to volunteer at the center once a week. This is truly what she was put on this earth for. Some of her kids won't eat if she isn't there. One non verbal boy talks only to her. It amazes me. I tell you all this not to boast but to let you know if you want I will ask her if she would like to "friend" your daughter. Not sure which media your daughter uses but I am pretty sure O is on it. I am sure she would even take a call from her as well. We are in CT so pretty close at that. Just let me know if you would like me to ask her.
You should boast CIC. That's amazing.......she's adopted, right?
04-25-2014, 07:08 PM   #6
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04-25-2014, 07:54 PM   #7
DustyKat
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Hi flamingoland and

I am so very sorry to hear about your daughterís diagnosis and yours too!

I can see this is VERY individual, I've asked if she can ever get off Remicade and the answer has been no, yet I've met people left and right (seems everyone has it once you hear about it) who are just controlling it with diet, or on much lesser meds, or only steroids for the flare ups (we just got her off the steroids after 3 months).
You have hit the nail on the head with the individuality of this disease! As Clash has said, diet doesnít cause the disease but itís effectiveness is highly variable with the most consistent success coming from EEN (Exclusive Enteral Nutrition) but this is not a long term treatment. I think if you can hit on an eating plan that results in improvement both clinically and objectively then stick with it!
With your daughter being diagnosed at this age, and no doubt with disease being present for some time, then her disease progression will likely take a more severe path than that of adult onset. She has evidence of that as the development of fistulas and abscesses are considered complications of disease and so the ranking is severe. Unfortunately it isnít hard to find people that say they just do this or that but more often than not it isnít that simple but that is not to say that with treatment that suits her that she doesn't move out of that severe phase and into remission. Severity of disease is based on clinical findings not the location or type.

As a general rule of thumb Remicade is not stopped whilst ever it is working without worrying side effects. It is very good at treating perianal disease so the right choice was made in that respect. Combined therapy with something like 6MP is recognised at enhancing outcomes and Flagyl is a good solid antibiotic that is specific to the gut and also has anti-inflammatory properties. You would hope that good clinical indicators, coupled with an obvious decrease or resolving of symptoms would mean that your lass does not have pain or it has at least reduced significantly.

It is wonderful to hear that you have a good medical team cause that is half the battle as Iím sure you well know! There are also loads of parentís here that have kids around the 10 age group so hopefully something will crop up there.

Good luck mum. I hope the current treatment brings all back into line and your lass is soon feeling much better, bless her.

Dusty. xxx
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04-26-2014, 06:47 AM   #8
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Thank you so much, and though her story was shortened considerably for this, I do want to tell you more about her wonderful doc. While she was away in Florida, she called a couple of times just to talk to her (and me) and once time she called and asked me what size she was (every time she called, I'd say aren't you on vacation???)....she brought her back a sweatshirt and had written a card with it saying she was a bravest girl she'd ever met. It's one thing for a doc to be 'nice', it's another for them to be 'good' as well, and we are incredibly fortunate that we have found both...she's also willing to 'keep her' until she's 24-25, plus that gives us continued access to the children's hospital.

Given that you 'get who you get' there (whoever happens to see you first is your doc, unless you put up a stink), very lucky it was her and not the other guy.

The only way we could seem to get Bec through this was to continually tell her how brave she was being. She only 'lost' it one night in the hospital, which was heartbreaking. I have a photo of one night when the IV pole (she also had a pick line, a foley for awhile, and the NG tube) had 4 pumps on it and 15 bags o' stuff, from TPN, to benedryl, adavan, prednesone, potassium, fluids, can't even name the rest of that.

The surgeon, though seemed very stand offish as first (and I 'get' that about surgeons) has warmed up a lot, he's new in town, he has little kids, I love that he's very conservative. He mainly scheduled the surgery to look around because Bec was so sick of everyone looking up her butt. He said if he put the loop around it to 'choke' it off, he might make it worse, so put the drain in instead. He also said if he really just cut it out, it would make her more prone to disease there because Crohn's also tends to 'attack' scar tissue, and it was so close to her rectum, he would have had to cut the sphincter muscle (he also put an elastic or something there to hold the drain in), and then there was no going back. He did suggest if the meds continue to not work well, or this flares up again, to consider a year with a colostomy bag, but we're also hearing once you go there, there may be no turning back. All this stuff in her butt is hot pink, btw. She's getting a lot better about it, but it's still very tough for her, she's very private.

As far as diet is concerned, we are very holistic here and have been for a long time. I actually KNOW my farmer and have a farm share, organic, for many years now. I"m also gluten free, though the family is not (it's just too expensive and the foods just are really bad, though I make a lot of them myself at this point). She's always had the dairy/soy thing since she was born, and the last 4-5 years I've paid a lot of attention to all the GMO stuff (I grilled my farmer on where he got his seeds!).

The breast cancer was out of no where, I have no risk factors or family history and it was smaller than 1/2 a grain of rice, yet was everywhere (and not at all on the mammogram from the year before). My boss actually told me that if I got cancer, there was no hope for the rest of the world because of the way I eat (and I know that's not all there is to do with it).

Bec is on Facebook, though we've been pretty insistent on the stranger thing (it's such a scary world out there) and she doesn't understand to the point of being able to communicate well (other than chat) with anyone, I would certainly allow her to friend your child. She has friends from her 'syndrome' (who she has met) which is very rare, but doesn't really talk about it, not sure she'd talk about it, but we can certainly try.

Thank you again.
04-26-2014, 06:36 PM   #9
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Are you a shift worker who gets lots of bright light after dark? I remember an interesting study on breast cancer risk factors: it turns out the biggest shared risk factor was women who worked under bright light during the night ie shift workers. Further studies along this logic went into trying to understand why, implanting mice with breast cancer material and using a variety of chemicals the body produces in low light conditions: turns out melatonin (a hormone involved in sleep regulation) exposure may slow breast cancer tissue growth by preventing them from establishing bloodvessel networks. (Source)
04-26-2014, 07:06 PM   #10
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Thanks but no, I teach computer science at the college, design/manage a lot of websites, and shoot video and still photos for a lot of the local bands. Just bad luck.
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