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Crohn's Disease Forum » Parents of Kids with IBD » Parents of Pre-Teens and Teens with IBD


 
04-18-2014, 07:20 AM   #61
Daltonsmom
 
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Can anyone help me out with lab work results? D was in the hospital for labs and remicade on Monday 4-14-14. The GI called yesterday, said most counts look great, but anemia is still present.

What tests do they use to determine anemia? I have print outs from his last three lab results, and I can see drops in many levels ( WBC, RBC, Hemoglobin, Hematocrit, MCV, MCH etc.) Which drop in level should I be most worried about, they are all dropping-----not shockingly so, but dropping at each of his last three lab draws---January, March, and April.


Can someone please shed some light on the subject? He takes Vitamin D supplements and a multivitamin, and now we are discussing adding iron to the mix.

I would love some advice on what to look for, questions to ask

Thanks!
04-18-2014, 09:11 AM   #62
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Thank you so much dusty I think some times parents know more than the specialist do! I think you are right about all the deficiency stuff. My Sean has always been skinny, pale, tired, cold, no motivation to do anything but sit in front of a screen. I will be calling my GI nurse after the weekend to get everything checked
04-18-2014, 06:45 PM   #63
DustyKat
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Good luck and let us know how you get!

If you do get bloods done be sure and get copies of the results. If you feel so inclined you can post them on the forum and we can all put our two bobs worth in.

Dusty. xxx
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Mum of 2 kids with Crohn's.
04-18-2014, 08:28 PM   #64
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Hi! I am in! My son age 18 was diagnosed recently and the GI started him with a Top down approach and is currently on remicade . His disease is in the upper part of the small intestine. Glad to have this support group
04-20-2014, 06:54 PM   #65
jjohns23
 
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Hello to all, this group is going to be such a benefit to Makayla who will be 13 in July. We live in the Tampa area also. Just finished 1st Remicade treatment last Wednesday and praying for good results, but I guess it will take time to see if it works.

Jo
04-21-2014, 07:15 AM   #66
mugsymagoos
 
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Hi Jo! Where in the Tampa area are you? Which GI are you taking Makayla to?

Therese
04-21-2014, 08:02 AM   #67
lbligh
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This group is a great idea. My daughter is 13.

Our story: We were fortunate to get the definite Crohn's diagnosis only about a month after she got sick last fall -- she was totally healthy before that. Pediatrician kept saying it was probably a virus causing the fever and weight loss, but we insisted on blood work, which showed anemia and a lot of other abnormalities. Pediatrician said "I don't know, maybe you should see a rheumatologist?" My husband's brother is a doc and said he thought a pediatric GI would be a better choice. In our area it is very difficult to get an early appointment with either. I made appointments with both types of doc and asked to be on a waiting list for both, and the pediatric GI had an unexpected cancellation a week later.

Had the colonoscopy and endoscopy and biopsies and MRE, all said definitely Crohn's. Doctor gave her Pentasa and Prednisone, neither helped much, and the doctor started pushing 6MP.

We did a ton of research. My husband is a health care researcher by profession, and I know a lot of people, so between us we came across a lot of alternatives. Early on, someone told me about the Specific Carbohydrate Diet, and we got the book, but it sounded so goofy, we didn't take it seriously.

We tried a lot of dietary supplements such as turmeric, tart cherry juice, probiotics, cat's claw, wormwood, and some others. Also supplemented with B vitamins, zinc, Vitamin D3, and lactoferrin, because of her anemia and malabsorption.

None of these things seemed to help. The only thing that did was EEN which came about because she wasn't eating and we essentially bullied her into drinking Ensure shakes all day for a few days, which was followed by the all-liquid cleanout for the colonoscopy. Amazingly she felt great for about a week after that! When we told our doctor about that, she said "Oh yes, EEN can work well, but it's too difficult to stay on it." We were furious that she had known about it all along and had never bothered to mention it as a possibility! On the other hand, she was right in a way - when we brought it up as something we should try again, our daughter flatly refused.

So we're four months into this nightmare, and we went so far as to fill the 6MP prescription, but couldn't quite bring ourselves to start administering a chemotherapy drug to our daughter without trying one last thing. With no great expectation, but considerable desperation, we started the whole family on the Specific Carbohydrate Diet.

Our daughter had had a fever every day for four months, except for the week after the EEN. Sometimes as high as 103. She had stomach aches and fatigue every day. Weight loss. Facial flushing. No appetite even though she was on 40 mg of Prednisone.

Four days after starting the diet -- no fever. No stomach ache. Both completely gone. Tons of energy and appetite. It was like a miracle. After two weeks, all the inflammatory markers in her bloodwork were back to normal. In fact, low normal. After another month, virtually everything in her bloodwork was completely normal.

She's now been on SCD for two months. We tapered her off the Prednisone and other supplements, and now all she's taking is the Pentasa and zinc and Vitamin D3. (Not sure if the Pentasa is doing anything at all, but we will reassess when it comes time to renew the prescription.)

We just came back from a week in England over Spring Break, and she was perfectly fine the whole time. Eating was a bit difficult, but thanks to good restaurant advice from some Paleo blogs, we worked it out OK.

SCD doesn't work this well for everybody, but it does seem to help a lot of people. We have become SCD evangelists, spreading the word that this is something that is worth a try. At the very least, doctors should give the information to their newly-diagnosed patients, even while they are waiting for the first appointment or the endoscopy or for other meds to start working.

We know there will be some bumps in the road, that's the nature of this disease. Still, for now she's doing well, and we are continuing to educate ourselves.
04-21-2014, 08:38 AM   #68
SupportiveMom
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Your doc is right, EEN is hard to stay on, and in my experience very hard with a teenager. We tried EEN orally and my D didn't stick with it. When the GI discussed it again this time she knew orally she wouldn't commit to it and actually opted for the NG tube to ensure you sticks to it. We are just about at the end of week 1 and so far so good. It has been a learning process with measuring bile in her stomach and how fast she digests. We have had 2 night passes and she was around food & people and wasn't tempted. She knows the risk in doing so and doesn't want a set back.

I do hope when she is reintroduced to food to try the SCD diet or low residue as that was one we couldn't really switch to with success mid stream of the disease. I have a while to think about sitting down at the family dinner table again so I have lots of time to read & plan. Be sure to post issues & successes in the diet section so I know what works & doesn't!
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Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
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04-21-2014, 09:02 AM   #69
Chester31
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Ibligh - it's fantastic that your daughter is doing so well on the SCD diet. I also bought the book but didn't even mention it to my son as I thought he'd hate it and I couldn't see how to make it work for us as a family. He's had great success on EEN too but symptoms come back when he starts eating again. He's currently on EEN once more although his GI wants him on azathioprine once we've sorted out his immune issues. I am really struggling with the idea of Aza, particularly given his age and the fact that he's male, and would love to find an alternative. Please keep us updated - we just might have to give it a go!
04-21-2014, 09:37 AM   #70
jjohns23
 
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Hi Therese, we are in East Tampa and Makayla is seeing Dr. Arasu at St. Joseph's Medical Arts Bldg.

GO GATORS!!

Jo
04-21-2014, 09:42 AM   #71
mugsymagoos
 
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We have been to every pediatric GI in the Tampa area since Kayla was diagnosed at age 12. Didn't like any of them! We started taking her to the Mayo clinic in Jacksonville 2 years ago, and we love it there!

Yes, Go Gators! Kayla finishes up her freshman year next week!!!!!

Therese
04-21-2014, 02:51 PM   #72
lbligh
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Changing to SCD was actually easy for us because for weeks we'd been eliminating every food that seemed to disagree with our daughter. Plus we had been doing what the doctor directed and eating "low residue." By the end it seemed as if she could hardly eat anything.

So when we started SCD it was such a luxury. Salads! Shrimp! Meat! Fruit!

We go to a whole lot of effort to make the food delicious. For the cost of one endoscopy, you can buy a whole lot of out-of-season raspberries! There is a new variety of bacon from Gwaltney that has no sugar or starch, and that's perked up our breakfasts a lot. I make a half batch of SCD-legal macaroons every couple of days.

It has helped a lot that the Paleo diet is so similar to SCD and is currently popular. There are tons of great recipes online. My daughter likes to look for recipes that sound good, and it gives her much more feeling of control over her diet.

Truth to tell, the rest of us sometimes cheat when she isn't around. But we only eat SCD-legal food otherwise. It's only fair, and it's actually a very healthy diet.
04-21-2014, 03:05 PM   #73
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Hi Ibligh,
Such great news re your daughter and her success with the diet. Has the diet actually reduced her inflammation, besides symptom control? Its great that you are all supporting her in the change of diet.
What area is her crohns located ?
I have always been curious about the diet, but in my sons's case he barely had symptoms, so I didn't want to add another stress. I will do some research. Thanks for sharing!
04-22-2014, 08:16 AM   #74
DanceMom
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My youngest saw Dr. Arasu for laryngopharyngeal reflux a few years back. We felt he was adequate but we were very unhappy with the hospital he worked out of. Ironically I worked for the same hospital a few years prior to taking her there.
__________________
A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
04-22-2014, 08:40 AM   #75
mugsymagoos
 
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Dancemom,

Where do you guys live? I am a dance mom too! LOL! Two of my girls dance competitively! We had a very bad experience with Dr. Cuenca who is in the same practice as Arasu. I hope I never see that woman again!

Therese
04-22-2014, 08:53 AM   #76
DanceMom
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I bet we've passed each other at competitions! What studio are you at?

We live in Lakeland but use Nemours in Orlando. She saw Dr. Winesett at St. Joseph's, and though we liked her she just couldn't give us answers.
04-22-2014, 08:57 AM   #77
mugsymagoos
 
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My girls dance at Dance Extreme Academy in Trinity! We are actually going to Headliners Comp this weekend in Orlando! What studio are you at, and what comps have you been to this season???

We saw a few docs in Winesett's practice also. Like I said, we have seen every ped GI doc in the Tampa area! lol
04-22-2014, 09:19 AM   #78
DanceMom
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A dances for Tammy's Dance Company. This season we've done Showbiz, Hall of Fame, StarSystems, State Dance Championships, and StarPower. We will also be doing ShowStoppers and Thunderstruck. It has been a busy season! lol

Glad to meet a fellow Dance Mom on here!!
04-22-2014, 02:06 PM   #79
lbligh
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Pink, my daughter has (or had) patches throughout her upper and lower GI tract, but especially at the terminal ileum. She never had diarrhea or vomiting, though, just fever and weight loss and stomach aches. We were really surprised by the Crohn's diagnosis.

Anyway, all the inflammatory markers are now normal. In fact, they are low normal.

Now of course we are wondering how long she needs to stay on the diet. We are guessing a couple of years.
04-23-2014, 06:51 AM   #80
SupportiveMom
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Ibligh its hard to know how long to stay on the diet. Personally I would always stick to it to avoid a flare. What has the GI said?

04-23-2014, 07:29 AM   #81
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Hello all...my son is a newbie...diagnosed last tuesday. Glad I found others in my area. I live in riverview..just moved from Tampa. .love reading all post..I am learning a lot... I recently bought everything gluten free dairy free soy Because I heard this diet is good..also looking into paleo diet. Anyone been on this diet? My sons Gi wants to try remicade and 6mp soon. Hes currently on 10 Pentasas, 4 prednisones, 6 zincs, prilosec, vit d, k and pediasure peptide..I feel like he's getting worse..any advice..is this normal? Is there a group that meets in tampa..my son is a very mature 10 almost 11 yr old thats obsessed with mind craft :/ he feels alone. I was looking to take him to camp oasis in georgia. Anyone been there? Also hes seeing a doctor in st pete hospital named kargoo..anyone know of her...or anyone can recommend an swesome Gi around? Sorry so many questions..I have tons more..also heard of something happening at MOSI I believe may 17th or 19th I was thinking of going anyone else going the program about Crohn's but you have to RSVP for and then free entrance to mosey afterwards
04-23-2014, 07:50 AM   #82
Clash
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Welcome nani0126, so sorry to hear about your son's recent dx.

There are some parents here who have tried SCD, paleo, gluten free etc. I haven't had experience with diet helping with my son's CD other than low residue when flaring. I'm going to tag some others whose children are following a diet plan I think Jenn has a son following low FODMAP, jmrogers4 I think has tried gluten free and maybe SCD or paleo, my little penguin has a son that may have tried some of these diets and Dusty has a daughter that has been on raw vegan maybe? A lot of us have done elimination diets to try and figure out what possibly could be triggering issues.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
04-23-2014, 10:34 AM   #83
Jmrogers4
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Nani,
I answered you about diets on the other post so wont repeat all that. I will say that Camp Oasis was a minor miracle for my son. He was also diagnosed at 10 and went to Camp Oasis (in Washington State) for the first time that summer. Before camp he was pretty depressed about the disease, didn't want to talk about it, didn't want anybody to know. He met some incredible kids at camp that are dealing with the same issues and he wasn't different there. They have maintained that friendship throughout the year and all look forward to meeting at camp again every summer. He came home from camp and had a completely different attitude. He may have crohn's but crohn's doesn't have him. He stood up in front of his entire 6th grade class at the beginning of the year and told them all about it. They were all really supportive. I was one proud mama!
In fact one camp friend who lives in another state has become one of his best friends and are each others go to person for support on the disease, they talk about medicines they are on, how they are feeling and just regular teen stuff. It is nice to have a peer to talk to that "gets it" kwim? My son's are minecraft freaks as well and he regularly plays minecraft together with his camp friend on both the xbox and computer. When he is on the computer he usually has my laptop next to him skyping his friend so they can talk while playing.
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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
04-23-2014, 10:50 AM   #84
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Thats hilarious jacqui...my son is always on minecraft with his friends and labtop at the same time ....thanks for the advice about Campo oasis... I think it truly will benefit him. I am excited for us to go please keep in touch, i very much appreciate yourS and everyones advice especially since we are new at this...
04-23-2014, 11:33 AM   #85
my little penguin
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Pentasa was. Useless for my kid .
We were told it either works or it doesn't but to only give it 30 days .
Diet helps crohn's but since most kids tend to have a more severe course more meds are needed.
DS tried free of this that and the other you name we tried it.
Nothing really helped
He also tried all the different meds.
EEN - peptamen jr helped him grow and gain weight but only remicade /humira got him back to being a kid again.
All the recent studies show remicade plus immunosupprent early on are the best way to reduce the risk of surgery later and stay in remission longer.
My son was 7 at dx and is now 10.

Sorry you joined the club
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04-23-2014, 03:06 PM   #86
Jenn
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Welcome. We haven't tried any special diet for my son, now 12, I think maybe you meant the admin Jennifer . My son is doing well on Humira. The top down approach going for Remicade first usually gets quicker and longer remission. My son is hooked on Minecraft too. He plays it while listening to youtube videos of people playing it also. He has gone to Camp Oasis in CA once, absolutely loved it, and will go again this summer. Such an amazing place!
__________________
Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (20mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
04-23-2014, 03:10 PM   #87
Jmrogers4
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I think it is Twiggy930 whose son is doing FODMAP. I believe she has a thread about their journey
04-23-2014, 03:28 PM   #88
Clash
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Ah yes Twiggy930, sorry I remembered the thread but mixed the users names up!
04-23-2014, 07:26 PM   #89
lbligh
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Nani, the Paleo diet is quite similar to the Specific Carbohydrate Diet which has been such a success for my daughter. The Paleo diet is popular now, and that has been great because people have posted great Paleo recipes online that I can either use or adapt slightly for SCD.

Because SCD is specificially designed for Crohn's and Ulcerative Colitis, you might want to focus on that diet, but I've heard of people having a great success with Paleo instead.

Some differences: SCD can have cheese and homemade "SCD yogurt" but Paleo is no dairy

Paleo can have maple syrup as well as honey; SCD is honey only

Paleo can have chocolate and SCD cannot (I still haven't figured out why)

Paleo can have potatoes and sweet potatoes, and SCD cannot.
04-24-2014, 02:12 PM   #90
Twiggy930
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The FODMAP diet has greatly reduced my son's chronic abdominal pain. When he went on it all his inflammatory markers were normal but he was still having lots of pain.
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
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