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Crohn's Disease Forum » Parents of Kids with IBD » New to Forum, newly diagnosed 13 year old - J's story


 
01-26-2013, 01:52 PM   #31
crohnsinct
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Can I just say that I am totally impressed with J but whoa mama totally and incredibly impressed with YOU! You have taken such control of the situation and done your research and intelligently processed all the information set before you. Give yourself a big giant pat on the back!

Now, just telling you what our doc says...EEN means nothing but the formula and water. He says for it to really work you have to go exclusive. He agrees there are some docs seeing results with 90/10 or 80/20 schedules but he clings to the old school so don't be surprised if your doc goes old school as well. We did exclusive for 6 weeks. O had all the different flavors and never got bored. After the six weeks it was a bit of a slow introduction of food. She visably got better and labs improved and we saw some weight gain. However, the true big gain and energy came after she was healed (the committee still wonders if doc had her on enough calories of formula). So be patient. Forward progress is good...don't get discouraged if weight gain is slow.

Good luck and keep us posted. Isn't having email access to docs the bomb?!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
01-26-2013, 01:55 PM   #32
muppet
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Yeah no kidding. I'd have mistaken you for a very experienced IBD/Crohn's parent and not a newcomer. You've come up to speed insanely quickly.

I think Dr. B is sick of my emails, but he still responds.. ;-)
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01-26-2013, 02:00 PM   #33
CarolinAlaska
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Can I just say that I am totally impressed with J but whoa mama totally and incredibly impressed with YOU! You have taken such control of the situation and done your research and intelligently processed all the information set before you. Give yourself a big giant pat on the back!

Now, just telling you what our doc says...EEN means nothing but the formula and water. He says for it to really work you have to go exclusive. He agrees there are some docs seeing results with 90/10 or 80/20 schedules but he clings to the old school so don't be surprised if your doc goes old school as well. We did exclusive for 6 weeks. O had all the different flavors and never got bored. After the six weeks it was a bit of a slow introduction of food. She visably got better and labs improved and we saw some weight gain. However, the true big gain and energy came after she was healed (the committee still wonders if doc had her on enough calories of formula). So be patient. Forward progress is good...don't get discouraged if weight gain is slow.

Good luck and keep us posted. Isn't having email access to docs the bomb?!
Thanks. I agree with all of the above.

It's funny. I found her email on the internet. She doesn't email me back, but the one other time I emailed her, she called back a few evenings later. This way, I'm hoping, she can see my questions ahead of time, and I'm not caught off guard and unprepared. Hopefully I'll have access to my email when she calls so I can be sure we cover all the Qs!
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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.
01-26-2013, 02:02 PM   #34
CarolinAlaska
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Yeah no kidding. I'd have mistaken you for a very experienced IBD/Crohn's parent and not a newcomer. You've come up to speed insanely quickly.

I think Dr. B is sick of my emails, but he still responds.. ;-)
I've done little except think about this since her diagnosis was nailed down... I also have the benefit of having access to medical info myself as I am a family practitioner (PA). This board has been very helpful too.
01-26-2013, 02:19 PM   #35
CarolinAlaska
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I'll admit that until I found this board and read the experience of other parents I was in denial that she has this chronic disease. Now I see the experience she is having is similar to others and realize that yes, it can present like her and all the tests can be normal, etc.

Sometimes knowing a little (as a PA) can be detrimental in that I read all the horrible things that can happen... Maybe this is the reason the Lord wanted me to be a PA, so I could help my dd, so we would have good insurance during this time in her life, etc... I am very cerebral and have to understand it all and figure out the whys and hows and so forth. As a mom I'm finding that I am waking with a burning stomach ever since the diagnosis - I know it is worry from all the processing my subconscious mind does during the night... The down side of being a medical practitioner is that I think sometimes my daughter's doctor thinks I know more than I do. Sometimes I think she is leaving the figuring out what to do up to me. I appreciate her not pushing, but sometimes I just want her to say, "Carol, I really think it would be best if we do this... and here's why." Honestly I have gotten much more understanding about this Crohn's disease from this board, my own research and other websites... I don't blame her, it's just the way it is, and she's a very busy doc being one of the only Peds GIs in the state...
01-26-2013, 02:24 PM   #36
crohnsinct
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Hmmm God does work in mysterious ways. And this experience will make you a better practitioner also!

If you want a doc to tell you their opinion and dictate things come use my doc...Muppet will tell you...he never holds back on his opinion. Hard call. We want them to tell us their opinion but listen to us also. I think it is a rare doc who could walk that line gracefully.

I wouldn't hesitate asking the doc either, "what would you do if she were your child" They are usually pretty clear on that one.
01-26-2013, 02:31 PM   #37
Jmrogers4
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This way, I'm hoping, she can see my questions ahead of time, and I'm not caught off guard and unprepared. Hopefully I'll have access to my email when she calls so I can be sure we cover all the Qs!
I wonder if this is why Jack's GI always calls me after hours, he knows it will not be a 2 minute conversation
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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
01-26-2013, 06:39 PM   #38
CarolinAlaska
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That is what I've wondered too
01-26-2013, 06:46 PM   #39
CarolinAlaska
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Keep Jaedyn in your prayers. She looks so thin. She got all dressed to go to a special tea party at a church with her sisters and friends then I had her drink an Ensure. She started feeling sick and had to go lay down... She decided to go anyway. I cried in the car after I dropped them off. I keep hoping that the diagnosis is wrong and that she'll just get better. Then I stop and pay attention and it hits me hard. This monster I'm fighting is not going to go away without a fight and supernatural help...
01-26-2013, 07:07 PM   #40
my little penguin
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Hugs. ..... It will get better the darkest days are before the dawn.
I know last January - 4 months after dx - I was still in tears. DS was still sick and thin and I had a hard time thinking it would get better.
It was very hard . But after months of trying different scary drugs - lots of tests a second time . I can say by October of last year DS had gained 20lbs and was basically pain free .
He now looks healthy , is swimming competitvely again.
Life is good .
I can say boost was enough to get DS to gain weight in the beginning prior to dx but soon it didn't work any more probably from inflammation.
It wasn't until he was on pred and peptamen jr ( semi elemental peptide based formula ) that he was able to gain weight.

Please look at the pediatric research section it has many papers on EEN as well as management in children
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01-26-2013, 07:20 PM   #41
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My daughter Sarah always been a thin girl at 5ft 8 we had to work very hard to keep her weight above 55kg.

We had been treating for low iron, then anemia for two years. Then 7 months prior to dx the stomach ache which were every couple months got close together, the anemia worsed a ultrasound was miss read.

This misread meant further testing was done for a further 6-7 months, in this time her weight dropped to 44kg, hemoglobin to 90, she gave up swimming, she sleeped 16 hours a day and was in constant severe pain.

At this we had no choice but to go the pred route. Her pain gone 4 days are starting pred and she was back at school 6 days later.

I will also,wonder whether this delay in treatment caused the problems in are having now.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
01-26-2013, 07:30 PM   #42
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Hugs
We've all been where you are and some of us are still there.
I'll pray that things get going in the right direction soon.
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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
01-26-2013, 07:47 PM   #43
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Sending hugs and prayers! It is hard but once you get her on the right path hopefully you will see quick improvement.
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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.
01-26-2013, 08:09 PM   #44
CarolinAlaska
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She's back from the tea party and had a nice time. Had to sit down once not feeling well, but now she seems more of her perky self... We got some cute pictures earlier, maybe I'll post a couple later.

Thanks for your support...
01-26-2013, 09:51 PM   #45
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Glad she had a good time!

Sometimes when my son has something to do with friends but just isn't feeling great I'll send him anyway. He usually ends up having a great time and I think it keeps his mind off not feeling good.
01-26-2013, 10:10 PM   #46
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Glad she had fun, I love tea parties. It's hard to see them so thin, you go along knowing they are thin but not really processing how thin until something shoves it right in your face, at least that is where we are at. Soon we will have them both feeling well and gaining weight - power of positive thinking
01-27-2013, 04:37 AM   #47
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So fab to hear Jaedyn had a good time.

If there is one thing this disease does it's that gives you a whole new appreciation of two very innocuous words...normal and boring!

Dusty.
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01-27-2013, 07:15 AM   #48
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I'm glad she had a good time!! What the heck happens at a "tea" party anyway? Alaska is still in the US last time I checked. When we have "tea" parties, we pump our fists and say things like "don't tread on me"

Carol, a while back, Dusty started a thread about grieving on here and you could count the steps we all went through when our kids were dx'ed. It's a process, you'll never stop grieving for her but you will get better! I promise
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EJ dx w/ Crohn's 12/09
PSC 3/10

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01-27-2013, 08:59 AM   #49
crohnsinct
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You don't need super natural intervention...you have YOU, you have J, the missing part is the right treatment and you are on your way to finding that. It is so hard to have the effects of the disease stare you down like that and watch your child suffer but it won't be long till you are posting your suucess story with gobs of weight gain and all the amazing activities she is doing.

For now rejoice in the fact that your 13 year old is still even remotely interested in tea parties! Glad she had a good time!
01-27-2013, 11:31 AM   #50
Twiggy930
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Carol

So sorry to hear of your daughter's diagnosis but glad you have found the forum.

Just wanted to let you know that my son did EEN via night feeds using a NG tube for 6 weeks, he was 10 years old at the time. I was extremely worried about how horrible it would be for him to insert the NG tube and was completely amazed when he learned how to do it in under an hour and within a few days could insert it himself in about 12 seconds! The tube size he used was 6FR and it was not weighted. I think the size of the tube has a large bearing on how comfortable it is.

Good luck with whatever path you choose and keep us posted on how she is doing.
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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.
01-27-2013, 02:16 PM   #51
CarolinAlaska
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So fab to hear Jaedyn had a good time.

If there is one thing this disease does it's that gives you a whole new appreciation of two very innocuous words...normal and boring!

Dusty.
So true!
01-27-2013, 02:25 PM   #52
CarolinAlaska
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I'm glad she had a good time!! What the heck happens at a "tea" party anyway? Alaska is still in the US last time I checked. When we have "tea" parties, we pump our fists and say things like "don't tread on me"

Carol, a while back, Dusty started a thread about grieving on here and you could count the steps we all went through when our kids were dx'ed. It's a process, you'll never stop grieving for her but you will get better! I promise
Thanks.

This kind of tea party is an affair for dressing up in formal and semi-formal wear, drink hot beverages (this time they had hot apple cider) from fancy tea pots and pretty cups, and eat dainty dishes of fancy treats (Jaedyn was able to eat a white chocolate snowflake with icing and colored sugar, but they also had powdered donut holes but she is gluten free and wasn't able to eat them). They got a charm-bracelet and charms from this particular club that invited them and did a craft where they made pretty snowflake decorations.

In the past I took the girls to a tea party when they were little where they got to wear beautiful dresses, get their hair done and makeup put on, and got their pictures taken. They also drank the tea from pretty sets and had special dainties to eat. I think these tea parties are nice, and even my teenage girls liked to take part in it.
01-27-2013, 02:39 PM   #53
CarolinAlaska
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You don't need super natural intervention...you have YOU, you have J, the missing part is the right treatment and you are on your way to finding that. It is so hard to have the effects of the disease stare you down like that and watch your child suffer but it won't be long till you are posting your suucess story with gobs of weight gain and all the amazing activities she is doing.

For now rejoice in the fact that your 13 year old is still even remotely interested in tea parties! Glad she had a good time!
Kim, I would never presume to not need God in this battle. He is my strongest anchor, my Healer, my hope, my Warrior, my shelter... He has brought healing in our family from seizures (my oldest daughter), from scoliosis (my youngest daughter) and from depression (me in my early adulthood). Sometimes I forget Who is my Healer, and look at it from a human perspective, but when I put my faith where it belongs, I am a much stronger person and I can stand back and see what He will do. This doesn't mean I'm not human anymore, but it is a relationship that means everything to me...

As for tea parties, my girls aren't the typical teens. They stand out in the crowd and don't fit in the usual molds, but I wouldn't have it any other way.
01-27-2013, 02:45 PM   #54
CarolinAlaska
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Carol

So sorry to hear of your daughter's diagnosis but glad you have found the forum.

Just wanted to let you know that my son did EEN via night feeds using a NG tube for 6 weeks, he was 10 years old at the time. I was extremely worried about how horrible it would be for him to insert the NG tube and was completely amazed when he learned how to do it in under an hour and within a few days could insert it himself in about 12 seconds! The tube size he used was 6FR and it was not weighted. I think the size of the tube has a large bearing on how comfortable it is.

Good luck with whatever path you choose and keep us posted on how she is doing.
Twiggy, what was your son's experience with EEN? Was it helpful? Did it bring him to remission? Was it difficult? Thanks for your support
01-27-2013, 04:21 PM   #55
Patricia56
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Sometimes knowing a little (as a PA) can be detrimental in that I read all the horrible things that can happen... The down side of being a medical practitioner is that I think sometimes my daughter's doctor thinks I know more than I do. Sometimes I think she is leaving the figuring out what to do up to me. I appreciate her not pushing, but sometimes I just want her to say, "Carol, I really think it would be best if we do this... and here's why." Honestly I have gotten much more understanding about this Crohn's disease from this board, my own research and other websites... I don't blame her, it's just the way it is, and she's a very busy doc being one of the only Peds GIs in the state...
I really relate to what you are saying about the doctor's thinking you know more than you do and treating you differently than they would most other parents/patients, leaving out important info because they assume you know it already.

Can't count the number of times I've been asked if I'm a medical professional because I know what's in a CBC w/diff or can do the riff on the Comprehensive Metabolic Panel and can tell you all the different parts of the intestines in the right order. When I say No I get weird looks.

I tell them I am just a mom with lots of experience with kids w/medical conditions. This seems to be a category they can recognize and handle. Sometimes I add that I know a lot about what I know and not much about everything else.

Rarely I call myself an expert caregiver - usually when I'm having to have a confrontation with a disrespectful or uncooperative medical professional. Which I think is an accurate description. But using the word expert sets the docs off, since of course you can't be an expert if you don't have little letters behind your name. But when it comes to our son with Osteogenesis Imperfecta I am damn well a bigger expert than 99.9% of the world's doctors will ever be.

I have learned to flat out ask doctors" what do you recommend" when they seem to think I can mind-read or when they appear to believe that I am so set on a course of action I can't be swayed. Usually this is because I have asked lots of critical questions. Asking questions makes them defensive and they jump to conclusions about my decision.

Talking their lingo isn't what they're used to and I think they switch to "you're another doctor" mode and drop into medical shorthand and again make assumptions about my knowledge and ability to make decisions.

So I totally get what you mean about that. It's good that you recognize it. Do you think telling the docs - just treat me like any other shell-shocked parent of a newly diagnosed kid - would be helpful?

And, as one cerebral person to another, you might want to spend some time drawing, coloring or writing about this experience. I found those things helpful in coping with the grief that at first seemed to be non-existent but eventually became very intense. You might ask yourself - what is my face feeling?
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Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
01-27-2013, 04:41 PM   #56
Niks
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Hi!

You have had some fabulous advice on here! My daughter is 19 and as yet she has a coeliacs diagnosis, and is being investigated for IBD.

She has been on Pred since mid November and when on between 30-40 mg she seems really well, but as soon as she tapers down lower she becomes sick. This is hard to watch!

Your GI seems on the ball with all the tests he did so quickly!

Good luck
01-27-2013, 04:53 PM   #57
Twiggy930
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Carol,

My son did EEN when the initial round of prednisone that was prescribed at diagnosis was not seeming to bring him into remission. When I say that the pred was not bringing him into remission I should point out that his blood work was improving (CRP) but he was still having significant pain and his BMs were still not solid (although they had greatly reduced in number). So we decided to do EEN, which was a treatment they recommended we do at diagnosis but at that moment in time both my son and my husband and I felt like we weren't up for that challenge. My son started EEN while he was weening off prednisone.

While on EEN my son's blood work continued to show improvements and he finally started having solid BMs. However, he continued to have significant abdominal pain on a regular basis. We did the EEN for the full 6 weeks and then started to slowly reintroduce foods. EEN didn't solve his issues with abdominal pain but I think it greatly improved his ability to ween from the prednisone and it sure helped him nutritionally.

My son found dealing with the NG tube no problem at all. I really couldn't believe it. He did find not eating challenging. For the most part he was not hungry but just wanted to eat, especially at meal times. He was allowed to consume clear fluids (apple juice, Sprite, Gatorade, broth, etc.), jello, hard clear candies and a small amount of gummy bears. If he did get hungry during the day he was allowed to drink some of the formula, we used Modulen in the NG tube at night but he would usually have Boost during the day as it is tastier. We also used distraction and bribery to get him through the 6 weeks with no food. He was suddenly allowed to play video games downstairs while we all ate dinner and his reward for completing the EEN was a tank of piranhas (he had to do all the piranha care research which we also used as a distraction).

In the end, if/when we have to treat another flare I think he would likely choose EEN over prednisone. It is a mighty hard thing to have to watch your child do but I did find some relief in knowing exactly what nutrients he was getting. I used to lie in bed at night and listen to the pump churning across the hall and feel comforted, like something concrete was being done to fix all this. Weird I know.
01-28-2013, 03:08 PM   #58
crohnsinct
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Whoa! I didn't mean to imply you didn't need God! I am a believer as well. I was reading super natural in the spacey wizardry sense of the word. God is very natural and real to me. Just a different way of looking at it I guess.

Yeah, he made an imoperable brain tumor that gave my daughter 18 months to live disappear on it's own. Even hte neurologist admits there are miracles among us!
01-28-2013, 04:10 PM   #59
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CarolinAlaska-

I too am very new to this group, my daughter was diagnosed last week, but my daughter like yours showed very few signs of Crohn's. She actually is very tall, but painfully thin. Since August, she lost 20 lbs. She's now 5'8" and 104 lbs. Her only signs of disease were weight loss, hemeroids, and constipation. I guess looking back, she did nap a lot, but she's also very active (pitcher for her fastpitch team, rides horses) so didn't think twice about her fatigue, I just thougth it was a typical lazy teenager. I'm very lucky that her pediatrician kept at the tests and referrals until we figured out what was causing her weight loss. I am trying the prednisone route only because she was losing about 1-2 lbs every few weeks and I couldn't watch it anymore. She's now eating like a horse, but I'm watching for other side effects. Our plan is to start aza. this week if the enzyme test comes back right and go from there. I mentioned the EEN route to my daughter and she wanted to try other things first. I know every person has a difference preference and there isn't one way to treat things so I hope whatever method you end up choosing gives your daughter the relief and recovery she needs.

Prayers-

Erinsmom
01-28-2013, 04:16 PM   #60
muppet
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I thought this study was interesting. To a large degree because it seems counterintuitive. Patients who knew they were being prayed for got sicker:

http://www.m.webmd.com/heart-disease...y-stirs-debate
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