Crohn's Disease Forum » Parents of Kids with IBD » Just diagnosed with Crohn's


01-25-2013, 02:52 PM   #1
erinsmom
 
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Just diagnosed with Crohn's

My 14 year old daughter was just diagnosed yesterday with Crohn's disease and I'm now trying to gather us much information that I can. The disease runs throughout her entire GI tract and appeared on the scope as ulcers. I was shocked. All this started because she had a large weight loss (lost 20 lbs down to 104 and she's 5'8") and constipation. She's always had stomach pains, but they would only last minutes and her pediatrician didn't seem concerned. Now 6 years later, we get the diagnosis I wasn't prepared to hear. They started her on Predinose yesterday and are waiting for her enzymes to be tested before starting her on azathropine. What kind of things can I expect from Predinose. I plan on asking questions of the Dr next week when we have our follow-up appointment, are there any certain things I should ask? We only had time to talk after the procedure yesterday for a brief period before I had to run to recovery so she wouldn't wake up alone.
01-25-2013, 03:12 PM   #2
Jmrogers4
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When my son was diagnosed 3 years ago this is what they started him on as well. The things we noticed with prednisone:
1. He started to feel better immediately
2. Gained some weight back, which he lost when he weaned off pred.
3. Moon face (rounded face kinda like chipmunk cheeks) went away when he weaned off pred.
4. Mood swings, (She's a teenager she may have these already ) Jack seemed to get upset with everything at the drop of a hat, would stomp off crying at the smallest thing.
The aza takes a while to kick in and reach theraputic levels and you will likely have weekly/bi-weekly blood tests at first as they look for its effect on liver as well if it is doing its job. They started us off at 50mg/day and moved up to 125mg/day. Jack did not have anymore cramping, constipation, joint pain or general symptoms once we reached theraputic levels, the only thing we had and still have issue with is weight gain growth but as it is irrelevent to your questions won't go into that
Welcome to the forum by the way and sorry you had to find us. It is a great group of people who offer a lot of support and knowledge. Hope your daughter gets to feeling better quickly and things get under control
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Jacqui

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

Husband dx Crohn's 3/1993
currently none due to liver issues
01-25-2013, 03:18 PM   #3
Clash
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Welcome to the forum, erinsmom. Diagnosis is such a shock isn't it? It seems as if everything is being thrown at you at once and you can't wrap your head around the diagnosis let alone what all it encompasses.

As far as pred, it is the drug we all love to hate and hate to love. It is very effective at knocking down the inflammation for most patients. Most of the time patients are started off at 40mg and taper down from there. There are some icky side effects, for my son it was acne, moon face and this restless, moody, hyper feeling. Of them all, he hated the restless, moody, hyper feeling. The moon face went away as we started to taper and we were probably on pred all together about three months. He gained 20 pounds with the pred but it was water weight and went away quickly after we were tapered off. The acne took a little longer but C already had acne before pred so I think the pred just exacerbated his acne problem. We went to a dermotologist after the pred taper and had the acne under control in two months.

I'm sure other parents will be along shortly with their experiences and advice, I hope the pred works for you guys and she is feeling better quickly.
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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
01-25-2013, 03:25 PM   #4
Tesscorm
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I just wanted to welcome you to the forum but also say I'm sorry you had to find us due to your daughter's diagnosis.

It is overwhelming when receiving the diagnosis and then the quick commencement of treatment! While my son hasn't used pred, it is very successful at relieving inflammation so know that your daughter is on the road to recovery.

You'll find awesome members and parents here, always willing to share their knowledge and advice!

Good luck, I hope your daughter starts to feel relief soon!

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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
01-25-2013, 03:26 PM   #5
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Hi ya, Sorry to here you daughter is poorley.

Steriods are good in the short tearm only and shouldnt be used in the long term as they can make your bones week. Ask your doctor if your daughter needs to be prescribed adcal-d3 (calcium tablets) whilst she is on the steriod to protect her bones.

As when I was on steriods this was also given to me by the uks best doctor for Crohn's Dr sanderson (guys hospital london).

Azathiphrine would be the next step.

Further their is a drug called infliximab which is used for crohns patients who stop responding to the steriodsand azathioprine, this can give you a great quality of life. you go to the hospital and they intervenious give it to you.

Further, processed foods and refined suger are known to further inflame the crohns. So home cooked meals and eating anti-inflammatory foods will defo help her. go on te internet and type ani-inflammatory foods and loads comes up x

All the best x
01-25-2013, 03:38 PM   #6
723crossroads
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Hi Erin's Mom,
I just wanted to send my support even though I have never been on Pred. I have heard how well it works in the short term. I hope Erin responds quickly and you are all back to normal in no time. I would recommend getting her Blood checked for D3 level and Iron and B12. Also try some really good probiotics as they help in digestion. But talk to the gastro and find out what her bloodwork shows she is lacking first. Let us know how Erin is doing. Hugs!!!
01-25-2013, 04:26 PM   #7
jmckinley
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I am sorry about your daughter's diagnosis. At the same time, I am glad you have a name for it and can start a treatment plan to getting her well again. Prednisone is the same for us as others have mentioned. I will add HUNGRY!...and for you, patience. The moodiness can drive you batty.

I know someone will come along and add more on Enteral Nutrition. It helps to rest the gut so those ulcers can heal. My son drank Boost Kid's Essentials for several weeks after his last hospital stay...no food, just supplement drinks...about 8 a day.

My son was 12 ad dx and had ulcers throughout his digestive system also. I remember well waiting to speak to the GI after the scope. He was sure it was Crohn's even before the scope and deep down, so was I. It's just hearing them say it that makes your heart sink! It is a never ending battle, but it does get better. The more you learn about it and how it affects your daughter, the better you are able to catch any flare ups right off and get them under control.

I hope she is feeling better soon!
01-25-2013, 06:13 PM   #8
Patricia56
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Hugs and welcome.

Azathioprine (AZA) takes about 4 months to work.

Prednisone is evil but often necessary. Side effects are awful for most people. However red flags that you need to be sure the docs know about include:

1. strong family history of diabetes - pred can cause this
2. strong family history of mood disorders - the dirty little secret is that prednisone can make even normal people need psychiatric hospitalization and do not let the GI tell you otherwise. if you have a family history of these illnesses be aware that pred can trigger it or cause a severe worsening of the condition
3. history of unusual or persistent infections - may indicate immune deficiency problems and pred makes you more susceptible

Exclusive enteral nutrition would be a possible alternative or additional treatment that could be used. And you can insist on the lowest possible dose being used until it's proven that she needs more.

Have they done anything besides scopes to determine the extent of disease? MRE or pill camera?
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Badger, 18, CD, overall great guy
Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
01-25-2013, 06:35 PM   #9
xmdmom
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Prednisone is not evil and many people do not have problems with short courses of it. It is long or repeated courses of high dose prednisone that are most likely to cause problems for people. The biggest problem for children is that it can inhibit statural growth but that doesn't seem like it's an issue here.

Elevated blood sugars can happen but are much more common in adults or people who are overweight.

There is another thread going with a 22 year old asking the same question about prednisone http://www.crohnsforum.com/showthread.php?t=46418

For my son, who is 19, prednisone made him feel better after a week or so and helped him gain the weight he lost. He didn't have any mood changes but did have increased sweating and his facial acne got worse.

HUGs and hope she gets better soon!
01-25-2013, 07:30 PM   #10
Farmwife
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Hi and welcome.
I'm so sorry you had to find your way here.
As far as any drugs goes, you'll find many different experience that people had while on it. What happens to one might not happen to another. Some people have a concern over a specific med, while one swears by it. That's why this disease is so tricky. I hope things get turned around quick for you child. Welcome aboard.
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I'm mom to............... Little Farm Girl 9 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
01-25-2013, 09:14 PM   #11
Dexky
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Welcome mom, all of that ^^^^ and energy! You can expect she'll have loads of energy, drive you up the wall energy if she's anything like my son.
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Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
01-25-2013, 09:31 PM   #12
Twiggy930
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erinsmom

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

My son was diagnosed a year ago at the age of 10. He was also started on prednisone and then azathioprine. While prednisone didn't make my son feel wonderful it certainly halted the massive weight loss that he was experiencing at the time of diagnosis which was a huge relief. My son had to go on prednisone a second time to treat Crohn's related arthritis that he developed in the spring. At that time prednisone literally enabled him to walk again for the first time in 3 months overnight!!! It is a drug that lots of people love to hate but it can really do some amazing things and it can often do it FAST.

As for side effects my son experienced quite a few but none were dire. He got the moon face, had some weight gain (which we were thankful for), increased appetite (again thankful for), night sweats, trouble concentrating and terrible insomnia. Really the worst of these side effects was the insomnia and we just dealt with it by allowing him to watch movies on an iPad in bed. I know it sounds like a terrible thing for a parent to allow their 10 year old to watch movies in bed at all hours of the night but pred insomnia require some desperate measures. All of these side effects went away when the dose was tapered.

My son has had no side effects from the azathioprine and it seems to be doing the trick.

I hope your daughter responds well to both the pred and azathioprine. I'd recommend stocking the fridge and cupboards well because the pred munchies come on fast and furious which is such a welcome thing when our kids have lost so much weight.

and keep us posted on how she does.
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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.
01-26-2013, 02:17 AM   #13
Patricia56
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Had no idea my calling pred evil would cause a stir.

But it is far too powerful a drug to be handed out like candy - which many GI's do.

It is far too dangerous a drug for children to be kept on for extended periods of time (generally anything more than 1 month) without safe and appropriate weaning procedures done - something which many GI's fail to do

Few, if any, parents are warned of the possibility of severe mood disturbances, of suppression of the adrenal axis, of diabetes that can occur very quickly and can be life threatening, especially when parents do not know to watch for signs and symptoms that may need a doctor's attention.

That leaves out the damage to the bones which may leave a kid with such severe osteoporosis that he gets spinal fractures when mini-golfing following months of pred (true story). The kids bones were probably already in poor shape due to Crohn's but the point is that his parents had no clue that this drug could do that kind of damage. Nor about the fact that his adrenal glands might never recover so he would be on steroid treatments for the rest of his life. Nor about the risk of pseudotumor cerebri which causes increased intracranial fluid pressure that in turn causes severe head pain and vision changes due to swelling and damage to the optic nerve. Treatment is lumbar puncture to remove excess CSF. It might go away, it might not and it can happen after you've stopped the prednisone.

Yes, many kids/people can take this medication and have manageable side effects with not much trouble weaning off the drug. It is a necessary tool to treat Crohn's - until they find something better.

What is "evil" about prednisone is that it feels great - you feel soooo much better and it's like instantaneous.

But then the side effects kick in - moon face, acne, stretch marks, anxiety, sleeplessness, huge appetite - and you stop feeling quite so great.

It's when you start to wean off pred that the physical misery usually sets in. And that process takes a long time (if done safelly) because the pred has suppressed your adrenal glands so they don't work anymore and you have to go very slow so they "wake up" and start doing their job again. Or you could go into adrenal crisis which is a life threatening event.

Maybe evil was the wrong word to use. But it's how I think of it.

It is absolutely necessary. It is a life-saving drug and our kids need it - too often.

It doesn't heal their bodies. Hopefully it buys time for other treatments to do that.

And it can kill and it can injure their bodies and their minds, sometimes permanently.

All while they are feeling great.
01-26-2013, 02:52 AM   #14
Catherine
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Understand the feel great comment, my daughter is maybe an extreme example this effect

Tuesday pain at 4
Wednesday ok
Thursday pain at 6, vomiting over car and herself (sure you all know how stressful this is when your 17), x_ray to rule bad things, blood draw, sleeped rest of day. Started pred 30
Friday, pain a 2, swum a small swim comp. Pred increases to 50
Today, swum 5km, and back up with 1.4 hour later.

Sarah lost about 12kg in the two months prior to dx. Pred her pain go away quickly and along with ensure helped her gain the weight back.
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Catherine
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, 05:52 AM   #15
CarolinAlaska
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My 14 year old daughter was just diagnosed yesterday with Crohn's disease and I'm now trying to gather us much information that I can. The disease runs throughout her entire GI tract and appeared on the scope as ulcers. I was shocked. All this started because she had a large weight loss (lost 20 lbs down to 104 and she's 5'8") and constipation. She's always had stomach pains, but they would only last minutes and her pediatrician didn't seem concerned. Now 6 years later, we get the diagnosis I wasn't prepared to hear. They started her on Predinose yesterday and are waiting for her enzymes to be tested before starting her on azathropine. What kind of things can I expect from Predinose. I plan on asking questions of the Dr next week when we have our follow-up appointment, are there any certain things I should ask? We only had time to talk after the procedure yesterday for a brief period before I had to run to recovery so she wouldn't wake up alone.
I'm sorry to hear of your daughter's illness. My daughter (13.5) was just diagnosed this month too. My peds GI also wanted to do prednisone, but I've been hemming and hawing. I have also been gathering a lot of information and we will probably be doing enteric nutrition for starters. It seems a good fit for her and can also bring about remission in a healthy way and help her gain weight (she's severely underweight at 70 lbs right now). I've got another thread going on now if you want to read it. Hang in there, your daughter is in good hands with peds GI and she will improve and you will make it too. Big <<<<HUGS>>>>

Carol
01-26-2013, 08:15 AM   #16
xmdmom
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Enteral nutrition is a terrific option for many children/ teenagers. A tube can be put in each night and taken out in the morning. Others manage to drink the EN. EN is given alone or with medications depending on the circumstances.

Best wishes!
01-26-2013, 05:50 PM   #17
Sascot
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Hi and welcome. Sorry I don't have much info on meds. My son went straight onto the 8 weeks exclusive EN via an NG tube as soon as diagnosed instead of Pred and it worked wonders. Still trying to find a maintenance med. Aza seems to be the starting point for many GI's, hope it works well!
01-26-2013, 06:52 PM   #18
my little penguin
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DS 's story was a little different . We did not want him on pred for all the reasons listed here and more. We push for EEN since it can be as effective in kids with MILD disease .
Gi agreed and DS drank for 9 weeks nothing but peptamen jr.
No food just water. He was aslo on 6-mp. I would love to say the EEN made him feel great . It didn't . For him it wasn't enough.
He got nutrition but did not gain weight and his symptoms got worse.
Gi ordered pred but a low dose -20 mg for one week then taper since both of us including Gi
Didn't really want him on it .
Again no weight gain symptoms worse.
Second round of pred we started at 30 mg this time - finally a small improvement but any tapering attempts things went down hill. He did gain weight and have lots of side effects.
It wasn't until we were on remicade for 6 weeks and weaned from pred that DS got relief.


My point being please learn from us -- do not be so set against something thinking something else will work better -- if it clearly isn't working.
Sometimes you need to jump in the deep end in order to get the benefits and feel better quickly in the cold water versus drawing out the agony of getting in by just dipping your toe in.

Hard decisions are never easy.

DS still drinks 3-4 shakes of peptamen jr a day to make sure he can grow like any other kid .
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01-26-2013, 10:15 PM   #19
kimmidwife
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Just wanted to say hi and welcome. You have been given loads of good advice already. I would recommend looking at the treatment section on the front page. It helps to get familiar with the different kinds of treatment out there. I know a few people have mentioned enteral nutrition which is a liquid diet that allows the gut to heal and rest. In Europe it is the first line of treatment. In the USA for some reason the doctors here think that it will be too hard for the children to stick to. ( at least that is what I heard from the two GIs I asked why we were never offered it when I found out about it) it is something to think about trying as it is not a drug and so has very few side effects or risks. It will also help her gain back the weight she lost and fix some of the malnutrition she may have from that weight loss.
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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, 10:28 PM   #20
Johnnysmom
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Prednisone worked wonderful for my son. He gained 30 lbs and kept all of it on since. He didn't mind the moon face because he was so thin and it went away when he finished. He had trouble sleeping about a month after he started it, we put a TV in his room . There were bumps in the road for sure but it was much easier than how he felt before he went on it. I don't regret using it at all.

There is a very steep learning curve and lots of this will be specific to what works for your daughter. Be open minded, take in information and you will figure out what works for her. ((((((Hugs)))))))) The first 6 months after diagnosis is really hard to take in. I cried for 2 weeks straight. But things will get so much better.
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Dx Oct 11 2011 Crohns disease
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01-26-2013, 11:19 PM   #21
723crossroads
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Thankyou for sharing that with us. So glad to hear he's so much better. He's adorable!
01-27-2013, 05:49 AM   #22
DustyKat
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My 14 year old daughter was just diagnosed yesterday with Crohn's disease and I'm now trying to gather us much information that I can. The disease runs throughout her entire GI tract and appeared on the scope as ulcers. I was shocked. All this started because she had a large weight loss (lost 20 lbs down to 104 and she's 5'8") and constipation. She's always had stomach pains, but they would only last minutes and her pediatrician didn't seem concerned. Now 6 years later, we get the diagnosis I wasn't prepared to hear. They started her on Predinose yesterday and are waiting for her enzymes to be tested before starting her on azathropine. What kind of things can I expect from Predinose. I plan on asking questions of the Dr next week when we have our follow-up appointment, are there any certain things I should ask? We only had time to talk after the procedure yesterday for a brief period before I had to run to recovery so she wouldn't wake up alone.
Hi erinsmom and

I am so very sorry to hear about your daughter, bless her... and I can well imagine your shock. My daughter was also diagnosed at 14.

This is just a basic list of questions:

-What is the diagnosis? You know that one!

-Where is the disease active?

-What form does the disease take (inflammation, ulcers, fistulas)

-How severe would you say the disease is?

-What symptoms do I need to report immediately to you, which can wait until my scheduled appointment, and which signify an emergency?

-What treatment options are open to my daughter?

-What does (treatment) do? What side effects should I be aware of?

-How long before we should see an improvement?

-Does she need to take any nutritional supplements such as b12 or iron?

-Should testing be done for vitamin and mineral deficiencies?



My daughter was diagnosed on the operating table so did not have the usual medications from the outset.

My son did however. He was commenced on the same regime as your daughter but soon developed complications and he too required surgery a little further down the track.
My son had yet another experience with Prednisone to what others have had. On the surface the Prednisone seemed to do nothing. I think it may have helped stabilise him but it did not reverse the disease. He didn't even get any side effects from it. The only time he developed a slight moon face and increased appetite was when he was onto his third course of IV Hydrocortisone and those effects disappeared when the IV was ceased.

EN has already been mentioned so I won't repeat what has been said but even if not used as an exclusive treatment it may well be worth looking into as a compliment to medication and also as way of providing nutrition and weight gain.

I hope the appointment next week is a productive one and your daughter finds long and lasting relief.

Good luck and welcome aboard!

Dusty. xxx
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01-28-2013, 10:19 AM   #23
erinsmom
 
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First, I want to thank everyone for the wonderful advise and support. It really does help hearing from everyone about their different thoughts and experiences.

I am happy to report that Erin's appetite is back in full force. It seems like forever since I could get her to even eat a complete sandwich, now she's cleaining her plate. She's always been active, the only differnce was if she wasn't riding her horse or playing softball before...she was sleeping. Now she's not falling asleep on the couch, she's talking my ear off. It's really cute.

I do remember (at least I think I do...I was in a fog) that the doctore had only planned on having her on Pred for 4 weeks and then 2 weeks to taper off. I am going to try and make sure he does this because I hadn't heard of the side effect that it can bring out mental instability until this forum. Even though she's never experienced it...depression runs in the family, her father committed suicide only 4 years ago. If anyone has anymore insite on that side effect if would be great.

Thank you for all the support, I'm glad I found this site.
01-28-2013, 10:27 AM   #24
723crossroads
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Oh that is wonderful news!!! I pray she continues to improve and have a normal life and a happier one, you too!
01-28-2013, 11:16 AM   #25
Jmrogers4
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Glad she is feeling better, love the avatar, looks like my horse when I was about her age.
01-28-2013, 06:22 PM   #26
my little penguin
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You want a slow taper .. Very slow weeks to give the 6-mp time to work and not let the inflammation the pred just calmed down to come back quickly .

Hugs
01-29-2013, 12:45 AM   #27
CarolinAlaska
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My doc was talking about a very slow taper too, like 1 mg every week when it was down to 10 mg...
01-29-2013, 08:04 PM   #28
kimmidwife
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Glad to hear she is feeling better! I also love the avatar. I am love horses too.
01-30-2013, 06:19 AM   #29
Dexky
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I do remember (at least I think I do...I was in a fog) that the doctore had only planned on having her on Pred for 4 weeks and then 2 weeks to taper off. I am going to try and make sure he does this because I hadn't heard of the side effect that it can bring out mental instability until this forum.
I'd forgotten about it but the first time my son was on pred.(a fairly long 3 month taper), he cried often. He was 10 at the time and even he recognized that something was amiss. He asked me why he couldn't stop crying. However, his last taper was much shorter like ^^that and he had no such issues.
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