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04-17-2013, 01:49 PM   #301
ChampsMom
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Since surgery Lukas has only been on Pentasa, which his GI says doesn't do much.

As of right now, he's doing great and his last labs in February were the best they've ever been. His GI said if he continues to do great clinically and endoscopically we could just do nothing... but after everything he's been through, that really scares me. His GI is also very open to both 6MP or Remicade as well, but quite honestly, I'm not sure he knows which direction to go either. It's like we're waiting for something (presumably bad) to happen to point us in a direction.

Hey Mehita...

I'm a little bit at odds with the GIs statement that Pentasa doesn't do much. My son has been on Pentasa since diagnoses and is doing *great*! That was 3 years ago in March (side note -I can not believe it has been 3 years!!)

Anyhoo... At one point early on his GI was looking at his labs and though they were not high by any means, they were not "normal" and she said, we might want to consider a Level 2 med - 6MP. I was opposed to go stronger at that time because his labs were not *bad* and I instead asked if we could up his Pentasa doseage - and she said yes we could try and see what happens. He was clinically doing great hence he wasn't in any danger (I think that is really important to know - as there are some kids who are in DANGER if they don't move on immediately to a stronger med).

You said your son is doing great... then why introduce a drug that he may not need yet? My Mum has always taught us - not to borrow trouble where there is none...

Talking to your GI is a great idea - but (and this is JUST me and my opinion!) I wouldn't want to give a med that may not be needed yet.

I hope that makes sense. I read this and walked away and then felt prompted to respond.

I pray he continues to do GREAT!
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Mom of Champ (Alex)
Dx: CD April 2010
Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
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04-17-2013, 04:34 PM   #302
my little penguin
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Shell-
I think her GI was going by all the studies for crohn's - since in general most crohn's ( not UC) folks ( including kids) just don't get enough from the ASA meds when used alone.
Again not all as your child is evident but that was probably what they were basing that statement on.
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04-17-2013, 04:42 PM   #303
my little penguin
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http://books.google.com/books?id=hOY...20rate&f=false


read above - that is why you want to add it

and this

http://www.practicalgastro.com/pdf/M...insArticle.pdf

this last one should really help you discuss with your go what to do-
It goes through risk factors etc....
04-17-2013, 06:59 PM   #304
Mehita
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ChampsMom - Thanks for your input. I really do appreciate it! Believe me, it's crossed my mind to not rock the boat and my husband is currently in that camp.

I don't think Pentasa is the best med for Lukas since he had a stricture that only got worse due to off and on inflammation over the course of a year while on it. While the stricture has been removed and he's doing better now, just having had the surgery puts him in a whole new ball game and after reading up on post-surgical maintenance meds (thanks to MLP & our GI) I think we need to do something. I just don't know what exactly. All I know is that we don't want to have surgery again for a good oh... 100 years or so.

I think I've come to the conclusion that I need more info and that will be the MRE at 6 months post-op. For now, we just need to ride the high we're on... and I need to find a hobby that has nothing to do with Crohn's!
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- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
04-18-2013, 02:27 AM   #305
CarolinAlaska
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So if you have had the pre-test, then after starting meds you do a lab at 2 weeks and then a month after that. No sweat.
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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.
04-18-2013, 08:43 AM   #306
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I'm a worried mom. Worried I'm going to make the wrong decision and possibly not decide soon enough.

Lukas had his small bowel resection three months ago now. Prior MRE showed no Crohn's any where else except the stricture and his surgeon said he didn't see anything either during surgery. Since surgery Lukas has only been on Pentasa, which his GI says doesn't do much.
Hi Mehita!

My son had a small bowel resection this past October. He has been symptom-free with good labs since then. But our GI showed us research showing that for kids who have had surgery, remicade is the best chance to keep them in remission. We battled insurance for five months until they finally agreed to cover it. Tomorrow he gets his second infusion. I know it is scary to think about giving them such powerful stuff, but I truly believe it is the best thing for him. Our GI is one of the best in the country and our Children's hospital is in the top 3, so I think we are getting good advice.

I read this book when he was diagnosed in 10/12 and found it helpful:

IBD self-management : the AGA guide to Crohn's disease and ulcerative colitis / Sunanda V. Kane

Best wishes!
04-19-2013, 06:52 AM   #307
DustyKat
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Hello Im knew to all this support group stuff but Im not sure who else to ask this question. I have a 12 yr old son who has been dealing with Crohns for about a yr now and Im glad to say that he is doing very well. He has always wanted to join the military, he talks about it all the time and in the past few days I have found out that he cant. Im hoping theres a parent out there that has some advice on how and when to brake this news to him. Should I tell him now or do I wait? I know hes going to crushed. Thank you to anyone that can help!
As hard as it is I would tell him now rather than have him continue to believe in a path in life that he can't take. I know he will be devastated, bless him, but he will push through it and find another passion...

My daughter also wanted to join the armed forces. I was unaware at the time of her starting university that this was her ultimate aim and she had chosen her course, psychology, with that in mind. Near the end of her first year she found out she was unable to join due to her Crohn's, she was absolutely heartbroken but she rallied round and changed her studies. I imagine that she has moments when she still wishes that she could follow her original dream but she has moved on and is happy with the choices she has made.

Good luck Camsmom, you are in my thoughts.

Dusty. xxx
04-19-2013, 06:58 AM   #308
DustyKat
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@Mehita:

As Dexky has said, for us Imuran has worked very well. Both kids have been on since their ileal resections and have maintained remission. Sarah will be seven years on the 10th July and Matt was two years on the 7th April.

Good luck hun, there surely is nothing harder than making these decisions on behalf of the ones we hold so very dear.

Dusty. xxx
04-19-2013, 09:14 PM   #309
Lisa
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Done!!
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
04-22-2013, 01:56 PM   #310
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I am just throwing this out there for everyone to chime in on...how do you get your child to stick to any sort of IBD or Crohn's diet without making them feel left out? My 9 year old seems to go into the "oh poor me" mode every time one of the other kids eats something we have put on his no-no list. Any suggestions will be appreciated
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04-22-2013, 04:53 PM   #311
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Hey Kristy,

I did a couple of things with that issue.

1) For everything on his no-no list we went looking for some sort of substitution - and it was a bit of an adventure game. First he had to decide, was it the taste or texture he missed.

With pop-corn (which was a biggy) he said he missed the taste, but really missed the crunch (seemed like he was eating soft food *forever*!) We tried the hull-less popcorn - but it wasn't the right texture. After a few misses, he settled on Corn Pops (yep, the cereal!).

With ice cream - we tried a few different kinds: frozen yogurt, tofu ice cream, soy ice cream and lactose free ice cream. He preferred the lactose free.

For nuts - he settled on honey-nut scooters (like cheerios).

For pizza - he pulls back the cheese and adds toppings.

Then we tried to turn things around to a positive.

For example - because he can't eat 3 big meals (GI recommended him to eat small meals all day long so his body wasn't trying to digest large portions of food) he carrys a small cooler around *every-where-he-goes* (it's a laugh)... So he can eat anywhere!! When he was attending public school he was the only kid who could eat during class (we knew there were kids in other classes with diabetes and other issues who were also permitted, but in his classes he was the only one).

When we went to Disney World all we had to do was tell a Manager that he was on a restricted diet and they would make him anything he wanted and they'd make it especially for him

Last thing (that I can think of right now anyways..) is initially I changed everyone's diet in the whole house by eliminating things that he couldn't eat... but as he adapted and became comfortable with his personal needs, we started adding more - I think he enjoys the fact that regardless of what I'm serving for dinner - he knows he'll have something he likes (laughs..). And at the end of the day, regardless of what other people are eating, he knows what doesn't agree with him and what does - and the latter is better!

Is your son going to Scout Camp this year? If so - it is something to start thinking about - FOOD!!

Good luck!

Last edited by ChampsMom; 04-22-2013 at 04:59 PM. Reason: typos
04-22-2013, 06:51 PM   #312
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What great ideas all of you have to help with diets. We also changed the family diet for a while when our daughter was in a flare.

My concern now is that she is doing so well at this time, but her eating habits are awful. She is 14 and we go round and around......it is literally every meal, every cup of tea, every food choice she is making has way too much sugar, way too many carbs, no vegetables. I am trying to find an app that she can download that educates her as to what food groups she is missing each day but cant find one yet that she can use on her Android. anyone know of one? i know she will eventually understand how important all of this is, but I need to help her get a handle on it right now!!!

taking helpful ideas for stubborn, hungry teens...
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Daughter (age 17) diagnosed with Crohns Colitis/UC 1/2012 Mod/severe changed to U.C.: 11/7/2014 anemia:blood transfusion current: Flare, weaning from Prednisone, still bloating: Meds ,Pentesa: 2000mg twice daily, Vegan diet, mesalamine enemas .Previous: mercaptopurine, Remicade (13 treatments), Imuran, prednisone ), Flagyl, iron infusions, cortifoam,
Continue to be hopeful
Daughter: age 21, undiagnosed: GI issues
04-22-2013, 07:07 PM   #313
my little penguin
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My fitness pal
Will calculate everything for either weight gain or loss or fitness .
Plus its free
04-22-2013, 07:13 PM   #314
Hope345
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thanks MLP, I will have her try it tonight.
04-22-2013, 07:20 PM   #315
Mehita
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We LOVE My Fitness Pal! We used it to track calorie intake and fiber when DS wasn't doing so well. He was able to see how many calories he was short or if he was close to getting too much fiber. The best part is the huge database of food that is already set up for you to choose from (even GF food). We printed reports for his GI so he could see calorie intake and that we really were trying to stick to the GF, low res, low fiber diet.

It's a wonderful app and is available for Android.
04-22-2013, 07:50 PM   #316
Hope345
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I just told her about it, but my concern is not the calories but the type of food and that she gets a well balanced diet. For instance, if she eats all carbs/sugars/fruits and no protein or veggies.... we will see if it fits. If it does great, if not we will find one!!! thanks again... cant wait to see if it works for her. At this age, it needs to be her idea and she has to put the effort into wanting to do it.
04-22-2013, 10:06 PM   #317
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Hey Kristy,

I did a couple of things with that issue.

1) For everything on his no-no list we went looking for some sort of substitution - and it was a bit of an adventure game. First he had to decide, was it the taste or texture he missed.

With pop-corn (which was a biggy) he said he missed the taste, but really missed the crunch (seemed like he was eating soft food *forever*!) We tried the hull-less popcorn - but it wasn't the right texture. After a few misses, he settled on Corn Pops (yep, the cereal!).

With ice cream - we tried a few different kinds: frozen yogurt, tofu ice cream, soy ice cream and lactose free ice cream. He preferred the lactose free.

For nuts - he settled on honey-nut scooters (like cheerios).

For pizza - he pulls back the cheese and adds toppings.

Then we tried to turn things around to a positive.

For example - because he can't eat 3 big meals (GI recommended him to eat small meals all day long so his body wasn't trying to digest large portions of food) he carrys a small cooler around *every-where-he-goes* (it's a laugh)... So he can eat anywhere!! When he was attending public school he was the only kid who could eat during class (we knew there were kids in other classes with diabetes and other issues who were also permitted, but in his classes he was the only one).

When we went to Disney World all we had to do was tell a Manager that he was on a restricted diet and they would make him anything he wanted and they'd make it especially for him

Last thing (that I can think of right now anyways..) is initially I changed everyone's diet in the whole house by eliminating things that he couldn't eat... but as he adapted and became comfortable with his personal needs, we started adding more - I think he enjoys the fact that regardless of what I'm serving for dinner - he knows he'll have something he likes (laughs..). And at the end of the day, regardless of what other people are eating, he knows what doesn't agree with him and what does - and the latter is better!

Is your son going to Scout Camp this year? If so - it is something to start thinking about - FOOD!!

Good luck!
So many great ideas..thank you. He is going to scout camp, but it is only day camp and they make them take their own lunches, so we are all good in that department. He just gets frustrated with not being able to eat the same things his friends do. I know this is the early stages for us, he has only been doing this for a little over a month. But at school he will grab a milk to drink because he just really wants it. We have milk on the no-no list. He said he only drank 2 swallows...but his tummy hurt afterwards haha. I think sooner or later he will learn it isn't worth the pain. But right now I am trying to find good encouraging ways to keep those no-no foods at bay.
04-22-2013, 10:13 PM   #318
my little penguin
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CAn you pack his lunch at school for a while ( less tempting that way)
We let DS pick "fun things he likes that are safe as well as good things to go in his lunch.
IF other are having brand xyz of chip then I find some other bag he can eat.
the point being taking him shopping with you alot and he will help you find things he would be willing to try that also taste good.

What is he actively avoiding?

DS was free of corn, milk, eggs, soy, peanuts, tree nuts, fish, shellfish, oats, barley, rye, and wheat one point....not any more thank goodness
So if I can pack a lunch for him...anything is possible.
04-22-2013, 10:21 PM   #319
Kristy5959
 
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CAn you pack his lunch at school for a while ( less tempting that way)
We let DS pick "fun things he likes that are safe as well as good things to go in his lunch.
IF other are having brand xyz of chip then I find some other bag he can eat.
the point being taking him shopping with you alot and he will help you find things he would be willing to try that also taste good.

What is he actively avoiding?

DS was free of corn, milk, eggs, soy, peanuts, tree nuts, fish, shellfish, oats, barley, rye, and wheat one point....not any more thank goodness
So if I can pack a lunch for him...anything is possible.
That is part of the problem...we keep learning new trigger foods, seriously almost 1 every other day. I get so overwhelmed when we decide another food is causing a problem. I am not even sure where to start when deciding what he can and can't eat. We started a food journal, that worked great until he had a flare...then everything hurt his stomach. Any advice on how to officially decide if it goes on the no-no list?
04-23-2013, 09:25 PM   #320
ChampsMom
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That is part of the problem...we keep learning new trigger foods, seriously almost 1 every other day. I get so overwhelmed when we decide another food is causing a problem. I am not even sure where to start when deciding what he can and can't eat. We started a food journal, that worked great until he had a flare...then everything hurt his stomach. Any advice on how to officially decide if it goes on the no-no list?
What you are doing is spot-on - food journal! There are some things that seem to show up on a ton of lists (but as always, what might be a no-no on one persons list is okay on anothers, sigh...)

Trial and error seems to be the best (worst) only? approach.

Good luck!
04-23-2013, 10:00 PM   #321
my little penguin
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The other thing to keep in mind- until his inflammation is down- and he is done flaring- IT may be hard to pin point what is a truly a trigger food and what is "just" crohn's not under control.

remember most foods do not cause a flare but can make a flare seem worse.

We let ds lead the way on what he wanted to eat for the most part ( outside of nuts/raw veggies/seeds/popcorn)
for the most part he knew after a bit that food x made him feel worse.

but to know that he need to be feeling good first kwim.

I wouldnt eliminate any food at first just track for a few weeks then see if a pattern emerges- the results should be reproducible.
04-24-2013, 04:52 AM   #322
Dexky
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We let ds lead the way on what he wanted to eat for the most part ( outside of nuts/raw veggies/seeds/popcorn)
for the most part he knew after a bit that food x made him feel worse.
Ditto! It's amazing how quickly they tune-in to their bodies!
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PSC 3/10

No more 6mp
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05-12-2013, 02:03 PM   #323
Mehita
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I was up at 2:00 am last night wide awake with worry and crying. I feel like I'm prednisone right along with DS sometimes. All the worst case scenarios were just rolling through my head. What if the Aza doesn't work? What if he's one of the 4 in 10,000. Unlikely, yes, but there are four people in this world who, statistically, will be those four unlucky souls. Why did he flare so fast? What if GI #3 is no better than 1 & 2? Why DS? Why not me instead? Why is there not a cure yet? Are we going to make its through the school year? What if they say no to my 504 changes? Should I have let DS eat that slice of pizza? Or will he pay for it in a couple hours? What if Remicade and Humira don't work? Will he get his high school diploma from a hospital bed?

And on, and on, and on. How do you turn it off? Someone please tell me I'm not the only one who has moments like this...?
05-12-2013, 02:13 PM   #324
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When I'm way too stressed I find nothing sooths my brain like repetitive movement. Generally I'll knit or something like that, some how keeping my hands occupied, keeps my brain distracted enough from the whirling thoughts that I find them easier to handle.

I also find thought monitoring helpful. In my pain CBT course we we're taught to write down all those damaging thoughts and beneath each of them write, "Is it realistic? / Is it helpful?" Then write an alternative that better met those two criteria, which we'd then write out repeatedly.
05-12-2013, 02:24 PM   #325
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No you not the only one!

My big thing is.....I can't believe I have the girl that can't eat. When did this happen? How did we get here?

For me like Maree I try to take my mind off of it. Whether by sewing or thinking about the following Sunday school lesson. Sometimes that works and sometimes it doesn't.
HUGS, we've all been there and I'm sure we'll make visits again.
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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
05-12-2013, 02:28 PM   #326
xmdmom
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I'm a worrier too and have found mindfulness to be very helpful. I have also found it useful to try to distance myself from the worries, thinking "I notice I am worrying about..."

[[[HUGS]]]
05-12-2013, 02:41 PM   #327
CarolinAlaska
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I get that way whenever Jaedyn is in a flare or we have to make a decision on what changes to make. Hang in there - it is the high drop of a roller coaster - scary, but you'll come through it all right.
05-12-2013, 03:31 PM   #328
Josephine
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Crap drinking wine, need crying because what my genetic cause my daughter to ill.
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Acid Reflux for 15 years med

Sacroiliitis and add to grew list auto immune diseases.

Now on Lansprazole 15 mg And Gavin son 5mg-10mg 3a day.

Crohns from Oct 2007
Domperidone 10 mg -20 mg, Mebeverine 135 mg,
3 a day.
Balsalazide 750 mg 3 X3 a day on going.
Bone protection.

Azathioprine is not working, still waiting to find out what next. Still on low dosage Prednisolone

Mesalamine Enema


No Wheat

English my native language and have characterizes of dyslexia.
05-16-2013, 05:02 AM   #329
DustyKat
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I was up at 2:00 am last night wide awake with worry and crying. I feel like I'm prednisone right along with DS sometimes. All the worst case scenarios were just rolling through my head. What if the Aza doesn't work? What if he's one of the 4 in 10,000. Unlikely, yes, but there are four people in this world who, statistically, will be those four unlucky souls. Why did he flare so fast? What if GI #3 is no better than 1 & 2? Why DS? Why not me instead? Why is there not a cure yet? Are we going to make its through the school year? What if they say no to my 504 changes? Should I have let DS eat that slice of pizza? Or will he pay for it in a couple hours? What if Remicade and Humira don't work? Will he get his high school diploma from a hospital bed?

And on, and on, and on. How do you turn it off? Someone please tell me I'm not the only one who has moments like this...?
You are not the only by a looooooooooooooong shot Mehita.

I have always found night time the hardest. The days are the time when you are busy and put up the brave front so your baby doesn't see the fear and uncertainty in your eyes. BUT come the night, when all is quiet and the darkness hides your face...that is when the front comes tumbling down. It can be a good thing Mehita, you need to release the anger, dread, frustration, ache and uncertainty, it helps to recharge the batteries and face the morning with renewed resolve when you see your dear son.

Can this go night after night? no it can't and more often than not it doesn't so it doesn't become all consuming. I didn't have the night after night problem with Sarah but finding that I had two children with Crohn's was utterly devastating and I couldn't sleep. I couldn't function like that so what did I do? I took a sleeping tablet every now and then until I was over the worst of it. For me that was the only way I could switch off and be any use to anyone the next day.

Dusty.
05-23-2013, 09:28 AM   #330
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Hi Mums & Dads,
I just posted on the LDA support group, but wanted to repost here. Mainly because I am so extremely hopeful that LDA treatments we just started and LDN (medication we just started- new on the scene for kids as of Sept 2012-FAD approved and very few side effects!) will be making a difference for us here soon. I will continue to let you know how things go, but wanted to get the word out fo these methods since so far for us everything else we have tried ( incluing pentasa-adds to lethargy) has done more harm than good. For what its worth here is my long winded update. Best to all you Moms and Dads out there. My heart is with you I hope this might be helpful to someone.

My son went to see our local LDA doc here in MD. Dr. Layton in Towson. He is so thorough and took his time with us. He had seen us back in 2008 but we thought we couldn't afford the treatments for (at the time) recurrent strep infections, severe ADHD, gluten sensitivity, allergies, and sensory integration issues. Now five years later after two surgeries(adnoid tonsil), colonoscopy, Crohns Dx, malnutrition, 2 years of not being able to attend school outside of home, and failed medication after failed medication we returned to seek help with him again.
Hind sight is 20/20, but needless to say I wish we had not been so skittish about it not being FDA approved, costing $ and being slightly painful. We would have saved a ton of heartache, pain and money.
He has only had his first round of treatment last week. We did 4 shots one for environment (mold trees, pollen, dust etc) one for chemicals and plastics, and medications and one for common food sensitivities, and one specifically for bacteria associated with Crohns.
The doctor warned him as he took blood samples that the LDA would be much more painful. He was totally honest and gained my sons trust. It was extremely painful esp. after just having blood taken but he has been sick for so long and was so brave. He held my hand, and when I told him to squeeze it hard if it hurt he said he didn't want to hurt me and he just closed his eyes hard. The next day he was tired and his arm still hurt a lot. But he is on board completely with the treatments which is huge! He is a teenager and had previously announced he would refuse to take the next level of meds after our horrible (HORRIBLE!) experience with steroids.
I cant give a complete scientific cause and result effect here because he also started taking LDN the same week we started LDA. He has been pretty tired, but not more than his usual ( bed ridden for the most part) He has been engaging much more in conversation and family games and even went for a bike ride with his friends (the next day he regretted it though was wiped)
Honestly I cant believe it has only been a week since he had the treatment. I am so encouraged. Though he has complained every day about how awful he feels, (unusual for him) and his appetite comes and goes, he seems more alert than I have seen him in a long time. He wants to start the specific Carbohydrate diet today (suggested to him by Dr Layton) He knows what it is like so he put it off for a week. So today I have to get organised and plan ahead for that. (Easy SCD ideas and snack thoughts welcome!) I find it hard to keep it diverse enough for him to want to stay on it. I usually get stuck on just serving meat, salad and nuts. He craves his potato chips, (but this is for another section of the support forum~I digress)
Will keep you posted on his progress with LDA. Love our Doc! He is so amazing! Best bedside manner and he reads every report and really cares to do the right thing. He helped my son to see that he was settling for the life of an old man when he has his whole life ahead of him, and while he cant guarantee it he has helped so many he would be surprise if he didn't feel better after the treatments.His goal is to get him back to feeling good. The doc asked my son "when was the last time you remember having energy and feeling good?" His reply was that he remembered the feeling of running strong once when he was maybe 8.( more likely 6 I am thinking) My son doesn't even have much of in idea of what it feels like to feel good and the doc drove this point home to him so he would have incentive to get better and a baseline of reference for where he is now, and how he is feeling when he goes back for his next treatment in 2 months. His running memory will be a 9 on his scale with his current state will be the 3-4 marker. ( he said 4- Dr Layton & I both thought more like 3)
So, thats where we are just thought I would share a bit of our progress here. Yet again, hoping for the best. Cant tell you how many times that has stung me in the end, but here I am again. Fingers crossed, prayers good vibes and kind thoughts welcome. oh and SCD hints too! Thanks for being out there and sharing your stories. Particularly Scottchopchop, yours inspired me to go back to our LDA doc. thanks. :] will try to keep you posted.
~liz
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Liz,
GF Mom of 14year old:
Early stage Crohns" "Microscopic inflammation" from"top to bottom"
currently on 3.5mg LDN ( started June 2013)
doing LDA injections 9 week intervals ( june 2013)
4000 mg pentasa
VSL
diagnosed 2/12 still mostly bedridden as of 9/13 but has gained wieght and some muscle. :]
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