Share Facebook


 
06-03-2012, 04:31 PM   #31
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
400 IM. very impressed- my LO is too young to swim that yet. He is only 8. Normally he swims 25 free and back.
The coach signed him up for 100 IM once early last year - he took so long everyone cheered when he got out since no one was sure he was even going to make it.

Glad to hear she was able to swim again that is a good feeling.
FWIW our GI tracks DS progress on how well he is doing at meets or swim practice:sole dance:

If he can't swim more than a lap without a break or his meet time go up- doc know the current med is not working no matter what the blood tests say.
06-03-2012, 04:44 PM   #32
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
I remember days when they would do a pb everytime they swum. Sarah not making time she did 2 years. She has improved so much in training.

I am home sick today, so I will look at posting some before and after shots.
__________________
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)
06-04-2012, 01:10 AM   #33
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
I am glad to hear she is doing well. Swimming is such a good exercise and good especially for kids with Crohns who have joint issues.
__________________

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.
06-04-2012, 05:22 AM   #34
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
I have tried to add two pictures of Sarah to this posting but have only managed to get them into albums.

The first one shows Sarah at dx, weighting about 44 kg (97lb) BMI 15

Second one was taking last week, and she is wearing the dress she made for year 11 textiles. In this photo she weight about 54 kg (119lb) BMI 17.1

Still can't believe how thin was at dx, and how far she has come in the last four months.

http://www.crohnsforum.com/album.php?albumid=411

Last edited by Catherine; 06-04-2012 at 05:35 AM. Reason: Add notes
06-04-2012, 05:41 AM   #35
Suzysu
Senior Member
 
Suzysu's Avatar
 
Join Date: Apr 2012
Location: United Kingdom

My Support Groups:
She is a beautiful and amazing girl - and as you say she has come so far in just 4 months. Also I think she may have a future career as a dress designer!! xxxxxxxxxxxx
06-04-2012, 06:19 AM   #36
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
MLP: Awww those 8/U swimmers are so darned adorable! Our doc also uses times as part of the equation. This weekend she was all over the board so who knows. Blood being pulled today so we will see.

Catherine: She is so beautiful! And you can totally tell in the pictures how much progress she has made. I think we were all living in sunny dream world prior to dx.
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
06-09-2012, 03:04 AM   #37
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Sarah swum well today, only 8 sec over her 400IM time and back up 10 mins later with a time only 5 sec off her best 200 IM and finish with 100 back only 1,sec off her offical best time.

Rachel swum next to Linley Frame in the 100 breast, Linley did 1.12. Rachel just looked Linley up the net to find out why the parents thought this was exciting. Linley was world champion in this event in 1991.

Both my older girl can now say they have raced against world champion.

Last edited by Catherine; 06-09-2012 at 09:05 PM.
06-09-2012, 03:43 AM   #38
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
That's great that her swimming times are getting better. Glad she is feeling better - lovely pictures!!
06-09-2012, 10:54 AM   #39
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
Wow! Only 8 slow on the 400 IM?!!! And 5 on the 200 with little rest and 1 on the 100 back?!!! Sounds to me like the Sarah is in a groove. I hope she was please.

What an incredible experience for Rachel! Was it circle seeding? Neither of my girls would ever be in the same heat as a world champion. We do have some Olympic trial qualifiers on our team and O treats them like they are celebs but that is as good as it gets...so far
06-09-2012, 11:15 AM   #40
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Congratulation on your girl doing a well as she did.
Way to go mom. You must be so proud!

Farmwife
__________________
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
06-09-2012, 03:18 PM   #41
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Woohoo! Fab update Catherine! You have made my day!


Dusty. xxx
__________________
Mum of 2 kids with Crohn's.
06-09-2012, 09:16 PM   #42
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Rachel,was in slowest heat of the 14 and over 100 br. Linley swims for the club hosting the meet and was not on the program for the event. So her club has entered her on day where there was a spot. Linley come out of retirement in 2010, and is now 42.
06-12-2012, 11:41 PM   #43
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Back from GI review today.

Hemoglobin levels are now normal. Sarah weight is 58kg, this is the most she has ever weighted. Will be increasing aza to 100mg per day, pred 3mg per day.

The only reason the GI is not saying remission is that Sarah is still taking pred. She has not symptoms. The slight stomach pains, which Sarah describes as different to her crohn's pains are most like due to exam stress.

Follow up in 4 months my only concern to the distance between blood tests. We have a blood test order to be done before the next appointment or if Sarah feels unwell.
06-13-2012, 12:56 AM   #44
Suzysu
Senior Member
 
Suzysu's Avatar
 
Join Date: Apr 2012
Location: United Kingdom

My Support Groups:
Im so glad she is doing well - realy wonderful news! - I don't really know about blood tests on aza can you call the GI's office and just check? or check with your GP? xx
06-13-2012, 01:03 AM   #45
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Suzysu, it just everyone here seems to saying blood tests every 2-3 months, and our GI does not to do any blood test, even with the increase in aza. Maybe a trip to the GP for me to discuss my concerns. I just worry about the possible side effects and I know the old ones of unlikely.

I know Dusty, kids have blood test every two months.
06-13-2012, 05:26 AM   #46
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Hey Catherine,

What a wonderful update!

GI's will differ on what they think is an acceptable interval between blood tests. I personally would prefer when a dose is being established to have blood tests at least fortnightly and certainly no more than 4 weeks apart. Once established some GI's will eventually pan tests out to 6 monthly but my own personal opinion is that I wouldn't want any over three monthly. As you have obviously seen my preference is every two months and all these are done via the GP.

Dusty. xxx
06-13-2012, 05:41 AM   #47
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Sarah hates the blood tests, so she quite happy to wait as long possible. Are side effects of aza rare? What are dr looking for when they do the bloodtests?

Sorry all the questions. Our gi said the most troubling side effect for most prople is the risk of sun burn.
06-13-2012, 06:13 AM   #48
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
The most serious side effects are rare. Have you seen this article?...

http://www.ccfa.org/webcasts/Risk%20...Transcript.pdf

When you have blood tests done ensure they do a FBC and LFT's. The LFT's are looking to see that the liver is not being damaged by the drug and the Full Blood Count is looking to see, particularly via the white cells, that you aren't too immunosuppressed.

Dusty. xxx
06-13-2012, 07:55 AM   #49
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
Wonderful to hear of Sarah's update! And she is such a pretty girl! Thanks for posting!

I hope you can sort out the blood tests. Perhaps as Dusty does, you can have them done through the GP.
__________________
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
06-13-2012, 08:05 AM   #50
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
What awesome news! I literally got chills. When will she be totally off Prednisone? Has he OK's her to return to her full training schedule?

Sorry I can't be of any assistance re: blood tests but I know I would want them more frequently...just my paranoid personality.
06-13-2012, 05:56 PM   #51
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Dusty, I think I have to make Sarah concern enough about the risks of aza to make her least understand the need for extra testing but not to the point of paranoid? (spelling). Sarah will be 17 in August, she needs some responsibility for her own health.

Option 1 take Sarah to GP to discuss risks and further tests.

Option 2, go to GP myself (without Sarah) and discuss risks and my concerns. This way maybe I findout whether he is in favour of further testing before taking Sarah.

Crohnsinct, Sarah can swim as much as she likes. She is planning to swim 6 morning sessions, she doesn't want to go back to swimming afternoons. The water is too cold, and she like having the time after school to do things. She has a lot of homework, and is doing two folio subjects, and one subject a year above. In her words she does want her life to be all about swimming.

One last question, for everyone opinion. How long should I wait for she period to come back before being concerned? Note she has only every had 4 or 5 in total but none 14 months. Maybe I need to bring this up with the GP.

Any advice appreciated.
06-13-2012, 06:21 PM   #52
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
I would also let your Gi know.
I know the Ibd clinic where DS is seen has a question about periods on the form seems the Gi tracks that as well not sure what it says specifically since 8 year old males don't have that issue.
06-13-2012, 09:35 PM   #53
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
MLP: ha but believe it or not my 8 year old daughter did! 8! They call it precocius puberty. I have one that wont mature and one that is too early...but that is another forum...

Catherine: I would also ask GP...did she just get to the goal weight they set out for her? Even with the extra weight, some athletes still don't get it that often. ugh...just one more thing to wonder about...does it ever end?
06-13-2012, 11:16 PM   #54
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Hey Catherine,

I understand your concerns about what to say about the blood tests. Both of my kids do know the rare and more side effects but I have not dwelt on them. Sarah takes care of her own health now but when Matt grumbles about the tests I just remind him that we have to check that the tablest aren't being too effecient and suppressing his immune system too much. I don't go into the other stuff, I think simpler is better at this point.

As for the periods, I am not surprised that she hasn't had any. When the body is under stress, as your Sarah's has been, the body will try to conserve itself and periods are one of the things that will shut down. The same as growth and deveopment are affected in younger children. Once in remission as she is or at least appears to be approaching they will return but it may take some months. Certainly something to discuss with your GP/GI.

My Sarah was diagnosed at 14 and her growth and development were delayed. She did not even look like going through puberty. Surgery put her straight into remission but she was in very poor physical condition and it took her at least 6-8 months of being in remission before everything took off with a vengeance.

Dusty. xxx
06-17-2012, 04:33 AM   #55
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Still trying to work out what to do about the blood tests, will talk to my gp when l get my test results later in the week.

Just back from a weekend away with girls, day 1 spent get photos are Sarah assignment of native birds and animals.

Day 2 swim meeting, Sarah requalified for her squad by going under 12 minutes for the 800 free, she had already the 400IM from last week.
06-17-2012, 02:25 PM   #56
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
That girl is on fire!

Good for her and good for you for helping her with her project, calling a swim meeting a vacation and for being an all around great mom!
06-17-2012, 06:03 PM   #57
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Sarah had finished pred taper as of today.
06-18-2012, 03:07 AM   #58
izzi'smom
Senior Member
 
izzi'smom's Avatar
 
Join Date: May 2011
Location: New York

My Support Groups:
so glad to hear she is feeling well...hoping it continues now that she is off of the pred (and woohoo!!! finishing a pred taper was always a relief for us!!)
__________________
Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
06-21-2012, 06:26 PM   #59
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Sarah has had her first post pred stomach ache. Thankfully it has passed quickly.

We now think she may have a problem with fry food but only if a battered or crumbed. First step in her realising that diet plays a part in stomach issues.

Now question. Do your children have flu shots?

Last edited by Catherine; 06-21-2012 at 06:28 PM. Reason: grammer
06-21-2012, 06:45 PM   #60
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
Yes, Stephen had his flu shot. Cleared it with his GI who encouraged it so as to minimize Stephen's chances of catching the flu.
Reply

Thread Tools


All times are GMT -5. The time now is 07:14 AM.
Copyright 2006-2017 Crohnsforum.com