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04-11-2013, 07:33 AM   #1
Ands
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So mad

Sorry just need to rant....

Just got back from local hospital where they wanted to check Joseph over before taking bloods due to his itchy skin, tiredness etc. Dr we saw was so patronising suggesting it might just be a side effect to the 6-MP and he was on the right dose so all should be OK. Anyway we held it together as we knew the bloods were the important thing and really I wasn't interested in her opinion as she is not the Crohn's expert. J had his blood taken, not an easy one, she then sent us straight home no chance for him to catch his breath and he was so light headed.

Just got home and he's got a thumping headache and looks like he's been sat on for the last 1 1/2 hours (that's how long this process took) and then the phone goes. It is the hospital; there has been a 'problem' with his bloods and he needs to have them done again!

I haven't the heart to tell him yet. We won't be going back today that is for sure. I've made an appointment, with a time, for tomorrow but how I'll get him back is anyone's guess.

Sorry for rant. Xx
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.................................................. .............................
Son Joseph diagnosed July 2012 (aged 10)
Crohn's: oesophageal, ileal, oral and perianal disease
6 week exclusive modulen
8 weeks predisolone
2 weeks azathioprine - stopped after reaction
6-MP 50mg - stopped June 2014 (after 18 months)
Currently on:
Sennoside 18ml daily
Multi Vitamin
Omeprazole 10mg
Prochlorperazine 2 x 5mg
Predisolone as a mouth-wash (as and when needed)
04-11-2013, 08:14 AM   #2
Bubbly
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So sorry to hear you have both had a horrible morning, sounds awful and also not acceptable.

I hate people being patronising and not listening to concerns, that are not around the child all the time, similar in that son is shattered, been told bloods are good and he should be at school, has slightly low iron but not enough to keep him at home, need to be firmer with him etc, dont think they really understand at all!!

As for having bloods done again, what on earth went on with the first lot?? I would kick up a stink, not acceptable at all.

Good luck for tomorrow and feel free to rant away on here, we all do and its good for us i think to let off steam x
04-11-2013, 08:32 AM   #3
Devynnsmom
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I'm so sorry Poor Joseph.
Would bribery work? When Devynn (my 11 year old daughter) started this journey, just the mention of blood work would send her in to a frenzy. The first few times she had to be physically held down Then I started bribing her with something small. A treat, something from the dollar store etc. Now, 3 years later she doesn't bat an eye. Occasionally I will let her pick something from the dollar store, or stop and get a smoothie or something. I don't know if the bribery helped, but it gave her something to look forward to.
Devynn had 5 vials taken yesterday. One of the tests the doctor ordered has to be sent away and they only do pick ups until 11 am. So we have to go back next Mon or Wed. The lady (who was awesome btw) kept apologizing for not being able to take it all, and making her come back. Devynn said "Its ok, I'm used to it now. But I used to be a nightmare" lol
Good luck with Joseph. (((hugs)))
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Samantha, AKA Devynn's mom


Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
04-11-2013, 09:37 AM   #4
farmerswifey
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Awww I'm sorry this has happened! Blood tests are hard at anytime, let alone having to repeat them! I hope it's not too traumatic for him (or you) when you go back x

Can I ask you, has Joseph been getting alot of headaches because of the 6mp? My son has started getting headaches and I wonder is this a side affect....
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Mum to Mr C aged 11

Crohn's Disease
Diagnosed 21 Aug 2012
EEN 27 Aug 2012
6mp
Allipurinol

Remission 17 Mar 2014

Currently healthy, playing football, obsessed with Lego and Star Wars!

Knowledge is Power
04-11-2013, 09:44 AM   #5
Farmwife
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Sorry to hear about having to go back.
Grace (4yrs) hate labs too.
We bought the Buzzy-Bee and did it for the first time yesterday and it worked GREAT!

If your interested let me know. They have cooler ones for older kids.
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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
04-11-2013, 10:01 AM   #6
farmerswifey
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hey, we have those buzzy bees in Aust too!!!!! I have been using Emla cream before my son's blood tests, which numbs the area and makes blood test so much easier!
04-11-2013, 10:14 AM   #7
Farmwife
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famerswifey
Do use the Buzzy and the cream?
04-11-2013, 11:24 AM   #8
Ands
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Thanks everyone.

Bubbly: I get the impression the 'problem' with the blood was that it was spilt, it never even had time to get to the lab. We live less than 10 minutes away from hospital and the phone rang after I had been in for no more than 10 minutes!

Samantha: J has come such a long way with these tests and can generally tolerate them now, he is even doing a piece of homework on them; a three minute talk on best way to take bloods! It is quite funny and shows his strength of character to get up and talk about it!

Farmerswifey: He does get headaches from time to time, not sure if this is 6-MP or not, I think most probably all connected to tiredness.

Re Buzzy, Joseph always asks for cold spray. Not sure what it is called, goes on just before blood is taken and is freezing to the skin. He prefers this to the cream as no waiting time whilst the area numbs.

I have to say he has handled the news really well and happy to go back up to where we normally have bloods taken, the nurses do it there not the junior docs!!!!!

Least the sun has come out now as well, that makes a huge difference to us all. So glad this forum is here and you don't mind me going on.

Thank you everyone.
04-11-2013, 01:12 PM   #9
Devynnsmom
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Aww thats great!!
04-11-2013, 02:42 PM   #10
ChampsMom
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I realize this is a day late and a dollar short, but maybe you can use it in the future? Alex gets migraines and I use a pressure point massage on him to get rid of it. Even as I type this I realize it might not sound clear - ask for clarification if it doesn't make sense!

Here you go:

1) The test: Right hand first - between the index finger and thumb, pinch the "meaty" web portion (pinch it hard). Then do the same thing to the left hand (pinch the "meaty" web portion between the index finger and the thumb). BOTH will likely hurt, BUT one will hurt more than the other.

Which ever side hurts MORE is the side you want to massage.

2) Massage: (placing your thumb on top of the meaty portion (mentioned) above and your index finger's middle nuckle under the meaty portion (sort of like you are pinching it) massage that area. IT WILL HURT! But that is where the headache is located. Go hard, go soft, but keep going until the headache goes away. Use a little lotion to make the massaging easier to do.

Works on Moms (and Dads) who get a headache when stupid people at the hospital do not know how to hold onto a vial of blood too! (and for other stressful moments too!)

Hope everything work outs!
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Shell

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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04-13-2013, 09:46 PM   #11
CarolinAlaska
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I'm sorry that happened to Joseph, but glad that he took it well.

Shell, thanks for the tip about headaches, I'll have to try that out. I sometimes get headaches at the end of long full days... especially if I didn't get a good night's sleep or if I have to be in a noisy place...
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Carol
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.
04-14-2013, 01:46 PM   #12
Dexky
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But that is where the headache is located.
Say what?? I'm not doubting the info, I just think it sounds kinda twilight zonish! Where did you learn that??
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EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
04-14-2013, 05:03 PM   #13
Brian'sMom
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Just an fyi, but Brian's been getting blood drawn from back when he was 6 and says the freeze spray hurts more than the stick. (they only did that spray once and that was it) Might try it without and see what he thinks.

We did the bribes at first, (when I didn't know anything about crohns), I said, you get stuck...we go to the toy section. I soon realized I'd be broke on that deal! Lucky he was young and didn't remember!! Now the labs are nothing. (Especially compared to Humira sticks!)
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
04-14-2013, 05:15 PM   #14
AZMOM
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I'm with Kathy on this one. It's a kiss and an occasional trip for frozen yogurt. I couldn't afford to keep bribing!

Dex - That's an OLD headache remedy. :-)You should try it!

J.
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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
04-14-2013, 05:32 PM   #15
my little penguin
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Yep - same here no more bribes-
first loading dose ( 2 shots at once) of humira -yes but every shot after no.
blood, Iv CT etc.. nope.
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04-14-2013, 07:13 PM   #16
ChampsMom
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Say what?? I'm not doubting the info, I just think it sounds kinda twilight zonish! Where did you learn that??
Laughs!! I'm a freelance Sign Language Interpreter and it was during an assignment that the technique was taught (one of the many perks of my field is the opportunity to be present at activities that I would likely not be at if it were not an assignment).

If you have not tried it yet - try it! It's amazing!! You'll be surprised at how one hand hurts more than the other and how fast the headache can go away! I use it all the time (and share it as often)...

laughs... but it does sound twilightish...
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