• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

New Referral

Catherine

Catherine

Moderator
The teacher felt i was saying it was his fault k hadn't done her assignment. And she should take responsibility for actions.

It later come out the k feels the teachers expect her to be like her sisters. And she can't live up to their standards.

The girls have very similar interests in and out of school.
 
DustyKat

DustyKat

Super Moderator
Oh man, that sucks. He sounds somewhat defensive, not unusual if he has little insight into what is going with your daughter. :( But that is his problem to overcome, not yours. :ghug:

It is such a difficult situation to be in when teachers compare siblings, lord knows it is bad enough when they don’t! I understand the situation you are in Catherine. Although Sarah's teachers didn’t place the burden of expectation on her she placed it on herself and there is absolutely no doubt in my mind that Matt’s abilities ate away at her self esteem big time. It mattered little what we as parents said as to Sarah it was a case of…”Well of course you would say that you are my parent’s”. Having someone independent of family and teachers is the way to go Catherine and I hope with all my heart that your lass benefits immeasurably from it. :ghug:

Dusty. xxx
 
Catherine

Catherine

Moderator
Quick update.

Kerry seems better in herself.

Ferritin is now 37 ug/L (15-165)
Vitamin D is up to 78 (nmol/L)
Hemoglobin is now 13.1 g/dL (11.5-16.5)

We are going to stop supplementing iron. Continue with Vitamin D. And retest in January.
 
DustyKat

DustyKat

Super Moderator
Thanks for the update Catherine. :)

I hope all keeps heading in the right direction. Good luck!

Dusty. xxx
 
Catherine

Catherine

Moderator
Very pleased with the results.

Kerry is competing in her first Victorian Open Water Championships on Sunday. This is her first time at the distance and she is hoping to come in under 2 hours.
 
Last edited:
Catherine

Catherine

Moderator
Since stopping iron Kerry has a few dizzy spells. This could just be that she is a very active thin girl.

Kerry swum well in 5km, finishing in 1 hr 42 mins.

She is swimming at Point Leo tomorrow in the 1.2km.

Merry Christmas to you all.
 
Last edited:
DustyKat

DustyKat

Super Moderator
Good luck to Kerry! :goodluck:

Last thing on my mind today would be a 1.4km swim! The closest analogy I have to water is being like the proverbial beached whale! :lol:

Dusty. xxx
 
C

crohnsinct

Well-known member
Holy Cow! An hour and 42 minutes of straight swimming?! That is incredible! In open water no less! Unreal! :worthy:

O (swimmer and runner) has trouble with dizziness and fainting. Hydrate, Hydrate, Hydrate! Swimmers especially don't seem to "feel" thirsty but they really have to drink! But I am sure I am not telling you anything new.
 
Catherine

Catherine

Moderator
image.jpg

This is Kerry in yellow finishing at Point Leo.

The conditions were difficult with a strong breeze and in coming tide.
 
Last edited:
Catherine

Catherine

Moderator
We were back at the GP today.

About two weeks ago, skin on the end of one finger start to form little blister. This blister would then turn white with no liquid inside. Then skin started to peel. The skin is now peeling on 9 fingers. The remaining finger and one toe have a little blister. The new skin is not smooth. The unusual thing is the skin is NOT painfully and there is NO itching.

The gp suggested two week off swimming to see if the skin would improve. (K is not stopping swimming) He doesn't not know what this. He prescribed a steroid cream and gave a referral to a skin specialist.

We have had more blood tests due to dizziness.

K has completed a number of open water swims, the officials never allow her to remove the time device herself (it goes around her ankle), it appears they don't want to bend over.

K start 10 year on Friday.
 
Last edited:
upsetmom

upsetmom

Location
,
Catherine my daughter had this a about a year ago, it started on her hands and then her feet. She was prescribed steriod cream but it still took a awhile to clear up. All the skin peeled off before it started clearing up. We were told it could take up to a year but luckily it cleared up sooner. My daughters blisters seemed to spread by the hour. There's a picture here..http://www.crohnsforum.com/showthread.php?t=48832
 
Catherine

Catherine

Moderator
MLP, does swimming make it worse?

Have you used a steroid cream?

She has a couple of deep blisters between her big toes. We didn't think this was the same thing. They were caused by thongs.
 
my little penguin

my little penguin

Moderator
Staff member
He uses kenalog which is strong for his hands and toes
One week on
One week off
After a month it was gone for a while
We were told it comes back in summer
And should stop after puberty
 
my little penguin

my little penguin

Moderator
Staff member
Oh and the deep blisters on his toes had many layers and would later bleed below the surface
Once we started treating it all got better even with swimming
 
Catherine

Catherine

Moderator
All K blood test have come back normal but the levels have mostly dropped since stopping iron.

Ferritin is 23 ng/mL (20-200)
Hemoglobin is 12.8

Vitamin d 103 nmol/L (50-250). This is up due to supplements.

Vitamin B12 281 pmol/L (200-700). This had dropped from 369, 12 months ago.
 
Catherine

Catherine

Moderator
upsetmom said:
Catherine my daughter had this a about a year ago, it started on her hands and then her feet. She was prescribed steriod cream but it still took a awhile to clear up. All the skin peeled off before it started clearing up. We were told it could take up to a year but luckily it cleared up sooner. My daughters blisters seemed to spread by the hour. There's a picture here..http://www.crohnsforum.com/showthread.php?t=48832
Click to expand...
Your daughter's looks more severe. K is now on all fingers but so far has stayed above the top joint.
 
Catherine

Catherine

Moderator
Had a call from nurse school today, K come out a rash with minutes of sitting grass.

Made the first available appointment with the skin specialist which is 1st May.
 
Catherine

Catherine

Moderator
I need to check with k.
- mild suncream allergy
- mild bandaid allergy
- mild grass allergy only in spring.

This is the strongest reaction that she ever had. She was kneeling on the grass while putting up a tent. Prior to this time she only got pin size spots which didn't worsen once of the grass. The reaction has only previously occurred spring.

This time her legs were saw a while later. When she looked they were red from her knee to her socks. The school nurse confirmed it was a contact allergy with hives.
 
Last edited:
my little penguin

my little penguin

Moderator
Staff member
That would describe DS at age 2-3.
His is severe had to start shots at age 4 plus max out allergy meds
Each season they see can cause the allergies to get worse.
Puberty can also cause things to get worse.
As can reactions to other things at the same time ( full bucket theory)
So something that would have set her system off before will set it off now for a bit until her system overall calms down .
 
Catherine

Catherine

Moderator
K complained of severe stomach pain. Resulted a visit to the school nurse. The pain is the middle of stomach about 5 cm above the belly button.

She was quite disappointed her last blood tests come back normal. As she was sure it would show low iron and iron tablets would fix the dizziness. :yrolleyes:
 
Catherine

Catherine

Moderator
We had our appointment with the skin specialist today.

- fingers condition is inflammatory eczema, which fits with history family history of asthma, eczema and hay fever, and the grass allergy.

- "birthmark" well that not one, it is actually Phyriasis Versicolor, it doesn't look the pictures you see of net as it is "brown". Treating with Canesten

- now the hard decision, we going to treat to acne. We are using minocycline and Epiduo Gel. Although the acne is not severe, it is forming pustules, nodules, and cysts. Left untreated these will cause severe scarring. Some of the pustules are up to 1 cm in size. These sores take months to heal. She has already done two course 6 months course of previous drug. If this doesnot work she will need to consider Roaccutane (yes know the risks:voodoo::voodoo:)

She only 16, and already has moderate scarring.
 
Last edited:
C

crohnsinct

Well-known member
Poor girl! My oldest suffers with acne terribly. Sometimes better than others.

Funny, my acne girl also has the versicolor thing.

Good luck!
 
my little penguin

my little penguin

Moderator
Staff member
Hugs
Catherine
Would the pill help her cystic acne ?
I know it can help some to where there are no more break outs all.
It has its own risks as well
Never easy
 
Catherine

Catherine

Moderator
Thank everyone, I am hoping Epiduo Gel will work on it only after while.

All options will it considered before moving on to a higher level medication. Due to her swimming it would be best if she can avoid treatment in the summer months. So the appointment came at the right time of year.

She has just completed her blood declaration to give with school. Don't think her hemoglobin will higher enough to donate but it doesn't look like she will get that far as she look like failing the weight requirement.
 
Sascot

Sascot

I feel for her. My son had the same issue on his back, he used to go to school covered in plasters! He has some scarring from when it was really bad before we started using the Cetaphil cleansing wash. Does your dermatologist have any recommendations for the scarring?
 
Catherine

Catherine

Moderator
At the moment it very hard to tell what is active acne and what is scarring. Luckily most of her scarring is a problem with the colour of skin. She has lot of small red spots but the skin itself is smooth. Covers well with makeup, but make up causes the acne to spread.

If she hadn't already started using the minocycline, I think I would have just used the Epiduo Gel.
 
Catherine

Catherine

Moderator
The acne has cleared a lot.

She has had a couple more dizzy spells both after winter open water swims. She managed to scare the officials and other competitors.

The GP believes the dizziness is due to swimmer ear. There is some inflammation in the ear canal. Now have drops and ear plugs.

The gp ordered blood tests due to previous history of anaemia. Blood pressure normal at GP 120/70 but done earlier at the chemist it was 106/48.
 
Catherine

Catherine

Moderator
No anemia but in the GP wording we need to stop this before it becomes anemia.

Ferritin is 13, restarting iron supplements for 3 months. Then retest.
 
Catherine

Catherine

Moderator
We had blood tests done as the end last week. Don't know the actual number.

But GP has order more blood tests for "persistent low iron'.:ybatty:
 
Catherine

Catherine

Moderator
Hi everyone,

I am confused. K ferritin has increased to 29. Her hemoglobin is slightly up.

According to dr the response to iron supplements is not strong enough.

We are going to change iron supplement. The new supplement is at the maximum rate for weight.

I have requested a faecal calprotectin. Ferritin will be retested in 3 months. If response still not adequate will refer to GI. According to GP this not suggestive of IBD as per her research but GI is the next step.

Symptoms?
Dizziness
Tiredness (more tired with less activity)
Low iron
Low d (needs 1000mg per day to keep in range)
Hayfever
Cystic acne
Worsen grass allergy

Question why does she want to refer when get any to take my oldest anaemia seriously. We don't even have anaemia. Ferritin is in range. I just don't get.
 
Catherine

Catherine

Moderator
Kimmidwife

We are going to do the faecal calprotectin in the next couple of weeks and move forward from there.

She already has GI consultant and no further testing was done.
 
kimmidwife

kimmidwife

Catherine,Has she had a colonoscopy? Also has she seen a hematologist?
My daughter (#2) just saw a hematologist to be worked up for Von Willebrand's Disease. Another thing to worry about 😣
 
Catherine

Catherine

Moderator
No colonoscopy, GP will have to proof she has inadequate iron supplementation first.

She is currently follow her sister pattern but her sister didn't even have this much response to iron supplementation.
 
kimmidwife

kimmidwife

It is so frustrating. It kind of sounds like what we have going on with daughter number two. All her tests have come back negative so far but she has constant stomach aches and diarhea. She is having issues with her cycles so the ped Doctor sent us to see the hematologist. We are still waiting to get those results meanwhile she has to go back to the GI again and colonoscopy is the next step probably fecal calp and all blood work the GI did was normal. Makes your head just spin!!!!!
 
Catherine

Catherine

Moderator
K seems much better maybe iron supplement is finial my working.

At the beach awaiting for start of K 5km swim. They will hopefully complete the race before the heat of the day. It will be 30C when they start.
 
Catherine

Catherine

Moderator
We are in the middle of open water swimming season.

We had the 3 month blood draw done today.

K is general feeling well, the dizziness is back, currently only happening with swims over half hour in length. She is doing 4 long swims most weekend. eg last Sat 2.5 Km, followed by 1.2 km about 90 mins later, Sunday 4km (this was a really long swim so no other swim).

The dizziness could be due stress from the swimming but none of other kid have it. And it was better at the start of the season.

She also start a Tafe course last week as part of her Year 11 studies. School is back at start of February.
 
Tesscorm

Tesscorm

Moderator
Staff member
I hope the dizziness is nothing serious and resolves itself! :ghug: Could school be adding more stress now, compared to the start of the season?
 
C

crohnsinct

Well-known member
is she adequately hydrated? O gets dizzy when dehydrated. It us hard for swimmers. Especially open water when she is swimming for over an hour straight!
 
Catherine

Catherine

Moderator
The dizziness is due to Orthostatic hypotension, it occurs went going from the swimming position to standing/running. The treatment is water, food, salt. In K case it associated with low iron levels.

Her TAFE course is in design and she is loving it. Is currently do 6 hours of drawing and painting a day. She is leaving home at 7.30 am and is home after 6pm.
 
Catherine

Catherine

Moderator
K's ferritin levels are stable. We have issue with the taking of the supplements.

She has a referral to an adult Gi due low iron of unknown origin and family history of Crohn's.
 
Catherine

Catherine

Moderator
It been a bad week. Kerry had an accident at today open water swim. 5 X-rays later we know nothing is broken. There planning to do an MRI in the morning. She not pleased about her first overnight stay in hospital.

School starts on Monday and has nice bruise on her forehead.

It could have been worse.
 
Catherine

Catherine

Moderator
Got home the this morning after a night in the ER. MRI not necessary, we saw the Specialist this morning.

The X-ray were completely clear, abnormality was caused by the neck X-ray being takes slightly of centre. K is glad to be out of the neck brace and home with a pillow.

She taking nurofen for whiplash.

The nurse and doctors were wonderful but er can be scary place. Happy to be out of there.
 
Catherine

Catherine

Moderator
Quick update on this for future reference

Saw adult GI in late March, blood tests and faecal calprotecton were strongly negative.

Stopped acne medication, iron and d.

Week ago, thinking skin that bad need to restart acne medication.

Fast forward to this week.

Last Thursday, severe stomach pain dx with gasto, slight fever, no bowel symptoms

Tuesday, dx with heartburn, severe stomach middle to stomach just below the ribs.
Taking heartburn medication, dx doesn't seem right as heartburn doesn't usually get better when laying down.
 
Catherine

Catherine

Moderator
She has been off acne medication for 2 months. Actually wondering whether it's a reaction to stopping the medication.
 
kimmidwife

kimmidwife

Catherine,
Interesting since some doctors treat Crohn's with antibiotics and it really seems to work for some people. That is really interesting
 
You must log in or register to reply here.
Top