Fed up with tiredness

[Ands]

We are so fed up with tiredness right now in our house.... I found Joseph lying flat out on his bedroom floor yesterday afternoon with no energy for anything.

It broke my heart to hear him say he had done too much; he had had 11 hours sleep the previous night and all he had done was a quick walk round the block with the dog, played one game of bowling and had a hair cut!!!!

No wonder he's shattered when he comes home from a day at school!

Mood swings also terrible.... Is this just growing up or crohns? A part from tiredness he is Ok at the moment.

Xxxx

 

[Bubbly]

Snap....

Same here on the tiredness front, son is 14, constantly shattered, sleeps 11 hours, have found him flat on the floor in the lounge spaced out!!

My son isnt at school at the moment, due to ongoing crohns issues, had 2 loading doses on infliximab and is improving slowly, so fingers crossed he continues and is back to school after the easter holidays, gently to start with then full time....

Does have mood swings also, think this is due to the frustrations of crohns and stopping him from doing what he wants to do, he on the advice of the hospital has a little notebook to write down his frustrations, seems to help at times.

We have just been advised to start on iron tablets, 1 x every other day, he managed this dose last time, so fingers crossed it helps, his blood work is currently good apart from azathioprine doing to good a job so had to stop it for a while. We do also try and encourage an iron rich diet, but this time not working well enough.

Hope he picks up soon and can enjoy doing everything he wants to do x

 

[Dexky]

Also, try to keep hydration in mind. I know it sounds simple, but my son is helped tremendously by the occasional sports drink like Gatorade etc..

 

[Maree.]

Agree totally on the hydration but will throw in a caution that sports drinks can be very acidic, so if he has any acid reflux type issues it's good to avoid.

I wasn't aware of this when Liam first got sick & I gave him sports drinks when he played sport on hot days as he was clearly showing signs of dehydration. The sports drinks helped a lot with preventing the headaches and dizzyness he was having with exercise but I suspect they contributed to his reflux getting a lot worse.

My GERD cook book recommends the following home made electrolyte solution as an alternative to sports drink. Which seems to do the trick in terms of keeping Liam hydrated without having a negative impact on the reflux.
1 ltr water
8 tsp sugar
1 tsp salt
1/4 tsp baking soda
Then cordial to taste

 

[Ands]

Thanks for ideas. I like the idea of him writing his thoughts down, he does get so frustrated and I do try and keep on top of the fluid but hadn't thought of an energy type drink as a boost at times.

He seems to have settled into a three day bowel movement cycle, two days of nothing and then 'mass evacuation' as we call it oo: and the moods whilst waiting for this 'evacuation' are terrible but then afterwards he's like a different child.

He must be so uncomfortable and I know this but sometimes it is hard to keep cool myself and not to get cross with his behaviour.

I know there is no parents guide to follow in these circumstances but at least I know we're not alone!!!!

Xxxx

 

[my little penguin]

Hugs when DS is not up to things - BM are not moving fatigue and other symptoms set in.
I can say with remicade DS doesn't have this anymore and can play for very long periods of time again no issues. It was a regular problem for him when he was on 6-mp or Mtx or pentasa( worst being pentasa)
Are any of his other markers off???
I just hate to see a kid miss out if they don't have too kwim.

 

[Johnnysmom]

Johnny is on 6mp and has normal energy levels for a kid his age.

When his iron was low he was very low on energy, and the iron pills take a few months to really help with that. I would say it really took almost a year for him to really get his energy levels back once he was diagnosed. I am sure it was a combination of the Pred, low vitamins and iron, and just the process of his body healing. I would get some blood tests run and check iron, vitamins, and inflammation levels.

 

[Devynnsmom]

Devynn is tired a lot and the mood swings??? OMG! I keep wondering what is going on. She's 11 will be 12 in Aug, so I wonder if its hormones. But she's also not feeling the greatest (skin peeling, joint pains, mouth ulcers). Her next GI appt in in July and her ped is at the end of the month, but I'm going to try to get her in to one or the other sooner.. hopefully her ped can fit her in this week.

 

[Twiggy930]

My son took at least 10 months to get back to normal energy levels after he was diagnosed and started on azathioprine. I think it was just that his body needed time to heal and recover. It was pretty heartbreaking to watch him say no to things he loved doing when he just wasn't feeling up to it.

 

[izzi'smom]

It's so sad to see them exhausted!
Hydration was huge for us...I push water a lot as dehydration causes fatigue. We also had anemia issues but her disease caused most of the fatigue, plus the fact that she was in pain. (((HUGS)))! Hoping things improve soon!

 

[CarolinAlaska]

When Jae was first diagnosed she couldn't do a half mile hike without stopping to rest every 5 minutes. It was so sad to see. I haven't had her out much lately, but a week ago she was dancing at a church function for at least 30 minutes and seemed more like her old "Ever Ready Bunny" self! I hope your boy is feeling more himself soon!

 

[ChampsMom]

Alex takes a daily dose of over-the-counter B12 and prior to any sports activity (he played on 2 ice hockey teams this past season so was on the ice 4 - 5 days a week and is now into baseball season) he'd take an extra dose. It *really* helps him alot. He also makes a fruit smoothie to start his day and uses either the V8 Energy Fusion or XS Crangrape Energy Drink syrup as the liquid in the smoothie.

He also drinks ALOT of G2 instead of the regular Gatorade.

Hope the iron helps!

Not sure if any of this will help... When my son is tired, he's incredibly moody - so hopefully the more energy your son has, he'll feel better!

 

[Ands]

Joseph's last lot of bloods came back OK, they tested loads including Vit D and B12. Iron levels were low but as the haemoglobin amount was increasing they weren't too concerned.

We have an appt in a few weeks with our paed so will mention it to her, his skin is also itchy again so maybe all is not as it seems.

In a few weeks time it will be a year since his illness really kicked off and he finds it so frustrating that he is still not 100% right. He is a black and white type of boy, so all this grey area is very hard to deal with.

Xxx

 

[alex_chris]

Joseph's last lot of bloods came back OK, they tested loads including Vit D and B12. Iron levels were low but as the haemoglobin amount was increasing they weren't too concerned.
Xxx

One of the biggest misunderstood complications with Crohn's is iron deficiency, protein deficiency and the connection to haemoglobin deficiency. Unfortunately a lot of docs don't have the best expertise in this area - although it's one of the most common problems with Crohn's. I have had problems with iron deficiency and haemoglobin levels for 10 years now (diagnosed in 1999 at age 18). Due to my job taking me to several different countries and studying in different countries, I switched doctors several times. It was only my fourth GI who really explained the relationships between B-6 / B-12 / Vit D, iron, protein, haemoglobin etc. well to me and handed me three research papers on the subject after I asked.

If iron levels (actually, the thing to be concerned about is ferritin) are low, but haemoglobin isn't, that's a concern. Haemoglobin levels may fall more gradually and also fluctuate within measurings.

In any event, to really avoid tiredness, fatigue etc., tackling flare ups, iron deficiency, B-6/B-12, Vit D, protein etc. deficiencies early on is important. Plus, doing sport and generally being outdoors on a regular basis and for considerable amount of time (more oxygen and activity means the body generates more red blood cells, even at low iron levels).

As to iron supplements, be careful with what doctors prescribe. There are so many different ones and people react differently to them. Generally, the best ones are those you dissolve in water and drink - although it tastes bad.

 

[Ands]

Spoke to paed dr and back in tomorrow for someone to check the look of his skin and for complete bloods. As his skin is itchy she wants to double check all is ok with 6-MP, have had raised levels a little before and does get yellow hands from time to time as well so better to be safe than sorry.

She said that if his iron levels are all OK then we will look at ways of coping with the tiredness...... Not sure what this means.....!

Xx

 

[Mehita]

How quickly can iron levels fluctuate? Can it change day to day or does it take time for changes to show up in lab work?

 

[alex_chris]

How quickly can iron levels fluctuate? Can it change day to day or does it take time for changes to show up in lab work?

There is a short term iron indicator and a long-term iron indicator (ferritin). The ferritin level doesn't fluctuate on a day to day basis but can changes gradually (although within a few weeks there can be quite some sharp downturns).

The standard short-term iron level can fluctuated daily based on what you've just eaten or whether you just had an iron pill etc.

That is why the only real indicator for how you are doing on iron deficiency is ferritin... and as a proxy haemoglobin of course.

 

[Catherine]

low ferritin low levels show the body iron store are low.

But iron supplements can make the reading appear higher than it actually is.

Ferritin can also act is a marker of inflammation, when this happens the ferritin increase is not due to a increase in iron stores is it a false high

 

[CarolinAlaska]

Spoke to paed dr and back in tomorrow for someone to check the look of his skin and for complete bloods. As his skin is itchy she wants to double check all is ok with 6-MP, have had raised levels a little before and does get yellow hands from time to time as well so better to be safe than sorry.

She said that if his iron levels are all OK then we will look at ways of coping with the tiredness...... Not sure what this means.....!

Xx

Itching and yellow skin (jaundice) can be signs of liver inflammation...

 

[Ands]

Itching and yellow skin (jaundice) can be signs of liver inflammation...

Thanks. He likes to call it Simpsonitious but it is not always there!!!!

That's being checked today as well, has had increased ALT levels since starting 6-MP but these had been going down so they weren't too concerned. As he started 6-MP in December we are now in our first longer period between bloods so it will be interesting to see overall what is going on.

Thanks for support. Xx

 

[CarolinAlaska]

So, how did the bloodwork come out? Is all well?

 

[Farmwife]

I hope all turned out well.

 

[positivemum]

Its 2 years since my son's diagnosis and he still isn't 100%. Things have kept compounded this complicated condition. You need to get ferritin level as we find my son struggles with this. Also Vit D and B12 and folate. The Vit D can add to fatigue.

We have just had a big dose of Vit D and got to have bloods to see if helped. I am going to supplement at home and we have tried and are going to retry Spatone water for iron - you add it to juice

M son is about 60% school and it is mainly due to fatigue. all theses things take time which as parents we all feel we don't have. Keep asking docs and try supplements

 

[Sascot]

Sorry to have missed this as I was away. Andrew also suffers from tiredness - he doesnt' get moody, just really quiet. My mother-in-law is constantly asking him if he's alright :yrolleyes:. Been a bit lax with the iron syrup, so am trying to remember twice a day instead of one.
Hope the bloods and check up go ok and he is feeling a bit better.

 

[Ands]

Thanks everyone, still waiting for bloods because they had to be taken again on Friday. I will phone tomorrow (Monday).

He has actually had a couple of better days at the end of the week and this is how it goes, which is why we continue to plod on without really pestering the dr's.

My dh commented last night on what a good day he had had and I have to agree but then on the other hand, he had only had a 30 min walk with dog and an hour horse riding lesson. The rest of the time he was sat on the sofa and then asleep by 8pm.

Will ask about Vit D levels and Ferritin levels when I phone tomorrow. If all bloods OK then I guess we just have to accept that this condition has changed him and begin to learn to adapt and do things differently.

Although not nice for our children it is so nice for me to know that his symptoms are common and that I can talk about it in a place where everyone understands and I'm not left feeling I am wasting anyone's time.

Xx

 

[positivemum]

I am in the Uk too. make sure they have done the bloods for ferritin and VIt D and B12 etc as we weren't getting it done and didn't know. He has had iron infusions which helped but he still struggles with ferritin.

This is a fantastic forum and I have only just discovered it! I agree that you get to a stage where you realise life will need to adapt a bit but they should be able to function normally like anyone else so our doc is trying to get the balance of everything right so he can get to school etc

Hope he's ok

 

[my little penguin]

Please do not accept the fatigue.
We did not - even when things tested normal .
Once things were under control the fatigue DOES go away.
Having an exhausted child is not acceptable - remission means all symptoms -are gone.

 

[Ands]

Bloods showed 'mild anaemia' so being faxed through to our GI for their input. I've also emailed them direct stressing extent of tiredness.

My little penguin thank you for your last comment, I was beginning to think this was it and so was J. He has begun to say there is no point sleeping as he just wakes up tired, I will install in him that things will improve.

Back to school on Wednesday, that'll be interesting.....

Thanks again. Xx

 

[Bubbly]

Snap - sounds just like my son, you could have been writing about him!!

Good luck for Wednesday, hope all goes well x

 

[Johnnysmom]

Just FYI, anemia can take a few months to improve once they start iron supplements.

Hoping all goes well at school on Wednesday!!

 

[Catherine]

Do you know what the hemoglobin level is?

 

[Ands]

Not sure what level is Catherine, just waiting to hear back from our IBD nurse.

Bubbly, sorry your son is going through the same. It just isn't nice at all. J been in school full time since September, with odd days off here and there. Concentration is a big issue for him though and unable to do much when he does get home from school. We have a teacher/parent/student meeting this afternoon so it will be a good chance to see how they think he is getting on.

X

 

[Bubbly]

Good luck for you meeting, hope all goes well for you all.

J done well being in school so much with just the odd day off. C sadly attendance wise is approx; September - November was better 70%, then January to date approx 10%! Struggles with concentration and remembering something he was told 5 mins ago.

We are currently trying to arrange a meeting with all concerned at School, to help him through this stressful time.

I am sure things will work out for them both, the sooner the better. x

 

[Ands]

Well J lasted yesterday at school but I was called to collect at break time this morning. I feel bad as I virtually pushed him out the door this morning hoping school would carry him through the day. It was not the case and has spent the rest of the day on the sofa. Still waiting on call back from IBD nurses. We can't carry on like this. So I will keep pushing until they offer some advice as to what to do.

As an aside meeting at school went really well and J's form tutor says everyone thinks he's great and is acheiving well above average despite illness and time off. It appears he hides symptoms very well, until he walks through the door at home - I guess this is common.

Xx

 

[Devynnsmom]

As an aside meeting at school went really well and J's form tutor says everyone thinks he's great and is acheiving well above average despite illness and time off. It appears he hides symptoms very well, until he walks through the door at home - I guess this is common.

Xx

This describes Devynn to a T! Her teachers always tell me that she doesn't show how bad she is feeling in school. She's always smiling. When I tell them she is having ankle pain (example) they will say, *oh she was fine all day, you would never have known*. Then she limps all the way home and lies on the couch for the rest of the day.

 

[my little penguin]

We have that here as well.
He must be fine since he smiles... Ugh
There was a good poem somewhere I will try to find it.
It was great to share with the teachers

 

[Ands]

Well J came home from school mid morning on Thurs and not back in today. Mouth filling with ulcers again and tummy pain worse, am assuming this is a flare with the tiredness as well?

Spoke to our wonderful IBD nurse and his consultant will see him on Monday. They suggested packing an overnight bag 'just in-case' as it is a 4 hour round trip for us!

On a slightly separate issue can gallstones cause issues? When being diagnosed last year they noticed he had about 6 small ones, not sure if this has any relevance or not?????

Thanks.

A xxx

 

[DustyKat]

Gallstones can cause pain if they cause blockage of the bile duct and can affect certain liver enzyme results if there is chronic inflammation brewing away there.

I second what mlp said about the fatigue Ands. My kids both suffered with it terribly when they were flaring. I can well see that the body in a constant battle to keep inflammation at bay takes its toll on them, it is little wonder that growth is put on the back burner, not to mention possible nutritional deficiencies.
I hated coming home from work to find them asleep on the lounge, for some reason that was one of the things that really affected me the most. But since being in remission and monitored it is not any worse than any other teenager IYKWIM! :wink:

Good luck with the appointment on Monday, I hope it is a very productive one that provides you with solid answers and your lad some much needed relief. :ghug:

In my thoughts. :heart:

Dusty. xxx

 

[Ands]

Well saw GI consultant today and iron store levels are a little low, ALT level still raised and Vit D low. He will start on Vit D and multi vitamins tomorrow and they have repeated bloods to see what ALT is doing now (last bloods 1 1/2 weeks ago). Consultant think ALT levels high due to infection 6 weeks ago but ALT was a little raised before this so we will see. If ALT stays high we will probably stop 6-MP. He is also to take steroid mouthwash for ulcers.

Taking steps towards sorting him out which is good but J himself still pretty down. Would like to get him into school tomorrow but we will see.....

 

[jmckinley]

Being is tired is rough, especially because kids are supposed to be full of energy. I spend alot of time worrying that Ryan is missing out because he just stays tired and inactive. I noticed at his concert tonight, he just looks tired and pale...and he is supposed to be in remission. Being 15 makes it tough too because all of his friends can run circles around him. I wonder if some of the grumpiness comes from being frustrated as well as tired. I try to give him some slack, but I think he takes advantage of that sometimes.

I hope that the new supplements will help Joseph soon and you get his treatment plan straightened out!

 

[positivemum]

Well saw GI consultant today and iron store levels are a little low, ALT level still raised and Vit D low. He will start on Vit D and multi vitamins tomorrow and they have repeated bloods to see what ALT is doing now (last bloods 1 1/2 weeks ago). Consultant think ALT levels high due to infection 6 weeks ago but ALT was a little raised before this so we will see. If ALT stays high we will probably stop 6-MP. He is also to take steroid mouthwash for ulcers.

Taking steps towards sorting him out which is good but J himself still pretty down. Would like to get him into school tomorrow but we will see.....

Hi
it sounds like you are living my life! My son is 14, shattered and constantly battling to get into school. He is low on Vit D so he was given a mega dose and i now supplement at home. B12 was fine but ferritin keeps dropping so we are about to restart an iron supplement. Again people think he is ok at school but I know he just keeps going and then pays the price of a day or two off. On those days he is too tired/poorly to do any work so even a home tutor wouldn't help. School are great though and do try and help but he is one of 2 with crohns out 1800 so the school don't know that much about the condition. It is soul destroying. On the days he is at school it is like a weight has been lifted and the days he's not I feel terrible. he is coping much better but I am looking at the future picture of how are we going to do GCSEs if attendance keeps dropping. We are around 50%. Last year the end total was 39.9% so it is improving. Hope J better today and you do better at persuading him into the meds!!