A mixed bag...

[positivemum]

Hi All

So glad for this forum especially as I am tired of fighting this horrid condition with my son. iron levels dropped again so have had 2 iron infusions, is back on suppositories to help inflammation low done and to control bleeding - great for a 14 year old. Also find his white blood count has dropped too low and he is on AZA so bloods again this week to see if it has hit the normal range. Had to drop AZA from 100 to 50 mg. He started on 75mg 2 years ago and then up to 100 at Xmas and all gone wrong since then! Just praying count is ok this week as we don't want to start another new regime! Also has had mouth problems - tonsil stones and thick mucus in throat. ENT guy not much use - just said would take tonsils out if we want! What a rollercoaster...

The good news of today is that Holland and Barrett( health shop here in UK) have found us and iron supplement in small sized tablets and the same for Vit D so we are ecstatic - hope they are ok for him. Also son has decided that gluten may be a factor and also that he is sensitive to fluoride in toothpaste so we are trying to sort all that out. He wants to go back on his shake diet for four weeks and then introduce foods one at a time to see the effects and create a list of safe foods. What do you think? We have IBD appt next week where I may ask about this. Hope all your kids are hanging in there

 

[David]

Hi positivemum,

Wow, quite a rollercoaster you're on Out of curiosity, have they checked his thiopurine metabolites and/or did they do a TPMT test before starting him on the AZA in an effort to optimize his dosage?

 

[Sascot]

Sounds rather stressful at the moment. I think it sounds like a good idea to go back onto the liquid diet and then reintroduce foods, although I would definitely ask to see a nutritionist so they can give you a good plan to do it well. You may need to be insistant about it if he really wants to do it - I've found that the docs really don't put much faith in any change of diet.
I like Holland and Barrett as well, they also do quite a good liquid iron supplement if the tablets don't work too well. Staff are usually quite helpful - we have one in town which is handy.

 

[Catherine]

From what I seen here they recommend 6 weeks of no food for the most benefit, so if he saying 4 weeks maybe it would be better to do 6 weeks.

Paging tesscorm, she knows a lot about liquid diets,

 

[DustyKat]

I'm so sorry to hear that your son is having struggles mum...:ghug:

I will tag happy into this as she has extensive personal experience with Enteral Nutrition followed by an Elimination diet. This is her thread in Success Stories:

http://www.crohnsforum.com/showthread.php?t=31028

Good luck!

Dusty. xxx

 

[positivemum]

Thank you so much everyone - it's just nice to others out there in the same boat!

His TMPT tests were fine and always have been and AZA was ok at 75 mg - had the odd blip but bloods returned to normal within two weeks. This time that hasn't been the case so his med was reduced. Bloods Thurs so will know Fri if he is ok or not.

Sascot - he is able to swallow these tablets and we will no doubt know in a few days if they are causing problems. At least they don't taste foul like the liquids!!

Found out from the dentist today that the iron problems he has had would affect the tissues and sensitivity in his mouth - another lesson learnt!

 

[Tesscorm]

From everything I read, exclusive EN to try to induce remission is usually done for 6 weeks (or more sometimes).

If he'd like to try it, it can be used together with Aza (or any other med). It would certainly be best to speak with a dietitien to determine the required calories for your son. My son was 16 when he did it and was ingesting 3000 calories per day. He did it through NG tube and ingested his formula overnight; during the day, he was allowed clear fluids such as juice/fruit drinks (no fibre), freezies, clear pop (no coke/pepsi, etc.), gatorade, broth, jello, etc.

My son's formula was Tolerex but there are more palatable formulas that he can drink rather than use an NG tube. Generally, the more broken down the formula, the more easily absorbed it is but, unfortunately, the more unpalatable they become! :ymad: However, there are some who have used Boost or Ensure (which are not as broken down) or Peptamin (which is semi-elemental, so more easily absorbed).

My son reintroduced foods over a 2-3 week period but happy 's reintroduction was much more precise in reintroducing foods and took longer.

My son's reintro diet is below. Each stage was to last 4-5 days; longer if any issues arose.

1. 'White' foods - bread (any type), pasta, rice, potatos, plain cereal (ie rice krispies but NO milk), plain muffins, etc. He was allowed a very little bit of toppings like strained tomato sauce for pasta, butter or light cream cheese, etc.

2. proteins - any type but I stuck with chicken, eggs, fish

3. fruits/veggies - soft or cooked, no skins, seeds or membranes (skin around orange segments)

4. dairy - low fat

5. all else as tolerated

Hope that helps.

 

[positivemum]

Thanks Tesscorm for that info. We have an apt next week with IBD clinic and after a coincidental meeting with his dietician yesterday at the hospital when getting bloods, she is also going to attend. He is 14 15 in Nov and was diagnosed at 12 when he initially did 8 weeks of drinking 8 shakes a day along with Pentasa. I feel now that maybe his inflammation was so bad then that the shakes helped a little but not enough. Things are more under control and we wonder if another bash at it would help and rest his system and take the pressure off food as he has an appetitie but nothing appeals.

The good news is he is tolerating the iron and Vit D supplements and his bloods show his neutrophil is back in normal range and white blood count is now 3.3 heading up again.

We await his ferritin but it should be ok as it was at 50 2 weeks ago following infusions. We will check that at his appt next week. He has been doing measlasine suppositories and they do help but he has still had some intermittent bleeding. He wonders if he has gluten intolerance that has never been picked up.

School starts 4th Sept so I pray things move in the right direction for him. Last year 47.7% attendance and now we head into the 2 year GCSE programme so it is important he is in as much as possible

Thanks for your advice- so hard to keep positive on this rollercoaster

 

[Tesscorm]

I hope the appointment goes well and you are able to get some guidance on how best to move ahead!

Trying exclusive EN again will certainly not hurt and, hopefully, it's the boost he needs to push him into remission with aza!

After the six week exclusive period, supplemental EN was my son's only maintenance treatment for almost two years. While it didn't clear up all inflammation, it did control his crohns and kept him in clinical remission. Remicade was started recently as GI was concerned about the remaining ongoing inflammation. Certainly consider continuing with supplemental EN after the exclusive period, the extra nutrition certainly can't hurt. :ghug:

 

[DustyKat]

Sending you loads of luck and well wishes for the appointment next week! :goodluck:

Hoping you get solid answers and that things move in the right direction.

Dusty. :ghug:

 

[Dexky]

We've never done EN but I'd say your son's willingness is the biggest hurdle already cleared. Good luck convincing the docs!