Amy not good again - all advice welcome

[kathymum]

Hi all , just need some advice - amy is now unwell again her crp has doubled over last weeks with infection from 39 to 77
She was great on hoilday but we all had an awful shock as mother( amys granny ) had a massive stroke and we had to come home early mum died on the 31st august in hospital . we are all hearbroken( she saw her every day ) but amy is taking it very maturely - since arriving at hosiptal to see mum her bouts of diaharrha increased appetite is poor stomache pains ....
we saw her Gi nurse yesterday and she is talking about putting her on steriods prednisolone full time - iam so so scared of the sideeffects and worry that her self esteem will be effected if she looks different .
do you think crohns could have activated because of the death of my mum and stress ?? worried that she she thinks she will die too
Dont know what i can do thinking reflexolgy for her modulen - just want her well again ( feel my life is just spiralling out of control )
love to you all
thanks in advance
kathy:

 

[Tesscorm]

I'm very sorry to hear about your mother's passing. Certainly a difficult and stressful time for your entire family. Stress can have an impact on Crohn's symptoms. It certainly possible that this is having an impact on Amy's symptoms.

Sorry, I don't recall, what maintenance treatment is she currently on? You mention Modulen, is this what she used in the past to achieve remission? Would she consider doing the exclusive EN again? Or, perhaps it can be used as a supplement treatment (Crohnsinct's daughter had success when she added EN to her remicade treatments)?

Reflexology can't hurt, certainly anything that can help her reduce her stress and help in dealing with her loss can only help.

Take care of yourself as well - this is also a very difficult time for you. :ghug:

 

[Sascot]

Sorry to hear about your mom and now the added worry of Amy's health. I hope she picks up soon without the need for too much intervention. If she could do the EN it would be fab, but if she's anything like my son - I don't think he could manage another EN exclusive period! Sending warm thoughts!

 

[crohnsinct]

I am so sorry to hear about your mom. My daughter's are extremely close to my parents and I could well imagine that a loss like that would definitely send O into a flare. EN sounds like a good idea to me as well as maybe talking to someone to help her process the loss.

Prayers for both of you for emotional and physical healing.

 

[my little penguin]

I am confused by the pred full t

 

[my little penguin]

I am confused by the pred full tIme?
I could see a 6 week course of pred but not full time. Also she may need a maintance med.
Is she at least on an ASA?
We did EN for 9 weeks and DS still drinks it at half dose.

 

[Farmwife]

So sorry to hear that about your girl.
I hope the days will get better for you both.:hug:

 

[DustyKat]

Oh my goodness Kathy...:hug:...what a difficult and heartbreaking time for you all, my heart goes out to you.

I agree that having such a traumatic event happen in her life may well have triggered symptoms in your daughter. Her granny was obviously such an integral part of her life and she must be feeling it so acutely, bless her. I have no doubt she has handled it all very well, maturely...:hug:...but as we know, in being strong we sometimes carry an extra load and that can affect in ways we don't realise.

I would like to think she can go onto EEN and give it a good try, I would definitely raise this with the GI. It should help with the pains and it will address the nutritional issues. She is emotionally fragile at present and it may well give her something to focus on and a level of control plus avoid the side effects of the Pred.

Good luck hun, I hope you are able to sort something with the GI that best suits your daughter. Sending love and healing thoughts your way. :heart:

Dusty. xxx

 

[kathymum]

Hi ALL ,

Amys blood have improved consultant is going to wait two more weeks before starting her on pred .praying away to my mum ( she was a pharmacist) to heal and guide us - Amy has started to eat a little better she refuses modulen again after being on it exclusively for may and june
thinking of you all and thanking you so much for all your good wishes .My older boy 15 conor has had diaharreha over last week and has had bloods tests today just in case im sure it is just a stomache bug but yknow life is strange and not always makes sense . Dusty you are quite remarkable thanks for your support feel im always taking from this forumn wish i could give you all good solid advice but am still a learner - know that you are all in my thoughts and prayers and my mum will watch over us all
love kathy

 

[Sascot]

Glad to hear she is improving - don't blame her for not wanting to go back on the Modulen! Hope she continues to get better. Good luck with the blood tests for your son.

 

[kimmidwife]

Kathymum,
I am so sorry about your loss. My mother in law passed away in February and I know how rough it is to lose one you love. Stress definitly makes crohns worse. I am glad to hear your daughter showed some improvement. Has your doctor talked about a maintenance medication? Prednisone really should not be used as a long term solution. It is bad for the bones as well as all the other side effects it has. There is a lot of treatments talked about on this forum. I encourage you to go to the treatment section on the first page and read up on them that way when you go back to see the doctor again you can bring them up and see what the doctor says. In the old days prednisone was used for maintenance but nowadays most doctors try to avoid that. If your doctor does not recommend an alternative I would suggest you get second opinion. Does she see a pediatric GI?

 

[polly13]

So sorry to hear about your loss hope Amy is doing better. I take Lucy to a osteopath - TBH Im not sure it does any good, but the treatment is quite relaxing, she likes him and I feel like I am doing something more than just giving her her meds every day if that makes sense. Might be worth a try - if nothing else it might help her stress and anxiety at losing her grandmother. wish you the best

 

[kathymum]

Hi ALL,
you wont believe this !! I got a phone call today from infectious diseases to say that amy has Cryptosporidium ]in her poo samples !!! Apparently it can come from swimming pools while on hoilday The symptoms are the same as a flare up and more common in people with low immune. My other son conor seeems to have had this although he is now on the mend .I swear i feel that Im living a nightmare ! My Gp has assured me amy will be ok an that because she is eating again and improving day by day and that this was probably what it was all along .
I feel i need to give up my day job and set up my own lab/hospital in my front room
have any of you experienced this so far amy has had C diff and now this .
Feel i am so not in control of my life any more
Do children with crohn pick up all bowel virus much more easily ?
anyway thought i would keep you updated my luck must be going to change soon !!
love to you all
kathryn

 

[crohnsinct]

Well I am sorry to hear about the infection but super happy it isn't a flare and set back. Glad she will be better soon! I can't comment on bowel illnesses but I would love a home lab and joke that I am going to hire a Pediatric GI on retainer to be at my beckon call.

Oh and thanks for that new worry to add to my list of paranoia as O is a competitive swimmer and in strange pools all the time...not that when she had d over the summer I didn't wonder if she picked up something at the community pool we were at for the meet...at least now my paranois is supported by medical evidence!

 

[my little penguin]

Aaaaahhhhh! Swimmer here as well
Head in the sand.
I didn't just read that.

Hope she is feeling on the mend soon.

 

[DustyKat]

Hey Kathy,

Well certainly have had experience with Cryptosporidium, not the kids but Mr. Kat!

You surely can pick it up from contaminated swimming pools but for us, where we live, it is more likely to be picked up from other contaminated water sources...tanks and dams. Hubby picked his up from the dam at the power the station. He would wash his hands in the water before eating lunch! :eek2: Needless to say he soon stopped washing his hands there!

Having a chronic illness and/or being immunosuppressed can increase your chances of contracting it.

Dusty. xxx