Thoroughly depressed!

[Sascot]

Well unfortunately the day has come when I have to start with medications. I had hoped that we would have had longer without any
The paediatrician was very nice today and took at least half an hour talking it through with me. Andrew will be put on Aza tomorrow and it's breaking my heart.
It was very sweet though - the paed told me he truly believes they will find a cure for Crohns and that we are just doing the best we can with the knowledge we have to get the kids through to that day.

 

[Twiggy930]

So sorry to hear this! I know all too well how devastating it feels to start the meds. When I came home with our first lot of prednisone I called my sister, who lives in another hemisphere, bawling my eyes out. :ywow: If it is any consolation my son has had NO side effects from the azathioprine. I have also recently heard of someone who has been in remission on azathioprine for the last 18 years!!!

I love the idea of this just getting them through until a cure is found. I'm going to cling to that thought.

Hang in there and I hope that the azathioprine does the trick. :ghug:

 

[my little penguin]

:hug: DS has been on 6-mp similar to aza since nov. NO real issues other than elevated liver enzymes which the GI takes care of right away.

Hope "it" is the drug for your LO.

 

[DustyKat]

Oh Sascot, I too know how difficult and devastating this can be...:hug:...I don't know that I will ever get over the fact that my children have taken more medication in their short lives than have in my entire life. There is an upside though, my kids have gone from being so very, very ill to living life to the full! They too have had no issues with Aza and I hope it stays that way for a very loooooooooooooong time.

Good luck and keep us posted!

Dusty. xxx

 

[Curtis123]

My prayers are with you and your family.

 

[izzi'smom]

I am so sorry, Sascot. (((HUGS))) Hoping the meds bring Andrew relief. SO glad to hear your ped was wonderful!

 

[imaboveitall]

I can give a witness...:mad2: fear of drugs...my constant companion. :hallo3:
Like a nice black shadow.

I guess you aren't going to try naltrexone? I'm having second thoughts about it myself. Doesn't make sense that if it was so great, more docs wouldn't be trying it.

Right there with you, sister. HUGS, love and much understanding :heart:

 

[Tesscorm]

Sascot, just lots of hugs and support! I so dread facing the 'meds' day. But, as has been said, QOL is the most important thing... we have to give our kids every opportunity to live life to its fullest! It's what we do as parents, right? :Karl:

Thanks so much for sharing your GIs comment that these are all temporary measures until the cure is found!

Sending lots of wishes that all goes well today! :ghug:

 

[Mom2oneboy]

I'm sorry Sascot and I'm right there with you on the fear of the drugs we are faced with putting our kids on. Looks like we will be starting Remicade soon and it scares me too. I'm trying to focus on the success stories of the kids who have or are currently taking it. It's a leap of faith that we must take in order for our kids to get their lives back. You are not alone! ((((hugs))))

 

[Tesscorm]

Sorry Sascot... don't want to detour your thread... just a quick comment to Julie's... :blush:

I'm having second thoughts about it myself. Doesn't make sense that if it was so great, more docs wouldn't be trying it.

Julie, re the LDN... at Stephen's last f/u, his usual GI was called away and we had to meet with a different one. I took the opportunity to ask him what his opinion was of LDN... said he'd 'heard' of it but had no experience with it but said, if we could wait, he would quickly go look up information and trials on the drug (What a nice guy! Wish this was Stephen's new GI!). When he returned, his comments were the same as others... not enough trials, etc. However, he made the point that I was asking the opinion of GIs who worked with CHILDREN. He said he thought most Ped GIs are going to be a more conservative bunch and, unless absolutely necessary, will be less willing to try an experimental drug on their patients. He said I might get a different opinion and more openness to LDN with Stephen's new GI as he will be an adult GI.

Thought it was an interesting perspective... hadn't thought of it that way when I asked Stephen's usual GI or when I've read the posts from the other parents sharing their Ped GI's hesitation in prescribing LDN.

Anyway, just a thought...

 

[imaboveitall]

Thanks Tess, you are such a thoughtful poster.

Knowing The Saint has used it in the ped population without success and is NOT excited about using it on V though is willing to, is leading me away. He is so unconventional and open to anything that may work, as proven by how he handles V's case, that I feel like if HE doubts its benefit, it likely isn't so great. Not to say I won't TRY it, but I have little faith.

 

[Kat]

Sascot- I know exactly how you feel! We were just about devastated after walking out of my daughter's GI doc's office with a stack of prescriptions and the news that she was diagnosed with Crohn's. We thought our world had fallen apart. I look back now and realize how sickly she looked.... I look at her now and I am amazed. There is truly nothing that can stop her. Her Pentasa and Remicade keep her in remission... we are truly blessed! Good luck with Andrew - hopefully soon he to will be unstoppable!

 

[Tesscorm]

Julie - I share your feelings... if/when Stephen tries LDN, I want it to work sooooo much! :worthy: BUT am really trying to temper my optimism so that I can be objective if it isn't working.utahere:

Like everyone else here... I just hate that I have to deal with this at all !

 

[Sascot]

Thanks everyone! Well the packet of pills is now sitting in my kitchen with a lovely sticker on it saying "CYTOTOXIC - careful when handling"!!!!
Gee thanks - can I please give my son this lovely drug that they don't even want me to touch! :lol:
I love these smiley faces :ycool:. Keeps me amused.
Decided to leave the med till Monday so that the hospital staff that I know are on hand if he reacts in any way. Don't like anything going wrong at the weekend when it's staff that don't know the full story.
Did ask about LDN - the GI consultant wasn't impressed. Said he had heard of a few people trying it in Glasgow but hadn't had good results.

 

[Tesscorm]

Good idea about waiting till Monday! Now put the packet away until then! Try not to worry too much over the weekend. :ghug:

 

[S mom]

Best of luck with the new treatment plan, sascot! I laughed to myself when I read your "cytotoxic" comment. I remember watching the hospital and home care nurses gown and glove... putting on their "hazard material suits" to inject my son with methotrexate when he first started and thinking to myself "what am I doing to my kid!?":hallo3:
But... this "hazardous material" appears to be making the difference now - keeping the disease in check - go figure!

 

[izzi'smom]

^^So true...many pharmacies won't compound Tacro because they need a - pressure hood...it is also toxic.
As long as they work for our little ones.... *hope*