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Trying To Stay Strong For My Son

Hi everyone, just wanted to give an update on my son.

My original story is titled Linda’s son. He is now 6 years old and currently in a bad flare. We are at the children’s hospital here in Orlando, FL waiting for the remicade medicine to arrive from the pharmacy. Why it takes so darn long to mix i have no idea!! since he is so young, they admit him to the hospital for each treatment, and we are here an average of 7 to 8 hrs. each time from start to finish. today they are backed up and we are pulling a 10hr. plus today! My son has lost 10 lbs in 2 and 1/2 weeks. he is so weak, tired, and in alot of pain! this will be his 4th remicade in fusion and is was moved up to 6 weeks since he is doing so bad. not sure if we will be able to go tonight. his labs came back and they were off the charts for high white blood cell count, liver function was not great, and, today we found out he has a sinus infection and could also have a bladder infecti on. How much more should my son endure before he gets some relief?

I am so tired and depressed myself but, have to stay strong so he can’t see his Momma breaking down. On a high note, we have been doing the SCD for 15 days now, and i’ve seen some improvement for him, but, obviously not enough. I’m trying to stay strong and keep the faith.

I appreciate anyone’s comments on here as this is such a great support group to turn to. thanks guys, Linda.




hospital, liver function, medicine, Remicade, white blood

7 Responses to Trying To Stay Strong For My Son

  1. Jessica September 24, 2010 at 6:14 am #

    You are one strong mom! Keep up the good work!
    I hope your son improves and can live a normal childhood!
    Poor kid! I can’t imagine dealing with this horrible disease at such a young age! But you guys are troopers!
    I’ll keep you and your family in my prayers!
    Good luck!

  2. Linda September 24, 2010 at 6:39 am #

    Hi Jessica, thanks so much! we will take all the support we can get. he may have to stay in the hospital another night because the inflamation is so bad and his electrolytes are completly out of wack! he’s resting and, we are sticking to the SCD in the hospital and it is making a difference! he hasn’t even had a BW today yet. he had diarhea 2x’s yesterday, but no blood. last time we were in the hospital in june for 4 days, he was going constantly, (diarhea with blood) because at that time I didn’t know about SCD. he has missed 2 weeks of Kindergarten already. I am hoping he is well enough to start back on monday. I love this site and thanks for the encouragement. Linda.

  3. Ciaran September 24, 2010 at 6:43 am #

    Hi Linds, just wanted to send on my support from me and my family In Ireland. As a parent of a six year old boy as well, I am amazed at your tenacity and strength that you show for your son. I am also in awe of your son and how he is dealing with UC, he is a proper hero!!!

    If there is any small thing that we can do through this site please let us know, you are in our thoughts!

    Ciaran

    • Linda September 24, 2010 at 6:55 am #

      Hi Ciaran! I’m here in Orlando, FL. It’s so nice to here from someone all the way from Ireland. I’ve always wanted to visit there. You probably hear that alot.lol. It’s just so beautiful there, at least from what I’ve seen from photos, movies, etc. I’m sure you can relate to this, when your child is sick and in need of help, there is nothing you won’t do! I admit, the diet has been a little challenging, especially for my son…no more sugary cereals, mac-n-cheese, candy, etc. I try to bargain with him with other non-food treats like toys as much as I can to keep him positive and not think of the foods that got him here in the first place. Sometimes it works. we are on day 16 of the SCD. My husband and I are also doing the diet to support our son and to better our own health. My 6 year old is definitely strong, and I am so proud of him! I hope to here from you again soon..:-)

  4. Minoti October 5, 2010 at 10:44 pm #

    Kudos to you Linda. I just found this site and forum. I have a 4yr old with whom we are trying some dietary changes and will work our way upto SCD if needed. Goodluck with your son and lots of hugs for him because I know how hard it is to have a sick child.

  5. nayeli June 16, 2011 at 9:56 am #

    Hi Linda,

    My daughter is 6 and going through a similar situation at the moment. We started full SCD Intro about a week and a half ago, but had to stop because she is just too underweight and malnourished. Her doctor wants to put her on remicade and so I suggested an elemental diet instead. Long story short, he called yesterday and said he had to meet with us regarding our action plan. I’m afraid he’s going to have us put her on remicade or steroids–needless to say, we’re freaing out! She currently weighs 35 lbs which is what she weighed at 3 y/o. This is such a nightmare! How is your son doing now? Has SCD helped him?

    Nayeli

    • Linda June 16, 2011 at 2:18 pm #

      Hi Nayeli, I feel for you and your daughter. it was not long ago that my son was in the exact same spot as your daughter. actually, he had a colonscopy today! his 2nd in two years. the good news is, his colon is 90% healed from last year, and we owe alot of that to the SCD diet. i do believe the prednisone made a big difference too, even though it has the side effects. he is on a very low dose of pred right now, but it has been a long road to taper him off! i can tell you, if you are desperate to get your daughter’s current situation back in order and get her out of pain quick, the prednisone saved my son from surgery, as well as the SCD diet. ultimately, the decision will be up to you and your daughter’s doctor what to do. i completely understand your fear of both the steroids and remicade. just know, if you have to start them, it will get her feeling much better, but, i hope her daughter’s doctor will be very cautious with the tapering of pred. my son’s last GI wanted to taper too fast and he flared again every time. i wish you both the best. keep us updated.

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