G'son is now in ICU after 1st Humira injections

Nana,

I am glad to hear that your grandson is continuing to improve. I too think that that you should request (or more) that he remain in the hospital. He has been in for so long that his body is probably not ready to be off of fluids and other meds without observation to react to situations immediately. I work in the medical field and considering the GI's "mistakes" (along with the potential for a lwasuit from those mistakes), I would think that the medical staff would be more accommodating to your request to have him stay. Even if you have no interest in actually persuing a suit against the physician or hospital.

Thank you all, for the continuing support!

I truly believe his GI has made 3 major mistakes in her treatment of my g'son this hospital stay. Taking him off the steroids cold turkey, removing him from IV fluids, & letting his hgl count drop to 76 before giving blood. She admits the cold turkey steroids was a mistake on her part.... says she felt she was doing what was best for my g'son by removing the IV fluids.... & maintains my g'son was in no danger with a hgl count of 76. I'm not a doctor... she is young & just starting her practise, nobody is perfect, & it is unfortunate that she has to learn (trial & error) on my g'son. Although, I believe, my g'son has been put through some unnecessary pain & suffering because of her errors, thankfully, no permanent damage has been done. It's all behind us now.

I'm willing to move on, but I do want my g'son to remain in the hospital until his next Humira shot.... just to be on the safe side, as we live over an hour away from the nearest hospital. I am hoping she will take all these things into consideration before she releases him.

His mom is going in to see him later today. Hopefully the diuretics have helped. I've read some posts where some of you think steroid, even Humira may cause fluid retention, so I'm not sure now if the problem was his getting too much IV fluids, too fast. I'll find out more later today, I guess.

I feel like I have monopolized the forum for a long time... thank you for putting up with my worries. Hugs to all of you.

CURCUMIN 95%

I forgot to mention that my g'son's GI said that if we were considering putting my g'son on any supplements, she would be okay with "Curcumin 95%". I had never hear of it, googled it to get the info, & have just ordered it online.

Hi Nana how is things going today? Is there any change in your grandson,it looks like he will be home on Wednesday do you think he is ready to go home yet nana? He still has a long road a head of him yet but at least he is on the right path now how did he enjoy his homemade soup i know it always makes me feel better and the only thing i can get my husband to eat when he is sick.Best of luck to you nana and the whole family. Jenn

Hi Nana. My husband too had some water retention in his legs - the docs just said he really is getting a lot of fluids through IV, and also, mentioned that it was because he was in a hospital bed for so long - his heart was getting lazy. They said as much as possible, to keep his legs above the level of his heart and to walk around if at all possible. They just checked that he was having normal urine (color, quantity), to make sure it wasn't a problem with his kidney function, and did the normal urine tests to verify that.

Normally they don't give you immunosuppressants like humira when you have an infection (a fever). Oral vancomycin doesn't really fight upper respiratory infections - so him being on it, or off of it doesn't really matter as far as the respiratory infection goes. He's probably got some viral infection, but the cipro should hopefully keep him from developing a secondary bacterial infection. Hopefully he'll be free of this infection before his next infusion. Vancomycin is a very expensive drug, and is usually only prescribed when other antibiotics fail, or with really resistant infections like MRSA or C-diff - so she may have just taken him off of it because he'll well covered between the cipro and the flagyl, and vancomycin just isn't warranted.

Imuran is another immunosuppressant, like humira and prednisone. However, like humira it can have some side effects. Be sure that your doctor gives him the right dosing (she seems a little green) - I believe there is a test you can get that should say what will be the right dose for him. We didn't go this route with my husband - so I don't have the details of the tests, but perhaps someone else on this forum who has more experience with this can provide you that info.

I think there is a slightly increased risk of some serious side effects when you take more imuran/6-mp/methotrexate and humira. My husband's GI was willing to go this route, only if absolutely necessary (ie. my husband did not respond adequantly to the loading doses of remicade). Be sure to discuss the possible side effects with your GI, to make an informed decision. I don't want to scare you - there are plenty of folks who take both humira/remicade along with 6-mp or imuran and are completely fine.

With any luck at all, your grandson will get back these bumps in the road, and regain his good health soon. Hang in there, hopefully tomorrow will be a better day.

(((Hugs)))
PV

Nana,

If I understood you right, your grandson is dropping 10 mg of prednisone everyday? That does seem pretty quick. When I was on prednisone and doing a stepdown, I was dropping by 5 mg every three days or so.

When the body builds up antibodies, it is building the bodies method of fighting the "invader" (medication, infection, etc.). What that means is that it is possible for the body to withstand the medication and not allow it to function properly in the body. I use this scenario a lot when talking about infections with my athletes: An infection enters your body and starts a reaction of the immune system. The body begins to produce antibodies, or an immunity, to this infection. This allows your body to resist this infection in the future.

I hope this helps.

Hi PV & Shawn: Good news as far as the hgl count goes - yesterday was at 104, today 117! He is estatic!

In regards to the "decrease of steroids by 10mgs per day".... Yesterday he was on 50mgs, today he is on 40.... he wants to wait to see how much he gets tomorrow morn. Also, he's back on IV fluids.... ?

Thank you for explaining the "antibodies" thing... that makes more sense now.

PV: His treatment this entire hospital stay has been like a roller coaster ride... up 1 minute & down the next.. 1st with the steroids, then the IV fluids, then the pain meds, then waiting for blood ... & now the Imuran.

My g'son doesn't want to file any complaints because he is concerned there may be reprocussions come back to him while he is still in the hospital. His current GI is "on-call" every 3rd week-end at this hospital. He will undoubtedly be treated by her many times in his lifetime should he remain living in this region.

But, hey, his hemoglobin count is good news .... It's got to my my "homemade Chicken Soup!"

.......Nana..........
IMHO you asked al the right ppl here and the doc all the right questions

YOU do your Grandson proud my friend

God Bless you and yours
PLZ do keep us posted

** if this thread gets locked due to length I will start a new one okay( sometimes it happens but not always)
WE are all following his progress ..............

.....................LYN

I am glad that your grandson is well enough to be released. Please keep us updated.

Hi Nana,

 

Imuran is a drug you work up to -- you start at a low dose and increase it over a period of weeks/months until you find the therapuetic dose that is right for you.  It will take a while before he gets any relief.  Also, he needs a blood test to ensure his body has the enzymes required to take the drug.  A small number of people don't have the enzyme, and the drug can really get your liver and pancreas without it.

 

I still have concerns over this doctor.  She sounds like she is jumping around too much.  As others have said, decreasing the steriods so fast just proves she still doesn't understand them.  I am really concerned!  And for the Humira, I personally would consider not taking it for now.  Stay on the steriods and see if that gets the inflammation under control.  Then you can try the Humira again at a later date.  When you jump around so much with treatments, it is really hard to determine what is causing an effect.  Often you need to use a process of ellimination to be able to clearly determine whatis causing a problem.

 

Take care of yourself too please!

A short update on my g'son's progress.... He was scheduled to have his Humira shots today but had to meet with his GI 1st.. he still has a flemy cough so now has to wait till Mon to take his Humira. Still on antibiotics, Imuran & hydromorphone... now down to 30mg Prednisone, still has an open fissure recking havok with the pain... still frequent bloody diahrrea, BP is at 117/76 & is very tired.... almost fainted yesterday. At 6' tall, he is soooo skinny.... He's taking multivits, boost, probiotics. Sure hope things get better for him than this!

Wishing you all a quiet peaceful weekend.... Hugs... Nana