[LovingSister]

My brother is sick again or should I say still. He is still sweating profusely, freezing and feeling awful. His UTI seems to be gone and he is still on antibiotics yet this other stuff is relentless. His case manager and all can't figure out what is going on, they believe something has been overlooked. She suggested I have him go back into the hospital. It has also been suggested that he may be just too sick to be cared for at home. In 21 days post rehab there are only 3 nights he didn't go to bed early from being "sick". I fear if he dehydrates again he may die

[Tetracyclone]

When a person is that sick you should not be medically responsible unless it is your brother's simple wish to die in your home.

[mcwriter]

Don't give up!

Certainly take her advice and get him back to the hospital. They will put him on IV fluids if he still refuses to drink. You can still help in that environment by helping the nurses. He needs someone around him who truly loves him to help him through the mental devastation that this further sickness and anxiety are adding to. It is possible that his will to fight has weakened as well and you can help him, but he needs to be convinced he has a reason. You are the one who knows him and who he can trust. Remember that a man has a certain way of viewing himself, and it will be hard to convince him of his value until his thinking can change and that is where you come in.

You are doing a wonderful job. It is truly heartbreaking to hear what you are going through. Just hang on, you CAN do this.

[mcwriter]

Continue to let us know what is happening with you both, please.

This post has been edited by mcwriter: 31 August 2010 - 04:01 PM

[qbounce]

Usually, when someone has AD to that extent, it could also be that he has impacted bowels. I mean, who knows . . . he could also have bladder or kidney stones. No matter what the cause is, it's really out of your hands, and it always was.

Someone at the hospital isn't doing their job in testing everything possible before coming to the desired conclusion.

[LovingSister]

qbounce, on 31 August 2010 - 04:07 PM, said:

Usually, when someone has AD to that extent, it could also be that he has impacted bowels. I mean, who knows . . . he could also have bladder or kidney stones. No matter what the cause is, it's really out of your hands, and it always was.

Someone at the hospital isn't doing their job in testing everything possible before coming to the desired conclusion.

No AD here his BP never rises and is always sort of low. Although he has all the other symptoms of AD his BP is low

[tessa]

Hello loving sister,

this is just an odd thought I had: Do you know of any allergies that your brother might have? He might have an allergic reaction to something inside the house?

I whish you both all the best and hope that your brother will get better soon!!

ALl the bestxx

[rubyv86]

dont give up, ur bro is going through some though times, and dont feel guilty it is not ur fault. take him to the hospital if it is necessary, but dont worry urself to death. i know this is a hard time u r going through but eventually one day it will all b better. give him something too look forward to something that makes him happy. my thoughts r with u girl and i will have your bro and family in my prayers, lots of lov

[qbounce]

LovingSister, on 31 August 2010 - 04:40 PM, said:

qbounce, on 31 August 2010 - 04:07 PM, said:

Usually, when someone has AD to that extent, it could also be that he has impacted bowels. I mean, who knows . . . he could also have bladder or kidney stones. No matter what the cause is, it's really out of your hands, and it always was.

Someone at the hospital isn't doing their job in testing everything possible before coming to the desired conclusion.

No AD here his BP never rises and is always sort of low. Although he has all the other symptoms of AD his BP is low

AD symptoms aren't always a cut and dry rise (or drop) in BP, severe headaches, sweating, and spasms. Often times it's one or two of these symptoms at best. In time you learn how to listen to your body and the little feelings it tells you in knowing when your bladder's full (I get a small chill up my neck), or you need to turn in bed (my leg starts to spasm). I realize these are very little things, and don't exactly have any bearing on what your going through at the moment. I'm just trying to give you a little more insight regarding the different signs our bodies make early on to ward off any small problems before they become larger ones.

Again, as for what you're brother is going through it's anyone's guess. I sincerely hope that this time they take the appropriate steps to test everything first before settling on what they BELIEVE it to be.

[ct1974rlw]

First you are doing an absolute WONDERFUL job.....take a moment to breathe and relax. *I* understand how hard that can be sometimes, but if you don't, especially, when it seems the world is coming apart, you are going to over stress yourelf so much you won't be any help to anyone. Right now you are so needed, important and you are the key to helping find the solution to your brother's issue. You can do this. You are smart, kind, and a fantastic sister.

Lets go back to the basics.....No SCI is the same nor does it effect everyone the same way. It is going to take you and your brother a while to learn his new body. I was a caregiver to a T-8&9 SCI for seven years and just when I thought I knew his body-it would throw me a curve ball and onto a new loop.

Despite his BP being low, I still will suspect possibly AD. Make sure his clothing is loosened and nothing is restricting him. Also, feel his legs, his toes, are they cold to the touch? Trying doing some very gentle massages to get his circulation going. While you are doing this, visibly inspect his skin, is there any red spots or developing sores? Cuts, abbrasions?

If he isn't drinking enough, try a couple of favorite flavors, or different type of drinks (e.g. milkshakes, etc). There is a lot of variety out there, suprise him with a few next time you are shopping.

Be creative about his drinking-try making his "drinking time" quality time to spend between you two. This is amazing on how much you might not realize you are doing something (like drinking) when you are spending quality time together. I would also take this time to talk about how you feel with your brother. Don't forget, he can relate in more ways to your feelings than you might realize, it's important to him to know he is not alone in this and it's important for you to know you are not alone in this.

His blood pressure you said is low. Well, how low? What about his temp? Is it normal (I suspect it probably is)?

Sometimes, there is no common cause of night sweats. We went through this every night for the first year and half and never found a cause. Many hospital visits, stays and tests revealed no reason. Finally they went away with no reason why. Certainly bring him back to the hospital if it is an issue that needs to be addressed immediately. However, why not schedule a appointment with his doctor for specifically your concerns with his current symptoms? This might be a lot less stressful for you and your brother and it will be HIS doctor, whom he knows....

I'm keeping you both in my thoughts and prayers...Hugs

[LovingSister]

They admitted him to the hospital after an argument with the doctor who wanted to send him right home. The doctor shook my hand and thanked me for the argument and said he understands he is a Yankee too. He said Ron was going through drug withdrawal, all the drugs in the hospital and hardly any at home. I said I had thought the same thing until I gave him pain pills during many attacks and it never made a difference, he just gets worse. He is being tested for gall bladder and kidney stones/etc. The urine culture they took during his stay in the hosp last week never grew anything?? Even though his urine was almost all blood?? On my way to the hosp to see what is going on. Thanks for the input all of you, your ideas are useful as no one (professional) seems to really know what is going on.

[LovingSister]

AD symptoms aren't always a cut and dry rise (or drop) in BP, severe headaches, sweating, and spasms. Often times it's one or two of these symptoms at best. In time you learn how to listen to your body and the little feelings it tells you in knowing when your bladder's full (I get a small chill up my neck), or you need to turn in bed (my leg starts to spasm). I realize these are very little things, and don't exactly have any bearing on what your going through at the moment. I'm just trying to give you a little more insight regarding the different signs our bodies make early on to ward off any small problems before they become larger ones.


Okay I think we are onto something finally. They have decided it is a form of dysreflexia that is a bit different as there is not the usual causes involved and thankfully his BP isn't raised. It is his nervous system trying hard to adjust to the abrupt changes brought about by the injury. His nervous system goes into a hyper mode and sort of gets stuck there causing extreme sweating, coldness, and increased sensitivity to pain. They said eventually his body will calm down as it gets used to a different way of functioning. This is the best way I can describe it as it was explained to me, They are upping his Neurontin and pain meds and adding Clonidine to help calm down these symptoms.

[mellowgator]

dear loving sister,

you are lucky that the doctor looked beyond his blood pressure. so many people get ad and when all the symptons aren't present won't look harder. that's really good and hopeful. i hope you get this all squared out.

best wishes,

mellowgator

[jenny407]

LovingSister, I'm glad you seem to have found some answer. No new ideas - just to let you know I'm thinking of you and wishing you all the best. It is a tough time indeed - but you seem to be on the right way.

[my-sister]

hang in there! i'm thinking of you...

[KylezBaby]

Kyle and I pray for you and Ronnie all the time. Just remember when you're at rock bottom the only way out is up!

[hooplady]

Remember that SCI is basically a disconnection in the communication between the brain and the rest of the body. Right now his brain is still desperately trying to figure out what is going on with his various systems, and will throw all sorts of wrong signals out there trying to keep things in balance. Meanwhile his sentinel systems are doing their best to send information back to the brain, and getting no feedback. This can result in all kinds of symptoms that don't make any sense to the medical professionals.

It will get better. His body will do its best to adapt, and he will figure out ways to tell what the heck is actually going on so he can take appropriate action. Also, you are learning to be assertive about his care and to take all of the available information and make your own decisions, based on his unique injury. Just because he doesn't have the classic textbook signs of AD doesn't mean that's not the cause.

If it weren't so damned stressful and scary and happening to someone you love, it would be kind of interesting. Two or three years from now you may know what the heck I'm talking about. In the meantime, keep on keepin' on!

And don't forget to be kind to yourself. You're doing a great job in a completely impossible situation.