When Is An Er Visit Called For?

[swreeder70]

I started a thread some time ago in regards to my son and his diagnosis of Dysautonomia with POTS. We are about 4 weeks into his treatment and we have see no changes for the better. We have had some real bad days and were close to taking him to the ER. We haven't so far and not really sure what good it would do. The hospital that is treating him is over an hour away and our local hospital has no expertise in the disease.

However, we have had some really bad days with low BP, severe pains, vision problems and a whole host of other issues.

At what point does it make sense to visit the ER and what if any good outcomes can be expected from it? Seems like many are treated like mental patients, given an IV and sent home.

[Birdlady]

Ugh I have nothing good to say about ER visits due to POTS symptoms. Yes they will treat you like a drug addict or crazy person. When I went to the ER I was accused of being a heroin addict and they proceeded to check me for track marks. I am not kidding! The doctor told me that I must be really good at hiding them and wanted to check in between my toes. He also said that my neck pain and other weird symptoms I was having was likely withdrawal symptoms or complications of my heroin use. I have never used any drugs. I do not look like a druggy and my husband who was well dressed brought me in. There was no reason to be treated like that. It was completely ridiculous.

If your son's life is in danger or if you are very concerned then you have to go to be sure. Just don't expect much...

[Jan]

Sometimes getting hooked up to an IV helped my symptoms. Sometimes just being in a medical setting when you feel like you are going to die helps you feel better. My local ER room was usually nice even though I am sure some of the people thought I was nuts.

I stopped going there when I thought I was going to die because I figured I probably wasn't going to die and they didn't really help that much.

Overall, I think if you can wait until the next day and go see your regular doc you are better off. Even then, I found my regular doctor didn't have a magic pill for me.

My experience with the on call doctor has been useless. I was told my BP cuff must not work right for me to be having the readings I reported to him.

If you are really scared and feel you need to go, I would go to the local hosptial, get the IV started and let them decide if he needs to go to a different hospital. If you are that frightened, driving in a car for an hour would be really hard.

[lieze]

I'm sorry.

I've been to ER about 8 times myself and I think in every case I felt much worse than I actually was.

They never seemed concerned looking at me and my blood work was always normal so the danger I felt like I was in seemed to be just a feeling.

I don't feel guilty at all for going-if you're in doubt go.

I hope he can feel better soon, this has to be stressful for all of you.

[HopeSprings]

I would pose this question to the Dr. treating your son. Maybe he can give you a better idea of when it's a true emergency. And you if aren't comfortable with whatever those parameters are, there's always good old paternal/maternal intuition.

Dana - that is unbelievable!

[Noreen]

Certainly valid question esp. when you are dealing with a child. Many children with special health care needs have an action plan to implement when something happens or goes awry. Parent to Parent networks have such action plans sketched out usually. Perusing them will help you gain insight into the type of things to try to include in your plan. The final step is going over this with the doctor or the NP in the pediatric office.

By thinking through things, it may end up that his having a nurse come and administer IVs is a good option. Dys is too weird and individual and is so hard on all concerned.

wishing you the best,

noreen

[heathmcev]

The one time I did go to the ER I was having such severe vertigo and high BP I thought I was going to die. They saw my 155/117 and didn't question a thing, ordered tests, etc. But I think what gave me credibility & really made things move along was that one of the 1st things I did was give them the names & numbers of my POTS neuro & Endocrinologist (both 1 1/2 hrs away - so like you I had to go to a local hospital that didn't know about POTS). The ER docs called them both & got instructions. I didn't have any issues aside from having to educate them - as we always do!

I hope you don't have to go - but if you do, have your specialists' info handy - can't hurt...

[iheartcats]

When I was first figuring things out - there were a couple of times I drove to the ER and sat there in the car. Tried to calm down, tried to be hydrated, and I didn't have to actually go in. I know that sounds weird...but I wasn't familiar with my symptoms yet and just wasn't sure what was going on, but I learned over time I would have occasional spells that would calm down. I'm probably TOO good at ignoring them.

Until your child grows up? I feel for you. It's so, so hard to monitor someone else, I'm sure. I wish you well! I'm hoping the ER would be more understanding about a child then some of the adults have been treated (although that's terrible for you guys!).

[sandymbme]

I have been hospitalized several times (usually for a week or so every 2-3 months) and I agree with the advice that you should talk to your doctor and ask what his/her parameters for the ER would be. That being said, there are a couple of times where you would definitely want to go to the local hospital ASAP, they can always transfer if it is beyond their scope of care, but some situations do need rather immediate attention. If he has a syncope episode and is unconscious for more than about a minute, call the squad. If he is showing obvious signs of dehydration (which makes it really hard for POTSy people to maintain "normal" HR and BP) like a white tongue and overly dry skin, go to the emergency room. If his pain level is uncontrolled by and pain relievers or painkillers, go to the ER. There is a good chance under any of these situations you may get resistance or pushback from the staff. I have a binder I take with me every time I go to the hospital, that has the latest articles published by Dr. Grubb regarding POTS, copies of my doctor's orders for IV hydration 3x a week. (I too, have been accused of IV drug use. It was infuriating and humiliating, especially since I had those records with me that clearly documented the only thing going in my veins was salt water!) I also carry my healthcare power of attorney, living will and DNR. It's overkill, but you look less like a looney when well armed with facts! Definitely talk this over with your medical providers, ASAP if these issues are ongoing.

Sandy

[swreeder70]

Thanks for all the replies. We ask our son on a scale of 1-5 how he feels. We have been hitting 4-5 on a regular basis, although by the time we would get him into the car and to the local hospital I'm sure it would come back down to a 2-3 which is what he feels during his best times.

Our Dr only recommended to go to ER if symptoms are life threatening. As a parent, at times it all seems life threatening. So far we have not made the journey to the ER and we are giving most things an hour policy of wait and see. If he has severe symptoms for 60 minutes, we will be taking him in. The severe symptoms last 15-20 minutes in most cases and then he drops back down the the major category.

The long time between specialist visits and the wait and see game of treatments are frustrating to say the least.

[lieze]

What really helped me feel better was drinking ensure.

Something about the vitamins, minerals, and protein in it booted that weakness right in the butt.

Depending on his age you might try the kid's version pediasure. For me my malnutrition played a huge part in this and I didn't even realize I was malnourished.

I still drink my milk too.

My personal problem right now is I had allergy testing and I'm allergic to corn. Ensure is full of it so I really need to

find a corn free version. I'm having trouble making it up with food.

Good luck.

I just wanted to add if you try it have him just sip it slowly.

If he drinks it fast it might be a shock to his system-that is what I experienced.

[bkweavers]

Mason's dad,

Believe me, we've been right where you are! The first couple of months were terrible for my daughter. She wasn't on a beta blocker yet and her heart was racing at night with her crying and unable to sleep. She was so fatigued and she just looked terrible. She felt a little better after beginning a beta blocker but I hate to tell you this, she had a bad first year with being out of school every other week during that first winter.

I don't want to upset you but you need to know that he's only just beginning with this and it's going to take time and patience for him to feel better. It took so many different prescription changes with Liz before we found the right ones and no meds ever helped her dizziness. I'm so sorry for the worry and pain you must be feeling watching your son go through this. It was incredibly hard to watch my daughter feel awful day after day and my husband and I felt so helpless. I prayed for God to give it to me and take it away from her more than once.

I agree with the others about the ER visit. Keep in touch with his doctor and keep a record of what goes on with his symptoms day to day. Some meds take awhile before you see results but if you think it's making him worse, contact the doctor.

My prayers are with you and your family. It will get better but it will be a roller coaster. Take care of yourself and the rest of your family too. It affects everyone.

Brenda

[Christy_D]

We have only taken my son to the ER once, when his body temp. fell to 93 degrees. He was the dizziest and most nauseated he had ever been, had to lay flat and still or he would throw up. They warmed him up with blankets and gave him an IV and admitted him overnight until he stabilized. Other than that, we don't take him, they just don't really know much about POTS or some have never even heard of it.

We deal with this all at home and know that things will stabilize or get more functional with a little time.

Christy

[Friedbrain]

Just throwing in what I've done, cuz I can't answer your question about what to do. I know I get scared for myself, so can only imagine that it's 1000x worse when it's a child since you can't be in his body to know what he's experiencing.

I've done what others here said-my dh once drove me to the ER parking lot when I had lost cranial nerve function and my fingers had gone numb (I had tried playing tennis with a college student in 100 degree weather and didn't want to call it quits cuz that would've been admitting I couldn't keep up.....dumb, yeah). We sat there for a while to see if I got worse, or better. I drank a lot of water and cooled off, and tada, felt better, but my panic was decreased by being right there just in case.

Also, for what it's worth, I also have a blood pressure monitor that I use regularly. I'm trying to learn what's normal for me and what's normal for the different mental and physical states I go through (shaky vs dizzy, vs feeling like I'm gonna faint etc). My blood pressure is normally low, but I have noticed different pulse pressures have significance, and sometimes my pressure gets *really* low, and sometimes it gets very *relatively* high-and they're all associated with symptoms. I'm hoping that the more I understand, the more I can help compensate. I also try things and then re-check, to see what helps and what doesn't. The more I feel in control, the less scared I am, and that helps, too.

But I like the suggestion of sitting in the ER parking lot-maybe you can have a Care Kit for those times. You know, like the suitcase you have standing ready for when it's time to run to the hospital to have a baby. A little bag with cards and water bottles, and checkers board, etc. So it's not a stake-out with your son as much as it is a kind of camp-out

[Friedbrain]

Off-topic, but Mason's Dad, what are the vision problems like, and what causes them? I ask because I've had vision problems, too. Mine were labeled 6th nerve palsy at its worst (when my head "blew up", 8 ys ago): had trouble moving my eyes horizontally and ended up with double vision. But that was at its absolute worst, and I had other neurological problems. But I still periodically have problems with my eyes where I have some trouble with horizontal movement feeling sluggish. Steroids helped the initial episodes. I don't know why I still have periodic problems, although it seems to happen at night and I wonder if it's related to increased intracranial pressure-my pet theory right now. Anyway, do you have a reason for the vision problems?

[swreeder70]

To answer a few questions, Mason's case is pretty severe. He has not been able to attend school for 3+ months. He spends less than an hour total per day moving around, the rest he is lying down. We have home bound schooling and most days we struggle to get 15 minutes of teaching done. Mason lays on the couch as the teacher works with him. Some days he literally crawls to the bathroom, so malnutrition, atrophy and severe POTS are all taking there toll.

He has had vision problems of varying levels for about 6 months. He describes the following vision problems "shaky, blurry, fuzzy, lack of focus, dark spots, light spots, tunnel vision, sensitive to dark, sensitive to light, and just about total loss of vision. He has had a multitude of tests in regards to vision and it has been attributed to POTS.

I will also second the opinion that taking BP and temperatures at home are a must. When he is feeling the worst, BP is usually in the 75/50 range and we see an elevated pulse rate. We have been tracking BP, pulse, temp for months and can spot how they are related to how he feels.

We do understand that we are in for the long, rough road on this, but just feel that we are learning much of this on the fly.

Some positive news is that our Dr's admin called over the weekend and expressed that the Dr was very concerned with Mason and wants to see him on Tuesday.

Again, I appreciate everyone's thoughts, prayers and advice!