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-   -   Trying to rule out MS in my 13 yr old daughter (https://www.neurotalk.org/multiple-sclerosis/79869-trying-rule-ms-13-yr-daughter.html)

DizzyLizzy 03-08-2009 01:36 PM

Cherie,

I am so sorry to hear about you and your daughter's experience! That is horrible! When I had my LP in January, I was told that if I got a bad headache, that I was to return to the hospital immediately so they could perform a blood patch. I cannot imagine why they would be making your poor daughter wait so long for some relief and without a quiet place to lay down! Not only does it sound like the hospital staff was incredibly insensitive, but this was down right cruel, especially for such a young patient. Unbelievable! :mad: I pray that your daughter can get the help she needs from Children's. I also would not hesitate to write to the Administator of the hospital explaining the situation and how poorly it was handled. They need to know these things are happening in their hospital and perhaps in the future there may be some changes or at least an apology.

I'll be thinking of you and your daughter today with warm and positive thougts. :hug:

Erin524 03-08-2009 01:41 PM

Are you going to write to that nasty nurse's supervisor and complain about the way she treated you and your daughter?? She sounds like she was a bit (a lot!) arrogant and sadistic. Either that or she thought you and your daughter were drug seekers or something.

I'd complain about her.

DM 03-08-2009 02:09 PM

Oh my Cherie! That is just awful treatment. It makes me sick thinking about your DD in so much pain and noone in that ER giving a darn about her wellfare or yours. Being the Mother of a chronically ill child, I know how helpless you feel. After my DS had his transplant, that put the end to any waiting rooms; they have to place him directly in a room b/c he is immunosuppressant.

I think you really need to write a letter to the hosp board or complain very loudly to someone. That treatment is unacceptable. I sure hope you can get some answers very soon and that your DD feels better. I want you to know that I am praying for her and her Mother, too!

sabimax 03-08-2009 02:59 PM

sorry you had a rough long night of it...first the waiting there and the nurse with the bad attitude or reaction to wanting a bed....it is a hospital..wow if can not take time to find a bed...anyhow sorry about the hard time for your daughter and her pain. and the visit to the ER.

Hoping she is feeling much better and wont need the patch...hugss and good luck for the answers too, hugsss,sarah

Desinie 03-08-2009 03:17 PM

Cherie,
I'm so sorry to hear what you and your daughter had to go through at the ER yesterday. I'm suprised they didn't think it best ( especially for a child) to just do the blood patch right away. I remember the horrible headache I had after my lumbar puncture and even as a nurse,I didn't know anything about blood patches after LP's if you get the headache. I had that horrible ,pounding headache for a full week after mine anytime I had to sit up.
After things have calmed down for both you and your daughter, I would most certainly write a letter to the Director of Nursing of that hospital. What you both had to endure was just completely unacceptable no matter how full or busy the hospital was at the time. My prayers and best wishes go out to both you and your daughter. Please remember to take care of you too as I know the stress of all of this has to be so overwhelming to you :hug::grouphug:

Lady 03-08-2009 04:34 PM

Cherie that is awful. I don't know why they couldn't even find a push-gurney for her to lay on, if not a bed. How cruel, they knew she had an LP and should be laying flat for a few days.

I hope she stays flat now, no pillow, no recliner, to give the leak a chance to clot. Putting pressure, by laying on her back. If she is allowed to go to the ladies room she must stay half bent over and not raise her head and not go alone.

Drink plenty of fluids, sip them slowly, (water, juices) to replenish the fluid loss in her Spinal fluids. Build the pressure back up. Sometimes they take too much out with the LP, or too quickly.

Remember sip: If she drinks too much at once, it will go right out of her and too many visits to the ladies room. Pepsi is a diuretic, not good at this point. Caffeine won't help now. She may need a patch anyway, some people do. I hope and pray she won't need it, and is okay real soon, you too my dear.:hug:

JMO, if the Dr gave orders follow them. I am just trying to remember my LP's and Dr's. advice. Also I have seen this in hospitals here. No Aspirin or Vitamin E.

I am sure you know all this, the researcher/reader that you are. :)

weeble37 03-08-2009 05:19 PM

Cherie,

Wishing you some quick answers and some comfort for your wonderful daughter who has been such a trooper through all of this.

Best,
Weebs

NurseNancy 03-08-2009 05:21 PM

cherie,

that is just pathetic care!
i'm very sorry this happened to your DD and hope that she is doing better by now.

and why pts can't get ahold of their drs in an emergency is beyond me.
i'm so angry for you both.

jccgf 03-08-2009 11:41 PM

Cherie,

I'm so sorry to read your daughter has been going through all of this. What an absolute nightmare for both of you. Its so hard to watch our kids suffering. My thoughts are with you and I hope you will get some answers or better direction soon as to what is going on.

Cara

lady_express_44 03-09-2009 12:42 AM

Hi, and thanks all again. I really do appreciate the support, even if I don't have much energy to get here and say so. :grouphug:

She has been laying all day again today, she is still hurting a lot every 3 hours. I've been giving her morphine every 6 hours and Advil every 6 (3 hris into the morphine). I haven't filled the Tylenol 3 rx yet, because Tylenol doesn't normally work for her (at least it doesn't for a fever).

We have one morphine left, and I'm hoping she sleeps through the night so that I can keep it for the morning. I guess her dad will have to take her in if worst comes to worst.

I really don't know what is "supposed" to happen here, and if this is normal recovery. I had a LP, but it was botched and I spent a week incoherant in the Brain Trauma Unit. I had the headache, for sure, but I was so out of it, I don't remember much at all about it.

I also had epidurals with my kids, and I remember a bad head and back ache with the second one . . . but I have a very high tolerance to pain too ....

How long should I wait, I wonder? Also, how involved is the blood patch procedure? She's already asked if the blood patch means another shot in her back, and I'm pretty sure it does. Has anyone had one, and how bad is that procedure?

Thanks, Cherie


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