Thanks for the update Cherie. I was so hoping the LP would go well for her, as we all know that they can be nasty in some situations.

Now it's time for mom to catch her breath and wait for the results. Hang in there, we're all here to help you through. :hug:

Jumping in late. I will still be having good thoughts for your girl!:hug:

Thanks again everyone.

She is really doing well tonight . . . what a trooper!! :) Her back is sore, but so far no big headache or anything. She's in her glory drinking all the Pepsi she is permitted, so it's all good. ;)

Yes, the important thing at this point is what it ISN'T. I know I don't have to worry about a tumor or anything really critical, so I am relieved. She's got the typical "limboland" attitude going on right now . . . "I'M NOT STRESSED, the doctor is wrong about that!!", and I understand her sentiments.

Problem is that ONLY time will tell, right?

In the meantime, I'm hoping she will recover soon, and be able to be a simple-minded, reckless "blonde" again. :)

Cherie

Cherie, I just saw this thread, and I'm sorry you and your daughter have to go through this. But she's lucky to have you! Both of you will be in my thoughts, and I'll pray that if something is wrong, it's fixable! I hope you are doing okay with all of this too! :hug:

Cherie that is good news. I am glad is doing well.:hug:

Maybe your daughter holds in her problems and stresses, and doesn't even know it. Kids do worry. I am sure she worries about you, her Mom. She may not show it or even realize how she feels.

I was wondering about the blonde part. Hmmm.. I am still a Blonde since birth, all my kids too. :Scratch-Head: LOL

How are her headaches now, any better? Did her LP report come back yet?

So much for a child to go through. I'm glad she's happy with her Pepsi :)

When I asked my eldest whether she is afraid of getting MS, when she was about 13 or 14, she said "no way . . . I wouldn't have to work and could sit around the house playing on the computer all day". :eek:

The pediatrician neurologist apparently asked my youngest what her top three wishes were, and she told me that she responded:

1. That the boy I like will like me for a long time too.
2. That my best friend will never turn into a leach, like some of the "wanna' be" girls are.
3. That my friend who is having a brain tumor removed is going to be ok.

After she told me what she had said, she said "oh, I guess I should have wished for you to be ok with your MS, mom". :rolleyes::p

Yeah she worries a little about me, but in her mind, that is not nearly as important as keeping the loyalties of the boy she likes. :D

She says she is not afraid of MS . . . I guess because it looks like I have a very easy life to a teenager.

As far as the blonde comment, it was more a stereotype, and she isn't even blonde any more. She is just a very carefree, actress, cheerleader, musician, non-academic type. She is actually a very strong kid because she spilled boiling water on her legs a few years ago, and go severe burns on her legs. She knows what pain and trauma are . . . even if her life has been a pretty cushy number overall.

As for her headache/backache, I'll respond in another posting. We had a very difficult day yesterday . . . :eek:

Cherie

Yesterday wasn't so good. :(

She laid around all day, taking 2 adult Advil every four hours. That was hardly touching the pain she had in her spine and head.

I didn't know what to do with her by 3:00, because she had already had more pills than she was meant to take in a 24 hr period, and she was unable to move one inch. Tylenol doesn't really help her either . . .

I called her regular doctor's emergency line (the pediatrician neurologist left on vacation on Friday), as well as the Children's Hospital nurse line. The emergency doctor on-call did not respond, and the nurse line questioned what was happening with her. In the end, she told me to call an Ambulance, and have her transported to the closest hospital. I would have preferred to drive her myself, but she couldn't walk or stand up, even WITH pain killers maxed out.

The ambulance drivers left us sitting in the hallway in ER, and after 30 min someone went and got me a chair. Thank goodness, my legs have gotten progressively numb over this last week. We waited there till about 7:00, in the main throughfare, and by then she couldn't stand the pain any more (the pills we had given her had worn off). They gave her something, and said they were going to try to get her over to the pediatric area so that she could get in queue to be looked at by a doctor.

With the pain-killer in her, she was able to get into the wheelchair, but that didn't last for long. We were sitting in the pediatric area, and she was was in WAY too much pain to sit up for longer than about 5 min. After about 30 min, I approached a nurse to ask if there was ANYWHERE in the hospital she could lay down. I didn't care about the wait, but she just couldn't sit up any longer.

The nurse was a complete *$&%# and said "no, she just has to wait her turn". I tried to explain that that was fine, so long as she could lay down somewhere . . . but she said they were "too busy, and there was nowhere to put her".

I guess I kinda' lost it at that point. :eek:

I told the nurse that she simply could not sit there any longer, and if they couldn't find somewhere for her to lay down, I would have to take her home. Honestly, I didn't know how I was going to get her home, or what I was going to do once I did . . . but I couldn't let this go on indefinitely.

I went and called her dad, and asked him to come take her to Children's Hospital in the city. He was on his way, when I went back and layed her on the ground in front of a bookshelf. The nurse came by and said "you can't lay her there either ... she is going to have to sit up until her turn". I helped my daughter to her feet, and we left the pediatric area for the main ER.

We were waiting there . . . OMG that was hard to see her like that!!! . . . and I approached the guys that had helped in the Ambulance waiting area for the first 3 hrs. I asked what pills she had taken, because I needed to know what to tell them at Children's, and I also wanted to give her more Advil if it didn't conflict. The guy couldn't believe they couldn't find somewhere for her to lay down, but he gave me the name of the pill anyway. The (&^%^ nurse saw me talking to him.

So we were waiting in the ER recieving area, when the nurse came out and said "we found a bed for her". I was SO MAD, I wanted to leave anyway . . . but common sense prevailed, thankfully.

I took her back there, then went outside to have a cigarette and wait for my ex. By the time our ride showed up, I had a complete breakdown. Honestly, I don't think I have ever cried that hard in my life!!

They gave her morphine, sent us home with more + a rx for Tylenol 3 and instructions on how much we can drug her over the next 24 hrs. If she isn't better by this evening, she is to go back to Children's for a blood patch.

What a freakin' day.

Cherie

Oh Cherie, I am SO very sorry that you and your daughter are having to deal with all of this:hug:!

I really hope that you can get some much-needed answers real soon - I can't imagine what you are going through right now and how worried you must be. I have seen how bad my mum has been with having to deal with my illness so it must be even harder for you as you have your own problems to deal with also!:hug:

I am keeping you and your daughter in my thoughts and prayers and if I can help you in anyway, please let me know as I do understand some of the pain your daughter must be feeling right now :hug:!

Please keep us updated when you can and I really hope that things get better for you both real soon!

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:

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.

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!

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

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:

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. :)

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

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.

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

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

never had a blood patch (never had an LP) but I did look it up after asking my dad about it. (he's a nurse anesthetist) This website had some interesting information.

Cherie - I had the blood patch. It was not the nicest thing ever, but it got rid of the headache pretty instantly. My back hurt like he!! from it, though. That was not bad after the headache, though. I did almost pass out during the blood patch. I won't lie to you because you asked about it and you should know.

They take a fair amount of blood out of your arm - just like a blood draw, but it is just one big tube instead of a bunch of little ones. I don't know the exact amount, but it looked like a lot to me (probably wasn't nearly as much as I thought, though). Then, they have you curl and try to go in near the original site of the LP and they inject the blood into the epidural space to get it to clot up the site where it is leaking.

I got a vaso / vagal response at one point and got hot and cold and clammy and nauseous and nearly passed out. Once that passed (I breathed through it like labor) I was fine. I laid down for a few minutes and miraculously, the headache was just gone. My back hurt for a few days, but that was much better than having that headache.

I think if you can keep your daughter real calm and keep her from looking at the blood, she will do fine. In the end, it should eliminate the headache.

Thanks Erin and Holly,

Well, I wonder if that is the right procedure then, Holly . . . :confused:

She has the headache, but pain relief meds seem to take that away enough for her. Her big issue is with the back pain, in that she can't even lay on it or be touched.

Do you know . . . if it is not the headache that is the biggest problem, does it seem the blood patch might not be the right solution? Is that just used for the headache, and for the back ache it is just a matter of time (i.e. nothing they can really do for that)?

Cherie

I'm not sure about the back pain, Cherie. With me, it was all about the massive headache everytime I sat up. I didn't have a lot of back pain with the LP.

I didn't have back pain until after the blood patch because they put all that blood in there and it felt like pressure.

Here is a description I found online about post lumbar puncture headache (PLPH):

PLPH is typically described as dull or throbbing, frontal or occipital in origin and radiating to other areas of the head. Its most unique, often diagnostic characteristic is its postural nature; standing exacerbates the headache, while lying down partly or totally alleviates it. Headshaking, coughing and jugular compression worsen the symptoms. Associated complaints may include nuchal pain and stiffness, low back pain, diplopia, tinnitus, nausea and vomiting.

It does mention low back pain in there. So, maybe that is related. See if this description fits your daughter.

Mine felt like my head was going to explode if I sat or stood for more than oh about a minute. I got very nauseous and dizzy. I basically felt like I was going to die until I got the blood patch. Then, I felt much better and got some pain pills to fix the back pain.

I tried the caffeine route first. Then, when I went to the ER, they even gave me an IV of 500mg of caffeine. That didn't help. I just felt sicker and jittery to the point where I felt like I could levitate off the table all while my head was going to burst.

Did they check her for an abscess at the injection site?

Cherie - Man, your poor DD! I keep checking the your thread in the fibro forum so I missed this one.

I will keep your dd in my prayers. Update us when you can.:hug::hug:

Hi Cherie. I can't offer any advice on the LP, never had one. But I DO know that you're supposed to lay down afterwards, and that nurse was an idiot! I'm sure there was somewhere your daughter could have laid down! I hope she feels better really soon.

She sounds like a real trooper and very brave. I loved her three wishes, and to me anyway, it sounds like she's a cool, generous, well-adjusted kid.

I'm praying for the both of you. I hope you can get some rest amid all of this!

I am not a doc, and I only have my own LP experience to go off of, but the blood patch is typically done to stop seepage of spinal fluid from the LP site. The seepage of the spinal fluid causes low intercranial pressure, which allows the brain to swell slightly, which causes the massive headache. If she is having back pain but no headache, I would not immediately think she needs a blood patch. I would be thinking more along the lines of an infection or swelling of some sort at the puncture site.

In my case, they had to try twice to get the LP done, because the first lady that tried couldn't get the needle past my back muscles. She got it through the mucle and to the spine, but couldn't get into the spine, because every time she would move the needle, my back muscles would spasm and lock the needle down. I had to leave and come back the next day and have a different doc do the puncture. My back was quite sore from the 1st attempt, but it wasn't THAT bad. My headache kept me down for a little over a week, but the back pain went away after about 3-4 days.

Is there any possibility that the back pain is being caused by how much time she has spent laying down and what position/furniture she is laying down on? If she is in a very soft bed or on a couch, it could be that her back isn't getting enough support, which can cause its own set of problems if you are laying down for several days straight.

BTW...T&P for both of you and I hope it gets better soon!

Thanks again everyone.

I think we are making some progress here . . .!!

I have talked to the Children's Hospital nurse to the neurologist, and she was very confused. Apparently they never run into any problems from LP's done on kids, or at least it is so rare she didn't know what to say. She is chasing down the neurologist now, trying to find out what may have caused the back respond this way.

She hadn't been up and about (other than that stint in the hospital on Sat), all weekend. She would get a headache after the pills started to wear off, but as long as she stayed laying down, the headache is only an issue about every 3 hrs.

I had that headache with the botched LP, and it was CONSTANT, no matter what they did or what drugs they gave ... so at least her's is nowhere near as bad as that anyway. The other time I had it (with my 2nd epidural), I had a newborn to care for so I didn't particularly notice if there was any pattern. It went away on it's own after several days though.

So, she made it from about 7:00 last night, till about 9:00 this morning, with only two adult advil. I had to give her morphine when she woke up, and then 2 X Tylenol 3 at 1:00, but that is a BIG improvement over yesterday. She actually got up and had a shower today, but that's it . . .

As far as the back ache, I don't think it is related to the way she is laying, because it was hurting before she started laying around like this. Also, it hurts very bad to even to touch the area of her spinal cord with a soft stroke. The pain is not exactly where the needle was inserted, it's actually above that about 3 inches, up about 6 inches, right in the cord area and a few inches on either side. The doc didn't notice any swelling, leaking, or warmth, so he didn't think it was infected or anything . . . which makes sense too now that she is seeing some improvement.

So, I'm waiting on the nurse, and we'll see where we go from here.

Her spirits are pretty good, all things considered . . . well at least up until the pain relief wears off. :eek:

Cherie

Thanks for continuing to post these updates, Cherie. We're all here with you and for you on this journey. I really hope everything gets back to a relatively normal state and that answers will come soon. Your daughter sounds like a trooper and as for her mother, well, she is lucky to have you. :hug:

What a nightmare for your DD and you, too Cherie. Sure hope her back straightens out soon; sounds so painful. Keeping your DD and you in my prayers.

Keeping You and DD in my thoughts and prayers, Dear Cherie..:hug:

Dear Cherie--I just saw your thread. What a horrible experience for your family. I hope that neurologist follows up and really finds out what's wrong with your daughter. Hang in there and very best of luck!

Nancy T.

Hi Cherie,

Haven't seen you around the forum in a little while and hope everything is OK!

How is your daughter doing now? And yourself? I really hope that you are both OK and that your daughter is feeling better and that you have got some much-needed answers by now!

Take care of yourself and please know that if you ever need anything, I am here for you - I KNOW how hard and scary it is dealing with a illness at a young age so I am here for you both!:hug:

You're in my thoughts and prayers. Sending many gentle hugs your way!

cherie,

how are you guys doing today? improvements i hope.

Jim had back pain for days after his last two LP's. As a matter of fact he could feel the pain for at least a month. For him it may have been a sensitivity thing because he had neurogenic pain and if you just ran your finger down any area of his body he would tell you it hurt.

Still praying for her Cherie. :hug:

Thank you for your support, everyone.

I ended up taking a bit of a break about stressing on all of this. It has really been a bad month trying to keep up with everything that was happening with her, and it has caused me some numbness and eye problems to contend with too.

I can't remember my last update, and am still too tired to look . . . so I apologize if I repeat myself.

I called Children’s on Monday, and they didn’t know what to make of it. Apparently they NEVER run into problems like this, so the nurse didn’t know what the next course of action would be. She was tracking down the neurologist on call, because the pediatrician neurologist who’s been dealing with my daughter had left on vacation. By Monday afternoon though, she sat up for the first time. She was still on heavy-duty meds every 3 hrs, but she was making steps in the right direction. We decided to see how she would do on Tuesday ...

Tuesday was slightly better than Monday, and by Tuesday night, she was able to eat dinner with us, etc. She was still on meds, but we managed to reduce them to every 4 or 5 hrs. She had gotten cabin fever quite bad by that point, and wanted to try to go to school the next day. I agreed to at least let her give it a try .... IF she could get out of bed in the morning.

She went to school on Wed, and made it through the day. She still needed Tylenol 3 alternated with Advil (back to every 4 hours again) , and she was exhausted when she got home, but she made it.

She went to school again today, and it was the first time she has woken up since last Friday without crying out for meds before saying “good morning”. She lasted 40 min before she asked, had some pain relief @ 8:30, again @ 1:30, and it’s about 7:30 now and she hasn’t asked for more. :) That’s after spending the whole day sitting/standing, so that’s HUGE progress.

They are on Spring break starting Friday, for two weeks, so she will have lots of catch-up on homework, etc. Thankfully she gets this break though . . .

So, the end result of the testing, at least thus far, is that she has nothing wrong with her. She is still numb, with hyper-sensitive skin, but the vertigo let up mid-last week (just prior to the LP). There are still some LP results that are outstanding, but the initial feedback is she doesn’t have any inflammatory process going on.

The pediatrician neuro was really excited to tell me that she “doesn’t have MS”, but in all honesty, I didn’t expect to hear otherwise and I told the neuro that. She was a bit surprised by my response, but I explained that I am aware that a MS dx often takes time (dissemination in time and space, etc.). She said, “Well the only objective finding was nystgamus”, and I said “that’s more objective finding than they had for me when I was paralyzed from the chest down in 1991”.

For now, I guess we are to approach this as my daughter has some psychological issues to work through ... so I tried to queue up some counseling with “mental health” to make sure she gets all the support we might be able to offer her. After a 4 page questionnaire, they determined that she will go on a 6 – 8 month waiting list as she doesn’t seem to have any “issues” that require immediate resolution.

We have an appointment to go over all the results in mid-April, and in the meantime hopefully the rest of the back pain, numbness, etc. will let up. The improvements are slow, but they are still heading in the right direction . . . so unless things stall or change, we’ll keep going along this track.

Thanks again for your input and kind thoughts.

Cherie

13 years old and already slaying dragons and baffling doctors. I am so sorry your family is going through this. You have faced my biggest fear. That is the one thing that I am absolutely terrified of, that my daughter might inherit this from me. I cannot even begin to imagine what you are going through, but I am glad her test have come back negative. And I am so glad to hear she is up and moving again. that had to be a horrible and petrifying experience. Mine was and I was almost 30. She is a trooper like her mom. :hug:

Thanks for the update, Cherie. I was beginning to get worried about you! It's always more stressful when our children are involved. If you're like me......dish out what you want to me but leave my kids alone!! :mad: I'm glad, though, that they didn't find anything alarming. It's still puzzling, though, not knowing what is exactly causing these sx. You're both still in my prayers. :hug:

Thanks for the update...I have checked every day looking for an update..you, your family and especially your daughter have been in my prayers..