Just curious what you think. My 10-year-old has a destroyed right temporal lobe because her AVM ruptured in 2009. Rose has required a total of three craniotomies (2009 emergency, 2010 and 2011). She got hit in the head about 10 days ago and suffered a concussion (top of her head).
She’s also had upper respiratory infection, ear infection and seasonal flu – all start Dec. 22.
She’s struggling with headaches (kept her awake for several hours last night), dizziness so bad that she fell down yesterday, extreme fatigue, lack of appetite and even decreased hearing. Those sound like post-concussion symptoms, at least.
What do you think? Does this sound like an emergency or just something to watch? She’s made two trips to the emergency room (Dec. 22 and Dec. 24). But I don’t feel comfortable with neuro issues.
It's my understanding that many effects from a concussion often don't show up till days, sometimes weeks after a person gets one. I agree with you - it sounds like she is having concussion symptoms. You are a wise woman, Tina. Trust your instincts. I would treat this as an emergency. If you can't her into her dr. in a day or two. I would take her to the ER to be safe.
We ended up in ER. Headache gets worse and worse. ER docs have tried morphine, tordahl, topamax. Nothing has worked. CT was clean. IV Compazine suppository has made no difference. Docs are ready to send us home without making any difference in severity of headache.
Rose says we give her no choice but to give up. She says she wants to poke needles into her head. She’s anxious and scared. Nothing is helping.
I've been there myself. Drs. told me the same thing. Try ice-packs, not cold packs, it has to be real ice. Put one on the back of the neck and another one on the forehead. See if laying down flat with a pillow under her legs for extra comfort will give her any relief. <-- that one is iffy. It worked for me once, when I had a severe migraine. Tell her: Giving up is not an option. And that comes from a 50yr old man who is still here. Please tell her I said that and I'm praying for her.
Thanks, Ben. Your note helped Rose feel better. She’s pretty frustrated, but we will talk to Rose’s neuro. Hopefully the rest of the week will improve.
Please tell Rose that she cannot give up. Such a wonderful little girl has been through so much in her short life and I know that she will have so much more to offer others in her future!! She is one lucky little lady!
As for the pain she is experiencing, since the docs have verified through the CT that everything is clear and there appear to be no other issues causing the headaches (aside from this concusion), have you thought about some alternative therapies? I have a very good friend that has suffered from severe migraines for years. One migrane will lay her up for a week where she can't do anything but lay in bed. She has often gone to the doctor to get pain shots and other medications to try and make her feel better but nothing has helped. The one thing she did say has helped her so much is acupuncture. You may want to look into an acupuncturist in your area that will do work on children as it can be very very beneficial for migraines and other headaches.
Please keep us updated on how Rose is doing! BTW Rose is a beautiful name :)
That's a good idea. I talked to a woman who works with an acupuncturist in my area not long ago and she said they have good success treating migraines and nerve pain. I've been considering trying it myself.
Doc today says I should tell Rose to just deal with it. They added Topamax. They said it will just take time for it to work, so she’s just going to have to deal with it.
Acupuncture, massage therapy, or chiropractic medicine mmight be able to help her. Also, you should try a pain clinic. You can start here: http://www.iowaclinic.com/pain
If the pain itself cannot be lessened, perhaps relaxation techniques or hypnosis can alter Rose's response to it. Tension makes the perception of pain so much worse.
Topamax may work. I hope it does. But doc says it will likely take 2-4 weeks before we know if it will work. Great for late-January, but not now. She’s so frustrated she can’t stand it. I asked how she got to sleep last night. She said she slapped herself until it hurt bad enough to fall asleep.
She’s frustrated and giving up on the idea of anybody being able to help relieve the pain. What do I do now to help her? Last night she had hydrocone, morphine, tordahl and topamax – head hurt worse after than it did when we got to ER.
Maybe I am over-protective, but that’s too much to ask of a 10-year-old.
I would never, NEVER, say you were being over protective. You are doing everything you can and have to do to help your child! I'm more surprised those drs. are still alive, after what they put you and Rose through. lol
Suggest to Rose - Rathar than slapping her self to divert the pain. That she squeeze a finger or better yet - a toe or an area on her foot. That would get her mind directed away from the headache. I sometimes wiggle my toes to help me. I will imagine myself standing in a cold rain and that helps too. It takes a while but,, it works. It's actually placement meditation. Also known as imagery.
If you can teach her not to be afraid when they occur. That should lower there intensity too. Easier said than done, huh? Have her change her wording - instead of using the word "fear", use "concern" instead. Proper wording has a great effect on training our mind and body how it reacts to different things. You can thank Wayne Dyer for teaching me that one (smiles). I've been doing it for years with much success. Ohhhh... I still faulter every now and then but, then I get myself back in check.
Tina, you are not being overprotective at all, you are just being a good mother. You are staying strong after everything Rose has been through. I am 29 and when I had my bleed this summer my mom was a basketcase. Now, if I don't answer my phone on the second ring she panics and worries that something is wrong :p
I personally don't like the answer that the neuros have given you. It is very difficult to tell a 10 year old child to "just deal" with the pain that they are experiencing. Maybe the best option is to try and get to the bottom of what is causing her pain. Do you think it could be related to her craniotomies or could it possibly have to do with the flu/illness she currently has? You mentioned that she is having problems with hearing so it kind of makes me wonder if she doesn't have a lot of sinus congestion that is also blocking her ears. This kind of congestion can cause some major major headaches and when you combine that with the fact that she is having problems with a concusion I am sure that it would cause some pretty bad headaches. I would see if you could take her into see an ENT maybe and they can see if there is congestion in there that can be cleared up. Heck, as long as her neurosurgeon is okay with it I would give her a decongestant and see if that helps out.
I also agree with Ben, certain types of meditation can help with pain issues. I really would look into some alternative therpaies to see what options are out there for her as I have had great success with them over tradictional medical therapies.
Tina, When I read what Rose is going through, I hurt so badly for her. Yes, it is so much for a child to go through and expect to accept. We as parents and grandparents emotionally feel the pain. What about biofeedback for children? I pray for the two of you. - Cindy, Grace's Nana
Another day in ER (headache and vomiting). No crisis that we can tell. Doctor basically said it’s out of his league, and we should go to Mayo to see the doctors there and visit the pain clinic. I appreciate his honesty, but those appointments aren’t made same-day. Pain clinic isn’t even open every day.
In the meantime, she’s still got a headache, can’t get off the couch, can’t eat more than one meal in a day and can’t go to school. Obviously things get worse every day this continues.
Here is the latest:
– Has left the couch only briefly since before Christmas
– Eats a few bites of food a day
– Begs for help for headache
– Occasional vomiting
– Occasional dizziness
– Psychological health has dwindled each time a doc says he can’t help (“docs say she will have to wait a few weeks for current meds to start working”)
– She is stressed, angry, mad, frustrated
– She leans on me for everything – won’t tell her dad about her frustrations because he doesn’t believe her.
I'm sad, too, Tina -- it sounds like a nightmare for both of you. Did you call Cincinnati Children's? How can we find a place where they can give Rose relief?
Perhaps you can send a group message to all of the members of Parents of AVM asking if they can recommend a place for you to go to get rid of this excruciating pain?