Stressing Out

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Stressing Out

Postby Catherine » Sat Mar 06, 2010 11:11 pm

Okay, so my 4 yr old, Catherine, had decompression surgery for her Chiari on Tuesday 2/23. She had a rough time after surgery and was in ICU until late Thursday 2/25, where they discovered that she also had a heart condition (long qt syndrome) that I also have. She was released from the hospital on the 5th primarly because she just wouldn't cooperate anymore, and we all felt she would do better at home. Since then she had terrible headaches that were not relieved by pain meds and she continued to vomite daily. Yesterday she had a CT scan to find out about the headaches. The CT scan looked fine and we were given a rx for meds to help her absorb spinal fluid. She took some last night and althoug she didn't feel great she went to sleep and was okay this morning. She didn't have any pain and didn't feel sick. I gave her breakfast and then gave her the rx. Within about 20 minutes she was getting horrible stomach pains and then threw up really bad. She continued to be sick all day. She also kept complaining about pain in her arm where there is skin irritation (it looks like a burn and has been there since we left the hospital). I left 2 messages for the NS who's suppose to be on call this weekend and he has not called back. I decided not to give her anymore of the rx because she is sooo miserable with it and the headaches have stopped. I also took her to urgent care for her arm (which is fine) and on the way there she screamed all the way there and threw up, when we got there she was so upset they thought about sending us to the ER but when she saw the doctor she acted fine and even gave him high fives and said she felt fine, then as soon as we got in the car she started crying and threw up again! She keeps saying that she has hair in her mouth. I feel like I'm going crazy because she acts perfectly fine around the doctors and then screams like she's dying when she's just around family. I don't know what to do.

Has anyone else had this type of experience? I just don't know what to do for her, I feel like nothing I do helps.
Crystal
Catherine
 
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Re: Stressing Out

Postby Sara » Sun Mar 07, 2010 9:14 am

Some patients develop raised intracranial pressure after surgery. this is not always visible on a scan. Symptoms include headaches, nausea, vomiting, visual disturbances, excessive sleepiness. Diamox is a drug used to treat the condition, and some patients don't tolerate it well. My daughter had to take two stomach medicines with it in order to take it. But you need help sorting out if the vomiting if from the med or from the increased pressure. I would keep hounding the nsg. You will also need to follow up with a neuro opthamologist to examine her eyes for papilledema and make sure that her optic nerves are okay, as this can lead to vision loss if not treated.

some patients have temporary problems with high intrancraial pressure after surgery that resolves, I hope this is the case with your daughter, but make sure the doctors stay on top of it.
Sara
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Re: Stressing Out

Postby Catherine » Wed Mar 10, 2010 4:43 pm

Well, Sunday the NS had us go to the ER and then she was readmitted to the hospital. She was given the Diamox through an IV. She was okay the first night , because the ER docs gave her morphine. The next day she got through with me there to keep her calm but when I left and my husband was there she went nuts. It got so bad she had to be put in a psych eval room. She stayed until last night when the NS released her because my husband wanted her out of the hospital and Catherine wouldn't cooperate anymore. She still cannot handle the meds orally, refuses pain meds, stomach meds, she will only take her heart med. She saw the opthomologist this morning and her eyes look good. I don't know where we go from here. I'm praying that it resolves on its own. We see the NS tomorrow.

Crystal
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Re: Stressing Out-update

Postby Catherine » Mon Mar 15, 2010 2:20 pm

Well, we were back in the hospital last week to try to get the Diamox in her by IV because she would throw it up orally. She was there from Sunday through Tuesday evening. While she was in the hospital she went psycho on us and was taken to psych eval.. They figured it was the Diamox causing her to act like that. The NS finally released her because my husband was not going through another night in the hospital with her like that. At home I gave her a tiny bit of the Diamox (1/2 ml) and she started throwing up for a day and a half. We had another CT on Thursday and she still has some fluid that has not absorbed. We have decided to let her be and not do anything. This weekend she started playing and going to the park. She is still having headaches and vomiting occasionally and she still has some screaming fits but each day is getting better. Hopefully the fluid will all be absorbed or she will need to have it drained (another hospital stay :(.) Things are still looking up though. She is dressed as princess Belle right now and is asking me for ice cream right now. I think she's getting better.

Crystal
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