SYMPTOMS????

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

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SYMPTOMS????

Postby nature » Mon Jan 04, 2010 11:47 am

My daughter, just diagnosed with CM and Syringomelia and waiting for a surgery date in FEB., is starting to have some new symptoms and I am wondering if anyone else sees these in their children or selves. Her sleep patterns are completely messed up. She will sometimes stay up all night then sleep ALL day the next day. If she does go to bed, like last night at 11 (last night of having no school the next day) then she wakes at like three or four and cannot go back to sleep. She woke me up for work this morning. Also she will not hardly eat anything. The smells of certain foods are making her nauseated and she's only eating about once a day now. She is having crazy mood swings. And last night she could not figure out how to get to ringtones on my cell phone which is something she does all the time. She also had some trouble opening a soda bottle and ended up with a large bruise on her affected arm that she doesnt remember getting. I dont know if I should take her in to her Primary Care doctor and get her checked out or call the Neurosurgeon. I felt like make she was suffering from Depression due to the stress, but I am just not sure. Any advice would be appreciated.

Thanks,

Nature
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Re: SYMPTOMS????

Postby memom » Tue Jan 05, 2010 2:32 pm

My daughter is has many similar symtoms. She lashes out at times when she does not feel well. Depression is a problem on many days. She said to me last night, "why is my life so hard". I took the table cloth off yesterday and she looked at the bare table and wondered when did we get a new table... She cannot remember simple things from time to time. Her sleep patterns are weird too. She always complains about feeling tired. Her eating habits change daily, I try to get as much protein in her as I can. So.... you are not alone - Today, she has blurred vision. Who knows what tommorrow will be like. It is very hard learning to take one day at a time, but that is what we have to do.

I am thinking of you and your daughter, where and when is she having surgery? I know for me, it helps to know you are not alone and that others understand what you are going through. Good luck and keep us posted.

Memom
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: SYMPTOMS????

Postby nature » Tue Jan 05, 2010 3:49 pm

Thanks for the response. I m just so worried. Right now we are looking at surgery on Feb 8th at OU Childrens in OKC. But I am taking her to her primary care today because the sleep thing is just getting horrible. She woke me up crying at 2 am this morning saying "Mom I just want to go to sleep, but I cant", so I thought a trip somewhere today was necessary. Luckily, her I used to work for her Primary care doc and he will see us anytime.
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Re: SYMPTOMS????

Postby lttutrow » Tue Jan 05, 2010 8:01 pm

Did you happen to see the story not so long ago on one of the morning news shows about the boy who never slept? Once they figured out he had CM, he had surgery, and then they did an update story about how his symptoms, including his sleep, were improving. Both of my kids have sleep issues. My son has the same food/smell issue as you describe. Something may sound good to him, but either he eats a bite or two and is done because his stomach starts to hurt/feels sick to his stomach, or it "smells funny". Until they increased his dose a few weeks ago on his headache medicine, my fridge was full of his leftover bites of this and that. He usually gets back to them, but a bite at a time. Once he's had his recent increase in meds, it's almost like he's on steroids, and he for the first time can't get enough to eat!! He said the other day, "So THIS is what it feels like to have an appetite?!?!?"
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Re: SYMPTOMS????

Postby nature » Wed Jan 06, 2010 9:21 am

It's kind of relieving to hear that I am not imagining these "symptoms"! Her primary doc, well I think he thinks I am being paranoid now. He told me just to give her an over the counter sleep medicine and quit letting her take naps. Which did help last night but she was still exhausted this morning. And of course I cannot keep her from falling asleep in the day if shes so tired! And as far as the eating thing goes, I made Chicken and Dumplings last night which is her favorite! But she pretty much had to choke it down because she couldnt stand the smell. At least we have a date for surgery now which will be FEB 8th. This really disappointed her because she will have to miss her first school semi-formal dance, which was rescheduled from Dec. because of the dance sponsor's kid being in the hosp with pnuemonia. We already bought the dress and everything!!!! But I guess life is full of disappointments!
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Re: SYMPTOMS????

Postby youngwife » Wed Jan 06, 2010 11:10 am

This sounds very similar to my daughter's symptoms before her surgery. She is now 15, and at that time she was 12. Being the oldest of 6, it was suggested on more than one occasion that her behavior was all or partially due to the responsibility or stress from family dynamics.

It wasn't. What it was, though, that many days being up during the day was more unpleasant then being up at night. The lights, sounds, and daytime activities were too loud or busy for her. So being up at night was more peaceful.

Plus, pain is a huge deterrent to sleep. So, no, I don't believe for a minute that these symptoms are being made up.

I am very sorry that your daughter is going through this. It is a very hard life, and not one any mother would want for their child. :(

Many days, Rachael would just like to be a normal teenager.

If you have any more questions, I will try my best to answer or help!

Blessings to you and your daughter,

Rebecca
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Re: SYMPTOMS????

Postby nature » Wed Jan 06, 2010 2:18 pm

Thanks for the response Rebecca. This is a stressful situation for everyone in the Family. I also have another question. Can someone explain to me a little about the opening of the Dura during surgery? Why exactly do they do this and what does it help achieve???? They are going to do that to Tara as well as take out the first vertabrae. This just all sounds so scary! I keep laying in bed at night having visions of them cutting her open. I am very thankful I have found all of you here though!!!! Being able to talk to others about this is such a blessing!
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Re: SYMPTOMS????

Postby Beverley » Wed Jan 06, 2010 3:29 pm

I have horrid sleep problems. I just do not get tied at night... It is very annoying. More annoying when you have to get up and go to work the next day.. I cannot say I have found any great answers. I have even tried staying up all night and all day the next day and I still could not sleep when I should have been sleeping... I have found that just plain old Benadryl now and again makes me tired but I cannot take it too late because then I would not be able to get up the next morning so take it at 6-8pm but not too much later.

The smell thing caught my attention though. You should mention this to the Dr. also just in case.

One thing is some medications can have this as a side affect....

But as for myself. I know that when my Blood Pressure drops lower than my normal low.. I have this odd smell sensation that even a good smell is overpowering and makes me nauseous. It is like a super smell to me but normal to others. Now normally for me I get very tired when this happens and cannot keep my eyes open and that does not seem to be happening in your DD's case but just in case.. Double check her BP to be sure it is not dropping low. Medications again can cause this to happen. This can happen with things lie POTs or even if the CSF blockage is bad enough.

It could just be that she is experiencing more nausea and this is a part of that. When you are nauseous it can affect so many other things after a while and it is definitely hard to eat if you are nauseous.

I do hope I don’t make you more anxious about the surgery by going into the detail on this… Remember that surgery for Chiari is not a “Cure” but a way to help to alleviate the symptoms caused by the brain herniation and allow the brain to reside without obstruction to the brain or pressure on the spine.

As to the Dura question. My NS left this up to him to decide during surgery if it was necessary. My NS did decide during surgery that I need to have the Duraplasty. Basically if the Dura (the protection around the brain is too tight they make a Y type incision and add a graph into the dura to all more room/less tightness.... This basically relieves some of the pressure on the brain and allows for a better flow of CSF.

Because they cannot just put the brain back up into the skull where it should be naturally. They do a Laminectomy on the Upper C-Spine (mine was done and C-1 and C2) they remove the back of the vertebrae to allow more room for the brain to reside in the area it is in without bone pushing into the brain or the brain putting pressure on the spine. Also, to allow for more room for CSF to flow properly.


I hope this helps some.

Beverley
Decompression Surgery Feb 8, 2008 w/Duraplasty & Laminectomy C-1&2
Cervical Disc Fusion 11/08 C5&6/6&7- Mild Disc Bulge L2-Focal Hemangioma
L2-L5-Lipoma 3mm L4&L5-Disc Bulge T11&T12-DDD
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Re: SYMPTOMS????

Postby nature » Thu Jan 07, 2010 3:21 pm

THANKS BEVERLY! Yes, your post explained it great. You know you just cant think of everything you want to ask when your in the room with the Doc. Plus I did not want to ask too many questions in front of my girl so she wouldnt worry even more.

Thanks again,

Nature
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