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Chelle

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Reply with quote  #16 
Shanbull
Thank you for your comments, we made our appt for psych evalation 2nd week of november.
He likes the essential oils. I will take your comments to our appt. And share the thoughts with the Dr.
Emotions run high with both my kids.

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Chelle
"just wish there is a fix for our kids"
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shanbull

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Reply with quote  #17 
Quote:
Originally Posted by AmberLotus
Now that you mention it shanbull, my body goes into overdrive too.  For example, on better days I have a video game I love to play.  I got really good at it and when I get excited about how well I'm doing that excitement can make me cry.  Not sobbing crying, as I'll calm down before that but I just thought I was strange.  Do you get that?

And fear...my entire body gets waves of cold starting from my head on down and that one likes to settle itself right in the gut and put a big knot there.  That doesn't help!


Yes you make sense, I totally get it. I cry easily as well, sometimes about excessively happy things (and I'll stop right away too because I find it so odd). I also will get a kick of energy if I'm feeling anticipatory excitement or dread about something coming up even if it's the middle of the night. Negative emotions get downright weird for me sometimes, if I'm shocked/upset/embarrassed by something a hot feeling instantly comes over me and I can actually feel something (adrenaline?) entering my bloodstream and my head and heart will pound. I've been told I turn bright red immediately too (I am very pale though so that's not hard). And like you, fear causes me to have a visceral reaction throughout my body. It makes sense that the next step for a lot of these reactions is to vomit. There's only so much neurological activity a person can take before it's physically overwhelming. Medication can help prevent ruminating and fixating on things to the point of anxiety, but I don't think it addresses the problem of reacting so strongly in the first place. I also wouldn't want to dull my emotional reactions too much and feel nothing at all, which I think is a danger of over-medicating. If the choice is between feeling too much and not feeling anything, I'd still pick feeling too much.

And in case anyone is wondering how this affects my interactions with other people, I vomit before every first date and if an unexpected break-up happens I go right into a CVS episode.

Thank goodness I took stage acting classes starting at age 7, or I'd probably have severe issues with public speaking!

Chelle, it wouldn't hurt to look into essential oils/massage/a therapist for yourself. Being a caretaker is hard enough as it is, with the additional stress going on you deserve to have a place to go to vent and focus only on yourself when you need to. It's not selfish to make sure your needs are being met.
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Chelle

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Reply with quote  #18 
Shanbull
Thanks I was just telling my kids that I need to take some me time to relax so I can care for eveyone else.
In the last few months stress has played a big roll in my declining health.

It is hard to remember that I count too. I cry very easily and my PMS kicks my moods around each month.

I sure do love the help and support I get here.

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Chelle
"just wish there is a fix for our kids"
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Chelle

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Reply with quote  #19 
Thanks Amber,
Today he seemed fine all day, came to the table for dinner, didn't like what I made acted like he was going to vomit and ran off to the bathroom.   Hasn't eaten anything since.  
I think sometimes he is just using his sickness. 

I went to the library tonight and got a few more books on Medical Alternatives and found one from Mayo.  I am excited to look into it and see what I can learn.



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Chelle
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Chelle

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Reply with quote  #20 
We had about 6 days with no episodes and only 2 days with taking zofran. I am very thankful for the respit my son has had.
Last week I found out that my kids lost medical insurance. After a lot of phone calls looking into options. I am putting the kids on my work health care. This is a big fininacial hit on me, but at least I know they will have good insurance. I hope it takes effect asap. I am on edge knowing they are w/o healthcare coverage.
Our lives are just not simple. I know God is good, and at some ponit our lives will be a little simpler.

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Chelle
"just wish there is a fix for our kids"
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Chelle

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Reply with quote  #21 
Thanks I really need all your support. I feel so bad for amber and all you have to deal with in your sickness. I enevy your relationship with your hubby. [wink].
I love both my kids so much. They can know help take of me when I don't feel well, which lately has been more often than not. Went to Dr. Today for myself about the pain I am getting on my left side.
I also found out this afternoon that kids insurance won't be be active until 12-1-14. So I will have to pay retail for a few med. Refills.
Today my boy was't feeling well he took a nap and shower seems to be okay for now. Hope he can sleep tonight.

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Chelle
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Chelle

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Reply with quote  #22 
Still dealing with my pain. Dr. Doesn't know what it is so I need to watch and and keep track of it.

Insurance is still in progress, I have all the paperwork turned into my corp. So know we are waiting to see if they give us coverage before the first of December.

I did make a couple appt. For myself with my obgyn to see if he can figure out my pain. It has moved up higher on my left side to the bottom of my ribs.

Andrew has had a couple good days in a row again. So that is something to be thankful for.
I want to get an essential oil machine to have running with some of the uplifting oils so during the day both of us can enjoy them and feel more possative.

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Chelle
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ginny

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Reply with quote  #23 
Chelle, you might have a duct blockage going on.  Do you still have your gallbladder?  It could be affecting your pancreas.  No insurance but through examination and your description your doctor might have an idea and then if you follow a gallbladder diet maybe you can make it until Dec. 1 for the testing.  But schedule the testing now if possible.



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Chelle

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Reply with quote  #24 
Thanks for your input. Last night i was in pain, but most of today has been pain free until like a hour ago. Pain is low but I have a headache and I know my anziety was up because I have some,tightness in my chest.
Last night we ate pancakes and eggs. Went to Costco and walking really made it worse.
The ct scan they did last month only showed a tiny kidney stone, but the pain is not at all like it was when I had a large kidney stone.
I think my body is just weak and older than my age. Too bad God doesn't have a return plan. Hee hee.
I will still have all my pieces and parts so I will do some research on the gallbladder and pancreas.

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Chelle
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Chelle

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Reply with quote  #25 
Well andrew had about 9 days good with no issues. Last to mornings he has woken up in pain and nausea set in. Luckly the zofran and stomach cramping pills let him get some more rest and w he woke up a few hours later feeling much better.
Tomorrow we start the butterbur softgels.

I had to get about 20 pills of his pamalor that cost over $40.00 after a discount, before that it was $60.00. I will be so thankful when my kids get put back on health insurance.

My pain has gone from my side, but I fear it will be back again next month.

Andrew turns 12 on Thanksgiving so we are having a party for him on Saturday. He said last 2 times he ate cake he was sick so we are going for browines and ice cream. I hope he isn't sick for his party, I know a lot of the suffers go into a cycle from there own parties.

He is doing good in his online school and seems to like it. Which makes me very happy that I made a good choice for him.



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Chelle
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Chelle

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Reply with quote  #26 

Last week was a very bad week for my son... two ER visits with the last one they admitted him for the first time for his abdominal migraines. Well they really admitted him because they gave him so much pain medicine that his blood pressure dropped so low.

I know I have read a ton of post and can't remember all the different types of pain meds given that have worked for some and failed for others, plus it is hard to remember because all the different names the medications have. Well everything they tried failed for my son (12yrs) 

First trip was Monday afternoon after he started vomiting Sunday night mostly out of the blue. He was a little emotional but nothing major and he calmed down and started vomiting about 8 times between 10:30 pm and 2:30 PM Monday afternoon, but the real problem like normal is the stomach pain and being nausea.  Tried things at home to abort but no luck tried 2 Imitrex Nasal spray. But that didn't touch it.

ER gave him what our Neuro wrote up as a Protocol of Saline, Compazine, Benedryl and Ketorolac. That put him to sleep but he woke up when the Dr. came back in and started pushing on his stomach.  Didn't reduce the pain any, so they gave him another shot of Benedryl he slept for a little while again, but still no relief in stomach pain. So they gave him Depakote, that seemed to help his head pain but not his stomach pain.  So they sent us home.

Tuesday he was still in some pain and didn't feel well. Wednesday came and the pain level went back up to 10.  So I called our Neuro a few times on Tuesday and Wed. but they didn't have any suggestions, so I took him back into ER on Wed. afternoon.  This time they called our Neuro Dr. and asked what to give him.

So they gave him a different dose of Depakote over 1 hour IV drip. Didn't touch the pain. Waited a while then gave him Thorazine IV drip with saline over an hour.  Still didn't help the pain, he was sleeping but not sound because he kept sitting up in the bed.  His poor little eyes were so red and blood shot and he looked pale.  Still didn't help the pain, so after a hour or so they were starting to give him a 2nd dose of Thorazine.  His blood pressure dropped and they said it was low but she thought it was fine, then the nurses' station called the room and they stopped his 2nd dose because of his low blood pressure.  So they put him back on a saline drip to bring up his bp, like an hour later they had to admit him because his bp was still a little low and he was still in the same amount of pain.

Once up to a room they did give him Atvain to help with his upset stomach and to help him get deep sleep.  After that the whole next day they wouldn't give him anything else for pain. They finally gave him some Zofran after lunch. 

Our release plan was to increased his Pamalor so that he is taking a low amount in the AM and a higher amount in the evenings

They said that we need to manage it at home like a chronic back pain, and that they couldn't do anything else for him since what they gave him didn't help.  They had Psychology come into the room and they want him to go back into BioFeedback.

Most of the time he is still moaning in pain in the bed while the Dr. are talking to him.. they said that he shouldn't have ordered the pizza for lunch if his stomach hurt.  I said well it is not an acid issue it is a pain issue and he didn't eat at all yesterday.  Plus they said the longer his stay the more likely he would catch an virus infection so they sent us home.

It took me week to get them to set up an appt. with Psychology for Biofeedback, but he can't get in until July. I asked to be put on the canc. list and called back today to see if they could fit him in since that was the pain to help him manage the pain.  Which he still is in today. 

We do have a follow-up appt. with GI on Monday to see if they can recommend anything different.

I had my binder with me and was referring to it a lot but after I came home and slept, I thought of things I should of said or pulled out of the binder to show them.  I did talk to Neuro a little about DHE - intravenous dihydroergotamine therapy for pediatric abdominal migraines.  Which I guess they are hospitalized for 4 days and given medication IV.  Dr. B Li suggested it to us last June when we meet him at the CVSA Conference.  Our Dr. is not ready to do that and isn't comfortable with the research on it.

We looked more closely at his tracking chart over 12 months and looks like the best month he was was Dec. when he only took Zofran and Levsin 3 times that month and Sept. was his worst when he took them like 20 times in the month.  



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Chelle
"just wish there is a fix for our kids"
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Beans

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Reply with quote  #27 
I'm so sorry, Chelle.  I know how frustrating it is to have pain be brushed off because it's chronic (or because the underlying condition itself is chronic).

Out of curiosity, did anything pop out when you were looking through his tracking chart (especially during the best and worst months)?  I have trigger foods that I have to avoid, but I have this constant pain now in my left side (pancreas tested "normal") that doesn't go away despite controlling my diet/sleep/stress/etc.  I can't help but think there is some cause or underlying factor to our pain that the doctors are missing.  [frown]
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Chelle

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Reply with quote  #28 
We gave up on tracking food triggers.  We think Hot Dogs and maybe Jets Pizza are triggers. 
During December he had some Neurofeed back and Biofeedback, done at different offices. Other than that I couldn't find anything else as of yet that could be helpful.  I am thinking of changing a few things on my tracking besides doing just a tracking chart I think I am going to enter the times he is in an episode into a calendar that shows Dr. appts. family life events, medication changes, etc..  

A never ending job of looking for things that make it worse or make it better.

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Chelle
"just wish there is a fix for our kids"
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Beans

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Reply with quote  #29 
My eyes are crossed after looking for so many food triggers too.  I'm beginning to believe it's more than just specific types of food (other than gluten, casein, and soy) and rather the fact that it's food itself causing the problem.  Even water is an issue most days.

Please update us if you find anything else that appears to make a difference either way.
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Chelle

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Reply with quote  #30 
I just wanted to take a moment and let everyone know my son (12 yrs) is doing good on his mission trip. I am missing him a lot but I know he is having fun learning and serving others. As far as I know he hasn't had any medical issues. After talking to me the other night, he started missing me a lot and got upset but I was able to calm him down in less than 10 mins. He hasn't called again, just short text so I know he is having fun. What a blessing this has been for us to have a good experience. He comes home Monday night, so a few more days to go.
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Chelle
"just wish there is a fix for our kids"
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