We are going home today. The EEG showed nothing, Jess was able to do what the therapists wanted (for 30 min at a time with 2 hours in between the 2 sessions) and while the doctor was here she was able to suppress the shaking.
So this is a "somatic" result of her depression and anxiety.
Gee. Didn't I already spend 18 months (at the end of November) dealing with treatment for that, which had exactly zero effect?
Now the doctor wants a psychiatrist to handle this. One in OK. I guess they don't believe it is real pain because she smiled at them. Actually I KNOW this. the doctor actually pulled me into the hall and poo-poo'd the idea that she was actually in pain. It is an "excuse to not do things". He saw her lunch - spaghetti with turkey meat sauce, scalloped potatos, fries, broccoli bites (fried broc and cheese), and a roll and a sprite and thought it was all she was eating. She had an apple and an orange about 30 min before because she wanted fruit before lunch so she would eat more healthily when it arrived. She also had already eaten corn and strawberries.
So her diet is a sign of her depression, and if she would just exercise, take a multi-vitamin and a vit D supplement she would be just fine.
No one CARED that she hurts like hell. We were smart enough to not let them know that sometimes the pain is so bad she doesn't want to live. That is the first thing that makes them jump to depression and anxiety.
I am SURE that she has depression AND anxiety. But they are CAUSED BY this problem, not the cause OF this problem.
We were SUPPOSED to get "full neuropsychological testing" while we were here, but they decided she was so nice she didn't need it. I wanted it just to see what it said. The neuro said he could "tell what the tests would say with-o doing them" and that they would just show anxiety and depression.
I am ******. I do think that she is showing signs of fibromyalgia. She is a couple of years older than I was when it started. No one has tested her for PANDAS, though I have BEGGED, or lyme. I was actually told by the neuro here, and the pain doctor, and two nurses that both lyme and PANDAS are not real.
Gee, I hope everyone who has been helped by treatment for them gets that bulletin. They can stop treatment and they will magically be just fine if they see a psychiatrist and get antidepressants.
WHY THE H*** DOES EVERY FEMALE WITH A PROBLEM THAT IS NOT INCREDIBLY EASY TO IDENTIFY GET TOLD IT IS ANXIETY AND DEPRESSION??
Are we REALLY teaching all the docs in the developed world this? If so, how do we smack whoever is teaching this (all of them) over the head with a hammer? A SLEDGEHAMMER!!
Anyway, we are going home. She will be off of the lamictal because they saw no seizures on the EEG (though she had lamictal 12 hrs before, I don't know how long it stays in the system if you have been taking it for a year.). If she starts having "short days" we will go back to the doctor for that. We will continue to see the doctor for her migraines (neuro that we hate) because she has GOT to have a preventative for them. 12-20 migraines a month is too much. The doctor refused to even discuss them. Said it was too much caffeine. She rarely has caffeine. Only when she gets a migraine because the neuro PRESCRIBED it for her to take with the imitrex or midrin to make them work better. He actually rx'd the amount in 36 ounces of coffee. We give her 8 oz of coke instead because the rx amt in the pill is just too much.
She is going back on the muscle relaxers. We have plenty of refills to take us several months until I can find someone with some understanding.
I cannot handle having her off all of the medications that help her with the pain. She is just in too much pain and she will either go nuts or do something stupid. I know my kid. I couldn't live with myself if she did something stupid to herself, something permanent. We are not there yet, but if she goes a few weeks with-o anything to help with the pain she very well might get there.
Thanks for all the encouragement. She really tried to get through to the docs and nurses. She is who she is and I cannot make her be someone else. She is sweet, and she does try her best to cooperate if she thinks there is a reason for something. She didn't complain a lot about the pain because they told her many times that all they could do for her is hot or cold packs. So she didn't fuss or act like a difficult child would when told that. She figured there was a reason to do a medication wash, which the doctor had stressed was important. So she gritted her teeth and coped. W.o being ugly to anyone.
I bet if she were a difficult child we would have a totally different outcome. PCs really get scr**** in this world. Esp as kids with problems.
This hoovers mightily. I could refuse to leave but they wouldn't change anything and they wouldn't DO anything. They just told me to find docs in OK. Gee.
So this is a "somatic" result of her depression and anxiety.
Gee. Didn't I already spend 18 months (at the end of November) dealing with treatment for that, which had exactly zero effect?
Now the doctor wants a psychiatrist to handle this. One in OK. I guess they don't believe it is real pain because she smiled at them. Actually I KNOW this. the doctor actually pulled me into the hall and poo-poo'd the idea that she was actually in pain. It is an "excuse to not do things". He saw her lunch - spaghetti with turkey meat sauce, scalloped potatos, fries, broccoli bites (fried broc and cheese), and a roll and a sprite and thought it was all she was eating. She had an apple and an orange about 30 min before because she wanted fruit before lunch so she would eat more healthily when it arrived. She also had already eaten corn and strawberries.
So her diet is a sign of her depression, and if she would just exercise, take a multi-vitamin and a vit D supplement she would be just fine.
No one CARED that she hurts like hell. We were smart enough to not let them know that sometimes the pain is so bad she doesn't want to live. That is the first thing that makes them jump to depression and anxiety.
I am SURE that she has depression AND anxiety. But they are CAUSED BY this problem, not the cause OF this problem.
We were SUPPOSED to get "full neuropsychological testing" while we were here, but they decided she was so nice she didn't need it. I wanted it just to see what it said. The neuro said he could "tell what the tests would say with-o doing them" and that they would just show anxiety and depression.
I am ******. I do think that she is showing signs of fibromyalgia. She is a couple of years older than I was when it started. No one has tested her for PANDAS, though I have BEGGED, or lyme. I was actually told by the neuro here, and the pain doctor, and two nurses that both lyme and PANDAS are not real.
Gee, I hope everyone who has been helped by treatment for them gets that bulletin. They can stop treatment and they will magically be just fine if they see a psychiatrist and get antidepressants.
WHY THE H*** DOES EVERY FEMALE WITH A PROBLEM THAT IS NOT INCREDIBLY EASY TO IDENTIFY GET TOLD IT IS ANXIETY AND DEPRESSION??
Are we REALLY teaching all the docs in the developed world this? If so, how do we smack whoever is teaching this (all of them) over the head with a hammer? A SLEDGEHAMMER!!
Anyway, we are going home. She will be off of the lamictal because they saw no seizures on the EEG (though she had lamictal 12 hrs before, I don't know how long it stays in the system if you have been taking it for a year.). If she starts having "short days" we will go back to the doctor for that. We will continue to see the doctor for her migraines (neuro that we hate) because she has GOT to have a preventative for them. 12-20 migraines a month is too much. The doctor refused to even discuss them. Said it was too much caffeine. She rarely has caffeine. Only when she gets a migraine because the neuro PRESCRIBED it for her to take with the imitrex or midrin to make them work better. He actually rx'd the amount in 36 ounces of coffee. We give her 8 oz of coke instead because the rx amt in the pill is just too much.
She is going back on the muscle relaxers. We have plenty of refills to take us several months until I can find someone with some understanding.
I cannot handle having her off all of the medications that help her with the pain. She is just in too much pain and she will either go nuts or do something stupid. I know my kid. I couldn't live with myself if she did something stupid to herself, something permanent. We are not there yet, but if she goes a few weeks with-o anything to help with the pain she very well might get there.
Thanks for all the encouragement. She really tried to get through to the docs and nurses. She is who she is and I cannot make her be someone else. She is sweet, and she does try her best to cooperate if she thinks there is a reason for something. She didn't complain a lot about the pain because they told her many times that all they could do for her is hot or cold packs. So she didn't fuss or act like a difficult child would when told that. She figured there was a reason to do a medication wash, which the doctor had stressed was important. So she gritted her teeth and coped. W.o being ugly to anyone.
I bet if she were a difficult child we would have a totally different outcome. PCs really get scr**** in this world. Esp as kids with problems.
This hoovers mightily. I could refuse to leave but they wouldn't change anything and they wouldn't DO anything. They just told me to find docs in OK. Gee.