Lips Turn Blue Laying Down

DDD

Well-Known Member
I just realized that I haven't posted on your thread at all. Medical issues are not in my area of expertise so I have no words of wisdom. I "thought" I had at least posted my support but obviously didn't. Please be assured that I have been thinking of you all and hoping this is resolved soon. Hugs DDD
 

susiestar

Roll With It
Thanks everyone. It looks like dystonia to me also. We have a dr appointment on Wed and I am just going to ask the doctor how he would treat HIS child who was in constant pain with NO relief and no dr willing to do anything? THe neuro's all say it isn't dystonia but they don't test for dystonia. One tried to say it would be on the EEG but I can't find ANY source that says an eeg is a conclusive test for dystonia. MOST internet research says that the EEG shows very little when dystonia is the problem, but the neuro's here believe that they can "just tell" from the eeg. Plus J is in so much more pain if she doesn't suppress the movements as much as possible that she is reluctant to just let them happen for long periods. Since she didn't show them except in her sleep during the eeg, the doctors think it isn't "real". The docs all just want to point to someone else to get you out of their office, at least so far.

I am going to ask the doctor if he wants to start treating this or wants me to start calling him EVERY NIGHT AND DAY when she is in off-the-charts pain? It can be his choice. She has tried to "handle" it because she is far from stupid and figured otu that no doctor really wants to treat her so she found ways to attempt to not go crazy from the pain. I am terrified that if she is able to go out into the world alone much she will find someone who gives her heroin and get hooked on it. It WOULD deal with the pain, but that is NOT something I want my baby to be on. I totally understand how the pain could drive her to it, and won't ever be angry at HER if she goes that route when she doesn't have any dr who will pay any attn to her problems or treat them in any way. I will push treatment, but I would so much prefer we just get some dr to treat the problems rather than to just tell her to "focus on life in 6 mos when this is gone" which we have heard from 3 yrs now. The problems don't go away, they are nto gone, and she has spent that time in non-stop agony because NO ONE will help. WE meditate, use biofeedback, massage, stretching, exercise, etc... and these were all supposed to be the "cure-alls" according to the docs and specialists. They have accomplished NOTHING and so far no one but those who know and love her give a ****. Heck, they don't even give a tiny neon tetra.

I think that calls at all hours to the dr's emergency # MIGHT make him start to give that tiny neon tetra. If not, I can up that ante. The whole blue lips thing is just taking it way too far. Just 2 mos ago he told me that she does NOT need a sleep study. ORLY? I bet he changes his tune now. If not, I am going to go all Warrior Mom with a cell phone on his tushie. I even found his home phone number. Won't call it unless I have to, but I will if we dont' get some real help and some pain medications.

We thought that gabapentin (neurontin) was helping with the absence seizures. She is on the max dose and has started to have mroe of them, so that needs to be changed. It isn't that she doesn't want to do things she ahs been asked to do, she is just not "there" when we ask. In the last week I have started to have her tell me what I jsut told her or asked her to do and she is missing big chunks. I can tell it isn't normal typical teen ignoring because she missed the part about "you can have a donut when you do x" or "I put some dove in your craft bag" and other stuff. Not all the positive stuff, or all the chores, or all of any one kind of thing is being missed. But when she misses the part where I told her I put chocolate here - and it is during PMS week, well, the absence seizures are back.

I truly appreciate all the hugs, prayers, good thoughts, ideas, advice, and support. So does Jessie. She asked me to tell you thanks for her - and that it helps to know that you are all "here" for us. I don't let her read most things, but I do sometimes let her read a thread about her.
 

thehappydaygirl

New Member
I am sorry you are having to suffer through this. I'm reaching at straws here but I am mid 40's and when I had surgery and a mri the same thing happened to me. I turned a deep blue than purple. They did tests and found out I have Vena cava syndrome caused from malignant issues. I hope this is something you can check out. I turn red just bending over to tie my shoes that was one test they did before the scans that confirmed the superior Vena cabs syndrome. Good luck stay strong your family is in my prayers
 

TerryJ2

Well-Known Member
Susiestar, I just read this entire thread again. What a slow, frustrating journey. I am hoping that a doctor can come up with a test or two that shed light on all of this. {{hugs}}
 
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