Cerebral Palsy :: Baclofen Pump? Do You Have One?
Aug 8, 2015
My 12 (almost 13) year old daughter is about to get a baclofen pump. She is a foot user as her arms are severely spastic and have a mind of their own. The doctors all say that it will help with her hip pain (she has a dysplastic hip, it is on the leg that she uses) as well as the spasticity and tightness and pain that she has. they also say that it may help with her speech (she speaks very slowly and sometime cannot speak so well as her tightness makes her mouth all wonky).
She has botox about a year ago and it worked wonderfully... for about a week. so the doc does not want to do it anymore. I am totally ok with the pump and she really wants it, but i wanted to speak with others who have CP and have experience with the pump to know what your experience is.
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Day 1
I woke up after having a cold/bad throat for about a week and noticed it was a little difficult to speak. I had a look in the mirror and thought it was because of the cold. By lunch time I could not grip a straw with my lips and one side of my mouth and my cheek would not move properly. I tried to wink or blink and could only do it with one eye and when I tried to screw my face up it only did it on one side. I did think that had a stroke and booked an appointment at the Doctors. She gave me a course of steroids and gave me a leaflet that explains about BP.
Day 2
My eye is a little worse today, I had a little control over my blinking yesterday and today it is almost impossible. It just continually streams that is quite a nuisance. I went and bought some surgical tape to tape it closed with tonight. It is far harder to get food in my mouth today as well as it does not seem to open as well as it did yesterday. On the plus side I do think I still have my taste on the left side. I get pins and needles and twitching around the area of my jaw and my forehead ATM.
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When the heel of both feet cannot reach at the ground in cerebral palsy, what kind of training is considered?
In what kind of training is standing training of cerebral palsy carried out with this institution?
Please let me know the books which can be recommended by home training of cerebral palsy?
Although purchase is considered for the training equipment for functional exercise of cerebral palsy at home, what kind of training equipment is proposed
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I just want to know how the rest of you are dealing with the fatigue of a work day and fighting the fatigue. I'm 38 but most days I feel 108!
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I have a few problems I would like to ask about as I'm unsure if it's just me or not? The first one being my short term memory isn't very good at all, for example if I get asked to do something if I don't write it down I forget very quickly,another problem I have is my sense of direction it's bad. I can go somewhere (through to town) but I can't seem to memorise my way around. I'm now 29 and used to go with my friend every other weekend, no matter how many times we went I couldn't and still can't remember my way around. I hope what I've written makes sense and like I said I'd like to find out if it's a related problem to cerebral palsy or not.
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My daughter was born at 32 1/2 weeks and has very mild cerebral palsy, she is now 17 and experiencing days when she can't get out of bed. She is just exhausted and gets pins and needles. The doctor suggested it could be ME but I wondered if its a result of her Cerebral Palsy. Every time she does something that requires more mental or physical input than normal she is then wiped out for 2 days. Her CP has never really affected her, she wore Piedro boots as a child but recent years has had a "normal" life. Would really appreciate some input, she is due to have an MRI next week.
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2 days ago I woke up and hopped onto my computer like I do every morning (I'm 16/male and on summer vacation). I noticed that it felt awkward when I tried to blink my left eye. I didn't think anything of it and just continued on with my day.
The next day I woke up to the sound of my phone. I picked it up and it was one of my friends. He told me something that had happened the day before and made me laugh. I noticed that when I laughed only the right side of my face would move. I thought this was very strange and I got a bit scared.
I got off the phone and went to the bathroom and this is where I really freaked out. I couldn't move the left side of my face properly. Everything on the left side seemed a lot weaker than my right.
I tried looking it up for a few hours to see if anyone else has ever had this. I couldn't find anything except for a few forums with people saying it happened to them, but I still couldn't find out if it had a name. I was really scared and was having suicidal thoughts if this turned out to be permanent.
Anyways, I'm very very happy I found this site and that it heals itself. I told my mom and she's going to take me to the doctor so maybe he can give me steroids or something.
Summer vacation ends in about 3 1/2 weeks. I hope I recover by then because I'm not going to school like this, I don't care what my parents say.
I'll keep everyone updated. This is my second day so far with this dumb BP crap.
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Yesterday, while working on my computer, I noticed my left eye would not close. Within an hour my lip was drooping and eating was difficult. This morning, my Dr. diagnosed Bell's Palsy and has prescribed a course of steroids. My eye is taped shut to prevent dryness and I feel like I am falling apart,--a a thought that occurs frequently as the my 65th birthday approaches. I have chronic kidney disease and want to know if there is any alternative remedy for this hell known as Bell's Palsy.
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I have heard a lot about lengthening the Achilles muscle to ease tightness in order to help kids who have cerebral palsy. My grand daughter finds her physiotherapy sessions so stressful and painful that she's not getting the benefit she needs and I am wondering if anyone has tried this surgery and can tell me has it helped? Any information will be greatly appreciated as it is heartbreaking to see a little one in so much pain and not able to do things a normal child can.
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In 2003 I had really painful headaches so bad I could hardly put my head on a pillow, pretty scary as I do not suffer from headaches. Then as I was eating bowl of cereal I kept missing my mouth and realised I couldn't feel my lips or tongue as though I had been given dentist injection. My sister took me to hospital thinking I was having a stroke, this was the first time I had heard of Bell's palsy and I was given steroids, i was very tired and it was an effort to do anything like eat, speech, it did take three months to go.
february 2014 I got a rash on my stomach which spread to my neck, to my back, to my feet, then to my scalp and then my ears, I was in agony, it was urticaria. Whilst trying to cope with this I then got Bell's palsy again, possibly due to an immune system at a low. However it has taken a lot longer to recover this time. Eighteen months later and I still have a twitchy eye and lopsided smile. I am now considering Botox, has anyone here used Botox to correct any of the nerve damage left after palsy and if so what are your thoughts?
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I play the French horn and got the Bell's palsy after an exceptionally day playing 3 weeks ago. It seems to be fading already. I was sent to the stroke unit and found to be A1 in all other respects. My treatment was 7 days x 60mg steroids. If I return to playing, will it happen again?
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A person i know has suffered a stroke 8 years ago. He says he woke up at night wanting to go to the bathroom, but found unable to get up. He had his mouth drawn to the right side. His wife has taken him to the hospital. He was diagnosed to have suffered a stroke and had hypertension and hyperlipidemia.
The patient suffers dysarthria without improvement ever-since. Has drooling, fasciculations in the tongue. A small dent in the tongue which (i'm not sure) may be attributed to wasting. Jaw jerk is normal (I think so). No weakness in arms and legs.
What is this condition. IS it Pseudobulbar palsy? (Or a bulbar palsy?)
P.S: There is not pseudobulbar affect in this patient. Can a patient have pseudobulbar palsy without having emotional instability?
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I am on 600 mg Lyrica (yes max dose), 50 mg Amitriptyline, 200 mg tegretol, 5 mg valium, 10 mg baclofen, 1 g Chlorzoxazone, and phenibut when I want to take it. My pain is still not being helped much, even with all these meds. I was an addict and have been sober 8 years, but have been mixing my phenibut and valium to feel good 2-3 times a week. The dr is seeing this as addictive behavior and doesn't want me to relapse. So, he wants me to stop the valium, baclofen,and phenibut and replace it with Suboxone.
I am opiate naive and have never really gotten high on opiates before - I have no tolerance to them. He prescribed me 2 mg, 3 times per day. Now, I know this is wayyyy to high of a dose for an opiate naive person. What is a good starting dose for pain?
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Anyone with MS also troubled with TN? Sorry I did not have time to peruse entire board. Actually TN has been my only symptom but flares seem to be worse and more frequent. Was hospitalized 2 days with this last flare. Unable to swallow or speak without excruciating pain. Currently on Dilantin Tegretol & baclofen but barely functional on these meds. Pain initially went away but now with some pain with speaking, eating although not terribly severe. Now planning balloon compression surgery. Hope that will alleviate all pain & I can wean off meds and live life again. Anyone have experience with that type of surgery? Comments appreciated. Neurologist seems to think this is a flare but it has gone on nearly 6 months, so I fear this may just be new norm.
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My Mother is 60 years old and recently she is diagnosed with cerebral atrophy. We have consulted neurologists for the same and all gave same opinion that physiotherapy is the only way to minimize the effects.
Then we heard that stem cell therapy is the solution, which will not cure this disease but one can live normal life with this. Please suggest is stem cell therapy really works that ways?
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How often should i pump? What if i don't produce enough milk?
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Have taken several forms of ppis over the past year on and off and for the past six months cimetidine. Now have gout lower back. You tell the doctor this and he doesn't want to accept it. I do not eat much in the way of acidic - bad diet - and this can be the only cause of it. Yet doctor tries to fob me off with how it is just some temporary thing - a month later it is still there. I have insisted on blood tests for kidney and liver as I know it is not some muscle strain and that would not last a month or have fatigue and
dizziness with it either. He had also told me that people do not get a lot of coughing from ppis. WellI go it and nothing else could have caused it. I only ever had the bad coughing when taking the ppis, it would stop when I came off and start again when I started again. I then found about 50 people online with the same problem.
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Which of them is better for 7 years old boy?
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I want to breastfeed for a few months (I've heard it's great for bonding) then I want to pump and put the milk in bottles for convenience purposes... How long do you think I should directly feed her from my breasts before I switch to bottles?
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Is it possible for me to pump like maybe the week of my due date to make sure i have milk when the baby comes ..
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A $60 eye exam revealed swelling in the optic nerves that got me a referral an eye specialist, the eye specialist then told me I most likely have high pressure cerebral fluid that is causing the swelling and need a CAT scan to look for brain tumors, no brain tumors were found ....... but the cerebral fluid must be drained to prevent continuous swelling of the optic nerves that will cause separation & blindness.
The CAT scan cost me $1,000
The cerebral fluid draining cost me $1,700
The cerebral fluid draining required a large needle to puncture through the lumbar area into my lower spinal cords, as the lumbar area does not have 1 solid nerve as the upper portion, it is basically like spaghetti so there is NO risk of paralysis when done by professionals with a live X-ray machine to line up the needle between vertebra for safe insertion.
I don't know what measurement scale they used, but the pressure reading was above 40+. They told me normal pressure should be between 8 and 12.
They then drained the pressure to about 18
As I was walking out of the hospital, I had never in my life had such extreme mental clarity and excellent vision.
Shortly afterwards, I noticed that my normal clumsiness was gone that I had dealt with all my life.
Reading
Math
Memory
Physical agility
Strength
Desire
Aggressiveness
too many to list
As I know all my life I was mentally slower than average until that procedure. It has been 1 1/2 years since then, and starting 2 months ago I noticed diminished capacity slowly creeping up as before, as I probably need the procedure done again and don't have the money to do it.I realized that if this high cerebral pressure would have been detected as a child, I could have gotten a better education if it had been corrected.
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