[Nick's mum]

My son Nick has severe problems with spasms at the moment. He did have a small increase in Baclofen from 900 to 960 micro??? last month but spasms are even worse now and they are setting off severe AD attacks.

Is there another medication he could be prescribed from his GP to try and ease his discomfort? Next appointment at Stoke Mandeville Spinal unit is not until end of July.

Ulla

[Apparelyzed]

Hi,

Have you managed to pinpoint the causes of the increase in spasticity?

Over what period has his spasms increased?

It's possible, there may be a secondary condition causing the increased spasticity which can be addressed.

Regards

Simon

[Nick's mum]

Hello Simon,

The spasms we thought to start off with were due to a UTI but we checked with the hospital and the last three cultures have shown nothing. Also blood test shows that Nick is infection free.

Bowels are fine and he has no sores.

Ultrasound on bladder and kidney showed nothing.

I don't know where we go from here but Nick is suffering greatly and have problems both sitting in his chair and lying down in bed.

What do we ask for next? He is not showing any other symptoms than spasms and severe swetting.




I forgot to add that it's been going on since Feb/March

[Tired of hurting]

Hello Mum, I have suffered with spasms for over 3 years...I took 30mg Baclofen every 4 hours,used Dantrium 2 times a day,merinol 2 xs aday, and soma at night Vesicare and kolonopin for bladder spasms. If there is no UTI,and no infection it's spasms. I have a pump now implanted Feb28th 2008 life is good and the spasms under control.

[Nick's mum]

Hi Tired of hurting,

So pleased for you that you are now spasm free and that you are now "living" again. Nick had his pump December 2006 and it worked a miracle. Now the miracle has gone!!!!!! and I feel we are back to square 1 or even less.

Ulla

[Trinity]

I'm really not an expert on the pumps but has it been checked recently? What I mean is that is the pump working correctly and is the baclofen actually reaching it's destination. Just a thought...
T x

[Apparelyzed]

Hi,

Well, it sounds as though the evaluation to find the source of the increased spasticity has been done correctly.

Has he had a Mylogram yet?

A Mylogram is when they inject a contrast dye, through the bolus port on the pump, and check that it is exiting the cannula in his spine. This dye shows up on an Xray, which is taken as the dye travels down the tubing. It's a simple procedure, and I had one done when my Medtronic pump sprang a leak at the connection near the pump a few years back.

At least you will know the baclofen is reaching it's destination, and that the cannula tip is where it's supposed to be in his spine, and that there are no leaks.

Has he had any changes in sensation or muscle power?

Hope that helps

Simon

Nick's mum, on Jun 22 2008, 10:17 PM, said:

Hi Tired of hurting,

So pleased for you that you are now spasm free and that you are now "living" again. Nick had his pump December 2006 and it worked a miracle. Now the miracle has gone!!!!!! and I feel we are back to square 1 or even less.

Ulla

[Apparelyzed]

In addition to the above, how are his spasms after his bladder has emptied?

Does the sweating decrease after his bladder has emptied?

If so, his bladder could be hyper-reflexive. This means his bladder goes into spasm when it starts to fill up. This could cause the sweating and increased spasticity. Hyper-reflexive bladders can be treated with drugs to make them less sensitive.

Regards

Simon

[Nick's mum]

Thanks a lot Simon for that. I had no idea about hyper.... but it's a bit difficult to spot as Nick has a suprapubic cath. I will watch and see if it makes a difference.

His legs are so deformed now that I have problems caring for him. Have called Nicks physio and she is coming tomorrrow with a t-bar.

Regards, Ulla

[Apparelyzed]

Is his supra-pubic catheter ok?

Is it pulling or is there any trauma around the catheter site?

Supra pubic catheters can irritate the bladder as well, have you changed the catheter lately?

Regards

Simon

[Nick's mum]

Nick is now back on oral Baclofen 10mg x4 and then 1st increase etc. Not that it helped before when he was on max dose hence the pump but there is always hope.

His lovely Physio came with a T bar so that is a little bit more comfy for him and he slept all day.

Hopefully we can get an appointment at Stoke Mandeville next week but nothing arranged yet.

The catheter should be in situ and is not due for a change until July. There was a lot of trauma to the

urethra. http://www.apparelyz...?showtopic=7021

Had the result of last weeks urine culture and it's clear.

I will ask about a mylogram, is there anything else? Should we also press for a MRI to be done? To exclude Post-traumatic syringomyelia

This post has been edited by Nick's mum: 25 June 2008 - 05:18 PM

[Apparelyzed]

I'd enquire about a mylogram first, as they can see if there's a leak.

Is there any swelling around the pump, or his scar on his back, does there feel as if there's fluid under the skin when you tap it gently with your finger. This has probably already been done, but it never hurts to check again.

Regards

Simon

[Nick's mum]

There is no sign of swelling around the pump or on his back. I check a couple of times a day.

There is also no obvious pattern to the sweats. Sometimes on transfer sometimes just lying in bed doing nothing.

Regards, Ulla

[Apparelyzed]

It's difficult to know where to begin when there's no pattern, but the two area's I would look at, are pump and bladder.

The bladder incident is recent, so may just be aggrevating the problem with the pump, causing the sweating. The increased spasticity started before the trouble with the catheter, so is pre-existing.

I find that when my pump runs out, I have an increased occurance of sweating. When the baclofen stops flowing, you go into withdrawal, and your spasms go mad for a couple of weeks, before settling a little. Initially, you're just one big quivering spasming lump!, then, as you get over the withdrawal, just the large powerfull spasms remain.

If it's his pump, he may of found his fingers or other parts of his body have become hypersensitive as well, feeling sore. He may of had an itchy feeling on his scalp.

Just a few pointers.

Simon

[Nick's mum]

Thank you very much for your support Simon.

I notice when it's time for a refill as Nick loses his confidence a bit and when he comes back from the refill his confidence has returned.

As far as hypersensitiveness goes it's enough to touch the top sheet and we have action.

He has not got an itchy scalp.

Thanks again for your help Simon, bye the way Nick was known at King's College Hospital as the one that was not textbook!! Lol

[Nick's mum]

As of 10 min ago Nick was rushed by ambulance to hospital with a suspected baclofen overdose.

I was on the phone to Stoke Mandeville, they called and said he has an appointment next Wednesday for x ray and consultation. I mentioned that I could not wake him up ( that's not unusual for Nick, he seems to take himself off to somewhere and wont come back until he's ready! So I don't panic!) and they asked me to call spinal outpations for advise. The advise was : dial 999

Nick finally woke up 1 min before the ambulance came as we were trying to clear his airways.

He was awake and back to near normal self when they left.

Never a dull moment in this house!!!!!

Regards, Ulla

[Apparelyzed]

Hi Ulla,

Sorry to hear that, but I have to ask, how were his spasms?

The fact that he has had an overdose, shows some baclofen was getting through from the pump, unless he was on a really high oral dose I would of thought.

When I had my overdose, my symptoms were shallow breathing, lethargy, nausia, and a metalic taste in my mouth.

Hope he's feeling better, they'll probably reduce his oral baclofen.

Is his pump set to continuous feed, or just 1 bolus dosage a day?

Regards

Simon.

[Nick's mum]

Hi Simon,

Nicks spasms were no different. His legs are so tight they are pressing on his testicles and there is no way we can do any stretches. He really had no other symptoms of an overdose. Hubby just rang and said they know nothing about baclofen overdose where Nick is. He seems fine and is rather pis... off at being in hospital once again.

I gave the first oral 10mg dose @ 16.00 and the second @ 22.30 but I must admit I was concerned at giving him 10mg to start off with instead of 5. It did not click when his GP told me over the phone. I did check the label on the box and that said 10mg to start off with so I thought he must have spoken with Stoke Mandeville and this was their advise.

Nick's breathing was quite shallow but he was asleep and I felt he was no different to normal. As far as being lethargic he is always shattered and this I put down to having to cope with the spasms.

As far as I know the pump is continuous.

What really bothered me was the fact that he dehydrates very quickly and I can't communicate with him so he need intrav fluids. That has happened twice since March. One lovely doctor was so concerned about the limited knowledge they have of SCI, I went home with both his private home number and mobile. He then called several times over quite a number of days to check on Nick.

Thanks again, Simon

Regards, Ulla

Now are you any good with installing a SKYPE phone?????

[Apparelyzed]

Hi,

It could be his pump is not getting the baclofen to his spine, hence increased spasticity.

The inability to wake him, could be dehydration, coupled with him being drowsy from the oral baclofen.

If he'd had an overdose, he'd know about it, as you just have no energy, and feel really sick.

Get that boy a drink! (not beer! )

Sorry, I know nothing about IP Phones!

Simon.

[Nick's mum]

No sickness, only sick of his mum at the moment!

I am going with Nick to Stoke Mandeville armed with loads of questions and I won't give in or fobbed off!

My biggest problem is that I'm quite blunt and that with my inability to speak with a soft voice, unless I speak to a baby/child, can put people off. I do try but years of smoking have left it's mark.

You should get yourself on Skype Simon it will save you a fortune!!!

Best regards, Ulla

PS. Phone now installed!

[Nick's mum]

Update on Nick.

Went to Stoke Mandeville a little while ago and the outcome of that visit was intrathecal baclofen increased from 960 to 1000 microgram. No improvement!

They are not doing mylograms any more only x-rays. He had several pictures taken and it looks like pump and catheters are in situ.

We are now waiting for the radiologist report.

The doctor was really baffled as to why Nick's spasms are as bad as they are and agreed that they are not acceptable with a pump.

Nick's doctor is waiting to speak with his consultant re MRI. We have a return visit on the 23 July and this morning we had another appointment for the 8 October.

In the meantime Nick's spasms are getting even worse and I have great difficulty with getting him dressed etc. I am really worried that he won't be able to sit in the car as it's 100 miles to Aylesbury.

A friend of Nick is coming this weekend to help and I hope they will be able to go out somewhere even if it's for a short time only. Between showers!

Ulla xxx

[Nick's mum]

Update on Nick!

Well where do I start.....Nick is still not well infact he is even worse than he was before.

Have been to Stoke Mandeville again where the amount of Baclofen in the catheter between pump and tip was removed and measured. Perfect! It was given back as a boulous dose though and he had a couple of hours relief in the evening the next day.

Nick's life has changed dramatically as he now finds it impossible to sit in his wheelchair and he spends all the time in bed. His legs are crossing and he is squeezing the T-bar to death.

We have an appointment again on the 6th of October with his consultant and have been promised transport if he can't cope sitting in our car. The bed in the ambulance is so narrow though that he can't use the T-bar so he will try his best to go in the car.

Nick has finally been given some antidepessants that hopefully have some relaxing properties. He has only had 2 so far so we all live in hope.

The carers come in every morning just to sign the book!!

I do all the care myself 24/7 and it's taking it's toll but we have not been sucessful in finding suitable respite care.

We have put the extension on hold as we are still finding out what Nick's future needs might be.

I quite fancy leaving the country and settle in Australia.

Take care all!

Ulla x

[Picnic]

I don't have the pump but I'm on 30mg of Baclofen 3 times a day plus 50mg of Diclofenac 3 times a day. I'm also on 2.5mg of Oxybutynin once a day to control bladder spasms. I get muscle spasms daily but only minor ones. However I have experienced similar spasms like your son is having when I have a UTI.

I hope things get sorted out.

[Nick's mum]

Thanks Picnic!

Update!

We went to Stoke Mandeville yesterday and Nick has been given an increase in intrathecal baclofen from 1000mg to 1200 plus a 50mg one off dose so that he was able to travel home a bit more comfortable than he was on the journey down.

We were chocked but not surprised to learn that Nick has lost nearly 10kg since his last visit in August. He can't eat much because of the spasms in his abdomen and it's playing havoc with the bowel routine as well. Nick is suppose to eat twice as much as normal as he has Short bowel syndrome as well.

Hope you are all keeping well!

Ullaxxx

[Picnic]

Feel free to PM me if you want to talk more. I have had to cope with spasms my whole life.

This post has been edited by Picnic: 10 October 2008 - 10:41 AM

[Apparelyzed]

Hi Ulla,

Is the increase in his baclofen still working?

Was he ever given an MRI to check for a Syrinx?

Simon

[Nick's mum]

Thank you Picnic...will take you up on your offer and PM you!

Hi Simon,

NO! Nick has had his increase only since Wednesday afternoon. His muscles did relax enough for the journey home and we even managed to stop off for a meal. Spasms are now back to being as severe as they have ever been. Funny the 50microgram dose worked but not the 20% increase!!! Well not yet anyway!

Nick's hand is now affected as well (since Wednesday) as the fingertips dig in to his palm. My biggest worry is his weight! We have to resort to take aways/outs again as they "saved" his life and he put on some weight.

We have permission to go to Spain though...Simon could you suggest an insurance company that might accept Nick please. I have loooked for my oold files b ut have had a new hard drive so lost everything to do with insurance.

No MRI as Nick does not display any other symptoms!

Hope you are all keeping well!

Ulla xxx