Cerebral Malaria

OK, I'm a mother, and not a neuro physio and I think I have read enough on the site to know we need the right input.

My son had cerebral malaria, were in a coma for just on 2 months, and as a complication, they believe that he had a stroke. What we were told and what the ct scans show, is that his occipital region and both parietal regions were kinda blown away. We are not in a country where sophisticated medical procedures are easily come by. End of this story is that they removed all life-supporting equipment and gave him 6 hours to live. This was 2 months ago. A further complication is that with the cerebral malaria, blood platelet counts were almost non-existent and coupled with sub-standard nursing, he developed very serious pressure sores. These are now being treated by a specialist wound person and they are under control and getting better. Up to know, we've been either battling pressure sores, or sub-standard nursing or something or other. In addition, he had a stomach tube put in for feeding. There was no time to even think of rehab before now.

So, after all of these emergencies, we are now home where we are concentrating on pressure sores, general health, nutrition, getting over the tremendous trauma, and impeccable nursing.

We have to get therapy. Our local town has one neuro physio and she is too busy to take on new patients. What we need to do is to bridge with the correct neuro physio until the pressure sores are in a state that a rehab facility will actually take him. I have input on speech therapy which I am following. We've been religiously doing the passive physio movements that they showed me in the hospital. But this is now not enough and I cannot get help in our town. How do we bridge the gap? What can I do, while his general state of health improves sufficiently to go to a rehab clinic?

Currently:
He has a trachea but does not need the oxygen excepting for wound healing and general oxygenation ... red blood cells very low after the malaria but doing good now .. just on normal.
He has a urine catheter. We think he has ability there but cannot figure this out with the catheter.
He let's us know when he has a need to pass a stool.

Movement - he can move his head, he moves his fingers, his forearms, his one leg.
Communication - He can see despite the ct scan analysis .. he follows with his eyes and we communicate by eyeblinks and frowns ..
He can swallow.
He smiles somewhat.
He tries to open his mouth when I ask him to.
His face is normal ... not down on one side as one usually sees with people that had strokes.
He thinks, he understands, he communicates.
He hears everything around him.
He has a sense of spatial relationships.
He does not speak, make noises excepting when uncomfortable when he calls us with a whoooooo ... remembers his name, my name ... indicates a full thinking and reasoning ability.

He is beginning to heal .. the wounds are healing .. getting the right nutrition and so on - but this will still take a few months.

Where do we start? When he is physically improved enough, I will go to a bigger center for rehab. But currently, he is still too weak and the wounds need to heal further. If I do passive physio on his arms, and they are tight, and I ask him to relax, he works to relax the muscles so that we can do the passives. It is clear that he is trying to co-operate.

I am a total novice but had to learn quickly. Where do I even start without knowledgeable therapists to help? I know, this is a huge big question, but our local area just does not have the resources. Any ideas now as to any kind of treatment protocol that a total novice can carry out will be much appreciated.

Hi calico

this is a very difficult position for you to be in. I do not have any experience in dealing with cerebral malaria as malaria is just not present in the countries I have worked in. However I understand that patients present much like following an encephalitis or somewhat like a traumatic brain injury (TBI). In contrast a stroke tends to be limited to one side. there is quite a lot of information on TBI so that is a good place to start. Brain infections and TBI can present quite similarly because both produce often diffuse problems throughout the brain although some areas will more much more affected than others.

In which case there is huge diversity of presentation and you have described many details of if his movement difficulties. I don't feel I can give you specific advice as that requires a physical examination - and a therapist really needs to do that.

However here are some general points:

• Great that you are keeping up the passive movements. One of the big things you can do at this stage is to prevent contracture. Unfortunately the movements are not really enough to prevent contracture and your son needs to have the joints in an anti-cntracture position for pronlonged time. Often this requires wearing of rest splints. I couldn't advise you on this for your son But I think if you could get just a one-off session with a physio who could advise you on the positioning that would be worthwhile. Once contracture has occurred it is very hard to reverse.
• Thinking about things at a functional activity level can guide you with things to do. For example can he sit up? (is this oke with the pressure sores? If the sores are on the buttocks covering the sitting bones this could be a problem. sometimes you can get around this by use of a blown up rubber ring or a roho cushion that can distribute the pressure away from the sore while he is healing) You may need help but if you can place him in sitting this can be good - He may or may not have the balance to cope with this in which case you may have to support him a lot of the time. When sitting try to get his feet so they are both fully on the ground and that he really is upright by being bent properly at the hips. this a good position to work on reaching and grasping objects with his hands and working on his balance. Having him upright may improve his level of consciousness and improve his ability to concentrate.
• Active exercises are better if they have a clear goal that he can achieve. So reaching for something that he really wants and is manageable is better than reaching for something that isn't there or is uninteresting. so make exercises to do with things one would do in real life.
• the exercises need to be graded so if it too easy it won't be challenging but if it is too hard your son will get overwhelmed and may get frustrated. If you can grade things so that you start off with something he can just do then think about how to make just a little bit harder.

I really can't give you more specific details because I just don't know what your son is currently managing

However I have included thre websites that might be worth looking at for ideas. the first two are more general sites. the last one concerns physiotheraoy exercises

http://www.ninds.nih.gov/disorders/tbi/tbi.htm
This is a reputable site for general information and has some good linkis

TBI Staff Training: Working with people with Traumatic Brain Injury
This site is very detailed and is written for health professionals but is about the whole team. It has been developed by a centre of excellence in managing Traumatic brain injury. However you may find it informative about common issues that arise and how to deal with these issues. There are lots of lectures, and handouts.


PhysiotherapyExercises.com

this site gives exercises for a number of neurological problems. It is designed for junior physiotherapists to increase there range of choices. However you may find it helpful for ideas.

You may want to register at the site - this will allow you to save exercises sheets and print them off.

Enter the site and go to the Search page. Select Traumatic Brain Injury from the first column. In the second column choose the types of activities you think you can realistically work on with your son. When you then display the exercises you get a thumbnail of the exercise but can also go into more detail with the exercises. A good thing about these exercises is that it often shows where you need to position yourself as the "therapist" in order to help your some complete the exercise

Thank you gcoe. I feel I have a starting point now. I am 'devouring' the exercises site and the other two are very valuable at this stage. We are paying attention to resting splints. Yes, he can sit and we lift him into a chair daily, slowly stretching the periods. I'll make sure that we work in a graded fashion. You have also helped with terminology as I question the 'stroke' terminology. Traumatic Brain Injury just intuitively feels as if it fits, although the category is more diffuse I think. (smiles .. intuition is all I have at the moment as I sure do not have the knowledge). Cerebral malaria give funny results on EEG's and I feel that 'stroke' was used in the absence of correct terminology.

So, now to searching out appropriate exercises and doing them myself first so that I have an idea of what I am doing. And off to speech therapy to ask some questions there.

No one could ask for a more loving mother :-)

Keep us informed of how you and your son get on.