Spinal stroke — Reeve Connect
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Spinal stroke

Lj71
Lj71 Member Posts: 2
Hi, I’d be grateful for any advice please. My 12 year old son suffered a spinal stroke in December at T3-T5, the specialist have never found the cause and just prescribed a daily dose of aspirin. His consultant mentioned that he may be prone to autonomic dysreflexia, which has me really stressed and looking for symptoms regularly. Is there any sort of test that would confirm if he is definitely at risk? Also, the incontinence specialist told us he would never be able to empty his bladder naturally because the sphincter muscle wasn’t connecting with his nerves, so he learned to self catheterise and one week later felt the need to urinate and has been doing this naturally for a few weeks, however, the specialist has told him to use the catheter after the first wee and last wee at night because there is a small amount left in the bladder. After just spending 5 days in hospital due to a severe UTI that must have been caused by the catheter, I’m thinking that it would be safer to stop using the catheter altogether, seeing that the PVR is usually around 5-10ml each time. Surely the risk of infection from that small residue is a lot less than from using a catheter? The specialists want to give him a profalaxic antibiotic to stop any further infections, but I’m a bit against more tablets than need be. 
Thank you, Lisa

Comments

  • AskNurseLinda
    AskNurseLinda Moderator, Information Specialist Posts: 150 Information Specialist
    100 Comments 25 Likes First Answer Name Dropper
    Hi, Lisa, there are a lot of things to think about. First, let me assure you that you are on top of things. It is good to think about everything and ask why. So, you are on target. Take pride in that.

    There are so many reasons for stroke both in the brain and spinal cord. It is unusual for children to have a stroke but it does happen. I don't know your child but there could be several causes. A clot, which is unusual in children, but, again, can happen. A weak spot in the vessel wall, unusual but can happen. In children, an AVM (atrial venous malformation) is a likely culprit. This is a misconnection of the arteries to the veins. There are capillaries that make the connection but rarely, the capillaries are reduced or missing. The capillaries adjust the pressure of blood flow from the artery to the vein. When the capillaries are missing or less in number the higher pressure of the blood in the artery is not reduced to the lower pressure in the vein which causes a rupture. Once the rupture occurs, the missing artery to vein connection is gone so one never knows if that is the source or not. I have no idea if this was the issue your son had but it would be a suspect. I can only assume your son has had MRIs and no further AVMs were noticed so the cause will remain a mystery. If the AVM is not seen and is now gone, your healthcare provider would not be able to specify that this was the cause. 

    Autonomic Dysreflexia is an issue in individuals with SCI above T6 but can be found in individuals with injury as low as T10. It is an elevation of the blood pressure due to something going on below the level of injury that cannot be communicated or is interpreted by the brain. As a result, a full 'fight or flight' response is sent by significantly elevating the blood pressure. The pulse can go up or down. Since the exact problem is not understood by the brain, it sort of throws everything at the body. A classic sign of AD is a pounding headache however, many people have less dramatic responses. Use the Reeve Foundation wallet card to educate yourself and your son as to the common triggers and ALL of the symptoms of AD. You should have a blood pressure cuff so you and your son will learn his average blood pressure. Over time after SCI, blood pressure naturally lowers. Keep knowledge of his average as it will become lower so an elevated blood pressure for him might be a typical blood pressure for another child his age. Here is the information about the wallet card for children.  https://s3.amazonaws.com/reeve-assets-production/AD-Guide-Ped-5-18.pdf There is also an adult card for when he is older, which at age 12, will not be too much longer until he is adult size. Since many healthcare professionals (beside your son's professional who knows about it) might not be too familiar with AD, you and your son will become the experts. The wallet card explains the issue in a very nonthreatening way for other healthcare professionals. Most often the trigger will be urinary, followed by bowel impaction, then skin or pressure issues. But anything can trigger AD. AD can be triggered from within or outside of the body. The oddest trigger I know is the back lighting of computer use and TV.  Some AD is silent meaning there is no identifiable trigger but the blood pressure raises dramatically anyway. If your son feels odd in anyway, check his blood pressure and compare it to his normal. That will indicate AD. That is the test for AD. Remember, your son could develop AD, or not.

    Since the healthcare provider is thinking about AD, I will assume your son has a cervical or thoracic injury level. This is accompanied by a reflexive bladder. A reflexive bladder can be a risk for the kidneys as the bladder contracts sharply like with a spasm or what is now called tone (spasm/tone: same thing, new terminology). That would be what is forcing the urine out. Fortunately, he empties well although not completely. Therefore, catheterization has to be done to ensure complete emptying. As the body changes with SCI, if your son develops tone in the sphincter, it will tighten when the bladder contracts which will send urine back up into the kidney's leading to damage. This is a risk that just cannot be taken. Kidney damage is permanent. Therefore, the cathing in the am and pm. Yes, that 5-10ccs of urine can collect bacteria as it is stagnant in the bladder. Of course, it could be the catheterization process but since the catheter is removed after draining the urine, the risk is very low. It is safer to catheterize than to leave that little bit of urine in the bladder. I know this seems odd but it is true. The bladder management plan for your son is excellent. 

    I don't know when your son's spinal stroke occurred but the body is in spinal shock for about six weeks. That means everything is flaccid. Spasticity/tone is very low. Some individuals have less time in spinal shock and some have much longer. AD does not develop typically until spinal shock has resolved. The bladder changes over time. Due to your son's age, he might have a reflexive bladder and low sphincter tone now, but this is likely to change to a reflexive bladder with high sphincter tone. The point of change will be unknown as it varies. Urodynamic testing annually will help keep his urinary system managed. This will be very important for his health maintenance. 

    You do want to get the UTIs under control. If your son has not had a urodynamic test and he is out of spinal shock, request one. This will help understand what is going on in his bladder and may explain the UTIs. You might want to ask if there is any other approach to these UTIs that will work, such as increasing catheterizations or medicine management that would help expel that last bit of urine. Your son has such excellent care, that you should feel comfortable following  recommendations. But it never hurts to ask. It will educate you and your son even more. Nurse Linda

    I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.

    Leave a comment any time below. Let's get the discussion going!

    Nurse Linda

    Register for my next webchat! Sign up here!

  • AskNurseLinda
    AskNurseLinda Moderator, Information Specialist Posts: 150 Information Specialist
    100 Comments 25 Likes First Answer Name Dropper
    Lisa, I also intended to mention, you will need the blood pressure cuff for something else. At age 12, you son will be heading right into growth spurts. He may become light headed when moving to an upright position. Use the blood pressure cuff to detect orthostatic hypotension (OH). A sudden drop in blood pressure when moving to become upright. If this happens, lower him down and have him get up slowly, Your healthcare provided will order elastic stocking and perhaps an abdominal binder to improve positional circulation.
    Now, this may happen and it may not but something to be aware. Nurse Linda

    I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.

    Leave a comment any time below. Let's get the discussion going!

    Nurse Linda

    Register for my next webchat! Sign up here!

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