Monday, 1 August 2011

Cerebral Irritation

Every so often Noah goes through periods where he is super, super cranky.  When he was younger he used to be settled, and would then be cranky for up to a few months.  It is physically and emotionally draining to listen to him yell ALL day long, but I try to take a deep breath and think that if it's draining for me to listen to, then how does he feel as he is the one going through it.

It's usually because he has cerebral irritation or so we think.  It is so hard to know, but after ten years we just know that he goes through these periods, and then after weeks and weeks of med changes, and lots of yelling he settles down again.  We first of all have to rule out everything else - whether he could be constipated, does he have a UTI (urinary tract infection), sore throat, ear infection or a broken bone. Once we have ruled out everything else, then we usually put it down to him having cerebral irritation and assume he just has a major headache.

When he's like this he also has an increase in seizures.  He has seizures every single day, but when he is like this he usually has a lot more  - up to 30 or more a day, and then even in his sleep he seems to be in a constant state of seizure activity.   On the upside we are lucky now because we actually have something to help him settle down.  Before we would give Panadol but it was just like giving him water, and it did nothing to help.  Since he had his first broken leg a couple of years ago, we now have stronger pain killers which we can give at any time.

The past couple of weeks Noah has been cranky on and off.  He seems to have a really bad day and then the next day he is totally fine again, or he may have two good days and then a cranky one.  On Sunday morning around 3.15 am I woke up as I heard Noah wake (he sleeps in our bedroom). His breathing always changes when he starts to wake, which wakes me up.  I'm used to him waking in the night and it's usually my cue to go to the loo :)  I went to the toilet, and then went to check on him and noticed he had a very strained look on his face, and his arms were very tense.  He doesn't usually cry in the night, but then he just started screaming down the house.  I knew there was no way he would settle quickly, so we shut all the boys doors so they didn't also wake and ended up bringing him into our bed with us.

He literally hasn't slept in our bed for maybe 5 years or more.  It was a lot different this time round as he isn't so easy to just cuddle and rock because he is just so big now.  It took him over an hour to go back to sleep. 

The next day he woke up and was totally back to his normal happy self again - even giving us lots of smiles during the day.

Aaron got him up this morning, so I could get him ready for school and within a minute he started yelling again.  This went on for a couple of hours. 

video
He's now peacefully sleeping and hopefully when he wakes up he will be more settled for the rest of the day.  We have rung his paediatrician Dr B. and we will be seeing him again tomorrow, even though we just saw him a week ago.  We changed his meds last week, but he obviously needs another change and hopefully it won't be much longer before we find something that works and he is back to being settled all the time again. 

5 comments:

  1. poor Noah... must be so hard for him when he cant tell you where it hurts him.... hope the doc can help get it sorted for you Lisa...

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  2. Poor Noah. Its hearbreaking listening to his crys! I hope his meds get sorted out soon, it must be horrible during these periods :(

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  3. Our daughter also suffers from cerebral irritation; she has an encysted fourth ventricle, pressing on her brainstem (which has suffered a large degree of atrophy) and we have used Fentanyl patches during the last two and a half years. She has a period of 6 - 12 weeks after a patch increase where she is relatively settled, then becomes increasingly irritable, so we increase the patches to cover her pain needs. She regularly suffers from severe headaches, usually at the back of her head, but at times the irritation seems to be all over her brain, and at those times we see problems with her vision, swallowing, speech and sleep patterns. I hope you can find a way to ease his pain.

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  4. Lisa, its me Nancy Ring i cant imagine how very difficult this is for you. I wish I had some ideas but you know hydran kids they write the book on new problems Love you and kiss Noah for me

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  5. OMG!!! My 6 months old son has been the same since he was born, we've been in hospital for 3 months because we just can't handle at home, plz! I would really like to talk to someone that went through this!!! Plz contact me! I'm from Australia , my e-mail address is ester3162@hotmail.com... Plzzz. Oh my name is ester.

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