HYPOXIC BRAIN INJURY

[mommyofnathan]

Hi, I have a 2 1/2 year old son with severe brain damage following a hypoxic injury when he was almost 5 months old.  He has been for numerous tests, treatments etc in the beginning and was on more anti-seizure medications than I could care to remember.  He suffered frequent aspiration pneumonias and was finally fitted with a feeding button.  He has been weaned of most of his anti-seizures meds (apart from one) and has been out of hospitals for a year now.  We care for him at home.  He gets PT but despite our best efforts, still hasn't regained head control.  Apart from some movement in his arms, he is mostly paralised.  He is extremely floppy and has spinal deformities already.  Anyway, long story short... He is a social kid and laughs and babbles in baby language and smiles often.  He is however very moody and moans and complains about something most of the time.  He also hardly sleeps.  Any advice (drug therapies for sleeping is currently only Chloral Hydrate which occasionally works) will be appreciated.  Sleep is a problem as well as his irratibility.

[JainMD]

Hi,
I am sorry that your child has to go through all this.
I would like to know what that one medicine he is continued for seizure is.  Is it phenobarbitone? If yes, I think that needs to be stopped as this causes hyperactivity in child.
As for his sleep you can use Trichlofos, it’s given orally and it’s available easily.
I am not sure whether you would get it without doctor’s prescription.
I would be interested to know about your child's disease progression and treatments.
Bye.

[mommyofnathan]

Thank you for taking the time to reply to my question.  The only anti-convulsant he takes now is Sodium Valproate (Epilim) 5ml three times daily.  He hasn't had a seizure since February.  He was on phenobarbital early on in this whole ordeal but it was weaned shortly after it was started ( He was on a 90mg dose and was nearly comatose!!!)  I put up a fuss and it was changed to Epilim, later added Lamicten and Sabril.  It seems as his brain started to "settle"  the seizures subsided.  I will ask for a prescription from our GP and give it a try.  Please hold thumbs, I haven't slept in weeks (Starting to see spiders )!!

  

[mommyofnathan]

Hi,  The active ingredient in Trichlofos is Chloral Hydrate - which only occasionally works.  No luck there...  Any other suggestions will be great!  Thanks

[JainMD]

Hi,
I meant was Pedicloryl syrup which contains Tricoflos as the agent. You can try giving him Phenargen which is an anti-histamine causing sleepiness in children.
Hope this will help.
Bye.

[mommyofnathan]

Thanks alot!

[MidwifeMom]

Maybe you could try benedryl which is also an antihistamine.  We have a medication (for colds) here called Dimetapp.  It really snows my other kids, but I would check with the physician first.  Is there anyone that can come over and give you a break so you can get some sleep??  It sounds like you need some support and down time for you.  Do you belong to a church that could ask for volunteers?  Where do you live in South Africa?  Is Rustenberg close to you?  Is there any  respite care services there?  Any family members that could assist you?  Good luck.  You are in my thoughts...

[mommyofnathan]

Yes we do have Dimetapp.  I will suggest that to his paediatrician (dosages etc.)  I work fulltime and he has a nanny that looks after him in the day.  Nightimes however, he is my problem.  No, that sounds terrible.  The problem with volunteers is that because Nathan gets seizures and has a feeding tube due to the fact that he cannot swallow and the fact that he also can't swallow his spit and phlegm, makes him a bit difficult to look after.  He regularly require suction and nebulising and off course the bowel movement issue!.  You don'n need to be a rocket scientist to feed him, butit does take some practise to get it right.  Very few people offer a second time to look after him and frankly, I don't blame them.  My mother-in-law runs away at the sound if his cries so no help there and my own mother cannot deal with the emotion that goes with it.  I have approached the Hospice to ask if I could train there staff in caring for him and I am awaiting their decision.  Problem there is a staff shortage and respite care are priviledged to those actually dying!  Anyway,  thanks for the advice.  I have sent an email to our paediatrician and will let you know if it works.  I live in Cape Town and Rustenburg is about 1400km from here.

[hkjordaan]

hi thoght i had problems. do yo see doctor shlegel in cape town. i live in sedgefield and i have a 4 year old that is cerebral palsy in 4 limbs, and has started with fits in her sleep. now she is screaming when she is not asleep. love to talk to yo more. greeting from the s/cape

[mommyofnathan]

Yes, she was amongst the doctors we saw.  We are not with her anymore though.  I am sorry to hear about your daughter.  The seizures are terrible I know.  The sad thing is that you get used to them after a while and it seems just another normal activity!  It has now been two years since my son actually slept at night and stimulation is difficult during the day because something is forever bothering him.  His good times do make up for the bad ones and he makes my heart melt the minute he flashes me a smile.  Anyway,  it helps to know that there are other people also living this way!  

[MidwifeMom]

Saw on the post you are sleeping!!!  YEAH!!  Hope you and nathan are well.  Grant is hainging in there.  We go to a specialized CP clinic next week.  I am in counseling and trying to cope with the diagnosis, it has been almost 6 weeks since the final verdict!  I guess it is getting easier.  I have learned, Life goes on....... Michele

[mo25]

I saw that you said when your son was on phenobarbital he was on 90mg at the age of two and he seemed comatose? I have two daughters with CP and not once was any of my kids on 90mg. That is just way too much, there both on 20mg and my oldest is almost 4yrs. My youngest daughter also has a G-tub and is on many medication, she is about to have her third surgery (hip surgery) and we just found out today that she has sleep apnea and she is only 2 1/2. So I know what you are going through times two, but you know what it does not matter cause they are my girls and I love them to death. It's like you said you don't have any one to help you take care of him, so think about it this way when those days get too hard, if I don't do it who is? Remember your not the only one going through this. And I know your son you said is not sleeping, I know you tried a lot of different medication but how about you try some soft bedtime music ( MY KIDS LOVE IT), a bath before bedtime (or just a wash up) with lavender sent, and a teady bear to hold (another favorite of my kids). Those are just some things you can try if you haven't already. Good Luck