drugs for 8 years old boy suffering ALD

Hello!

My son a year ago was diagnosed with ALD. The disease progressed rapidly, now he already is in a vegetative state. He suffers from seizures, the most part of the time he is crying ... Medicines we used to give are 10 mg hidrocortison, clonasepam 4 mg per day ... It seems that he at this medicine is used and they are no longer help.Share, please, what medicines you are taking to alleviate the situation.

Thank you!!!

10 Replies

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  • Hi,

    My name is Suzi, I have a 16 year old son called Isaac. Isaac was diagnosed with ALD 8 years ago. I am sorry to hear about your son having the same condition. I would like to help however i can with the experience that I have had with ald.

    A few questions.....

    How old is your son?

    How much does he weigh?

    When you say vegative state, as in nothing there anymore?

    How are your sons limbs, are they relaxed or ever get locked or tight?

    The medication my son is on is quite a list however these are needed to keep him comfortable and out of any pain as many ald children suffer from pain with tight limbs and muscle spasms which is extremely painful and also trapped wind and acid reflux which is also incredibly painful for them.

    I vent my sons feeding and medication tube at least 10 times a day to release any trapped wind and see the relief in his face when this is done.

    A list of his medications:

    10mls of GAVISCON twice a day after morning and night feed to help with wind and acid reflux

    25mls of DOMPERIDONE 3x a day again to help with wind and acid reflux

    8mg of DIAZEPAM 3x a day to relax muscles

    25mg of TETRABAZINE 3x a day to relax muscles

    20mg of TRIHEXYPHENDYL 2 x a day to relax muscles

    5mg of HYDROCORTISONE 3x a day to support adrenal gland, this is doubled when my son has a cold or cough and tripled when has sickness or diareah

    8.5mls of KEPPRA 2x a day for seizures

    1mg of GLYCOPYRRONIUM 3x a day for drying up his secretions

    ELEMENTAL 028 EXTRA is the feed isaac has,this is a easy to digest feed

    2x scoops of OPTIFIBRE in his feed to prevent constipation

    6.9g x 2 sachets of MOVICOL to help move his food down when in stomache so he can go to the toilet properly (in his nappy)

    Isaacs weight is approx 38 kilos.

    I have been joined to this site for years now but have never used it, as you know our sons conditions are a full time job but when I saw your mail pop up I instantly had to reply.

    Please use me for whatever you need as I feel I can help.

    Can I ask why you think that your son crys, do you think that it is pain or something else?

    Suzi xx

  • Hello, Suzi !!!!

    Thank you for the quick reply!!! I am sorry to read about your son ... 8 years ago was diagnosed with ALD ... You're a very strong mom, God bless you !!!!! My son was diagnosed with ALD one year ago, I think we just understand each other, how emotionally hard it is to accept this disease!!!!!!

    My sun is 8 years old, 22 kg weigh. We are feeding him through the abdomen (I dont know haw to say in english)with special food. You understand what I mean...His vegetative state means that he is just in sleeping position, he does not speak, does not hear and does not recognize anyone... So we do not know whether he hurt or not... I have noticed that hi is crying after feeding, he cries before going to toilet properly (in his nappy) and when he has seizures.His limbs, after clonasepam, are relaxed, but sometimes does not help anything - they get locked and tight, then he is sweating and crying and I cant help him!!!!! Doctors in my country say that he has no pain, but I think that it is not so...

    Yes, the medication your son is on is quite a list!!! OMG is it our future? God help us to get thru this!!!!!!!!!!

  • Hi Zane

    My son Isaac many years ago seemed to be in a lot of pain, no one knew what it was or why. After months of research and experiencing the difficult and uncomfortable times with isaac I soon got to know that it was due to pain. A mothers worse nightmare!!

    Most children

  • Most ALD children that are tube fed suffer from terrible trapped wind. This can be released by venting the tube to release any wind that is trapped. If you are not sure how to do this then please ask me to explain.

    Having your son laying flat on his bed, bring his knees up and rock them gently side to side, this should alleviate pain in the tummy and feel soothing and encourage movement for the bowels. The Optifibre and Movicol added to your sons feed should also help.

    For the tight and stiffening of your sons limbs, this also would cause pain to him. Isaac suffered terribly with dystonia where messages from the brain to the muscle would not work properly causing tight and locked limbs. The only way to help this is to stretch the limbs out and give medication for this ie diazepam & tetrabenazine or trihexyphenidyl. Your son would not need as much as Isaac as he is a lot lighter than Isaac.

    We had months and months of Isaac crying, screaming and being terribly uncomfortable. The thought of another child going through what my son had to as no one could explain what was going on and why, is heartbreaking so I hope what I write helps.

    Please trust me that it is extremely likely to be trapped wind and a form of dystonia.

    If you need any more advice please let me know. If your sons consultant doesn't listen to you or just doesn't understand your sons needs then I am happy to email him explaining my sons experience and also could ask my sons consultant to email yours.

    Suzi xx

  • Thank you, Suzi!

    Would you tell me something more about trapped wind. You say that this can be released by venting the tube to release any wind that is trapped... I dont understand how is it?

    Yes, we are doing this - bring his knees up and rock them gently side to side, it helps!!(sometimes) I will ask doctor about Optifibre and Movicol, diazepam & tetrabenazine or trihexyphenidyl!

  • Hi Zane

    The tube that we feed and put Isaacs meds through is called here a gastro tube which is attached to Isaacs tummy. It has a clip at the end of the tube. Isaac is best vented when laying on his back and stretched out nice and tall and straight. Taking out the plunger from a large syringe, attach this to the gastro tube and unclip the clip on the tube. Pressing gently on your sons tummy, this should release any trapped wind he may have, you should hear the wind release, once this is done re clip the gastro tube.

    Please let me know how you get on and if it helps

    Suzi x

  • Some questions - when should I do venting - before or after feeding? I tried to do as you described, I took out the plunger from a large syringe, attached this to the gastro tube and uncliped the clip on the tube, pressed gently on tummy - one little gas came out, then the water from his stomach. I tried to find on youtube tube venting tutorial, mabe you know where I could find video?

    Thank you Suzi!!!

  • Morning Zane,

    On YouTube there are some short videos on 'how to vent a G tube' . This should help you, one lady is on there winding/venting her daughter, she gets her daughter to roll one side to another, this is not nessecary as the longer you have the clip unclip you could risk more air going into your sons tummy. I vent isaac quite a few times a day as I know that trapped wind can be painful. Before and after a feed is best and anytime you think would be helpful to him. I find laying isaac down flat gets the most wind out but I always have isaac sitting up in his wheelchair when feeding, never laying down and always wait half an hour after his feed finishes before laying him down to prevent sickness.

    Isaac has 3x a day DOMPERIDONE to help with trapped wind and acid reflux and GAVISCON always straight after his feeds to help with acid reflux as this can be painful for them too.

    Let me know how you get on.

    What is your sons name?

    Hope you are both doing ok xx

  • Good morning, Suzi!

    I think I have learned, how to vent a G tube! I found video on youtube. I had no idea, that G tube should be vented, before you told me so! So thank you , Suzi!! I would like to continue to communicate with you thru e-mail, what you say? My e-mail addres is zbramane@inbox.lv

    Zane

  • Hi,

    I just came back home from almost 2 months hospital admission for my 8 years old ALD son whom having high fever and seizure last March. Since then now my son only being feed by NG thru nose and medication his prescribe now to ease any pain and avoiding seizure are,

    Clobazam

    Keppra

    Omeparasol

    Vallergan

    Those medication makes him relax and sleepy and during hospitalized, when the fever strike and the spasm can'take settle, the doctors give him Midazalam shots to make him calm and sleep immediately. It'd hard and totally hurts to see him been given so many 'high' medication but I can't do much to help him ease the pain :(

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