Harry's Journey

Please read the following information:  The information here is based on our experience with Harry and is not intended to give advice or guidance to anyone else. Our experience has taught us that even children with the same epilepsy syndrome have reacted differently to medicines.

Pyridoxine (Vitamin B6)

• still being used: No
  
• effectiveness: Neutral
  
• comments: We tried this before Harry tried any other drugs.We started it on a Friday and he only had one seizure on the sunday. From monday seizures increased again. Kept him on it for 2 months then took him off it.

Carbamazepine (Tegretol, Carbatrol)

• still being used: No
  
• effectiveness: Negative
  
• side effects: Harry went from 4 seizures per day to over 60.
  comments: It was a night mare time for us

Phenobarbital

• still being used: No
  
• effectiveness: Neutral
  
• positive effect: Stopped seizures when first loading dose was given. However after loading dose, affect was neutral
  
• side effects: He was very drowsy, but he was only 13 days old-4mths old so he slept a lot anyway

Vigabatrin (Sabril)

• still being used: No
  
• effectiveness: Positive
  
• positive effect: This stopped Harrys seizures for four days. We were so Happy and thought we had made some progress.
  
• side effects: Seizures started again after four days. Tried it for 14 days but took him off it in the end.

sodium valproate (epilim)

• still being used: No
  
• effectiveness: Negative
  
• side effects: seizures increased again.
  
• comments: We have vivid memories of the time on this medicine. It was the brightest red you have ever seen and Harry used to projectile vomit it over anyone in his path.

Phenytoin (Dilantin)

• still being used: No
  
• effectiveness: Neutral
  
  

Diazepam (Valium)

• still being used: Yes
• effectiveness: Positiv
• positive effect: If we give it early enough it can sometimes break a cycle of seizures and allow Harry to sleep.
• side effects: If not given soon enough it just makes Harry drowsy and the more he tries to sleep the more seizures he has.
  

Nitrazepam

• still being used: No
  
• effectiveness: Negative
  positive effect:
• side effects: Harry quite floppy and drowsy.
  
• comments: STOPPED THIS MEDICATION EARLY IN 2005. HARRYS SEIZURES BECAME INCREASINGLY WORSE AS EACH DOSE WORE OFF. COULDNT WAIT TO TAKE HIM OFF THIS DRUG. WE HAD A HORRIBLE TIME WITHDRAWING THIS MEDICINE.

Stiripentol

• still being used: Yes -500mg morning and night
• effectiveness: We believe that like the other meds, this one worked in the beginning but the effects were short lived
• comments: Harry is still on this Med but we will be weaning Harry off it soon .Harry stopped this medicine in July 2007.
  

Levetiracetam (Keppra)

• still being used: Yes
  
• effectiveness: Positive
  
• max. dose: 700mg per day
  
• positive effect: Reducation in seizures and an increased alertness and awareness of his surroundings initally, although we do believe that again the effects were short lived
  
• side effects: none

Chloral Hydrate

• still being used: Yes
  
• effectiveness: Positive
  
• max. dose: 1500mg
  
• positive effect: This was prescribed to help Harry get to sleep and it works really well at the moment.
  
• comments: We have found that this also reduces the seizures that harry has when trying to sleep

Midazolam

• still being used: Yes
  
• effectiveness: Positive
  
• max. dose: 10mg
  
• positive effect: This is a rescue med and works well as long as it isnt used to often. when harrys cluster seizures occur it loses its affect
  
• side effects: He wakes up very 'grumpy' in the morning and is quite difficult to pacify
  
• comments: This is administered into the buccle space in the cheek so is a better medicine to give than rectal diazapam

12    Triple Bromide

• Still being used:  no
• effectivness:        no affect on seizures
• Max Dose:         Didnt get to max dose due to side affects
• Positive effects:    none
• Side effects:        see below
• Comments:        This medicine caused Harrys SATS to drop to 87-89 and he was very ill and sleepy while he was on it. The Drs were not convinced that the medicine was to blame but as soon as we took him off it his SATS and breathing returned to normal.

                     Topiramate

• Still being used: Yes
• Effectivness:     Yes
• Positive Effects: Seizures appear to have reduced dramatically....watch this space
• Side Effects:  Sleepy at first but fine now. 75mg twice per day
• Comments:     This medicine, used with Keppra, has had a dramatic affect on Harrys seizures and he actually goes some days with out having any!!

 

Baclofen

• Still being used: Yes
• Effectivness: Dont think its had any affect on Harrys stiffness
• Side Effects: None
• Comments: This medicine was started in July 2007 to help with Harrys increased stiffness and pain episode. We are now up to 20mg per day but it does not seem to be helping.

Alternative Treatments (in chronological order)

1. Ketogenic Diet
   
   • details: MCT version of the ketogenic diet.
     
   • still being used: No
     
   • effectiveness: Positive
     
   • positive effect:  He had a redcution in seizures, from about 50 per day to about 5 little facial seizures e.g eye jerks. Anyone who wants info on the keto diet, check out www.matthewsfriends.co.uk
     
   • side effects: no side effects
   • comments:   Harry was taken off the diet in February 2006 this year due to severe diahoreah and weight loss. His seizures definatly increased when we came off the diet.
   
   
2. hydrotherapy
   
   • details: We have a hot tub in a log cabin in the garden, harry loves to float in it.
     
   • still being used: Yes
     
   • effectiveness: Positive
     
   • positive effect: Harry immediatly relaxes as soon as he is in the water. His limbs go floppy instead of stiff and he is very peaceful
     
   • side effects: none
     
   • comments: One of the best treatments we have ever used for Harrys overall wellbeing
   
   
3. Multi vitamins
   
   • details: Harry has a daily multi vitamin and omega oil capsule
     
   • still being used: Yes
     
   • effectiveness: Unknown
     
   • comments: Only just started giving Harry this 'treatment'. His vitamin levels are montitered regulary with blood tests.
   
   
4. Pro biotic
   
   • details: Harry has regular courses of a pro biotic supplement in an attempt to stop the dihoreah.
     
   • still being used: Yes
     
   • effectiveness: Positive
     
   • positive effect: Does seem to have reduced the severity of the dihoreah.
   
   
5. Massage Therapy
   
   • details: Harry has a daily massage with essential oils that were mixed for me by a qualified aromatherapist. He has his arms, legs and shoulders massaged
     
   • still being used: Yes
     
   • effectiveness: Positive
     
   • positive effect: This really relaxes harry. He has this after he has had his daily hydro therapy and bath time. so by the time he is massaged he is dropping asleep. This combined with the chloral works well
   
   
6. Brainwave exercise programme
   
   • details: we attended the 'brainwave' institute and was given a programme of specialised exercises to follow.
     
   • still being used: Yes
     
   • effectiveness: Positive
     
   • positive effect: He is retaining the movement in his muslces and limbs and has not got much tightness.
     
   • comments: we have not been able to do the programme as intensly as it is supposed to be done due to harry being ill alot. Although we have not seen the progress that we would have liked, it has made a difference.
   
   

G-Tube Placement (Gastrostomy Tube)

• details: Harry had his G Tube placement in april 2004
• surgery date: 20/04/04
• effectiveness: Positive
• positive effect: This is so much easier than the naso gastric tube

Mickey button

• details: Harry had his G tube changed to a mickey button
• surgery date: 20/02/06
• effectiveness: Positive
• positive effect: Much better than having a tube hanging permanantly

Bowel and intestine biopsy

• details: Exploration of the bowel and intestine, and biopsies taken of both due to chronic dihoreah and drastic weight loss
• surgery date: 20/02/06
• effectiveness: Neutral
• comments: Nothing was found on the biopsies and harrys dihoreah continues

Vagal Nerve Stimulater

• Details: Vagal Nerve Stimulater fitted in an attempt to control seizures.
• Surgery Date: 04/07/06
• Effectivness: Once this was up to a theraputic level it seemed to be working well. However, it had to be switched off for Harrys fundoplication and we do not seem to have regained the control that we had previously.
• Comments: We are glad that Harry had this operation and we do feel that this inconjunction with his current medications have given him the reduction in seizures that he enjoys today

Fundoplication