Also New - son is impacted

[Guest guest]

Hi Everyone,

I'm really glad to join you here. Quickly like to tell you a little

about my son Norman. He is 12yrs old, adorable, autistic, severe

epilepsy from 2 .5yrs (previously seizures ranged 70-100 p/day). Severe

learning difficulties, non verbal, a lack of myelin & chromosome 9p

minus. Has had difficulties with bowels since he was born and had 3

inguinal hernia repairs in first 2 yrs of his life, the first operation

at 2 weeks old.

Now on Ketogenic Diet for his seizures (since July 05) as numerous AED's

have not helped but only made things worse! Keto helped reduce seizures

by 50%. However I read about Vit B6 ant its therapeutic use in epilepsy

so I started him on it in Oct 06 and WOW, there was an amazing reduction

in the frequency of his seizures with days here and there free of Tonics

that have forever plagued him and the numerous head nods all but gone.

We have tried various things in the past from HBOT, AIT, Cranial

Osteopathy, TCM and each has done a little to improve his quality of

life.

We are now using biomedical approaches and as well as being on Keto, he

is also on LOD, GF/CF/SF and avoid anything artificial, all in all very

limited options for food.

Before all these diet limitations, Norman suffered huge bowel problems

and would go without opening his bowels from 7-14 days. His diet back

then, I would definitely say was full of vegetables, fruit and fibre and

has always drunk only water and lots of it. I know that he had all the

foods recommended to keep his bowels functioning but he still was

suffering. We have also tried various laxatives and the last one was

Movicol (Miralax), which appeared to shift the bowels but I think this

excerbated his oxalates or contributed to it. Eventually it stopped

being effective and I suspected that it may have been flushing out a

substantial amount of his nutrients as he has a very lazy gut and the

ketogenic diet was not as effective whilst he was on the movicol.

I need advice for this now... after recent severe pain in his abdomen

and a high temp. A gut motility test revealed bad impaction around his

pubic/pelvis area but aside from this the plastic pellets he'd swallowed

for the test are all still stuck on the right hand side and have not

moved along, and he has poo stuck all through his gut. His doctors over

here in the UK have advised a treatment plan of Movicol of 16 sachets a

day for 3 days and then an indefinite maintenance dose of 2 sachets

p/day. Not only am I shocked by this dose but I have held off using it.

I've been using Oxypowder and we are on day 5 of 4 caps every evening.

I'm worried because he has not shifted much except lots of liquid poo

(no lumps at all!) which I think indicates this is still the overflow.

His bm's are yellow and very runny (but also like acid and have bleached

his pj's).

I'd like to know if there is anything else that I have missed out which

may help. BTW, he is also on magnesium (magnesium citrate, ascorbate

and oxide combo) and takes 1000mg/day which is balanced by calcium in a

1:1 ratio.

I would love to hear any suggestions or comments on any of this.

emily (in the UK)