weight gain - long, get a cuppa

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Hi, and help please!

Have sent a few emails back and forth lately, but I am going round in circles here, and wondered if anyone has either had to deal with my current problem with , or can offer some insight that I seem to be short of at present. 's neuro is away for a month, and our dietician, though really helpful, is getting as stumped as we are. Have to drag it out a bit to make sure I've explained everything, sorry....

started the diet in Sep, age 4, turned 5 in late November. I am going to talk in metric here, bear with me. He was 117.5 cm tall (95th percentile), and weighed 23.4 kgs (90th percentile). His weight at that stage was not usual for him, he was in the process of losing temporary excess weight from a recent steroid course. He would normally be between 21 and 22 kilos (50th -75th percentile) if not for the ACTH. His calorie intake of 1260 was calculated to bring him down to around 22.5 kilos (75th percentile), which he reached within a couple of weeks, and stayed there until Dec. Apart from some breakthrough seizures from toxicity, food sensitivities, drug weans and illness, (yeah, I know, but at least they all had a reason) he remained pretty well controlled seizure wise, only 1 or 2 early am sleep seizures which we were hoping to eliminate by upping his overnight ketones (somehow!)

Then came the 3 week hospital stay for status in Dec brought on by the chicken pox. He was on a midazolam infusion for the 3rd week, which broke the status, his EEG just before he came home was his best yet, no abnormal activity, normal background etc.

He was dicharged at his usual weight (for the 3 mths on the diet) of 22.6 kilos. Meds had been changed in hospital, epilim (depakote) increased from 600mgs per day to 800mgs, lamictal stayed the same at 90 mgs per day, nitrazepam was added (to wean him off the benzo infusion) at 10 mgs per day.

His first breakthrough seizure came on Jan 16th after a day at the beach, then one the next day after swimming. No more clinical seizures till Jan 25th, but we were suspecting sub clinical activity a lot of the time in between, seemingly worse when active Another full drop on the 26th after playing 'chasey', another on the 27th on the trampoline, obviously we at this stage were strongly suspecting he was lacking 'fuel' in some way, by way of calories.

The first accurate weigh he had that week showed he had gone up to 23.4 kilos, a gain of nearly a kilo in 3 weeks. We let it go, thinking maybe his lack of real mobility in hospital was showing a belated weight gain, and that being back to his active self would sort the weight out, and the apparently resultant seizures. The next week though, (Jan 31st) showed another gain, up to 23.65 kgs. The extra weight is evident in his stomach (hard, round pot belly) and around the face (puffy face and a slight double chin). Arms and leg remain fairly slim.

Bowel motions are certainly not often, but every 4 or so days, usual for him on the diet. His urine output is down, but he never has gone a lot, 3, sometimes 4 times a day. His Dr doesn't think he is retaining fluid, I'm not so sure, I think it may be a contributing factor.

Discussed all this with his neuro and dietician last week, agreed that this weight gain was probably why were starting to see loss of control as far back as the 15th of Jan. According to Freeman's book, for his height, his ideal weight for best seizure control on the diet is actually only 21.2 kilos (50th percentile on height/weight plotted graph). Possibly this is why we still had the lingering night seizures pre Dec, he was still back then at least a kilo over this mark. His calorie intake is also way inadequate for his current weight, probably why he was seizing more after activity.

Decided to try and get him back on track by doing a calorie reduction, down to 1200 on Feb 2nd, but spacing the meals from 3 a day to 4, knowing it would probably mean more seizures in the meantime, but hoping for a quick weight loss so we could start readjusting and raising calories once his weight was where we wanted it Not being unrealistic, we are aiming firstly to get him back down to 22.5 kilos, and seeing how he goes there. His height, by the way, remains unchanged at 1175 cm.

Control has, as predicted, worsened, as has his cognitive state. Don't think it is safe to let him go on at this level, I feel he is heading back towards status. A weigh today shows not only has he not lost weight, he is now up to 23.8 kilos!

The only change to account for this continued weight gain is his meds. Nitrazepam is a sedating drug, thinking it may have slowed his metabolism, and then there's the epilim. When he started this med at age 3 and a half, he gained nearly 3 kilos. His hair, which has always been curly, thinned slightly, and went really straight. This gradually resolved, he got his curls back, and he 'grew into the weight gain', no longer a 'slim' child, but not really overweight either.

The neuro says he doesn't feel the sudden increase of 200 mgs per day would cause this weight gain, as his body would be well used to the drug after a year and a half. I disagree however, as his hair has gone straight again, only since the end of Dec!!! If one side effect has come back with the increase, I think it is highly likely the other main one, the weight issue, has returned as well.

We are stuck with the meds at the mo, because his control is so tenuous from the weight and calorie issue, he would be in deep trouble I think if we start weaning. He is definitely over medicated, I believe toxicity is also coming into play, but I am too scared, I think, to reduce. The decline in him, though, 2 hours after his meds is incredible. For this reason we changed his dosage time last week of the nitrazepam, instead of 5 mgs morn and night, we have gone to 2.5 am, 2.5 pm, and 5 at bedtime. He started school part time last week, and we wanted him to have at least an hour before the meds took him away! It has helped slightly re the unsteadiness etc, but even changing the time of day, and not the dosage, has caused additional seizure problems as well.(we think) has always been incredibly sensitive to the slightest benzodiazepine change. We are therefore putting it back to how it was tomorrow (I think!) and leaving it there until the other end is sorted.

Trouble is, how do I get his weight down without changing the meds, if it is them that has caused the gain, and subsequent loss of control?

If anyone is still reading at the end of this, please send me your thoughts about what to do first. Options I can see are a) fasting for a quick weight loss??

putting calories up temporarily to where they would be for this weight at 65 cal per kg = 1547!!! and hope the weight gain stops despite this increase once his body adjusts to the increased epilm (if this is indeed the culprit), c) changing meds-putting nitrazepam back to where it was, and leaving everything all meds as is, or d) putting nitrazepam back and slowly work on the epilim instead e) leave nitrazepam where it is, 3 times a day, and hope this settles, and then decide what to do about the epilim, f) keeping the calories down at 1200, but lowering his ratio from 4:1 to 3:1 (a suggestion in Freeman's book for an overweight boy starting the diet)

I am well aware of the golden rule, only one change at a time, but in 's case, the meds and weight issue are seemingly intertwined, how can I do one thing at a time in a case like this?

God, I so wish we had started this diet med free!!!

Fingers are dropping off from typing, apologies again for such a long one,

Hill, mother to 5, 7, and 23 mths, in NZ