Thanks to all who emailed me asking why I’d stopped blogging. Its cos I’m a lazy mare really but will (hopefully) start wittering on again soon.

Celyn is still with us although we’ve had a half year of trying to control her epilepsy

She’s off to mainstream school in September with the norms (stick that in your pipe Mister neonatologist ‘oh, she’ll be a vegetable’ man) so I’ll rant on about what a battle that was and invite all and sundry to picket South Glos LEA offices cos they are all wankers.

And my potty-mouth hasn’t improved any.

Off to Hesfes in 2 weeks time with Celyn which should be fab.

http://youtube.com/watch?v=AuJrEBtmM1Q

From ‘Not Dead Yet’

Cant reprint it here cos I don’t have permission so go read…

http://www.notdeadyet.org/docs/ervinequalityhumor.html

Just been reading medical studies on life expectancy for kids with cerebral palsy. Because Celyn’s CP is of the severest kind - no rolling, no sitting, no hand function plus her seizures she only has a 50% chance of getting to 20.

Gawds.

Still feeling sick about yesterday. If we hadn’t checked the chances are Celyn would have fallen alseep. We’d of breathed a sigh of relief and gone for coffee, assuming she had been tired and when we would have returned she would have been dead.

Her temp was up last night so they think this new screaming is caused by an infection but they can’t find where. Urine was meant to be checked but no nurse came and retrieved the nappy pad despite us asking about 8 times and eventually waving it about - then it was ‘old’ and ‘contaminated’. Sigh

Today I will demand our drug bag back and keep it ourselves. Agianst hospital rules but I don’t give a stuff. They are so stupid too. Celyn is allowed 2 doses of 0.3 ml’s of sedative a day. Total 0.6 mls. But we found 0.1 ml sends her to sleep and so have been doing that. Yesterday she needed some in the afternoon but because she’d already had ‘2′ doses they refused despite patient explaining that she’d only had 0.2 mls so far that day and could have up to 0.6 mls.They just kept repeating ‘but she’s had 2 doses’

So today I will takein our spare supply of the sedative and we’ll do it our way. This stupidity happens all the time and no amount of explaining gets through. Sometimes a doctor will agree but they disappear and the nurses just wont listen.

But I will get our supply of Celyn’s meds back claiming I’m going to take it home and they can use their own supply. Thismeans we get control of her meds and can deal with it ourselves - they forget to bring her meds too. Bloody anti-epileptics too, which are vital. How the fuck can they forget?

Heard the song ‘yesterday’ and ended up in tears. 3 weeks ago Celyn was healthy and happy and things were looking up. Nows she’s very sick and the future looks bleak. This time last year I had 2 daughters at home. Now I don’t have any.

House is a mess, there’s no food and the other kids are neglected. DH and I are struggling alone with this.

Today they tried to kill Celyn at the hospital. Nurse brought in 2ml’s of her blood pressure med rather than the usual 0.2 mls. Luckily for Celyn we always check doses.

Sheesh.

Celyn managed a tiny smile this morning and lay on me quietly having a cuddle for a whole hour before she started screaming again. The docs have found glucose in her urine and a high blood sugar reading. One of the side effects of ACTH is diabetes so she might need an insulin injection. Her blood pressure remains high and they sedate her for the afternoon now. Last injection tomorrow then she switches over to oral steroids (prednisilone) to start her wean. I’m hoping she’ll satrt to feel better by the weekend but her BP and urine willneed monitoring for another couple of weeks. The community nurse can come to the house and do that so hopefully Celyn might be allowed home at the weekend. Next week will be an EEG to see if this drastic treatment has worked. If so then it would have been worth it, if not, then I don’t know whats next but I do know I wont put her through that again.

She’s also lost 2 pounds in weight. Usually kids on ACTH pile it on but Celyn hasn’t eaten since last Tuesday, just drunk some milk. 2 pounds is a lot when you only weigh 22 pounds at 3 and a half.

Today Celyn barely knew who I was. She’s now had 4 shots with 3 to go. She is screaming 23 hours a day, a high pitched inconsolable cry. Nothing works to stop it. She isn’t eating or drinking. Its awful. I feellike I’m torturing my child. How can she do another bloody week?

Her blood pressure is sky high so they want to medicate that. They want an IV drip to hydrate her and she’s on Zantac to prevent gastritis and ulcer from the steroids.

I’m in such a state now, not knowing if we’re doing thr right thing:-(

Celyn had the first injection on thursday evening and one again today (saturday evening). She’s a bit grumpy but that might just be cos she’s in hospital not at home. We took her out for a long walk today down to the Organic fayre which she seemed to enjoy.

Questioned the doctor to within an inch of his life and he pretty much said he doesn’t know if she’s going to get LGS or not but its so serious we have to do this steroid course. There’s not a lot (if any) research on what brain waves look like in brain damaged kids without seizures and most kids with LGS are diagnosed cos they’ve had multiple seizure types (tonics, atonics, absences, myoclonics and status) plus mental regression. So they get an EEG, the spike slow wave pattern is seen and the diagnosis is made. So no-one knows if background slowing and spiking could be benign in a damaged brain or if its the EEG pattern that causes the retardation or the seizures or heck, even the major drugs they throw at this condition.

There’s 3 related conditions that show a spike/slow wave pattern. LGS, Landau-Kleffner syndrome and ‘Continuous slow wave of sleep’. All 3 cause mental retardation in previously normal children and all 3 start about 3. Some neuro’s think they are the same thing, others don’t.

So now its wait and see. The steroid will make Celyn lose skills and regress (like any toddler who loses a few skills when they get sick). Will she regain them afterwards? I don’t know. Will this stop LGS devloping? I hope so.

I just wish we had a normal life without this crap. To do normal every day things like go on holiday or go out sometimes. To not worry that my daughter will lose everything. To have a boring, normal, everyday kind of future