Where can I go to get support with my 3 year old who has SN/health issues?

[elliejjtiny]

DS4 is 3. He is an ex premmie who has 2 different but significant medical conditions and also global development delay so he has the understanding and motor skills of an 18 month old and speech is even younger. He has on average 4 general anaesthetics a year, mostly lumbar punctures but sometimes other stuff too, like grommets. It's horrible watching him go through that and I'm usually on my own because DH has to look after the others.

He's had 11 GA's so far, got 12th in October. He's usually really poorly for about a month before each lumbar puncture, headache, sleeping lots, really clingy and hates any kind of noise. We usually have a couple of good months, a month when he is slowly getting worse and then a really bad month before the lumbar puncture and it starts all over again. Our lives seem to revolve round these cycles. We've missed weddings and other family events because they've been in the "bad month".

I'd love to meet other parents who understand. But DS4 is rare and I haven't met anyone similar to him. We go to some SN groups but most of the children there have conditions that are more common like autism, adhd, dyspraxia etc. He goes to an SN playgroup but there is nobody like him there either. I don't need respite or help with DLA forms but it would be so nice to talk to someone who understands what it's like.

When we are in the hospital we are surrounded by children with broken limbs, having their tonsils out etc, all one off things. Every time I leave the children's ward I can't breathe a sigh of relief because I know we'll be back soon.

The proffessionals are all very nice, especially the play therapists and his paediatrician. But they get to go home at the end of the day. Does anyone know how I can get in touch with other parents of children who are similar to DS.

[Vipermisnomer]

You have come to the right place! Have PMd you OP

[FlissMumsnet]

Excuse this interruption but I just wanted to let the OP know that we've moved this thread into SN children as we think you'll find lots of support there.

[elliejjtiny]

Thankyou. So many people say I should be used to it by now and it must be easier. Practically, maybe it is. I know which toilets I can fit the buggy and me into, which café sells the best cake and where the recovery room is. But emotionally I feel just as scared as the mum of the child in the next bed having a one off operation.

[Kanga59]

my son is 2.5 and has a rare medical condition too. Lots of hospital visits and people to see. why does your.son need so many lumbar punctures under GA. If they cause so much pain and disruption, I would halve them. The docs were at one point, obsessed with my son's lactate level. very frequently testing it. doctors love numbers and results on a chart but if the number doesn't actually change treatment, was the point.

[Kanga59]

Are you having genetic testing? are there any charities which support your son's condition? what is the condition?

[elliejjtiny]

kanga he has mild hydrocephalus so the lumbar punctures are to drain off about 25-30 mls of CSF. We are seeing the neurosurgeon to talk about a permanent shunt next month. He also was born with a severe cleft lip and palate with all the extra bits that go with it like glue ear and severe speech delay. We don't know if the 2 conditions and the global development delay are a coincidence or an undiscovered syndrome. CGH microarray came back normal and we're waiting on the results from the DDD study.

zzzzz I usually bring my portable DVD player with me and watch an episode or 2 of something funny when he is gone. Before the operation I'm usually busy making sure he doesn't do fun things like flood the bathrooms, visit children in isolation and escape.

[elliejjtiny]

I'm in 3 separate groups on facebook, for global development delay, cleft lip/palate and hydrocephalus but never met anyone else who has a child with all 3.

[EyeoftheStorm]

I hope your DS gets a shunt soon. It sounds like it affects everyone's quality of life having regular lumbar punctures.

DS2 (7) has had a shunt for 6 years, so regular checkups, but no problems until this year. The eye doctor, who checks for signs of pressure on the back of his eye, saw one of the first signs and I was in such a panic that I didn't hear what he said/or blanked it and had no idea what to tell the neurosurgeon at the the follow up appointment.

The fear never goes away, like Zzzzzzz said, you just endure it. I try to push it as far back in my head as it can go until it needs to be faced.

Your DS has a lot going on and he's still small. I find it much easier now DS2 is older.

[elliejjtiny]

Glad to hear about your positive shunt experiences eye. I worry that having a shunt will cause other problems like epilepsy, infections etc. On the other hand he could be like he is just after the lumbar punctures all the time which would be amazing.

[EyeoftheStorm]

I agree with you that our shunt experience has been really positive and that there are lots of negatives that can come with it. But it will hopefully end the roller coaster of regular lumbar punctures for you.

I don't have any experience of GDD or cleft palate, but our family has lived with hydrocephalus for 7 years now. DS2 has sensory problems and probably dyslexia, so I do understand that feeling of 'isn't one thing enough?'