Thursday, 2 June 2011

doctor zhivago

The Health Visitor came to see us earlier this week. She confirmed that Nenna's speech development is lagging and her co-ordination and mobility is, too. She set out what is a likely train of events:

1. Speech therapy and Occupational therapy
2. A Paediatric appointment in late September (already booked) which will involve more muscle tests and blood tests for genetic problems. If these are negative, which is likely, we move on brain-stuff. A CAT scan seems unlikely to be helpful at this stage as any damage would be too minor to really *mean* anything - I am unclear about this, but I can see the logic of treating her with ST and OT and hoping the plasticity of the brain rewires itself around any problem. This is unlikely to be moved any earlier unless B or I really flip out, as her condition is not life-threatening.
3. If at age three, she still needs more supervision than a child of the same age should need, we will be able to claim more tax credits and possibly disability living allowance for her. This will help us as we were planning to change both children from their (FANTASTIC) nursery twelve miles away to a local pre-school this term. Leo has gone and is thriving after a few initial issues; but it is too rumbustious for Nenna given her mobility issues. And the petrol costs are slaying us. And, did I mention it's FANTASTIC-NESS?
4. Nursery will also be able to claim extra funding to help her development.

And so we go on. Today she had her follow-up ENT appointment. There is definitely a hearing issue - almost definitely glue ear. The ear drum does not wobble as it should, which is usually caused by fluid build-up behind it. There is hearing impairment at the lower frequencies, which means that she is having trouble hearing rounded sounds - a lot of vowels for example.

Glue ear usually solves itself; but given the other issues, they have put us on the list and she should have Grommits fitted in about eight weeks. We will then know whether the balance issues are solely down to that or whether there are other issues making her fall - given the tendency to not put her hands out to break her fall, this seems likely, but fluid in the inner ear can't be helping. In addition, whilst she is under general anaesthetic, they will be able to do a very in-depth hearing test that monitors the brain's response to sound, using electrode-thingies stuck to her head.

She has lost weight since her last paediatric appointment in February. This may be because she is moving around more, as the friend I went to visit afterwards for cake-and-whinge pointed out. Her feet haven't gone up a size since early January, though.

The Occupational Therapy letter was here when I got home - we are on the waiting list to go on the waiting list. Ditto Speech Therapy, although that letter came a couple of weeks ago. There is a twenty week *actual* waiting list for that, though.

We both feel fairly battered. I think 'in crisis' sort of sums up our family situation. B likened us to a pair of huskies pulling a sled, last night. The children and all our emotional baggage and stuff we have to deal with on a day-to-day basis are in the sled. We are taking turns pulling it. The one pulling it pulls until they can't go on any longer and then they stop and we swap places in the sled. Each time we take a turn, the time we can pull for gets shorter. I was in the sled a couple of weeks ago. B is in the sled at the moment, pretty much lying down there in the back under some nice, soothing wet newspaper, with his pants on his head. I am pulling; but I'm a sprinter and he's the slow-and-steady type. It's my turn, but I'm really scared in case he won't ever be able to get out of the sled. Or, if I end up having to get in it and there's no room.

I'm taking the sled analogy a bit far, now, but you get my meaning.

For today, that is all.


  1. Wouldn't it be great, just for a while, to have everything going simply and smoothly? To see what it feels like. Sounds like Nenna is in line to get what helps she needs, at any rate.

  2. I am very concerned by how long this whole process of identification and therapy provision is taking... That said, a S&L Therapist is unlikely to start direct input until hearing problems are (hopefully) resolved by the insertion of grommets.

    If you have the energy/haven't already done so, it might be worth a phone call to the pre-school team I linked before - just to make sure that there isn't anything else that could be offered now. Early intervention is *so* key to future prognosis.

    From the little I've gleaned... are they talking about developmental dyspraxia (aka Developmental Co-ordination Disorder)? Or are they thinking it is more serious? Or haven't they said?

    Lots of info around on dyspraxia, most of it of very dubious quality and lots of very expensive programmes with big claims but no independent scientific proof (eg avoid DORE and its ilk).

    Keep pulling that sled - but don't forget to stop for the occasional snowball fight and glass of gluhwein!

  3. Just to let you know I did make a comment - in case it goes to spam due to number of links, and you want to dig it out...

  4. What BW said.

    And also Z.

    Hope your sled hits a nice easy slope soon, with maybe a bonfire to sit by for a while.

  5. I'm afraid im not at all surprised at how long everything is taking.. there is an awful lot of wait and see that goes on too. in my experience a lot of the help turns out to be more about recording what is happening than doing anything, most of the therapy actually happens at home, with the therapists suggesting activities and monitoring progress. remember therapists vary greatly.. particularly OTs - such a huge difference in approaches.. so if one does not work out.. dont give up hope.
    and they dont know everything. SALT head of dept told me my son would not talk. pfffffff! different SALT was lovely woman.

    grommets sound like a good idea.

    do they still do the portage system? we found that very useful indeed. you should also be eligible for free nappies from age 3 too.. also big help.

    um. also should bear in mind more than 50% of kids who present with difficulties do not ever get an exact diagnosis

    Sorry you and B no doubt feel completely wrung out, prolly not helping to give you opinions. nearly deleted it all....

    hugs. take care.

  6. Huskies don't pull a sled alone, they work as a team. If you both pull together it takes less effort and energy and everyone feels better. We've all been in bad situations which seem like they will never end but everything passes eventually.
    Love xxx