Saturday, July 03, 2004

Two steps forward, one step back

We have been home for five days now and Amelia's OMS symptoms are up and down, and now we have the added complication of steriod side effects. The most notable steriod effect is Amelia's ravenous appetite. No food is safe in our house! In particular she is craving sugar, but we have been advised to try and remove it from her diet altogether to stop her from ballooning out and becoming 'Cushingoid'. We are trying, but it is extremely hard to avoid sugar in our society. Almost everything we buy has added sugar, so the only way seems to be to cook everyting from raw ingredients ourselves. The Atkin's diet would work, but we don't think we are ready to do something that radical yet.

Suzette from OMSFamilies sent us a very nice email encouraging us to be patient with the treatment. We have only been taking the steroids for about 10 days and it can take weeks for even very effective treatments to work, so it is early days.

The following list shows changes in Amelia recently. I have categorised the changes based on what I think the cause is:

    OMS Symptoms

  • Tantrums - None for a few days and then a few recently
  • Bad sleeping - This has got worse, Amelia is now waking up many times in the night and she gets up very early. OMSFamilies members have overwelmingly recommended trazodone (Trazadone?).
  • Tremor - A fast, fine hand tremor has developed. It is different to the original slow, large tremor, so it may be from the steriods.

    Steriod Symptoms

  • Increased appetite - Amelia is eating at least twice what she used to and she is putting on weight.
  • Craziness - Amelia seems tipsy a lot of the time and she has developed a manical laugh. We love to hear Amelia laugh and the laugh is infections, but it has a disturbing insane edge to it.

The hardest things to deal with are the tantrums and sleep problems. I think we are better at handling tantrums now that we understand the condition more, we don't try to fight it, we just wait for it to pass and try to isolate Amelia while it lasts. The sleep is a problem for Kara and I because we get woken up whenever Amelia wakes and it is bad for Amelia because we suspect her OMS symptoms are worse when she is tired.

Fortunately Sophie is setting good behaviour records for a baby and not disturbing us too much at night. The last five nights, Sophie has slept 7, 7, 7, 8 and 8 hours respectively. Amazing for a six week old! I think she is achieving this by feeding hourly from 5pm to 10pm, which is hard for Kara, but worth it.


Post a Comment

<< Home