Bad to worse — Scope | Disability forum
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Bad to worse

Hextal Member Posts: 9
Mathilde has just turned 6 months old now and we finally managed to get in to see a pediatrician that showed any kind of interest.

She sat down and listened to our story and immediately stated that she was very concerned that the symptoms (specifically the degeneration in condition) were not necessarily consistent with CP. Something that we have been flagging to the doctors for the last 2-3 months.

We are now waiting on tests for Spinal Muscular Atrophy (something that my girlfriends sister died from at age 6 months).

The condition can come with some signifiant reductions in expected lifespan - 6-12 months in the worst cases.

I thought that I had just about managed to get a handle on things as they were, we now have a 3 week wait to see if she has a condition whereby she may not see her 1st birthday.

Not sure how many more shocks I can take.


  • renacahill
    renacahill Member Posts: 145
    I sincerely hope that the paediatriacian is not correct in thinking this may be SMD but is just doing tests to rule it out. From what I've read its more of a genetic thing which doesnt fit with the hypoxic brain injury and I hope you find this is not the diagnosis. Matilde would be doubly unlucky to have 2 significant neurological conditions. I know lightening can strike twice but hope not in your case. You are doing the right thing to try to find answers. Meanwhile, she is still your lovely baby, try to stay strong and live from day to day, worrying about a future that may not happen won't help any of you. Hoping things work out for you all
  • Hextal
    Hextal Member Posts: 9
    Thanks for that.

    I think her concern is that, as mathilde initially showed fairly normal development (albeit with slighly reduced core strength) up to around 4 months of age that this wasn't quite what she would have expected. And that the sudden deterioration appeared inconsistent enough to query the initial diagnosis. She said that she essentially wants to ensure that the intial damage/trauma aren't actually acting as a bit of a red-herring. I think it's the fact that she brought the condition up before we had even mentioned that there was a family history.

    Am definitely glad that we have got someone that wants to take a really close look, just gave us an extra worry that we could really do without at the moment (not that there is ever a particularly good time to be given that type of information).


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