Friday, January 29, 2010

Worry Update

Ashlea is still really struggling to crawl.  She is also unable to W-sit and can't weight bear on her legs.  I have spent most of the week on the phone to various specialists trying to see if there is something more that can be done.  Here is the latest update:

  • The consensus now seems to be that the weakness HAS indeed been brought on by the swine flu vaccination.  There is absolutely nothing else that has been going on with her that can explain it.

  • As her weakness doesn't appear to be progressing, the doctors are fairly confident she doesn't have Guillain Barre Syndrome - although we are under strict instruction to go to the ED if she deteriorates over the weekend.

  • If I had known there was a risk of this happening I would NEVER have given her the vaccination.

  • She didn't crawl at all yesterday or today at preschool (and usually she is all about the crawling at preschool when we pick up Audrey).  At swimming yesterday she wasn't able to do the activities she could do last week - and the teacher noticed that she was a lot weaker - which cemented in my mind that the symptoms did come on over the weekend not gradually over a number of weeks.  Also I found a photo of her sitting up just a week ago - so I know her deterioration was quick.

  • I have informed the GP (who gave the vaccine) of Ashlea's reaction and requested that it be reported as an adverse event.

  • Ashlea did seem quite perky this evening and got up on her hands and knees to crawl a couple of times.  She was still only able to take a few 'steps' before collapsing, but at least she seemed more interested in trying.

  • We are seeing our paediatrician next week to see if she thinks any further testing needs to be done.  Can you believe the only appointment I could get was 4pm on Wednesday - Emma's first day of school.  We are also seeing our physiotherapist.
The moral to the tale - DON'T get the swine 'flu vaccine.  To think that this has happened BECAUSE of my actions, not in spite of my actions is driving me crazy.  I thought I was doing the right thing by getting the vaccine for her due to her increased risk of serious consequences of the 'flu - and now I am responsible for causing her harm.

The doctors are hoping she will recover on her own.  I am hoping it will happen quickly.  She has gone backwards by at least 12 months if not longer in terms of her physical milestones.  I feel sick to my stomach whenever I think about it, with that awful "Oh my goodness what is going to happen next" feeling that I used to have all the time when she was in the NICU.

For those of you who pray, please pray for a speedy recovery for Ashlea.

11 comments:

Sarah said...

Alison, I am sorry to hear it sounds like the vaccine is the cause. I will be praying she starts recovering and back to her self very soon.

Thinking of you all, xx

Stacey said...

Oh Alison, PLEASE DON'T BLAME YOURSELF.... Although I see it must be hard for you not to feel that way. This is definately not because of you, you were just acting to protect your precious Ashlea, you were not to know this would be the outcome.

I pray this is just a tiny temporary set back and Ashlea is crawling again soon.

You are a fantastic mother with three beautiful daughters, there is no way you would ever do anything that could possibly harm your children. Please know that this is NOT your fault.

Thinkng of you and your family xx

Naomi said...

Just wanted to say we are thinking of you.

Not wanting to cause any problems but I am a non-vaccinating mum. That's not to say I have never vaccinated my kids but I will never ever do any more. After being told by a very experienced doctor that Zach's CP (unofficially of course as they could never admit this with out a huge s*** fight on their hands!) was caused by his 4 month vaccination. Up until this time Zach was developing completely normally, we only experienced problems after these needles.

After doing a huge amount of research on the vaccines we give our children I just want to shout some things from the roof tops but that wouldn't be right. It is not my place to make decision for other people.

Again we are thinking of you and I really hope Ashlea turns a corner soon.

xx

karina said...

Oh no. Hugs for you and Ashlea. This just stinks. I will pray for a quick recovery and strength.

n0thingbuteverything said...

Oh Alison, I've been BLOG lazy and had no idea of what you've been going through!! How awful for you ;-(. I really really hope that she recovers swiftly from her weakness. I'd be hoping (remembering of course that I have absolutely no medical background or even a vaguely scientific mind!) that what you're seeing is actually a 'mild' swine flu bought on by the vaccination - in which case she should definitely recover from the reaction in the same way she would recover from the flu.

You DID do the right thing according to all the advice. I would definitely have vaccinated S against the swine flu were he medically fragile in any way.

I think I would be taking your 'request' for an adverse reaction to be recorded a little further than your own GP - just in case he's not proactive about getting it done. People need to know if there ARE risks like this.

I am afraid that I am not one for prayer, but I am sending positive healing vibes in Ashlea's direction and big hugs for you

And to end on a positive note - yay, yay, yay for Ashlea's first day of preschool being such a success!!! After you get over this hurdle, I hope it's going to be a super fab year for you all xo

Anna said...

Definately don't blame yourself! I am praying for Ashlea and hoping she starts to get better soon xxx

Peta said...

I'm so incredibly sorry to hear Ashlea has had a adverse reaction to the vaccine. Especially when,(like me) you initially thought you were doing the 'right thing'...I most certainly will pray for a quick and smooth recovery for your beautifull little girl xx

Belinda said...

Alison,

Wishing Ashlea a speedy recovery!

Certainly don't blame yourself!

Thinking of you. xx.

PrayforNathan.org said...

Alison this is my first time stopping by your blog - so sorry to hear about what's happened to Ashlea. I will be praying for her, I hope she recovers quickly.
Best,
Marcela
www.prayfornathan.org

Megan said...

I am so sorry that she is not doing better. But please dont blame yourself, you did the best you could and what you were advised. I can tell you on other hand, that my family didnt get vaccinated and we all got the swine flu. Our 4 year old daughter passed away because of it in October. I blame myself every single day we didnt get the shots, but we were freaked out by all the reports about the vaccines. Now I know that the problem is overrated and the vaccines are much safer. I would take a weakness like Ashlea is experiencing over death of my daughter any second of the day. Vaccines save lifes of the children and the complications are extremely rare (they happen though, but the children at least do not die from them)
Hope she will get better soon, she is so precious !!!
Megan, TX

Alison said...

Megan - I am so sorry to hear of the loss of your precious daughter. You are right - a (hopefully temporary) setback like this is a small price to pay if the vaccine saves her life.