Wow I feel like it's been forever since I have been over here writing to you all.
It has been one hell of a ride for us lately.
Now we all have things going on in our lives. Everyone has challenges, ups and downs, we all have things that are less than ideal that we must tend to on a daily basis. But for those of you that have reached out to us, even through your own fog, to wish as well or send us love, we thank you! It's so nice to see the amount of support we have through these networks and it makes us feel less alone in our fights and makes us realise that this to someday will pass and become a memory.
Those of you that follow us on Instagram would see floods of photos of our daughter Scarlett and snippets of information regarding her health.
Scarlett has been diagnosed with a rare autoimmune disorder called PANS/PANDAS.
At the moment she is in what they call a 'flare' so she has uncontrollable motor and vocal tics.
When a child has this condition anything can set them off into a flare.
It culd he inflammation, bacteria, virus or environmental factors.
We do not know what has set Scarlett into this flare.
When she is triggered by the trigger her basal ganglia gets infammed causing extreme anxiety, tic disorders and OCD.
The track is treating the infection causing the issues.
So far Scarlett has had her tonsils removed ( they hold bacteria), been on two different immune modulators and now on steroids.
Scarlett is a neurotypical child.
This came out of complete left field. She just woke up one day a completely different child.
We are extremely happy however that we have an amazing neurologist who specialises in 'tic disorders' and other immune conditions like PANS/PANDAS.
Meanwhile while Scar baby has been down and out our James baby caught a case of HFAM disease from preschool.
My boy baby boy spent a good week with severe mouth ulcers, he couldn't speak, eat or drink. He spent his time laying on the couch moaning.
James is back to his energetic self again. I really missed him! James has such a beautiful energy so to see him down and out hurt my mummy soul.
So it's school holidays here in NSW.
This week we have no plans! Whoop whoop to that.
I know how important it is to have structure and therapy in place for James weekly BUT it's so nice to not have to go anywhere or have any commitments hanging over our heads.
Its a two week holiday here for school holiday break, so Theo and I opted for a week off everything for James and in the second week we signed him up for intense therapy. James will go to OT, twice a day for one week in the second week of the holidays.
While James is off school this week we also made the decision to run a yeast treatment.
We are a family of gut/brain thinkers.
We firmly believe if you can heal the gut you can heal the brain.
Yeast is a nasty thing to have in a NT person but in children with already compromised immune systems it wrecks havoc.
We have always seen a huge difference in James when we do a yeast treatment. However it gets worse before it gets better.
NO bacteria dies nicely. The yeast release toxic spores as they die which then in turn effects mood and behaviour in these children. We are Day 4 now of the treatment and over the hump. Yay to that.
This morning we went out and about a grabbed a few things. I took the kids to the local Westfield as it's a one stop shop. Both my children were well behaved, polite and patient. This is a trip that can go either way and majority of the time it goes to shit. Today I am thankful for their beautiful little natures.... I had so many people telling me how well behaved they were. I just chuckled to myself, because if only they really knew .....
wellits been fun to pop over and have a little chat. Thanks for all the support guys, we love you!