Wow... what a day. Like WHAT A DAY!
So today was James' gastroenterologist appointment. James has to see his gastro every 4 months.
I often get asked why James has a gastroenterologist.... James has always had issues in the area of 'pooping' so that's reason number ONE. But I often struggle with people's knowledge of what gastros actually look after!!
Your gastro tract goes from your mouth to your BUTT hole and includes EVERYTHING in between. So the baby with severe reflux, should see a gastro. The child that does not eat food, should see a gastro. The child who suffers severe gut pain, should see a gastro. The child that has difficulty swallowing food and funny with textures, should see a gastro.
I can not tell you the number of times I have to explain to people why James sees a gastro. They don't just play with POO people. They are specialists in the entire gastro tract.
For those checking in with us for the first time now...
James has FPIES, had SEVERE silent reflux up until age one. Suffers severe constipation. DOES NOT eat solid food.
Our gastro is a fabulous man. He totally gets James and has done SO much for James in his healing process. Did you know that many ASD kids have gut issues. ASD children are immunocompromised. Your immune system is your GUT and your BRAIN. If your gut is struggling then your brain will struggle! They say your gut is your second brain.
So rewind to our last appointment with the gastro ( January 2017), James was a mess. Gut full of poop. Uncomfortable. He was struggling. Every time we go to the G MAN James has to have bloods drawn the week before (that's always a FUN experience, but it has to be done). The G MAN looks at many different things. Crucial vitamin levels, inflammation markers and auto immune conditions. So back in January James had a very bad iron reading, high B12. So that showed the G MAN that James is NOT absorbing both those vitamins. He said quite possibly James has SIBO. ( small intestine bacterial overgrowth). They DO NOT test children under the age of 5 for SIBO.... it is quite impossible really. Impossible because the child has to be starved prior, drink a certain liquid in intervals and do a specific breathing technique in intervals. LOL... a mainstream child can't do it. What hope does James have achieving this????? Yep, NONE!
So the plan for the last 4 months was to give James iron supplementation. Start a good yeast and probiotic for bacteria and give a laxative daily.
Gastro said, I will give you 4 months to lift the iron.
So for the first 3 months I had a wonderful child!!!! Like something was happening. Calmer, more at ease, less control. Moving bowels and doing really well! Except still NOT eating food.
For the last month however James has been struggling. Yellow, acidic, mucous stools. Discomfort in the gut. Tired. Struggling. I did stop probiotics and the yeast.
I knew going into today's appointment that something wasn't right! James is just not doing great.
I had some of james' bloods results but not all. So I have had anxiety for a whole week in prep for this appointment. I wrote note after note after note. I have pages of crap for the gastro to check out and answer.
TODAY.... that brings us to TODAY.
Today I was told that James iron has dropped... SAY WHAT? Um he is on 5 mls of iron DAILY!!!! How the hell does it drop? So our G MAN didn't hide his concern! He is concerned. B12 still high (no surprise there) and calcium was elevated also.
So the plan now... firstly I get to play with james' crap again. He has given me a little shit pot and form for stool sampling. He is checking for a list of things including blood and parasites ( not the same as worms folks, intestinal parasites).
James' daily iron supplement has now been doubled.
James has been placed back on SB and probiotics.
We repeat the bloods in 4 months time.
In the meantime I need to watch James carefully. If I see any funky poo business I need to contact him straight away. If James becomes tried etc I need to contact him also.
I asked G MAN what is happening in 4 months if nothing happens with the iron. And he said, 'I'm going in'. James will need to be scoped, again!
I mentioned James sore joints ( knees) to the doctor today also. He said its often linked to the bowel. But it could just be growing pains. If this continues then James will need to see a rheumatologist, he works closely with the gastro but the gastro wants us to hold off unless severe as James has so many specialists, we don't want to do anything unnecessary.
I am thankful for straight shooting top specialists, I really am.
I love that they don't sugar coat anything.
We have a plan for the next 4 months and I have to put faith in that plan and hope that the iron lifts.
Glad to be home, in my pjs and plan to just sit with the kiddies and chill for the afternoon.
Appointments really drain me of all energy.
I am sure a lot of you are with me.