some good news and another diagnosis?

So I didn't post last week.

We had seven appointments in just three days.

It was a bit overwhelming.

This week we only have 4 appointments for Lily,

4 in a week is MUCH more manageable than 7 in 3 days...

So the good news is she is no longer delayed from a gross motor standpoint.

She will probably be released from physical therapy for a while so we can focus on ot and ft.

We are so so so pleased that she walks!!

The other good thing is we have IVIG tomorrow and

we went the

 whole three weeks

 without an ER visit or an admission since the last IVIG.

ITS A NEW RECORD!!

GO LILY!!!!

Now, for some not so great news.

Two weeks ago Lily had stopped tolerating her bottles and her g tube feeds as well, 

She went from tolerating 5oz in a bottle at one time back to 3oz at a time

if she accepted at all.

It took us 9 months to get her to accept more than 3 oz at a time and it

was incredibly frustrating to have her regress back.

Plus, she had crazy amounts of gas and pain

and had severe diarrhea

which burned her diaper area.

The Doctor said she had a bacterial overgrowth in her gut

 due to the huge amounts of antacid meds she is on

 combined with the iv antibiotics she has to get every so often.

So, They put her on Flagyl (a strong antibiotic) for 7 days

To kill the excess bacteria.

It seemed to work.

but her diarrhea never ceased.

About 18 hours after the last dose of Flagyl,

She spiked a fever.

It has come and gone for the past week.

It never stays long though so they don't feel she has to be admitted

(yay)

Then her gas came back

 and this time she has been vomiting during the night.

We saw the GI today

She said it was the overgrowth coming back so we will be doing 

a week of flagyl once a month now.

She said it was common in mito kids.

She also looked at the burn/rash she had from the diarrhea and

said it had turned into a raging infection and we had to start steroids right away on it.

She kept emphasizing it was bad and to watch it closely because of her immune deficiency.

Its treated with a good (painful) cleaning and steroids 4 times a day for a week.

Then the part I wasn't expecting..

Another diagnosis?!?

Yup, 

She said she had been suspecting for a while

 but had just confirmed that Lily has 

Visceral Hyperalgesia.

She then sat me down and told me that just from a GI standpoint alone

Lily was gonna have a tough road.

Things were gonna keep coming up and we were gonna have to follow her very closely.

Treating her will be tricky and difficult.

It will unfortunately take some trial and error.

This new diagnosis is just one of many to come as the mito progresses

And that's just from a GI standpoint.

Now she wants to see us every 4 weeks instead of every 6.

During this whole appointment,

 by the way,

Lily was having a total meltdown like she has every day this week

and was 

SCREAMING and CRYING

the whole time.

The GI did a fantastic job of speaking over the screaming.

That brings me back to her new diagnosis.

"Visceral Hyperalgesia,

 which may also be called Visceral Hypersensitivity,

 is a term that simply means an individual has increased sensitivity to pain

 in the visceral system of internal organs

 like the stomach, intestines, or pancreas.

 Normally, when one eats or drinks, 

the stomach and intestines stretch

 to accommodate the meal with no discomfort whatsoever.
But in a child with Visceral Hyperalgesia,

 the mere act of filling the stomach or intestine
with a small amount of fluid or food triggers the nerves in the gut to respond as if a
painful stimulus has been introduced.

What is painless to most children

 feels excruciatingly painful to children with Visceral Hyperalgesia.

 Children with this diagnosis

 commonly have pain responses to one or more types of agents: 

pain due to digestive processes such as food entering the gut 

or liquid stretching the gut; 

significantly increased pain due to infections, viruses, 

or other external insults on the gut;

 and a pain response to psychological events such as anxiety or
fear."-Complex child emagazine

So not only is Lily in pain whenever food hits her tummy

(which we kinda already knew)

She has a pain response to anxiety or fear.

This makes so much sense

 and breaks my heart.

She has a sensory processing disorder.

Fear and anxiety, are her constant companions.

She is getting overwhelmed almost every time we go to a store.

Sometimes, (Saturday morning or at church Sunday)
 she just shuts down and its not to obvious, 

other times like Saturday afternoon or Monday, or today at the Dr's,

She has full on screaming, crying, kicking, hitting, tearing at her skin, head banging fits.

Then she starts screaming "ow, ow ow!"

And cries more.

I knever knew what to make of it.

Now I understand.

Her body has a pain responce to fear and anxiety.

And I feel helpless.

I can only pray that God will help her.

The "good news" is she will now be starting a 

low dose pain medication.

At least she will get some releif.

Also, next month we will be starting her on pancreatic enzymes

To try to preserve her pancreus.

And we will be monitoring her Liver very closely now.

Pancreatitis, and or Liver disease are very common with kids with this 

AND

with mito kids...

Sometimes it feels like the deck is so stacked against us.

I just remind myself that

GOD is in control.

Its my new mantra.

"God is in control."