Jack Update

[Guest guest]

Hi

Having been away for 3 weeks and only having just cleared my mails and got back on top of things I thought I'd give a quick update on Jack and where we're at being as he was on the initial LDN trial and is now the subject of a "tough gut" group under Dr JM.

>>>Oooh, tough nut, tough gut, whats next LOL ?

We have had a remarkable full 10 week period lately of improved gut/bowel function and as a consequence much improved receptive understanding and responsiveness!

>>I am so pleased for you after such a rough ride through the bugs

We put the improved bowels and guts down to diet (removing all sugar), killing bacteria (identified in a recent dysbiosis test) using kapricidin A and uva ursi and the LDN. Jack has had no problems with the LDN at all, indeed I'm pretty convinced he is calmer and a little more connected as a result. The other day I even found him looking in all the bedrooms calling Daddy (Nick was at work) because he wanted to play with him (never really seen this before). He also shrugged off a nasty viral infection on holiday without it impacting on bowel function!

>>> This is great news. Sam has been on it now since 8th August. I think somethings happening but I can;t put my finger on it and it could be any number of things. He skis looks better though, Cally felt the same when her lass started it.

Re chelation we have switched to TD DMSA on Dr JM's recommendation and just completed our first round - 3 days on 11 off. He has been a bit more stimmy but I have noticed the pant wetting has stopped since stopping TD DMPS. He was not having full accidents but especially in the evening seemed to be partialy wetting his pyjamas! I've a feeling this might have been strain on the kidneys from the DMPS as has stopped since we stopped the DMPS.

>>>Maybe, Sam wets at night if we have yeast brewing...........

Dr JM has set up a special group for her tough gut patients and we are about to embark on increased GSH, TD NAC, and a new anti inflammatory drug which boosts immune function and reduces neuroinflammation - will keep you posted.

>>>is this the ACTOS?

Also we'll be increasing B12 to daily doses for 6 weeks and keeping anti-fungal and anti-bacterials on a rotation. I will provide more details of the exact schedule when I 've got it all confirmed!

>>>don;t forget!

Mandi x

[Guest guest]

We have been away, but I'm finally able to post an overdue Jack

update! Jack got his DOCband just shy of turning 4 months old for

his severe inutero plagio. He grew very quickly in it and it only

fit for about six weeks. We had a followup with Dr. after

finishing the band and learned that Jack improved from 21mm to 7mm

in that six weeks! That's more than 2mm of correction a week,

amazing. Dr. wanted him banded for another month, and

Cranial Tech did recommend a second band, so we had him casted again

last Thursday. From above he looks great! He has some mild

flatness and ear asymmetry, forehead bossing, and that overall slant

he has from the front still. I'm excited to get the second band, as

it will be about a month that he'll end up out of one. He grew out

of the first one way faster than we expected and then it took a

couple weeks to get the appt with Dr. for the script.

In the meantime we got great insurance news. Tufts was covering the

band under DME and we had a $1500 cap per calendar year. We had

asked our employer for help given that we had BCBS of MA until the

month before Jack was casted for his first band, and when they

switched our provider to TUFTS they assured us our coverage would

not change. BCBS would have covered it 100%, so this obviously was a

big change for us. The hospital (our workplace) helped us advocate

for our situation and it ended up that Tufts changed their policy

and will no longer be covering their bands as DME and instead they

would be considered treatment procedures, meaning no cap. Yay!

Jack did great with his casting. The least amount of crying in all

six castings and one scan we've done between the two kids. It

helped that he takes a bottle now, so I just starved him through the

pictures and had him wait to eat during the cast, lol. His new band

will be in 8/2!

, mom to Hannah (4yrs, DOCgrad) and Jack (6mos, awaiting DOC#2)

Cape Cod, Ma

http://hannahsnoggin.typepad.com (really needs updating!)