Re: Josiah Update

[Guest guest]

- I am so so sorry you are going through SO much. My heart

poors out to you. Hugs to you and Josiah. I hope he is feeling

better soon. I'm so sorry to hear he was so uncomfortable. I

greatly await to hear what the results are from all your tests and

wish I had some thoughts for you on the subject. I've heard of

metabolic acidosis - just read something about it recently as Ian

had a mild case of this recently. But, to be honest, I'm still not

really clear on what that is either. Has Josiah always had

metabolic issues? I'm sorry - I don't always remember everyone's

details. No need to respond or answer my questions either - I know

you have a lot going on.

I also didn't realize that Ian and Josiah were so close in age and

my is Hannah's age! If there is anything I can do for

you - let me know. I'd be happy to do some research for you if that

helps while you are busy running around. Just e-mail me privately

and let me know if there is something I can do. I enjoy researching

<grin>. I don't always remember everything - but, I'd be sure to

make printouts or e-mails for you <grin>.

Take Care. Know that you are in my thoughts. I only wish that

things will be a little less stressful for you. Keep us posted.

Okay?

- H

Ian RSS 30 months non-RSS 4 yrs non-RSS 16 yrs

>

> Well it has been super crazy time over the last month with Josiah,

on

> October 28 he had his G-tube inserted which was more difficult

than I

> expected. He was on moriphine for a day and a half and was in so

> much pain over the next week, he didn't want to do anything but

lay

> in bed and sleep or watch tv. While in hospital his BS was low

while

> he was on the glucose IV and pedialite but once they started

formula

> through his tube and he actually started eating his sugar was

super

> high, so they actually had to start him on a daily injection of

> insulin at bedtime to go along with his overnight feed to keep his

> sugars more normal, which we are having to do at home now....they

> also discovered that he has high blood pressure and now he needs

to

> see a kidney specialist to see what is going on there. We have

been

> seeing a pediatric neurometabolic specialist and they are doing

tons

> of testing to see if he has a metabolic or mitochondrial disease

that

> is affecting him. He is also continuing to have gross/fine motor

> regression so they are trying to find an explination for it all.

It

> has been so frustrating and stressful and busy, we have had 19

> appointments in the last two weeks. I don't know what is going on

> with him but hopefully they will get to the bottom of it soon.

Has

> anyone had anything like this.....can anyone shed any light for

me?

> I am so far behind on reading the listserve emails, I have over

1000

> sitting there for me to read. Hope all is well with everyone.

>

> R.

> Mom to Josiah 29 months RSS, Hannah 4 non RSS

>

[Guest guest]

,

You should get in touch with Chrissy, Madison's mom. Maddy has

hyperglycemia as well as hypoglycemia, too. I do not understand the

etiology of it, but Chrissy probably does.

Jodi Z

[Guest guest]

Oh ... Wow! I was wondering what was happening with you and

Josiah and was going to post to ask.

I hope you get things straightened out soon and some answers. I hope

he's feeling better now!

Will be thinking and praying for you.

Dawna

Matt 12 (13 tomorrow), 11, Kaitlyn 8, Noah 3 RSS

>

> Well it has been super crazy time over the last month with Josiah,

on

> October 28 he had his G-tube inserted which was more difficult than

I

> expected. He was on moriphine for a day and a half and was in so

> much pain over the next week, he didn't want to do anything but lay

> in bed and sleep or watch tv. While in hospital his BS was low

while

> he was on the glucose IV and pedialite but once they started

formula

> through his tube and he actually started eating his sugar was super

> high, so they actually had to start him on a daily injection of

> insulin at bedtime to go along with his overnight feed to keep his

> sugars more normal, which we are having to do at home now....they

> also discovered that he has high blood pressure and now he needs to

> see a kidney specialist to see what is going on there. We have

been

> seeing a pediatric neurometabolic specialist and they are doing

tons

> of testing to see if he has a metabolic or mitochondrial disease

that

> is affecting him. He is also continuing to have gross/fine motor

> regression so they are trying to find an explination for it all.

It

> has been so frustrating and stressful and busy, we have had 19

> appointments in the last two weeks. I don't know what is going on

> with him but hopefully they will get to the bottom of it soon. Has

> anyone had anything like this.....can anyone shed any light for

me?

> I am so far behind on reading the listserve emails, I have over

1000

> sitting there for me to read. Hope all is well with everyone.

>

> R.

> Mom to Josiah 29 months RSS, Hannah 4 non RSS

>