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Hi, Everyone....Charlyne....thanks for asking. He's better from that

stomach bug that's been going around, but today, the ENT doc put him on the

third antibiotic for this continual ear infection since Feb. Today, he told

me he thought the bone around the ear (Mandibular) could be infected and

wants him to have a CT scan on Friday to see if there's infection in the

bone. Then, we'll decide what to do. He *thinks* it's all got to do with that

MBL deficiency he has. Cyndi....I've been thinking of you and all

day!!! Gosh.....if it isn't one thing, it's another!!! Gareth's ear is as bad

as cellulitis....non-healing.

.....vent all you want, Lady!!! So many of us have been down that

road and know your feelings. My first question would be: are the docs

starting at a low dose for these meds.....our kids don't need a lot and many of

the *normal* dosages are too high. Having the dosage too high causes just

as many behavioral problems as dosage too low. Secondly: Are you keeping a

chart of these behaviors and each med so that you can keep an accurate

track of both? Write down the day each med is started, dosage, and check off

each behavior that med helps or what behaviors it makes worse. Just my two

cents worth but wanted to let you know that many of us have been down the

same road. I have also come to realize, that Gareth's worse behaviors are

when he's sick. I just have to find out what he's sick from!!!

Take care, Everyone.

Margaret

Mom to Garth, 22 y/o, DS/ASD/OCD

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Thanks Margaret.

Yes, the dosages have all been very low. We usually see something right away

though.

I haven't been good at writing everything down. Dumb on my part, I know. I got

copies of my docs records recently and was pleased that there was quite a bit in

there. I'll start some notes from there and make my own additions and go from

here on out. Great idea. Thanks. If anything just to say, 'been there, tried

that already'.

, mom to Jordan, 8, ds/autism

>

> Hi, Everyone....Charlyne....thanks for asking. He's better from that

> stomach bug that's been going around, but today, the ENT doc put him on the

> third antibiotic for this continual ear infection since Feb. Today, he told

> me he thought the bone around the ear (Mandibular) could be infected and

> wants him to have a CT scan on Friday to see if there's infection in the

> bone. Then, we'll decide what to do. He *thinks* it's all got to do with

that

> MBL deficiency he has. Cyndi....I've been thinking of you and all

> day!!! Gosh.....if it isn't one thing, it's another!!! Gareth's ear is as

bad

> as cellulitis....non-healing.

>

> .....vent all you want, Lady!!! So many of us have been down that

> road and know your feelings. My first question would be: are the docs

> starting at a low dose for these meds.....our kids don't need a lot and many

of

> the *normal* dosages are too high. Having the dosage too high causes just

> as many behavioral problems as dosage too low. Secondly: Are you keeping a

> chart of these behaviors and each med so that you can keep an accurate

> track of both? Write down the day each med is started, dosage, and check off

> each behavior that med helps or what behaviors it makes worse. Just my two

> cents worth but wanted to let you know that many of us have been down the

> same road. I have also come to realize, that Gareth's worse behaviors are

> when he's sick. I just have to find out what he's sick from!!!

>

> Take care, Everyone.

> Margaret

> Mom to Garth, 22 y/o, DS/ASD/OCD

>

>

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Oh man Margaret.....poor Gareth!! Kid just doesn't get a break!!! HUGS and

prayers

Donna

> Hi, Everyone....Charlyne....thanks for asking. He's better from that

> stomach bug that's been going around, but today, the ENT doc put him on the

> third antibiotic for this continual ear infection since Feb. Today, he told

> me he thought the bone around the ear (Mandibular) could be infected and

> wants him to have a CT scan on Friday to see if there's infection in the

> bone. Then, we'll decide what to do. He *thinks* it's all got to do with that

> MBL deficiency he has. Cyndi....I've been thinking of you and all

> day!!! Gosh.....if it isn't one thing, it's another!!! Gareth's ear is as bad

> as cellulitis....non-healing.

>

> .....vent all you want, Lady!!! So many of us have been down that

> road and know your feelings. My first question would be: are the docs

> starting at a low dose for these meds.....our kids don't need a lot and many

of

> the *normal* dosages are too high. Having the dosage too high causes just

> as many behavioral problems as dosage too low. Secondly: Are you keeping a

> chart of these behaviors and each med so that you can keep an accurate

> track of both? Write down the day each med is started, dosage, and check off

> each behavior that med helps or what behaviors it makes worse. Just my two

> cents worth but wanted to let you know that many of us have been down the

> same road. I have also come to realize, that Gareth's worse behaviors are

> when he's sick. I just have to find out what he's sick from!!!

>

> Take care, Everyone.

> Margaret

> Mom to Garth, 22 y/o, DS/ASD/OCD

>

>

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Sorry to hear about Gareth, Margaret. It does seem that some kids have a harder

time of it!

I'd been thinking of you, wondering if you were seeing any improvement with the

Carnitine - but if Gareth has been in pain all this time, of course you won't.

Prayers for Gareth, and all of us.

. mum to Matteo, 20

________________________________

Da: " mfroof@... "

A:

Inviato: Mar 5 aprile 2011, 01:04:36

Oggetto: Charlyne/

Hi, Everyone....Charlyne....thanks for asking. He's better from that

stomach bug that's been going around, but today, the ENT doc put him on the

third antibiotic for this continual ear infection since Feb. Today, he told

me he thought the bone around the ear (Mandibular) could be infected and

wants him to have a CT scan on Friday to see if there's infection in the

bone. Then, we'll decide what to do. He *thinks* it's all got to do with that

MBL deficiency he has. Cyndi....I've been thinking of you and all

day!!! Gosh.....if it isn't one thing, it's another!!! Gareth's ear is as bad

as cellulitis....non-healing.

.....vent all you want, Lady!!! So many of us have been down that

road and know your feelings. My first question would be: are the docs

starting at a low dose for these meds.....our kids don't need a lot and many of

the *normal* dosages are too high. Having the dosage too high causes just

as many behavioral problems as dosage too low. Secondly: Are you keeping a

chart of these behaviors and each med so that you can keep an accurate

track of both? Write down the day each med is started, dosage, and check off

each behavior that med helps or what behaviors it makes worse. Just my two

cents worth but wanted to let you know that many of us have been down the

same road. I have also come to realize, that Gareth's worse behaviors are

when he's sick. I just have to find out what he's sick from!!!

Take care, Everyone.

Margaret

Mom to Garth, 22 y/o, DS/ASD/OCD

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