RE: lungs

April 27, 2009

I came across this site the other day and signed up (it’s free)

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From:

DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of

Turpin

Sent: Monday, April 27, 2009 2:00 PM

To: DownSyndromeInfoExchange

Subject: [DownSyndromeInfoExchange] lungs

I was wondering if anyone can help me. I am trying to do research and

learn more about the lungs and DS. My baby is almost 6 months old.

We are in the ICU on the vent (again). We are probably looking at a

trach, but she can't get stable enough for the surgery. She has BPD

(chronic lung disease) and pulmonary hypertension. Oh and she's 8 weeks post op

AV Canal repair. We are at Texas Children's Hospital and have good

doctors and experts in PH. I feel that they are doing their best, but I

really feel like we are missing something.

Every time I do research and google, I'll find a promising abstract, only to

find it's a journel and i have no access.

Does anyone have a good place to research? I need to understand.

Thanks,

shelly

_._,___

April 27, 2009

Hi

,

I’ve

pasted some info below that you may consider giving your daughter in case it

would help her lungs/strengthen them.

Also,

I know a mom who has a 4 year old with DS and they have been battling PH for a

long time. He got a trach last year and he is doing much better now. Her

website/blog is www.prayingforparker.com.

I also have her email addy and I’m sure she’d be glad to offer you help and

support. Just let me know if you want her addy.

Qadoshyah

Gluathione is very beneficial for the lungs. It helps

decrease the oxidative stress that comes along with lung problems. Here’s a

great, pretty easy to understand article on Gluathione and all the roles it

plays - http://www.dockidd.com/pdf/KiddGSHAMR.pdf.

It can be difficult to adequately supplement Gluathione

in patients with DS, especially considering the fact that Glutathione has been

found to be typically low in patients with DS.

If you are going to give Glutathione in a capsule form,

the best absorbed form is Reduced L-Glutathione (must be Reduced,

just “L-Glutathione” won’t work.

Lipoceutical Glutatione is supposed to be the easiest to

absorb form of Glutathione. It is a liquid form and they often use it in kids

with Autism. http://www.gshnow.com/

Another

thing that successfully raises glutathione levels is Methylcobalamin B12. We

give my brother MeB12 lozenges every day.

Glutathione

creams also can be beneficial and may be absorbed more readily. This link has a

good cream and it also has some good info on it, including info from Dr. Jill

: http://www.springboard4health.com/store/more_glutathione_plus4.html

For strengthening his lungs and opening his passageways,

I'd suggest the

following:

Lyprinol - This is green mussle extract - basically a

high potency, concentrated, pure fish oil. It has very high anti-inflammatory

properties and works wonders on the lungs and breathing issues. There is

research that can be seen at www.lyprinol.com

(also links off of there to buy it). If you couldn't get him to take the

Lyprinol (because of taste), I'd give him high doses of another strong fish oil

that has some flavor to it (we give my brother with DS Nordic Naturals ProDHA

Strawberry flavor). Or a flavored Cod Liver Oil. Oils are very anti-inflammatory

and help reduce irritation.

Ridgecrest Herbals Clear Lungs - This is a chinease

herbal formula that is specifically for clearing the lungs and sinuses. It

works wonders!! My brother (w/ DS) was sick really bad in December. His lungs

were really tight and we were wondering if we were going to have to take him

into the ER (since he wasn't breathing that great). My mom did some reading and

decided this Clear Lungs product looked like it may help him out. So, my Aunt

picked some up for us and within 4 hours of giving my brother 1/2 capsule he

was doing WAAAYYY better. He got betting very quickly when we gave him this

every 4 hours or so, like was suggested on the bottle. Now, when there's a cold

going around, we give him 1/2 capsule of the Clear Lungs, as a prevenative. He

hasn't had gotten another bad cold like that since. Our friends have had the

same experience with it. Here's a link about it:

http://www.ridgecrestherbals.com/store.cfm?ProductID=15 & content=test & do=detail

Also, onion packs on the chest with a

hot water bottle (or heating pad) open the airways majorly. Plus, onion cough syrup

(I posted how to make this a little while ago on here) work great. The recipe

for that is as follows:

Cut an onion in slices

(leave the rings together) and layer onion/brown sugar/onion/brown sugar, as is

needed. 3 or 4 layers. Put in a container with a lid and leave it covered for

3-6 hours. By that time, there should be some onion syrup starting to show up

in the container. Give that to the child. The kids always really like the onion

syrup!

From:

DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of

Turpin

Sent: Monday, April 27, 2009 1:00 PM

To: DownSyndromeInfoExchange

Subject: [DownSyndromeInfoExchange] lungs

I was wondering if anyone can help me. I am trying to do research and

learn more about the lungs and DS. My baby is almost 6 months old.

We are in the ICU on the vent (again). We are probably looking at a

trach, but she can't get stable enough for the surgery. She has BPD

(chronic lung disease) and pulmonary hypertension. Oh and she's 8 weeks post op

AV Canal repair. We are at Texas Children's Hospital and have good

doctors and experts in PH. I feel that they are doing their best, but I

really feel like we are missing something.

Every time I do research and google, I'll find a promising abstract, only to

find it's a journel and i have no access.

Does anyone have a good place to research? I need to understand.

Thanks,

shelly

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.287 / Virus Database: 270.12.4/2082 - Release Date: 04/27/09

06:19:00

April 28, 2009

Hi ,

Fascinating reading about the fish oils and effect on inflammation in lungs. My

10 mo old son has had frequent colds with difficulty breathing and asthma

wheezing so he has been put on oral prednisone as well as nebulizer treatments

of xopenex and pulmicort. He currently has 300mg of Neuromins DHA/day but would

another product be more potent and therefore help more with opening his airways?

Or does he have to stay on this product until older? At what age can I introduce

the other products mentioned like MeB12? My concern is the number of times we

have to resort to the oral prednisone to allow him to move air.

Thank you~

Margie

In DownSyndromeInfoExchange , " Qadoshyah " wrote:

>

> Hi ,

>

> I've pasted some info below that you may consider giving your daughter in

> case it would help her lungs/strengthen them.

>

> Also, I know a mom who has a 4 year old with DS and they have been battling

> PH for a long time. He got a trach last year and he is doing much better

> now. Her website/blog is www.prayingforparker.com. I also have her email

> addy and I'm sure she'd be glad to offer you help and support. Just let me

> know if you want her addy.

>

> Qadoshyah

>

> Gluathione is very beneficial for the lungs. It helps decrease the oxidative

> stress that comes along with lung problems. Here's a great, pretty easy to

> understand article on Gluathione and all the roles it plays -

> http://www.dockidd.com/pdf/KiddGSHAMR.pdf.

>

> It can be difficult to adequately supplement Gluathione in patients with DS,

> especially considering the fact that Glutathione has been found to be

> typically low in patients with DS.

>

> If you are going to give Glutathione in a capsule form, the best absorbed

> form is Reduced L-Glutathione (must be Reduced, just " L-Glutathione " won't

> work.

>

> Lipoceutical Glutatione is supposed to be the easiest to absorb form of

> Glutathione. It is a liquid form and they often use it in kids with Autism.

> http://www.gshnow.com/

>

> Another thing that successfully raises glutathione levels is Methylcobalamin

> B12. We give my brother MeB12 lozenges every day.

>

> Glutathione creams also can be beneficial and may be absorbed more readily.

> This link has a good cream and it also has some good info on it, including

> info from Dr. Jill :

> http://www.springboard4health.com/store/more_glutathione_plus4.html

>

> For strengthening his lungs and opening his passageways, I'd suggest the

>

> following:

>

> Lyprinol - This is green mussle extract - basically a high potency,

> concentrated, pure fish oil. It has very high anti-inflammatory properties

> and works wonders on the lungs and breathing issues. There is research that

> can be seen at www.lyprinol.com (also links off of there to buy it). If you

> couldn't get him to take the Lyprinol (because of taste), I'd give him high

> doses of another strong fish oil that has some flavor to it (we give my

> brother with DS Nordic Naturals ProDHA Strawberry flavor). Or a flavored Cod

> Liver Oil. Oils are very anti-inflammatory and help reduce irritation.

>

> Ridgecrest Herbals Clear Lungs - This is a chinease herbal formula that is

> specifically for clearing the lungs and sinuses. It works wonders!! My

> brother (w/ DS) was sick really bad in December. His lungs were really tight

> and we were wondering if we were going to have to take him into the ER

> (since he wasn't breathing that great). My mom did some reading and decided

> this Clear Lungs product looked like it may help him out. So, my Aunt picked

> some up for us and within 4 hours of giving my brother 1/2 capsule he was

> doing WAAAYYY better. He got betting very quickly when we gave him this

> every 4 hours or so, like was suggested on the bottle. Now, when there's a

> cold going around, we give him 1/2 capsule of the Clear Lungs, as a

> prevenative. He hasn't had gotten another bad cold like that since. Our

> friends have had the same experience with it. Here's a link about it:

>

> http://www.ridgecrestherbals.com/store.cfm?ProductID=15

> <http://www.ridgecrestherbals.com/store.cfm?ProductID=15 & content=test & do=det

> ail> & content=test & do=detail

>

> Also, onion packs on the chest with a hot water bottle (or heating pad)

> open the airways majorly. Plus, onion cough syrup (I posted how to make this

> a little while ago on here) work great. The recipe for that is as follows:

>

> Cut an onion in slices (leave the rings together) and layer onion/brown

> sugar/onion/brown sugar, as is needed. 3 or 4 layers. Put in a container

> with a lid and leave it covered for 3-6 hours. By that time, there should be

> some onion syrup starting to show up in the container. Give that to the

> child. The kids always really like the onion syrup!

>

> From: DownSyndromeInfoExchange

> [mailto:DownSyndromeInfoExchange ] On Behalf Of Turpin

> Sent: Monday, April 27, 2009 1:00 PM

> To: DownSyndromeInfoExchange

> Subject: [DownSyndromeInfoExchange] lungs

>

> I was wondering if anyone can help me. I am trying to do research and learn

> more about the lungs and DS. My baby is almost 6 months old. We are in the

> ICU on the vent (again). We are probably looking at a trach, but she can't

> get stable enough for the surgery. She has BPD (chronic lung disease) and

> pulmonary hypertension. Oh and she's 8 weeks post op AV Canal repair. We

> are at Texas Children's Hospital and have good doctors and experts in PH. I

> feel that they are doing their best, but I really feel like we are missing

> something.

>

> Every time I do research and google, I'll find a promising abstract, only to

> find it's a journel and i have no access.

> Does anyone have a good place to research? I need to understand. Thanks,

> shelly

>

> No virus found in this incoming message.

> Checked by AVG - www.avg.com

> Version: 8.5.287 / Virus Database: 270.12.4/2082 - Release Date: 04/27/09

> 06:19:00

>

April 28, 2009

I put on the SCD just to reduce inflamation to calm down an auto-immune disorder . Also added fish oil and CLO to her diets- had been using the NVD protocol- and you would not have believed the difference in her OVER ALL. And... her asthma, which was horrible and very scary... has totally calmed down as well. :-)

So say yes... these things really do make a huge difference and you can have an affect on asthma by redecing cellular inflamation. Carol in ILMom to , 8 DSMy problem is not how I look. It's how you see me.

Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/http://downsyndromeinfoexchange.blogspot.com/

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Hi ,

Fascinating reading about the fish oils and effect on inflammation in lungs. My 10 mo old son has had frequent colds with difficulty breathing and asthma wheezing so he has been put on oral prednisone as well as nebulizer treatments of xopenex and pulmicort. He currently has 300mg of Neuromins DHA/day but would another product be more potent and therefore help more with opening his airways? Or does he have to stay on this product until older? At what age can I introduce the other products mentioned like MeB12? My concern is the number of times we have to resort to the oral prednisone to allow him to move air.