DownSyn Forum

[greatlakesmom]

I have a friend who is a die-hard believer in natural medicine. Our family has experienced a really tough winter with our daughter who has DS, she's six. Multiple sicknesses, strep, colds, etc. Since January we've not had a full week without sickness & she's missed quite a bit of school because of this. Actually, it's been this way since she started early intervention preschool at 2 yrs old, every winter we've long spells of sickness. I know this is more common in kids with DS.?

My friend is of the opinion that we are going about things wrong and if we went the natural route, my daughter would be much healthier. I'm a little frustrated, it seems that people & friends, in general, don't seem to understand the added difficulty/sicknesses with my daughter, as well as, the different & added needs, as well.

I guess I'm wondering if this is a common experience, in regards to sickness & if anyone has pursued using a natural med approach?

[Annieo]

Curious to know what natural medicines your friend would like you to be using? If you're going about things all wrong, what should you be doing? Is she recommending that you're daughter not get antibiotics when she gets sick or is it something more?

_________________


Ann, married to Tim, mom to Sally, Mark, Jane, John (12/02, DS), Paul, and Alice
www.caringbridge.org/visit/johnbremer

[greatlakesmom]

Hi Annieo. No, she hasn't told me that we should be using some kind of supplement in place of the antibiotics. It's more the overall idea that because we don't see a or her natural med doctor and don't use an entire natural med approach to life, that somehow all the sicknesses are there with my daughter. We do try to eat healthy and live a healthy lifestyle, but my daughter just seems to struggle with multiple sicknesses during the winter.

I guess I'm just a little discouraged by the lack of support among both friends and family, who don't seem to understand. I know that my daughter's sinuses and ear canals are narrower than say, my typically developing son's, when he was her age, which I've been told by my doctor can make the situation worse (i.e. lead to sinus, ear infections, etc.) Makes sense.

Sorry, I guess I'm really not being specific here. Just wondered if anyone has followed a 'natural health' approach to caring for their child and if it's made significant difference.

[Catty]

Oh can i relate. Our daughter was a very sick child. Her reflux into the lungs had her hospitalized a few times, and she was so prone to bronchitis,the flu, and asthma, and croup which sent her to the ER several times. I had to be pro active in her health but unfortunately this involved a number of vaccines that were recommended. Flu shot every year, pnumovax, and mengigate. These helped her a lot. The croup and asthma are an ongoing issue, but we are ready for the attacks by keeping a on hold dose of dexamethansone at the pharmacy. She goes from caughing to not being able to breath in hours. These are not very natural but this was the only way to keep her comfortable and infection free. It was chronic and not fun for her or us. From age 2 to 8 was the worst but now i can say that she does not get so sick as she used to, and when she does we are ready. Family members can't relate at all. Unless they have lived it they don't get it, my philosophy is of you cause me stress your out of my life...don't need it. I do give her vitamins (liquid form) in her juice, but i just think she is older and stronger.

[Emily's Mum]

I know what you mean ! I think some people do forget that things are not as straight forward as they are for a 'typical' child. I suppose we cant blame them, they don't live with our children or experience the differences so how would they know ? It can be frustrating though.... my own Mother would sometimes say things like ' Oh she's just a bit spoilt'.... when my daughter was doing her ' stubborn' thing or behaving naughtily. ..... Irritating !! What can you do ? !

On the subject of illnesses, tell your friend that its usually the case that all the tubes in the ears/nose / sinus etc are often significantly smaller in children with Down Syndrome. Therefore everything blocks up and cant escape the body very easily and is prone to infection... I remember these time when Emily started school..... chest problems, croup ( which makes them sound very ill but in fact is all noise ) hospital admissions.... But just to let you know this was short lived and only lasted a couple of years. Emily VERY RARELY goes to the Docs and is RARELY ill ! So rest assured It wont last forever !

_________________
S J Oakley

[jtkkmom]

We do use natural methods whenever possible. If natural methods don't work, we will take K to the Dr., but she has t needed anti iotics since just before she turned 2.

I did find the year that she was 2 & 3, that she got colds often & that they hung around for most of the winter. I thi k that natural remedies hoed then from getting worse, but it wasn't great either.

Then this fall when K was 4, she git her first cold in early November. We tried removing sugar, gluten, & milk products at the first sign of a cold. Her cold lasted 3 days. Same thing when she got a cold in January. She recently got a cold near the end of March, but we were holidaying & didn't adhere to the strict diet & haven't been great even upon returning gone due to birthday parties & just being really busy. She is still fighting this cold!


The other thing we started in January was to treat her sluggish thyroid with a deep ocean (away from heavy metals) sea kelp. Since giving her this, she has grown 3/4 inch per month since! I am getting her blood tests results soon, but I can't imagine anything besides the thyroid support is causing a growth spurt to last this long!

That's some of the highlights of what we have done. Some bad, but mostly good & no hospitalizations since she came home on day 5 of her life, so I think it has supported her good health.

_________________
Laura - proud mom to my 4 girls

http://downsyndromeupupupandaway.blogspot.com/

http://community.babycenter.com/groups/a6729133/unlimited_potential

[kctahoe]

Ugh! Sorry your friend is such a downer! I actually think natural methods are worth a shot when it is safe. I think with a lot of natural medicine the strength is in treating chronic illnesses that seem to be caused by a lowered immune system or something in the environment (like dietary sensitivities, etc.). For a kid with DS, I think there is some credit to that, and it could be worth a shot for next winter if you felt like it... but I tell you what, a lot of this is just DS and the bag of goodies each one of our children ends up with. I like to keep my kids on ultra healthy diets, try to get Charlie to drink my crazy, hippie vegetable juice whenever I make it (which, besides some echincea when he starts to get ill is the extent of our "natural medicine" regimen), but I would never gamble with natural medicine if he were ill... that is, I would use it, if safe, to prevent illness if possible (by boosting his immune system, etc), but I would never use it to treat, because like you said of your daughter, so much of what occurs is because of narrow passages, low tone, the fact that Charlie still put EVERYTHING in his mouth, crappy immune function etc. I think it is pretty ridiculous for people to be so emphatic about how we DS parents should be parenting our children. I hope you can let your friends comments role off your back... and I hope your sweetie feels better with Spring around the corner! Charlie is 6 now, and we had a fantastic winter for him illness-wise... and I don't credit his diet at all (okay, some... he has become a fantastically healthy veggie-eating kid! Finally!), I credit his physical growth and strength and perhaps more immune system maturity with age.

_________________
Kim. Wife to Ray, Mommy to Charlie (DS), Calvin, and Miles.

[greatlakesmom]

Thank you all for commenting. I appreciate your insights & encouragement. At the moment things things haven't changed a whole lot. My daughter is now on her 5th strep infection. The last dr. we saw said he's convinced the infection is just not leaving her tonsils. We saw the ENT & have scheduled surgery for her to have them removed. The earliest we can get her in is in late June, so she's on the waiting list if anything opens up sooner.

My friend has been supportive. It's just an odd reality that people just don't fully understand. How can they, if they're not raising a child with the same issues? I'm not against using natural methods & we do actually give her natural supplements. But, she doesn't seem to be able to shake this.

It occurred to me that when the ENT checked her tubes, he said they were almost fully out. Prior to having the tubes, her colds (winter) were brutal. After the tubes, there was a significant difference. So, maybe with the combination of needing new tubes/fluid in her ears & strep ravaged tonsils, after getting new tubes & having the tonsils removed things will start getting better. Praying for that.

I really do appreciate your thoughts. Thanks again!

[LinMac]

Quote:

It's just an odd reality that people just don't fully understand. How can they, if they're not raising a child with the same issues? I'm not against using natural methods & we do actually give her natural supplements. But, she doesn't seem to be able to shake this.

I'm all in favour of natural remedies and taking a wait and see, but when you have an ongoing chronic infections you have to listen to the doctors and come up with some kind of plan!
For what its worth I think your plan for surgery is a good one.
Why not talk with your frirend an ask for advice for some of the natural remedies for the recovery period.
Good luck with the surgery!

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 9 - DS)


First Communion Day

[greatlakesmom]

Thanks, Linda. Appreciate your thoughts & support!