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Topic: Update on Hayden   
03-22-2006 11:37 PM
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hayden's mom  
Senior Member

Location: Round Rock, Texas
Registered: Sep 2005
Posts: 582
Last visit: 03-24-2006

Well, we had our ENT appointment yesterday and then a follow up again today. Unfortunately, they do not think Hayden would tolerate surgery very well right now. She also said that the success rate of the surgery, even on older children, is about 35%. So...we are going to return to the infectious disease Dr next week. He is now on a different antibiotic and they added a nose spray (which he hates). We are going to schedule more allergy tests next month as well. I talked briefly with the infectious disease doc this afternoon and she isn't sure there is a whole lot they can do. They may keep him on a maintenance antibiotic or try and wash the sinuses out and leave him on steroids. There doesn't seem to be a whole lot of options at this point. I will update again after the next round of Dr appointments.

On a different note, Holden, (my 6 year old) has strep throat for the second time in 3 weeks. This is like the 4th time this year. Looks like we will be scheduling a surgery to take his tonsils out very soon. Thanks for all the prayers for Hayden, hopefully they will find something that works for him soon.
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Mommy to:
Holden 6
Hayden 2 (ds)
Jacie 1
And the Angels Danced the day you were born

03-23-2006 03:11 AM
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RachelG  
Senior Member

Location: YorkshireUK / Indonesia
Registered: Mar 2005
Posts: 223
Last visit: 03-24-2006

Sorry to hear that you haven't got any real answers to Hayden's problems yet. Hope things improve soon.
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Rachel
Proud mummy of Benedict (05.02) DS

03-23-2006 04:38 AM
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LinMac  
Senior Member

Location: Dublin, Ireland
Registered: Oct 2005
Posts: 581
Last visit: 03-24-2006

Haydens Mom

That's a bit disappointing for you. When you go to these visits I guess we expect an instant answer or fix, if you know what I mean.

I still think I would look at homeopathy as it seems you would have nothing to loose cos surgery is not an option at the moment. You can use homeopathy medicine in conjunction with regular antibiotics. It's much more holisitic in it approach.

I took Robert to a regular doctor who was also qualified in homeapathy. I took him cos he had hearing loss in the first few months but there was no infection in the ears. I'd never used any alternative approaches for the kids, except I'd had reflexology for fun a few times myself.

I was very surprised at the amount of questions he asked me and my hubbie about our family histories with alleriges. We both have serious allergies. I think the climate here doesn't help. He also took a detailed family history of other diseases, sibling allergies, our home environment, foods we eat, type of bed linen on beds, etc.

The funny thing is Robert seems to be clear of allergies, but my older daughter is only now starting to grow out of some of them. If I'd known about homepathy a few years ago might have saved myself a lot of grief and worry over Hannah.

I explained that I was taking a 'wait and see' as Robert was too young for ear surgery. He was very supportative and was not in favour of surgery either. Anyway he gave me two type of medication that were designed to work on the ear.

I'm just sharing my experiences here.... no pressure. Just reminding you there might be other things worth considering.

I hope the antibiotics work this time. I know infections and allergies can be very dibilating for children. I too had a childhood distrupted with allergies.

Lets know how both your boys are getting on.


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Linda & John
mom to Hannah Kate (Age 7), Robert (04/16/2004, DS)

03-23-2006 06:08 AM
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ajbest  
Super Member

Location: NC
Registered: Apr 2005
Posts: 2070
Last visit: 03-24-2006

sorry it seems like there's not much to do yet for Hayden on this sinus stuff. at least they are being cautious. maybe the additional allergy testing will help find something that he could avoid or take to alleviate some of his problems. we will still pray for Hayden and Holden too - poor guys. hopefully they will both be feeling better soon. hang in there and keep the faith, aj
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03-23-2006 08:53 AM
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Hannah's mom  
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Location: Adironadack Mountains, Upstate NY
Registered: Jul 2001
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Last visit: 03-24-2006

I am sorry you didn't get the answers you were seeking.Hannah has also had serious sinus issues most of her life.I know it is so frustrating because there are not many options. For what it's worth before we tried Hannah's surgery we did a nasal spray for about a year. It was called bactroban nasal spray and a bit controversial. It is usually found in a cream form but our Dr found a new way to formulate it into a spray. Most Dr's have no idea what this is but it did work for Hannah for a time until she became resisitent to that as well.I really hope Hayden feels better soon.
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03-23-2006 10:07 AM
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Annieo  
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Location: Minneapolis suburb, MN
Registered: Jan 2003
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Last visit: 03-24-2006

John's ENT is convinced all kids with DS should be on prophylactic antibiotics because of chronic sinus infections, so Hayden isn't alone. I won't put John on antibiotics because he's already on so many drugs but I might consider it if he wasn't.

I sure hope he's feeling better soon. I always hate to hear that Hayden is sick because I see his little face on your signature pic and can't imagine him sad and sick.


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Ann
Mom to Sally, Mark, Jane, John (12/02, DS), and Paul

03-23-2006 10:17 AM
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Stephanie  
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Location: Yardley, PA
Registered: Feb 2004
Posts: 2612
Last visit: 03-23-2006

I am so sorry to hear that Hayden is still not feeling well. I know the feeling of hopelessness that you are probably feeling after you left the doctors. I would get a 2nd and 3rd opinion. If he is fairing so badly I would hope they could do something more.

Oh poor guy, I am praying for you guys!

We too have tons of sickness going around our house. I cannot wait to do my spring cleaning and rid our house of germs!
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Awesome Big Brother Joey 3/8/97
Beautiful Daughter Megan 11/8/03
Precious Lil' Livi 7/6/05


03-24-2006 10:04 AM
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Libby  
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Location: Louisville, KY
Registered: Jun 2002
Posts: 2097
Last visit: 03-24-2006

Bless your heart and Hayden's, poor little guy! William has been through the exact same situation as Hayden minus the fever. He is always congested or runny nose or whatever. I know how you feel. We've done the pediatric infectious diseases as well.

William will be having his third set of tubes at the end of April along with another nasal endoscopy and possible adenoidectomy revision. He is on daily meds that sometimes bring relief, sometimes not. He's on Singulair, two nasal sprays, entsol nasal spray to clean out, dehistine syrup and that's it, I think.

I'm thinking about you guys and hope you can find some answers, if you do, will you let me know, haha.

Take care!!

Libby
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Mommy to William (12/17/01 Ds) & Sam (6/17/03) & Ellen (10/5/04) & Baby #4 due June '06

03-24-2006 12:08 PM
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McKenna  
Senior Member

Location: San Antonio, Texas
Registered: Feb 2006
Posts: 177
Last visit: 03-24-2006

So sorry Hayden's not feeling 100%! Give him kisses and we will pray for him to get better!! We're all kinds of sickies over here right now!!! NO FUN!! We're also praying for Holden!!
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03-24-2006 12:16 PM
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marci  
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Location: lancaster, Pa
Registered: Dec 2004
Posts: 1228
Last visit: 03-24-2006

The sinus issues are such hard one. My husband has them and it is s constant battle with antihistmens(sp) and ear drops and nasal sprays. Hopefully Hayden will get better as he gets older. Sorry I don't have any suggestions. I a friend that swears that all this stuff is diet related. Maybe you can check into that. Larrys says he'd rather deal with the sinus and ear stuff then eat twigs and leaves.LOL
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Marci
Mom to Caleb, Cody, Evan, Ethan, Alex, Anna, Joni (ds, 4/03)

"My mother taught me very early that I could achieve any accomplishment I wanted to. The first was to walk without braces:"

Wilma Rudolf winner of three gold medals in running events at the 1960 summer Olympics

03-24-2006 04:37 PM
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huskies9798  
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Location: cincinnati ohio
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oh poor little guy I hope he starts feeling better soon
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chris
mommy to brooke ds 8-30-04
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