Antibiotics: How Do YOU Roll? — 5 Minutes for Special Needs

Antibiotics: How Do YOU Roll?

by Maggie



                               

My Sick Little Man

Need a little help here, PLEASE: My Big Little Man (who is smaller by 5 lbs now than My Little Man) got that back-to-school cold going around. For us, that means an imminent sinus infection as his compressed sinus cavities — a trait common to those with Down syndrome — makes him prone to this particular affliction. In addition, he’s inherited my lousy sinuses, which I got from my mom, so he’s got a double whammy! This is his thing!

So there I was at my VERY trusted Doc on Tuesday for a preemptive visit. My Big Little Man was already congested to the point of no in- or out-going passage in either nostril — read: no drip, no air… just STUCK. He’d already had several nose bleeds — the beginning signs of infection for us… EVERY time — and he was talking like he’d swallowed giant marbles. The cough was developing, sounding croupish, so I knew we were starting down the slippery slope from cold to bleeding sinus to chest congestion to bronchial infection… too often leading to pneumonia. We know the route well as we’ve been down this path several times already.

So my Less-is-More Doc — a characteristic I absolutely LOVE about him, most days — takes a looks and says he can’t see any sign of infection… YET. Still, I KNOW it’s there, maybe in a smallish way now but growing fast! But, because Doc can’t SEE it… YET…  No antibiotics are prescribed… NOT YET  ANYWAY!

Fast forward two sick/missed school days: His cough is significantly worse and he’s had 12 thick, dark, coagulated bloody noses in 36 hours. Five of them just this morning. (We’re sliding!)

So I call the Doc and explain. Though I can’t see him nodding in agreement through the phone line, I know he was expecting this call. He listens and immediately says he’ll call in the script, warning me that if the nose bleed doesn’t stop we’ll have to go get it corterized. I know deep down that this won’t be necessary… It’ll stop bleeding once we get those darn antibiotics in him!

Yes, we’ve been down this road more than a few times. And, it’s the same trip every time… though, thankfully, most of the time we stop short of a bad ending, like nearly 3 weeks of hospitalization in the NICU for pneumonia with a partially collapsed lung. For the record, I DO inherently trust my Doc so switching is not an option I will entertain. I just wish we could address this particular, highly repetitive scenario a little earlier maybe. Because I know that every time we wait, My Beautiful Boys are missing school and playtime — both critical to their development — and, most importantly, that letting it go puts them at risk for developing a more severe illness, recovery from which is always precarious.

So, here are my questions: Do you have a child with Down syndrome and do you have/how do you combat the sinus issues? Would YOU push your pediatrician to give you the meds earlier because you pretty much know what’s coming (it has happened literally every time)… even though you might be risking the overuse of such drugs making them potentially less effective for your child in the face of “real” illness? Or, would you wait, like I did, until your child is sick enough for the pediatrician to see it and write the script? Finally, it recently occurred to me that perhaps the reason the pediatrician can’t see the infection early on is because of the compressed sinuses in My Beautiful Children who happen to have Down syndrome. Perhaps early onset is just more visible and diagnosable in children without compressed sinuses, without Down syndrome! Does anyone know this to be so? If it is, that is a good reason to get the script and meds at that first sign of illness.

Agree? Disagree? What’s your secret to addressing sinus issues? And, what’s your advice for addressing the pediatrician going forward? To script or not to script… early. THAT is the question! I would LOVE to hear what you all think… based on your wisdom and experience… because I know this may be our first ride down the slippery slope this school year but it sure won’t be our last. Thanks, in advance, for ALL of your help!

More from Maggie at walkonthehappyside.wordpress.com.

Email Author    |    Website About Maggie

I've become a self-proclaimed novice in the pursuit of [my own] happiness and in finding pockets of peace amidst the chaos of raising my 7-year-old identical twin sons who were blessed with an extra 21st chromosome (aka. Down syndrome) and my beautiful daughter (ADD) who vacillates between being helpful and being 10.

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1 Amy September 23, 2012 at 4:46 pm

Our pediatrician and I have an agreement – he’ll write the prescription, but if he doesn’t think it’s time yet, I’ll hold off a day or two before I fill it. I leave a message at the office if I start them so they can note it in my daughter’s chart. I’m usually right, but there have been a couple of times that she actually hasn’t gotten worse.

Good luck!

Amy

2 Maggie September 30, 2012 at 10:16 am

I should clarify that my Pedi will refrain from writing the script when he doesn’t see evidence (yet) of a sinus infection on examination. However, if/when I call within a day or two of our visit indicating that The Boys have gotten worse, he’ll call in the script to my pharmacy so I can pick it up in 15 minutes. He’s been quite amenable to doing THIS. I hear doctors are under greater scrutiny over calling in scripts… he ONLY does this if we’ve been in to see him and he acknowledges there’s illness (just not antibiotic-worthy illness… yet).

3 sarah September 23, 2012 at 9:10 pm

My son doesn’t have down syndrome, but does suffer from chronic sinus infections. We finally had a break through when the allergist put him on a prophylatic antibiotic. Yes, he still gets every cold that comes down the road, but only one or two turn into a major sinus issue that requires a longer round of antibiotics. No longer does he get pneumonia, bronchitis, ear infections, croup or any other crap associated with clogged sinus ducts. He takes zithromax 2 times a week year round and has for the last 4 years (he’s 11). He had spent many years on constant rounds of antibiotics trying to get clear before the prophylatic route. Find an allergist who supports a proactive treatment, or see if your pediatrician is willing to give it a trial period. Ours didn’t always agree on antibiotics until she began seeing the results in my son. Hope this helps and best of luck!!

4 Susan : ) September 24, 2012 at 8:13 am

My son who has DS had chonic croup for years since he was born…every month he would have an attack that lasted literally a week long. I tried everything natural. Nothing worked. I didn’t want him to have breathing treatments and sometimes we ended up in the ER. It was bad. I finally found Young Living’s RC blend. I diffused it at night in his room and put it on the sinus and lungs areas of his feet. I did this 6-8 times a day in the beginning. It brought relief! Still he had the croup cough and sounded horrible and when we did end up going to the ER, his oxygen levels were still high due to the oils. He has been clear for about 4 years. Now if he get a cold, he doesn’t go into a full blown croup attack, I just put oils on him and it is very tolerable.

I also use lavender and Valor on him for calming and it also helps him sleep well.

5 Maggie September 30, 2012 at 10:10 am

We do lavender and cammomile in their night time bath and use a humidifier in their room in winter. I always worry though that I might be introducing or encouraging mold in my very old house (built c. 1824). The Ayr Gel has helped a lot with the dry nasal membranes to prevent nasal cuts/bleeding and an invitation for germs to enter. Going to look up YOung Living’s RC blend right now.

6 Susan : ) September 24, 2012 at 8:18 am

I also do not give my son any dairy products. This has cut the mucus issues. Susan : )

7 Mary S September 24, 2012 at 9:27 am

My son is autistic but always has had sinus problems.I finally sat down and had a heart to heart talk with his doc and had him look back at his records.He then agreed with me to start taking a more proactive stance with the antibiotics so that it didn’t end up with a worse scenario.I also started him on a teaspoon of raw wildflower honey a day like I take and that has helped some.Now he doesn’t have as many infections as he used to.I don’t know if it’s the honey or just that he is growing out of it but it didn’t hurt to use the honey since he loves it.

8 Maggie September 30, 2012 at 10:04 am

Mary – I think I’ll try the raw wildflower honey. Sounds like something the kids would even like!

9 Janet September 24, 2012 at 10:29 am

I’m not dealing with Ds. But my son (11) has autism and was born with a complete bilateral cleft lip and palate. His sinus cavities and related parts are a mess. Since he is non-verbal he can’t even tell me when he isn’t feeling good. And the gunk goes down his throat and not out the nose. And just to make life interesting he is on his 10th set of PE tubes.

I adore my pediatrician. But there are times when she frustrates me. She doesn’t understand why I am so very concerned about his ears. And there are times when she will say he isn’t in pain but his behavior tells me otherwise. But she is good about prescribing an antibiotic for a sinus infection. I do trust her when she tells me that she thinks it is just a cold. But I always have the instruction to call if there isn’t significant improvement in 2 days.

That being said, I really do understand where you are coming from. Besides all the valid points you raise about missed school and play, sinus infections can cause ear infections which can then cause hearing damage. I really like hearing the out come from Mary — sounds like an approach to try.

10 Maggie September 30, 2012 at 10:02 am

I know that with kids with DS, generally they do not express the expected level of pain that a typically developing child does. That said, the recommendation to medical professionals is to treat for the level of pain you would expect for anyone with the “condition” being treated. For instance, My Boys came out of tonsillectomies/adenoidectomies in relatively good spirits (I’d like to add “as usual”)… but they wouldn’t drink b/c of the pain. We had to TELL the post-op staff to provide pain meds. Sounds like you’re in the same boat. As for the “just a cold” comment, sadly, as you can see by the other comments, “just a cold” can send many of our kids to the hospital… eventually.

11 Charity Deleon September 24, 2012 at 10:35 pm

My daughter is 3, she has cri du chat syndrome and a ton of medical complications. Pan sinusitis and what seems like a never ending sinus infection is a nightmare in our world. The thought of pneumonia horrify’s me for fear that she will not be able to fight it off. Because of her constant exposure to antibiotics since birth she is immune to almost all those used to treat childrens infections and we have had to resort to antibiotics that have not yet been approved for children. Scary I know but had I not agreed she could have died with the types of bacteria that show up in her little body many times over. We just relocated from FL to NC three months ago and so far our new doctor is very respectful of my wishes and will prescribe them at my request at a visit because I know when we are about to face something ugly. My previous doctor was amazing too and we worked as a team and she would give me a script but ask me to wait 1-3 days and if there was no improvement to fill it. This way I had the option without having to call back and it gave me peace of mind. With my daughter anything can turn into pneumonia so even a common cold can be deadly. I made it very clear to our new doctor what my wishes are in my daughters care and she respects that.

Good luck!

12 Maggie September 30, 2012 at 9:09 am

Oh your poor little girl… I can’t imagine not having medication that helps relieve the pain of childhood illnesses. My Guys are mostly healthy but, like you, the common cold can easily, and has several times, lead us to hospitalization for pneumonia… that seems to be our thing. Lucky you finding a second great Pedi. I think with some of our children, a good (and humble) Pediatrician is willing to listen to the parent who ALWAYS knows best how to handle such things. I just can’t imagine leaving my Pedi! We love him and he’s been awesome and very well-informed about everything that’s ever come up. He just waits that extra breath for the sinus infections… don’t know why. Next time, I’ll ask for the just-in-case script.

13 Jo September 25, 2012 at 4:06 am

Maggie we don’t deal with sinus stuff like you. Ours tends to a upset gastrointestinal system and migraines that raise thier heads.
I just wanted to wish you well as you navigate all this and work out what is best for your boys.
Plus i wish parents of kids who are sick would keep them home instead of sending them into school where they can spread all those bugs that knock our kids off so much.

14 Maggie September 30, 2012 at 9:01 am

I can’t even imagine a child with a migraine… poor things. We did the gastrointestinal stuff (what a mess) up until recently when we apparently and miraculously outgrew the issues. Yeah! As for the parents sending sick kids to school… like teachers are babysitters… Ugh!!! I’m a HUGE believer in the “when in doubt, hold them out” tenet which teachers sometimes question me about, as well as keeping them home 24-hours after the last symptom goes away… All the way better or they don’t go back to school. It was my Mom’s rule and the very few times I haven’t followed this The Boys crashed big time. Good luck with yours.

15 Val September 25, 2012 at 6:47 am

Do you keep track of which antibiotic he’s getting each time? That way you can cycle through them and hopefully slow down the resistance he will inevitably build up. If the antibiotic helps then I would keep asking for them but rotating it. I also like the idea of asking for a script that you can hold onto and wait 24 hours if you and the doc aren’t quite on the same page.

16 Maggie September 30, 2012 at 8:55 am

That’s a great idea Val. I didn’t track the antibiotics but I will start to do so. We mostly discovered that Augmentin works best for the sinus and double ear infections (but makes them throw up so they fight me tooth and nail to take it). And the pink stuff — amoxicillin — works well for most other illnesses including bronchial infections for us… Even better, they LOVE the taste of it. But it doesn’t make a dent in the sinus infections. Only once we’ve had to go as far as “real” penicillin. The upside, My Boys respond almost instantly to antibiotics. Within 24 hours of the first two doses they’re in serious recovery almost every time…. If/when we catch it in time. If we don’t, we slide down that ugly slope.

17 kadiera September 25, 2012 at 10:06 am

I have chronic sinus issues, and while my kids don’t have DS, they do have chronic lung disease and tubes in their ears (and we believe sinus issues too).

I haven’t managed to get my doctor to write scripts with refills for me, but they no longer question when I show up with a sinus infection. Meanwhile, I’ve been doing sinus rinses (not sure how these would work with a child, but when I figure it out we’ll be doing them too) with a probiotic capsule emptied into the normal saline for the rinse, and it’s meant far fewer actual infections….

18 Maggie September 30, 2012 at 8:46 am

Thanks for the info. I think having the script to fill… just in case… is the way to go. Going to try a saline rinse for My Boys. I did it a long time ago and they HATED it. I regularly use Ayr Gel, especially during the winter when the air in the house goes deadly dry and stale. Going to try and get through the winter without illness… That’s a big dream! Good luck with your kids and your sinuses. I’ll be thinking about you as I struggle through with mine.

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