October 9, 2015

Finally Some Relief In Sight!

Oops I did it again. I keep disappearing. Life as a work-at-home mom rather than just hanging out with my babies watching soaps all day (not a cliche, I may or may not have done just that for the last year) has been quite the adjustment. I'm exhausted by 10:30 most nights and all I want to do is chill after bedtime. This does not make for very good writing practices but I assume my body will catch up at some point. Until then here's an update on something that has driven me nuts for a long time. Plus some cute pics of my beebs from the last week.

The bane of my existence for 12 months. The spot, not the cute baby.
When Jules was about six weeks old she developed a small, bright red spot on her right cheek that had me totally freaked out. I immediately called her Pediatrician and scheduled another appointment (we'd already been there 3 times for check ups and once for me to get permission to stop supplementing). We went over what I'd been eating as she was bottle feeding my pumped milk, any new soaps, detergents, lotions we'd been using and any other changes that had been made. The doctor chalked it up to eczema, gave me some eucerin and aquaphor and sent me on my way.

Cuties blowing raspberries on the climber
Initially the creams cleared up the spot but it still came and went with no rhyme or reason and would flare up randomly. I've asked about it at every check up and am always told the same thing. At about six months old it cleared up from the right side and two weeks later was back in full force on the left side of her face.

I started to do some research and found a number of things to try on my own:

I started using a cortizone cream mixed with aquaphor and a+d ointment. It worked until it didn't anymore. Just like everything else. No matter, the pediatrician warned me not to use cortizone because it thins the skin. Awesome. It's still the only thing that does work so I use it sparingly and just keep the spot as moist as I can with a+d and aquaphor in between.

I also introduced a probiotic into her diet with her daily yogurt and that actually worked really well at first. I should have started this sooner since she was on an anti-biotic (prophylactic, since UTIs can be a complication of hydronephrosis) since she was 12 days old but I was told by nurses in both the NICU and at the Ped that it wasn't necessary at her age and to let the anti-biotic do its' job (!?!?)

Almost immediately after eating it for the first time her face cleared up. There was still a shadow and a pinhead size dot but I was amazed at how much better it looked.  But then it was back again just a few days later. Some days the pro-biotic seems to work better than others but since that first batch it has yet to clear it up almost completely.

"Is that you or is that me?"
Then I stumbled upon the idea that it could be food allergy related. I asked the doctor if we should have her tested for allergies and they shrugged me off, telling me it wasn't worth the time or pain for her, that we would know by now if she was allergic to something other than eggs (which she reacted to at 6 months but is a very common childhood allergy). I joined a group on facebook for children with food allergies and sensitivities and I met someone whose child had the exact same spot that was caused by food allergies. Her doctors kept shrugging her off like mine until he developed a horrible infection. That was it for me, I called the allergist the next day.

We had her testing done Tuesday and guess what? It's not food allergy related.

It is a freaking infection. In her face. And considering it has looked this bad since March it might have been there since then. Eating food didn't hurt it per se but it didn't help it either with the constant irritation over the spot. Just bad luck I guess? Nope.

The way the doctor explained it was that it likely started out as eczema from which she developed a small crack in her skin. At some point this was exposed to something nasty, most likely staph, which got underneath her skin. All the creams in the world could help clear up the rash itself but none of them were targeting the cause of the problem.

His treatment? A week or so of an antibiotic cream 3 times a day along with a stronger cortizone cream to soothe the rash and a preventive slathering of aquaphor on her cheeks before eating or whenever it looks dry. He said it will likely disappear completely within a week.

Viv says Hooooooraaaayyyy for Sissy!


One thing I've noticed is that I always said the spot never really bothered her - except when I tried to put her cream on it. She'd scream and thrash and push it away. After 2 applications of the antibiotic cream she has completely stopped doing that. I put the aquaphor on before she eats and she lets me with no problem. I put the cortizone on and she actually leans into it, letting me rub it in. It probably hurt like hell and irritated it further because she had a damn infection and I didn't know it. I just wanted desperately to heal it I forced her to sit through it. Now that it's healing I'm not hurting her anymore and she doesn't mind. Kills me.

I am happy to finally have some answers but I am so frustrated that it took so long and at the idea that something could have been done months ago to help her.

I'm upset that I had to go to the extreme of having her poked 9 times in the back and further grow her detest for doctor's offices. 

I'm pissed as hell at the idea that this was missed by the professionals, who did not listen to me when I explained that it was not responding to their treatments, that it just kept getting worse, the ones who just kept pushing the creams and who warned me not to use cortizone or neosporin (the ONLY things that worked) because it would thin and further irritate her skin.

Cracker Thieves!

Why wasn't this ever even brought up? Why didn't I know better and ask for a second opinion from the get go? I mean the girl has been in and out of multiple hospitals, emergency rooms and doctors offices since birth. The idea that she could have picked up an infection anywhere isn't so far-fetched. And really, if it was truly eczema and I was taking every measure to prevent exposure to irritants (including buying all the mega expensive "free" and "natural" soaps, lotions and detergents, experimenting with her diet and offering g-free and dairy-free foods, etc.) wouldn't it have cleared up at some point?

Out, out damned spot!
I'll get over it. And I'm so happy to finally have an answer. I just wish it didn't have to take almost 14 months to get one.

It already looks a bazillion times better. She has completely stopped rubbing it, is sleeping better and I can tell she feels better. Finally!

If there is one thing I've learned it's that you need to trust your gut when it comes to your kids. I knew 8 months ago that something more serious was going on and I didn't say anything for fear of looking like a crazy, overbearing Mom who got her medical degree from Google. But I was right and I wish I had advocated for my child sooner. Lesson learned!


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