Basically every time she even gets a slight runny nose (even if its from teething and not cold, etc.) she coughs and wheezes until we are on the verge of taking her to the ER. We've had a few VERY close calls this month where even after ALL the neb medications continually we couldn't get her breathing under control. It's VERY scary stuff.
She's also developed this very odd rash that runs along her "dermal nerve" down the back of her left leg. We've treated it every way possible, and over the last 4 months it hasn't gone away. BUT it also hasn't gotten worse, which is a good thing. However, wen she is truly sick I've noticed that it "flairs" up as I like to call it - basically it just gets redder. Here is a picture of it while red red red, she was in mid sickness:
When she's not sick, its still there, just not red. Very very VERY odd. Even my pedi who has 25 years experience has never seen anything quit like it. He does think they could be related to her RAD and that she has some sort of auto-immune issues. So Feb. 9th we are going to The Phoenix Children's Hospitals dermatology department- best of the best- to have it looked at and hopefully get some answers to this odd thing.
Since the arrival of this odd rash, bath time has become a NIGHTMARE. She literally scream bloody murder and WONT sit down in the water. It obviously bothers her skin, so they are a in out, get-er-done type process now, and also not everyday anymore. The pedi told me NOT to bath her everyday, which that is very hard for me. She's a toddler, and they are gross little things. So on the night of No Bath I give her a whore bath....you know....a wipe down with a washcloth ;) Ah..Poor M and the whore bath.
The Pedi did also say to "be prepared to see an allergist in the future, lets see about this rash first then we'll go from there".
So there you have. All of M's health issues. Bring on the neb twice a day (or more sometimes!) is challenging, but we are finding ways to make it doable. Poor little think is such a good girl, so knows its part of her routine and will just sit, and even hold it to her mouth/nose, while she waits till its over. I just hate this for her. No parent wants a sick child, especially one with ongoing issues like this. Don't get me wrong, I am VERY aware that things could be much worse, and count my lucky stars every day. I still cat believe I'm her momma and that she's my daughter. How did I get so lucky AGAIN?
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8 comments:
Awww, bless her heart!!!! So sad. My lil one has breathing issues, but nowhere near this. And it is scary. Praying for you and your sweet babes!!!!!
p.s. We call those monkey baths, mom!!! lol. You cracked me up with that....bwhahahaha!!!
so could our kids be anymore alike?!? well minus the rash, Jackson only gets that when his fever spikes. The allergist - don't mess with before 3 because their T-cells aren't mature enough at two, despite what you're pedi will tell you.
Ask your doc about a xopenex spacer inhaler, for hyperactive airway attacks or those on the verge ER trips.
Our trip to the specialist yesterday didn't really help us much. We added a third nasal steroid to the daily mix and another 6 weeks of antibiotics to hopefully knock out the chronic sinus infection that triggers the airway. He said that a normal kid should be sick 90 days out of the year - yah Jackson hasn't been well for 90 days since birth.
Once you get her under control, you should be able to drop down to one neb treatment at night. let me know her dosing, we were on .5 2x a day and now 1ml once per day. I have a box of .25 from when Jackson was little, if you need it I'll ship it to you this weekend!
hang in their momma!
Aww , hope your little one feels better soon. I was speaking to someone just yesterday about allergies and stuff , she mentioned that her nephew was allergic to milk and it presented as asthma , bronchitis for years . Not saying thats the issue here.. but figured it didnt hurt to mention it..:)
Poor Miss M!
BTW - she looks JUST like you!
Aww I am sorry to read about your daughter. My son who is 3 1/2 has RAD as well. Well, just diagnosed RAD anyways. He's been on a nebulizer for a while now. He takes singulair daily, along with Zyrtec and his "Puffer" (nebulizer) of Pulmicort. Then albuterol as needed. He gets that rash as well, but the allergy testing has come back negative for everything.
We just went to the pediatric pulmanologist on Wednesday and we changed things up a bit. Instead of the neb, we have Rx for Flovent with the spacer (SO MUCH EASIER then the neb), staying on Singulair, and have albuterol as needed before any exercise.. I hope all this helps. We're not doing much more until winter is over. But like your daughter, at the thought of a runny nose, we know we're going to have some long weeks.
Since being on the zyrtec it has helped so much, as he would get a runny nose when the weather would change, or if allergies were bad (even though he had neg results with allergy testing)or if it rained. We've had a great few weeks so fingers crossed!!
oh man! I'm just seeing this post but I feel for her! I've lived with asthma and awful allergies my whole life and it's not fun. We had brady tested at a year for major things, like wheat, corn, milk, etc because he was having major rash issues on/off. I hope she feels better and you can get a handle on it and to be honest, i think we will be headed down the road to asthma with b.
I had a rash like that as a child, it is called lichen striatus, maybe ask your pedi about it. As a kid i saw a pediatric dermatologist and she was the only one after multiple doctors who knew what it was.
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