Apollo spent most of Tuesday night coughing. And by coughing I mean episodes that lasted several minutes and often ended with him literally choking on his mucus (remember he has the equivalent of a rubber band wrapped around his trachea and esophagus). And yes, he’s had his dtap shots, so no worries there. Wednesday morning found him coughing even more. So I called Wednesday morning to see if I could get him in to our doctor. He was out for the day but I could make an appointment with Dr. O.
Dr O, if you recall, is the one who disastrously stitched up Avi’s head back in 2009. But then again she’s also the doctor who acted quickly and had me take Apollo to the ER when he had RSV and pneumonia. So maybe she’s great and she just doesn’t like doing stitches…
When we arrived I explained to Dr. O that Apollo has a double aortic arch and is having it repaired on March 7th. We talked about his cough. I explained the severity of it and that he wasn’t able to eat or sleep. She said, “Okay, I’ll write him a prescription for Promethazine-Codeine syrup”. She explained the Promethazine-Codeine would make him sleepy. I remembered that certain medicines that cause drowsiness (like muscle relaxers) aren’t safe for someone with respiratory issues. So I asked if this medicine could supress his respiratory system at all…”No, not at the dose you’re going to give him”.
So, off I went on my merry way. But something was bothering me in the back of my mind. I kept thinking about the pulmonologist saying “Apollo has to work way too hard to breathe”. “It’s like he’s running in place all the time”. “It’s like he’s breathing through a straw”. I know he wakes up at night because he can’t breathe…so what if he couldn’t wake up to breathe? I decided to ask the pharmacist about the drug. He gave me the same answer, “It’s fine at the dose you’re giving him”. So I came home and read the information included. At the very top of the page was this:
Warning: This medication should not be used with children younger than 6 years due to an increased risk for serious (rarely fatal) slow/shallow breathing (respiratory depression). This infrequent side effect may occur even with usual prescribed doses….it goes on to say some manufactures say this combination should not be used on children younger than 16.
Keep in mind, this is not buried down in the side effects, but is the first thing you see on the information sheet. Now tell me, if Apollo was your son, would you be comfortable giving him a medicine with a warning like that? Well I wasn’t.
Remember how I mentioned that I ran into the pediatrician who treated Apollo in the hospital at a friend’s baby shower? Well Tami filled her in when he was diagnosed with his double aortic arch and she sent me an email offering to answer any questions and be a sounding board if I needed one. So I called her. Unfortunately I couldn’t reach her.
I have a handful of doctors, former doctors and future doctors who read this blog and have emailed me in regard to Apollo. So I emailed two of them, and the local pediatrician I couldn’t get on the phone. I let them know about Apollo’s cough and asked if they thought this medication was safe for him. I got two responses that afternoon (thank you Robyn and Susan).
Both said, no way would they ever give Apollo that medicine. So I spent the afternoon worried about his cough and worried about the medicine. Apollo spent most of Wednesday night coughing and then was down with a fever all day Thursday. So I called the doctor’s office again and made an appointment for him to see our family doctor.
Friday morning I was back at the doctor’s office. Our doctor was rather guarded when speaking of his colleague, but did say, “I never prescribe that medicine. Dr. O uses it all the time though”. And no, he didn’t think I should give it to Apollo.
*sigh*
I feel like I can’t let my guard down for a second with him. Even when talking to a doctor.
Friday night the local pediatrician called me and spent ten minutes on the phone discussing Apollo. She agreed that was not a medicine that should ever be prescribed to Apollo. I guess you could say, four out of five doctors think that could be a dangerous medication for Apollo.
*sigh*
What a week. Sickness and fever. Coughs and chills. A day full of appointments at Seattle Children’s. Homeschooling and meals. Feeling despair as I watch Apollo cough and choke. Then feeling so thankful that by coincidence God’s providence, I can talk to the very pediatrician who treated Apollo for his RSV and pneumonia back in June 2011…
It’s been a wild ride. I’m just thankful we’re all still holding on.
Did they come up with a way to help Apollo with his current cough?
Well, our doctor prescribed just coedine, but the pediatrician said she didn’t think that was an option for him either and suggested children’s benadryl, because it didn’t have anything that might affect his breathing…but Chuck couldn’t find it anywhere…
Eesh. I’ll pray.
So you know, Benadryl (the brand name) is off the shelves in many places due to manufacturing issues.. but diphenhydramine (the generic version) should be around. it is labeled for >4y though. (not an pediatrician but I am a pediatric rn)
JM, Chuck finally managed to locate some!
To my knowledge “Children’s Benadryl” doesn’t exist… we just dose Benadryl based on weight. My hubs is however a Dr so we know that info. i think that is another that says “contact your Dr if under 6” So it wasn’t Chuck:)
We have never heard of that combo you mentioned. That is actually an anti emetic…Hmmmm..maybe an oldie but goodie….but not in A case?
So sorry for all this. That pic of Apollo is so very sweet yet I feel so bad for him. Is there a date for surgery? i probably missed it.
Liz, we did find some labeled “children’s” and the local pediatrician gave us the dosing. It is probably a reasonable medication for a child who doesn’t already struggle for every breath… Surgery is March 7. We head down March 6th for pre-op and were told to plan to stay a week.
Thanking God for whispering to you… how tired you must be of keeping it all straight and Apollo safe.
I don’t think Children’s Benadryl is aged that young either..
Kristal, true, but I had a pediatrician (the one who’s seen him at his worst hospitalized) recommend it and tell me what dose to use…
My goodnes! Thank the Lord you are so switched on with Apollo’s situation. A less vigilant parent would have given the child the medication without giving it a second thought, with disastrous results. I feel terribly sorry for you having to go through such a merry-go-round to reach a reasonable outcome for dear little Apollo. You must be so exhausted. I do hope he is starting to feel better. It must be hard on the other children when you have dramas like this. Roll on March for that operation!
Best wishes, Joolz
That is so scary!! I cant believe a doctor would prescribe that sort of medication to Apollo either! I’ll be praying that Apollo gets better and stays healthy for his surgery.
–> 5 out of 6 doctors!
I can’t find children’s benydryl recently either. I’m SO sorry that you’re having such an uphill battle. Glad you listened to that inner voice. I’m not a fan of that cough syrup with codeine stuff. They try to prescribe it to my daughter when she gets upper resp. infections.. when we DO use it, she gets pneumonia every time. The docs swear there are no correlation but I see the same thing each time so I’ll use my judgement instead.
I feel like I have to constantly apologize for others in my chosen profession. Sorry you had such a bad experience – glad you are trusting your instincts, being vigilant, and keeping Apollo safe. It’s a skill that you will definitely need when he is in the hospital.
No, Mali, don’t apologize…just remember all these stories when you’re a doctor.
Hi Renee. You don’t really hear from me (not sure if you even remember me), but I wanted to let you know that I still follow your blog from when I moved from B’ham to AZ 5 years ago and that I am praying for Apollo and this arduous health journey you are on with him. Praising God for that Mommy instinct he gives us (a.k.a. guidance of the Holy Spirit) and that you got the right information for him. It is so hard to watch your kids suffer and not be able to help, so along with praying for dear, little Apollo, I am praying for *you* to know God’s sustaining care and to have his peace nestled deep in your soul. Seems He’s already gifted you with wisdom and is leading you faithfully. Praying the road becomes easier soon and that God is glorified through it all!
Of course I remember you! And thank you for your prayers.
This is the first time I’ve been to your blog. My daughter was just diagnosed on Wednesday with a double aortic arch. She is 15 months old. I can’t imagine the torment you have been through with what seems to be a rather long list of incompetent doctors! We are seeing the cardiologist on Wednesday and will be scheduling a CT scan. I was looking for blogs of people who have been through this. There aren’t many. I’ll be checking back to see how his surgery goes.
Katie, I’m so happy you found my blog. I’ve been searching and searching for a blog about a child with DAA, but haven’t been able to find any 🙁 A blog reader was actually the first person to suggest a double aortic arch. Her son had one and didn’t get diagnosed until he was eleven! Can you imagine? Here is a link to the post about her son. There is also a small facebook group: Double Aortic Arch and CHD Awareness Support Group. Good luck!
11! My goodness! I don’t see the link though, am I missing it?
Thank you for the advice about the Facebook group. I asked to join just now.
I couldn’t find much in the way of information at all. Nothing that wasn’t heavily medical and nothing that told me what to expect with the more day to day stuff. So I also started a blog last night. Hopefully it will help someone. If you are interested you can check it out.
Thanks so much for replying!
I was thinking it didn’t leave a link when I put it in the “website” field. But it links through my name….just in case 🙂
Renee,
I have some dye-free children’s Benadryl if you still need it. It’s what we gave Owen when he had the bad reaction to the antibiotic I told the doctor I didn’t want him to have. Owen took it when he was just getting over pnemonia and it didn’t cause any more breathing issues.
We’re currently not sleeping all night while we watch Owen for more seizures, maybe we should bring Apollo over here and we’ll watch his breathing along with Owen’s twitching, then you and Chuck can get some sleep at least.
Kara, Chuck finally found some. Great idea 😉 And don’t worry about Chuck, he gets a full night sleep…
http://www.bakersdozenandapolloxiv.comwww.littleearthlingphotography.com
Good mama for trusting your instincts. Weve had similar situations, love/hate opinion about doctors. I almost refuse to go into anyone who isnt MY dr. and knows our particular familiy and all the kids breathing problems. And learning the hard way to get those second and third opinions. Keeping you all in our prayers! Thankyou for the updates.
Renee, I’ve never posted here before, but I’ve been following your blog with interest for quite some time. This latest post is absolutely chilling. Apollo is supremely lucky to have a mother like you. I look at my own little girl, just 13 months old (and my only so far), and hope that I would have the strength and wisdom to protect her like you do for Apollo if ever she should need it.
Just wanted to send you some support. hopefully he gets to feeling better very soon. You are in good hands at childrens. take care.
Is the little guy doing any better? I’m sure you’re counting the days till his surgery.
Robyn, Yes, he’s doing better. Last night was the first night he wasn’t up with coughing fits.
Hi Renee,
Not a frequent commenter here, but I enjoy your blog and I also spent a summer on a Teen Missions team. That was a defining moment in my life!
I am also a medical student and I have 2 children. We live in France. Our whole family has just had pertussis, including my 2-year-old, despite the fact that he was vaccinated recently. The way you describe Apollo’s cough sounds a lot like pertussis. Of course I can’t assure you that’s what it is, but I just wanted to alert you to the fact that he could have it, despite the vaccine. Also, doctors often don’t diagnose it correctly for a variety of reasons.
I think you are doing a great job partnering with your doctors to get Apollo the best care possible. Doctors are highly trained experts in medicine, but you are the most highly trained expert on Apollo. You are being a stellar advocate for Apollo, while still treating your medical professionals with respect.
May God lead you on, one step at a time, and renew your strength.
Helen, our state has had an outbreak of pertussis, so thankfully the doctors are aware and checking for cases of it. Thank God his cough is gone…now to keep him healthy until his surgery day!
When/where did you go with Teen Missions?
I’m glad the cough is gone.
I went to Zambia with TMI in 98. 🙂