Azithromycin and General Anaesthetic; cardiac problems?

[StellasMum]

I should say we are in the UK, my 11yr old dd has not been diagnosed PANDAS but has been diagnosed with TS. Has many throat infections, had scarlet fever as a small child and many of the usual PANDAS symptoms. She gets into terrible rages and has sudden increases in tics, thats when I know her throat is bad again without even looking. I take her to the DR and as soon as she's on antiobics, it all improves.

 

She is due to have her tonsils removed at the end of July because of repeated tonsilitus and missing school. I have asked for antibiotics before and after surgery but she can't have her usual Erythromycin because it interacts badly with aneasthetic. Our paed has suggested another drug she has never had before; Azithromycin. He says she can only have it once a day for three days before surgery. This doesn't follow any of the PANDAS advice re tonsilectmy as I would have liked a longer course.

 

My concerns are that it has been linked to cardiac problems and deaths. My dd has never had her heart checked but she does occasionaly have chest pains. I had always thought it's anxiety but am not sure. I'm worried this drug and general anaesthetic, plus maybe an undiagnosed heart condition could be a very bad combination.

 

I'm also not convinced about the drug itself. I've read it isn't very effective at treating strep, can cause reinfections and so should be taken for 5 days instead of the 3 my Dr suggests. But then I read a study that showed the fifth day of taking this was the day most people affected suffered heart problems and died.

 

I will voice my concerns but wonder if she should take this drug prior to surgery at all. Will they check her heart first? They should also check potassium and magnesium levels before prescribing this drug so that would mean taking bloods. The NHS here moves slowly and I don't think we have time to get all this done before te 31st but I'm not content to just take the Drs advice at face value and 'risk it'.

 

I'm getting so stressed about complications, I wonder if she'd be better just getting the tonsils out without abx and having erythromicin for two weeks after? None of the options seem ideal and I don't seem to have much of a choice. Any advice or info would be appreciated. Thanks very much. x

 

 

[StellasMum]

I'm starting to consider not taking the tonsils out at all actually and carrying on as we are, getting a course of antibiotics when they're infected. It won't stop her missing school and other things and she won't be happy but I don't have the support I need to really treat this as a PANDAS tonsilectomy so I feel a litle stuck.

[jan251]

I've never heard of a 3-day course of azithromycin (aka zithromax or z-pack). As far as I know, the standard course is 5 days. Ordinarily, I would worry that 3 days is too short and could promote resistance, but if you're switching back to erythromycin at some point not long after surgery, maybe that doesn't matter.

 

My two cents on the heart angle: while I'm vaguely aware that there are risks, I have a child with multiple serious heart conditions (including but not limited to an abnormal ekg) and azithromycin was not a problem, nor was Biaxin, which is in the same drug family. I haven't read the research in a while, however. Several members of my family have taken azithromycin over the years, including my son with the heart condition back when he was a baby, long before we knew about the heart condition (and without checking bloodwork). It is very commonly prescribed in the US for certain sinus infections and certain types of pneumonia/lung infections. In other words, for my kids, I wouldn't blink at the prescription for azithromycin, though certainly it's always important to weigh risks.

 

Good luck and let us know if you see improvement after the tonsillectomy.

 

Adding, about your dd's chest pains: my ds had an issue with chest pains when his OCD began. His cardiologist checked him very thoroughly, including lengthy home monitoring, and found nothing. At the time, we thought it was a sort of "panic attack" though now we believe the chest pain was due to babesia (or some other germ that acts similarly). During the course of the past year of various treatments, the chest pain has become rare, though it came back briefly when we started treating for babesia.

 

Note that strep is the (a?) cause of rheumatic fever, which impacts the heart. This would more commonly impact the valves with an additional possibility of pericarditis.

Edited July 16, 2015 by jan251

[kim]

StellasMum,

 

If you/your Dr. decide to do azithromycin, I just wanted to point out that it does have a longer 1/2 life than a lot of antibiotics. The shortened course may not be as concerning if you research that a little.

 

This talks about the problems with resistance but it has other useful informtion too.

http://drugtopics.modernmedicine.com/drug-topics/content/tags/antimicrobial-resistance/azithromycin-no-longer-good-choice-common-infectio?page=full

[reactive]

Hi there. Wanted to respond to your concern. First, as a parent you will need to make the decisions you feel most comfortable with, so I would never tell you what to do. However, this is what I would do if it were me. First, I would proceed with the tonsillectomy. I am 47 now and I wish I had mine out when I was little for lots of reasons. I should have had them out, really, but my doctor when I was little said it was falling out of favor. I had so many bouts of tonsillitis as a kid and in that day in age the doc looked in the throat and ordered me penicillin...they did not test me for strep until I was well into college. The older you are the harder it is. Now of course any surgery is not risk free- I would never say it isn't. But IMHO if you are or may be dealing with PANDAS it definitely could reduce strep infection. Any time after age 12 would be a much harder recovery. And as far as the zithromax, I don't think the dose is a problem. Take for 3 days and it will be in the system for 6 days. If you are treating an active strep infection you need to take the 5 day course...but this is for a different reason. Good luck!

 

[StellasMum]

Hi all.

To update, I went to see the paediatrician and after the great advice above, said I agreed to give Stella whichever antibiotic he advised. His behaviour was quite odd and he seemed to be worried he could be implicated if anything went amiss (!) with heart problems etc. He had a nurse in the room as a witness, then he gave me a book and told ME to read all the affects/side affects of the various antibiotics my daughter could take and made ME choose! After pointing out to him that Azithromicin was noted in his book a not being effective against strep, he wrote a presc for erythromicin (only 7 days) instead and sent me away.

I went to my GP and managed to get another prescr for 7 days, which I started my daughter on before the surgery, saving the other one for after. Because PANDAS hasn't been diagnosed and is rarely treated in the UK, I have had to wangle meds where I can, it's ridiculous.

 

After 7 days on Erythromycin, Stella had the tonsils out and the Dr at the hospital actually listened to my mention of PANDAS and gave her Erythromycin during the op and another 7 days meds for after! Great, I thought.

The only problem was Stella could barely eat and felt so sick for the 1st week after the op I could only get her to have 2 doses of meds for the first two days after surgery. She said any more would make her vomit. I quickly up'd it to 3 times a day on the third day and she has been having this since. She seemed to be tic free and healing well. I was worried she wasn't getting four doses of antibiotics, but didn't want her to be sick and cause bleeding.

Now it's 18 days post surgery and the tics are back with a vengeance. She has two vocal tics, a whimpery hum/squeak and a "sss". She is the worst she has been for a few years. As she is still on antibiotics so I am worried what will happen when the meds run out. I have no way of getting any more.

Today I'm increasing the Erythromicin to four doses a day, even though the meds will run out in the next five days, just to see if it helps. Mainly I feel I've made a terrible mistake and should have kept the tonsils. They were a way of getting meds when needed but they also caused her to miss a lot of school.

We have two weeks before Stella goes up to senior school. If she starts a new school in this state, it will be a nightmare for her. New kids who aren't used to her and the tics will make the start of her new school career unbearable.

I can only hope for a miracle. Any possible positive stories you may have or reassurance would go a long way right now! Could this be a 'normal' seasonal increase or have I 'broken' my daughter! I know that sounds melodramatic but it's how I feel today.

Thanks in advance and sorry for the long posts!

Edited August 18, 2015 by StellasMum

[sarojane]

Hi,

 

Just wanting to follow this, we are on the cusp of trying to decide whether to go through with a tonsillectomy or not. My daughter has not gone more than two weeks without a recurrent strep infection for the past 8 months. She could possibly have lyme, and now the Dr. is telling us there is a danger of brain infection with the lyme because of the tonsillectomy giving access to the blood brain barrier. How are we supposed to even decide!

 

I hope your daughter feels better soon!

[StellasMum]

Hi Sarojane,

It's so hard isn't it? I don't know where you are, UK or US, but having a good PANDAS Doc would be the decider for me.

I thought that having antibiotics would be enough to get my daughter though this but, looking at ther now, I was wrong. You need proper medical supervision and help. I personally feel the tonsils were a barrier and I should have ignored all 'normal' advice and kept them.