Update on our search

[Megs_Mom]

Hi all - haven't updated in a while, but Meg continues to do well. Mostly 98-99%, but over the last 3 months, we have noticed a pattern that seems to mirror her abx dosing (day 1-5, azith 250 = Meg at 100%; Days 7-30, azith 100 every other day = Meg good until around day 18-22, then mild OCD creeps back in, maybe 3-5% issue depending on month - mild, managable - but noticable). Then in early Feb, we had a few days that really scared us. She did fine with her ERP, but it was the underlying story of a few days. I broke & gave her advil (usually avoid, as she also has Peptic Ulcers, and we really want that inflamation gone) and the Advil helped a ton. She did have a very mild cold, so I thought maybe that was it. Then 7-10 days later, ear infection. As usual, an uptick in OCD means she is getting an ear infection. Drives me nuts. Added a second antibiotic, just ended it on Sat. Still having some ear pain, so at Immuno today, we asked her to check ears again - and discussed the pattern we have been seeing.

 

The ears were not screaming red, but still looked cloudy & like there is still fluid build-up. After some brainstorming, she feels that perhaps Meg has chronic ear fluid (she had tubes at 4 & we had 3 OCD free years, although I have never connected those dots before). She felt that perhaps we were chasing the wrong data, and maybe something is growing in her ear fluid - that when we do the full strength, we knock it back - and then it starts to grow again despite the proph dose and finally breaks through towards the end of the month. So before we change anything, we'll be rushing off to the ENT to evaluate her ears again, and see if tubes might help the situation. We know that we have been reducing inflamation in her, as her ANA has been declining. But we still feel that the abx is either anti-inflamatory, or is keeping something in check, rather than giving her a remission that would succeed without the abx. It is clearly not just preventative. We are happy to have the remission on any terms, but would be terrified to take her off the abx. We are one of those families that is not sick enough for IVIG, and yet worries that this might be what is needed, and how to make that call. And I can't risk taking her off to "see what would happen". It would be great to find some more inflamation to target.

 

We have felt very fortunate to have this period of calm, to heal our family, find peace in our home - and to stalk the heck out of whatever else is here. Since ear infections have always been our trigger, this latest theory seems very plausible to us. I'll let you know what comes of it, but thought I'd share from the start, in case anyone else has a similar story.

 

Anyone know if you can ask to have the fluid cultured to see what is in it? I had not thought of this during the appt today. Would I ask the ENT, or should I call her ped?

[thereishope]

If you have them drain her ear to get fluid, I'd be more comfortable with the ENT doing it. You just might find strep in there. So, is she doing better now since she is on more abx?

[simplygina]

That is really interesting! My son had so many ear infections by the time he was 18 months that we did tubes. The ENT said he had a solid layer of goo that just never went away so each time we'd stop one abx bacteria would start to grow again. They scraped it all out when they did the tubes. He did well while the tubes were in (they fell out when he was about 4 1/2), then we started seeing the strep. He had his tonsils out last winter and with those the ENT said they were huge from what we could see on the outside, but they were ginormous going back into his throat. He said they were totally full of crud. He also gets sinus infections. This current exacerbation he ended up with an ear infection and really cruddy sinuses while he was on augmentin. Then Omnicef kicked the ear infection but not the sinus junk. Biaxin seems to have kicked both. This morning I was looking at his face and he has what appear to be allergic shiners. We haven't seen the ENT but I'm wondering if we should go see what is going on in there again. I've been wondering if he has some sort of allergies that inflame things and then other stuff has a chance to start growing. So maybe an allergy doc instead. He has always seemed to have trouble keeping a clear upper respiratory tract. Maybe if we could figure out why he continues to be inflamed and gunky in his head, we could get a handle on the rest of it.

[sf_mom]

If you do find fluid in her ear.... have them test for strain. Its common for recurrent AOM to be the resilient M18 strain of S. Pyogenes.

 

http://cat.inist.fr/?aModele=afficheN&cpsidt=16960644

 

-Wendy

[Megs_Mom]

If you have them drain her ear to get fluid, I'd be more comfortable with the ENT doing it. You just might find strep in there. So, is she doing better now since she is on more abx?

 

Just diagnosed today - don't have extra abx yet (but will on Friday), so will let you know. We are going to try to squeeze in the ENT visit before changing, but are only willing to wait the 2 days - doc wants to wait to see which direction ears go in next 7 days, but I suspect OCD will not let us wait. Have call into the ENT for "emergency visit".

 

She had a good bit of anxiety tonight, but did very well keeping it under control with her tools. She is a very strong kid however, so I still worry. She was good during the double abx period (10 days of omnicef), and then it broke through again in the last 4 days. Only about 5%, but still very noticable to us.

 

I'd be so interested to know what is in that fluid....

 

simplygina - we see an immunologist who is also an allergist. no allergies for Meg. She also recommended a CT scan, which we did, sinuses were fine, slightly deviated on left side, but she does not get sinus - just ears, so we'll take a wait & see attitude on that one, since it was very slight. I like the immunologist as she seems so interested in finding the cause of the inflamation, and doesn't seem to care so much which part of the body it is in (gut, ears, sinus, etc).

[Megs_Mom]

If you do find fluid in her ear.... have them test for strain. Its common for recurrent AOM to be the resilient M18 strain of S. Pyogenes.

 

http://cat.inist.fr/?aModele=afficheN&cpsidt=16960644

 

-Wendy

 

Ok, great, thanks. Since no one has ever done this before - is it something you just ask for? Do they have to get the tubes to do this (in other words, is it surgery that you would not otherwise do)? I have wondered this for a long time, but have not been organized enough at the right time to get this done. So ask them to test the fluid - do I have to specify everything to test it for? I should have gone to medical school. I hate when my mother is right....

[MomWithOCDSon]

My DS13, too, had CHRONIC ear infections as a young child . . . basically from 18 months until 3 years, when we finally bit off on a tympanostomy (tubes) because we just couldn't keep up with them anymore. SF Mom posted that article on an earlier thread when the topic of ear infections first surfaced, and it was a huge wake-up call for me! Originally, I'd thought DS's issues started at around school age, but I'm coming around to realizing that he exhibited odd behaviors well before that, intermittently, and that the ear infections may have been the vehicle of the original culprit!

 

What I wouldn't give to be able to turn the calendar back so that I could parent him THEN with what I know NOW!

[sf_mom]

You've got to hate when mother is right and also has to play Dr!!! Ask the ENT... the attached article is very clear that they were able to test fluid. Also Diana P. neighbor's son who had recurrent AOM ear infections.... they biopsied some portion of the ear (they were operating on the inner ear) and they found M18 S. pyogenes. Same strain present in RF outbreaks in US.

 

If you do find fluid in her ear.... have them test for strain. Its common for recurrent AOM to be the resilient M18 strain of S. Pyogenes.

 

http://cat.inist.fr/?aModele=afficheN&cpsidt=16960644

 

-Wendy

 

Ok, great, thanks. Since no one has ever done this before - is it something you just ask for? Do they have to get the tubes to do this (in other words, is it surgery that you would not otherwise do)? I have wondered this for a long time, but have not been organized enough at the right time to get this done. So ask them to test the fluid - do I have to specify everything to test it for? I should have gone to medical school. I hate when my mother is right....

[smartyjones]

not sure so relevant to your situation but thought you might find it interesting. . . we have a friend that i believe has undiagnosed pandas. i've suggested it, they suggested to psych, tests run, "ruled it out". mom has taken that to be true.

anyway, he has had many ear issues his entire life, age 6 now. a few years ago, he was having persistent ear infection and was on a couple different abx, a couple different times. they then cultured his ears and found that it was a yeast infection that was causing the trouble. i had never heard of a yeast infection in the ears. he is someone who had trouble with yeast before, which i don't believe yeast is in your history?

so, i don't really think is your same situation but just something to know.

[thereishope]

I think you will have to make a special request for them to drain it and culture it. I do not know for sure, but I'm guessing they'll have to make a slit in the ear drum then drain it. When a child has leakage from their ear from an ear infection, it's because the ear drum perforated.

 

You can request ear drops too to make sure no other infection creep in if they do make a slit to have it drained.