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[Shoopy]

Hi,

Sophia saw the pedi urologist about two weeks ago. He didn''t do much of anything except review the tests from the hospital. She is on antibiotics until Feb 2011 (sulfamethoxazole). They told me everything you suggested which was to watch her closely and if she gets a fever, bring her in. But that was it. He personally will not see her for re-testing until Feb 2011 and the pedi mentioned checking on her every 3 months but they haven''t really said anything since then.

Was that your experience with Amelia? Was she on the medication for a year before being checked again? I''m going to see her pedi next week for vaccinations and will ask more questions. I''m not comfortable with her being on medication for a year. I know she needs it because she was off of it for about 10 days (time from when we finished to the appt with urologist for refills) and in that time she got a fever and I noticed that her urine was getting to where it was when we first found out about the infection.

Anyway, sorry about the book lol. Jus wondering what your experience was. Thanks!

 

[Mrs Mitchell]

Hey fiery!
Our experience was much the same. We had 3 monthly check ups to start, but one her ped was happy that we knew what to look out for and would respond quickly, he dropped them to six months. Now he checks her weight, height, temp and some developmental checks, looks her over and sends us home. Nothing more invasive or detailed.

The plan is to have her stay on the antibiotics until she can talk clearly enough to tell us if she has any pain or discomfort when she pees, or if she feels hot or unwell. It''s more of a precaution than anything else, because the consequences of the infection can be so severe. Until she can talk well enough to tell us in detail the minute she feels unwell, the antibiotic is important. Even then, we''re constantly alert for breakthrough infections. It is tough and I don''t like having to give her long term antibiotics, I know exactly what you mean and it feels like a long time to medicate a baby.

She won''t go through the full testing again until she''s about 3 to 3.5 years, because although things can get better as they grow, they won''t tend to see any real change until around that age (according to her ped). He didn''t feel that the trauma of the testing for a toddler was worth it until there was going to be a change one way or the other, so he won''t do it just to see how things are going in the meantime. I have a lot of faith in him, so I''m happy with his approach, although I obviously want to get her off the meds as soon as possible.

Hope that helps, thinking about you and your wee darling. She is just ridiculously cute, btw.

 

[Shoopy]

Thank you! I thought it was weird that they wouldn''t see her for a whole year but I find it comforting to know that''s standard.

The antibiotics aren''t too bad now that she''s used to the taste. Before it was a fight every night but now she just takes it which is great.

Hope A continues to do well! Thanks

 

[Mrs Mitchell]

It''s quite isolating sometimes, having a child with a longer term health issue. PS is an absolute godsend for stuff like this!
I felt like there was all this drama (for want of a better word) when we first had testing and diagnosis, then suddenly nothing. We went from days at hospital to no contact at all. It was unsettling, and I know how you feel. I think it''s quite normal though.

A''s doing fine, and it really helps that the odd little child adores the antibiotic. She''s taking an iron supplement short term too, so ''drug time'' is becoming a serious treat.

 

[Hudson_Hawk]

Hey Fiery, just a future fyi. If Sophia (god, she''s so frickin cute!) has to take sulfa again be sure to watch her very very closely. Sulfa allergies are very severe and very very common. I had to take it as a toddler for something similar and later developed a very server allergy to it (I''m also allergic to Amox due to taking it so much for strep as a kid). I''m not saying it''s a sure thing or will happen with the next course, but as she ages it''s a possibility so just be aware. The biggest sign something is wrong is hives but it might not manifest that way, some people go right to anaphalaxis (sp) with the first reaction.

 

[Mrs Mitchell]

HH, Sophia and Amelia are on this medication long term as a prophylactic. It''s a daily dose and the first doses are monitored in hospital for allergic reaction. Is this something that develops over time? We haven''t had any problems so far and Amelia has been on meds since she was a few months old. It must be terrifying to have a baby with a severe reaction like you describe.

Are you able to take any antibiotic?

 

[Shoopy]

HH-that sounds awful! Were you taking due to kidney reflux as well? We haven't seen any reactions to the medication as of yet but thank you for the heads up. We'll definitely look out for it!

MrsM-I accidentally tasted the medicine one evening when she knocked it out of my hand and some of it landed in my mouth

(that was my lesson to skip the spoon and use the syringe lol). Anyway, it's very sweet. Has a grape flavor to it.

 

[Mrs Mitchell]

LOL! I have never tasted it, it''s gone way too fast for me to get a look in!She really does love the stuff. Don''t know if that''s a positive thing or not, really!

Oh, and I checked the label- Amelia is on trimethoprim. Not sure if that''s the same med, because they are called different things in the UK (and the rest of the label is smudged, so I can''t read any more than that). I presume the same possibility of allergic reaction will apply and keep an eye on that. Scary!

 

[Hudson_Hawk]

I have always had horrible problems with my ear nose and throat areas, I got recurrent sinus infections, strep and ear infections as a child. I was taking Bactrim for a bad sinus infection and had a horrible reaction to it around age 7. Now I can't take any sulfa based meds and I can't handle them either (I was a pharm tech for years) without breaking into hives. Same with Amoxicilin and while we're not 100% sure, we think I'm also allergic to penicillin (I get very very itchy but no hives). I can take other antibiotics like the z-pak, erythromycin, and Macrobid (nitrofurantion).

There's the school of thought that long term use or early exposure can lead to the development of allergies, which is why we can't do things like give our kids peanuts at a young age, etc. We surmise the early and prolonged exposure to amox and sulfa is what led to my sensitivity.

 

[Hudson_Hawk]

Also, if you find your little ones dislike the flavor of liquid meds, you can ask your pharmacy to custom flavor them for you. At Target it''s $2.95 extra I think. There''s a whole book of different flavors and a chart that will tell the pharmacist what flavors work best with what meds.

 

[Hudson_Hawk]

Trimethoprim and Sulfamethoxazole are different, unrelated compounds.

 

[Mrs Mitchell]

I had no idea there were so many different types of antibiotic. Interesting.

Sorry to grill you on this

but can you tell me if you know of reactions developing to trimethoprim at all? I''m guessing it''s possible, but less common than to some of the other antibiotics? Also, what exactly should I look out for? I''m already vigilant for any raised temp, general unwellness (if you know what I mean) or strange smells from diapers (well, stranger than usual...). You mentioned hives, is that a rash? (Not a term I''ve heard in the UK.) Anything else?

Early and prolonged exposure pretty much sums it up - I hate that she has to take drugs every day, but I was reassuring myself that it was better than the alternative. I had not thought about allergies developing.

 

[Hudson_Hawk]

MM I''m not a doctor, pharmacist or toxicologist so honestly I can''t tell you anything about possible reactions with what your daughter is on. Hives is an itchy rash that looks like you''ve been playing in the nettles patch. It can be localized on one part of the body like the face or neck or it could cover you from head to toe. I suggest talking to your pediatrician if you''re concerned. I''m sorry, I didn''t mean to be an alarmist

 

[Mrs Mitchell]

Not alarmist at all - I really needed to know that this was a possibility. We have a Ped appointment in a couple of weeks, so I''ll be able to bring it up then - thank you for the heads up, I really do appreciate it.

Jen