Child coming off trimethoprim after everydau for 3 years
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hi just looking to see if anyone has any experience with this. My daughter has a swollen kidney from birth shes been on a low dose gradually increasing as she grows everyday for 3 years, the kidney has showed no improvement so the consultants have said the only way to tell if it is going to need surgery is to take her off the meds and see what happens ie: if shes gets kidney infections , urine Infections etc. Here is my problem since coming off the meds a week ago she has had constant stomach pains, diarrhoea , sore neck ,arms , legs a red rash itching skin has appeared , shes having dreams her teeth are falling out nightmares shes only 3 the docters have consistently told me in no way can she have side effects coming off this drug because 3ml per day is far to low a dose even for 3 years to have side effects , i am convinced its the cause has anyone experienced anything similar coming off the drug after long term? or even have any suggestions that i could be right?
thankyou and sorry its such a long post
0 likes, 3 replies
MrsO-UK_Surrey maryanne44977
Posted
Firstly, I'm no medic but experience tells me that when we come off any medication that we have taken very long term, it isn't surprising if our bodies rebel initially. I assume that your daughter doesn't have a temperature and that a gastric infection of some sort has been ruled out. Also, has she eaten anything that could be causing her symptoms - something different that she might be allergic to? However, with your daughter being so very young, this is obviously a question for those treating her and if you aren't happy with the first answer you have been given, then I would ask for a second opinion, via your GP if necessary. I do know from personal experience that Trimethoprim in the dose that is given to adults has a side effect of reducing kidney function, albeit temporarily. It usually bounces back after a week or two. U & L blood tests would confirm this in the first week or so. It's a very hard call to take her off a drug that has been keeping her well, but probably necessary for the medics to go back to square one to assess her present situation. Lots of good luck wishes to the poor little soul and very worrying for you - I empathise as I, too, suffered my whole childhood with UTIs, only solved by removing offending kidney.
maryanne44977 MrsO-UK_Surrey
Posted
thankyou actually today she got much worse nursery called and said she was very vacant and disoriented no temp atall or fever but lots of abdominal pain docters urine test confirmed a bladder or kidney infection and to contact the consultant to see where to go from here now , they said when she was taken off 2 weeks ago any effect on her health due to the kidney she will be put forward fir surgery, shes on antibiotics now theyv still said that she cannot have had any effects from coming off the medicine and that its been likely to have been an Infection coming on, this is her first unrinary related infection since birth so its clear now the medicine was infact blocking infections. I sobbed today holding her shes been practising for weeks for her carol concert and today she couldn't get through it consultant is going to call tomorrow hopefully.
MrsO-UK_Surrey maryanne44977
Posted
Oh dear, my heart goes out to both you and her. As you say, it does sort of prove that the long-term Trimethoprim was doing its job. Hopefully, she will soon start to feel better once the antibiotics kick in, and further investigation will reveal the root of the problem for which a permanent solution will be found. Don't ever worry if the problem is found to stem from just one kidney and it has to be removed. It will be the making of her and, as I alluded to in my earlier reply, I am proof of that after a childhood of sickness very many years ago when the equipment wasn't available to diagnose such conditions. Now both the scanning equipment and the surgery is far far more advanced. She will be fine. Perhaps meanwhile when she feels a little better you can organise your own little carol concert at home with a few of her little friends. Although only virtual, special little hugs to you both.