jewels Posted February 12, 2010 Report Share Posted February 12, 2010 My dd finished her high dose of augmentin and dr placed her back on keflex (low daily dose). The day after she finished the aug. she developed a chesty cough and temp. started to rise again. We started to see a mild motor tic and a vocal tic (mmm). anxiety, bladder stress, not sleeping, memory loss and abstract sentences - the usual symptoms that she gets, but not a blowout that we have seen in the past. Dr has placed her back on high dose aug. and we are on our 3rd day. I have started to use ibuprofen, as suggested and it is helping, however her temp is still rising. We normally see a drop on abx. Only sleeping issues now with cough. Back to hospital on Monday, but I am worried about how many days you can take it safely, and the unusual peak with her temperature. (dd normally has a constant low grade fever for about six weeks with onset of infection) Dd has history of low white blood count also. Can I use Ibuprofen daily for over a week? Thanks, Jules Link to comment Share on other sites More sharing options...
thereishope Posted February 12, 2010 Report Share Posted February 12, 2010 I don't know any connection to what Ibuprofen might have with white blood count, if any. So, I can't give any advice on that.How long will she been on if you keep giving her Ibuprofen until Monday? How often are you giving it? What is with these kids and that cough! I feel like I'm becoming a broken record, but with a fever and cough, I'd go to the dr. Have him/her listen to her chest and if you have to, outright ask about the possibility of Mycroplasma Pneumonia. What doesn't make sense about the possibility of Mycro P is that the Augmentin she was on wouldn't have kept Mycro P at bay when she was on it and you say the cough came on after stopping the Augmentin like it was a cause and effect. Hm... Still, it doesn't hurt to rule it out, even through only a clinical observation. My ped said he's seeing a lot of it right now. How high is her fever? Link to comment Share on other sites More sharing options...
jewels Posted February 12, 2010 Author Report Share Posted February 12, 2010 She has been on it for 6 days so far, and it's keeping her fever down to 37.8 while on it. I'm giving her the dose per age as stated on the bottle. It's working so much better than other fever med that dr gave us. When she started to go down we noticed that she she became calmer and more lucid, when the ibuprofen kicked in. The dr listened to her chest, said she had picked up a viral infection, and said to come back for more abx if cough/fever remains. Everytime she has a throat infection dd will start with a cough within a week. I've stayed really positive with the PANDAS symptoms, knowing that we are now on the path at last to help treat this. But i am starting to crack with the immune issues. It's just one infection after another, and a kidney infection that's lingered for months. I've kept smiling all day, but as soon as I put the children to bed I just wanted to crumble. She is really suffering with the fevers, shattered from lack of sleep with the cough, and her little face today was showing that she's had enough. Back at the hospital on Monday, and I hope they can explain more to us about what is going on. Sould I stay on Ibuf. as its helping to keep her more comfortable. Thanks for listening to my moans. Jules Link to comment Share on other sites More sharing options...
thereishope Posted February 12, 2010 Report Share Posted February 12, 2010 So, on Monday it would be 9 days on Ibuprofen. If it was me, I'd keep giving it. As always, try to space it out as much as you can. It's an awful feeling to know that your child is sick but you don't know what it is. I think all of have heard one too many times "Well, it's probably just a virus. Let it run its course". When you go on Monday, just innocently ask them if it could be Walking Pneumonia (aka Mycroplasma P). Is she home schooled or go to school? Ask her if others have a cough. If you inquire about a throat infection and they swab her, remind them she is on antibiotics and the chance of a false negative is there. Do they understand that she has PANDAS? If you explain how her behaviors have changed since changing abx, do you think they will listen? There is always a chance it only a viurs, but a virus shouldn't take more than a week or two to run its course. How long was she on the high dose Augmentin for? Link to comment Share on other sites More sharing options...
faith Posted February 12, 2010 Report Share Posted February 12, 2010 I'm sure its okay to take for a week....but I just wanted to relay something our ENT mentioned about advil, motrin, ... we were instructed not to use advil or motrin in the two weeks before my son's tonsilectomy (which we had today), as it thins the blood. so I guess this was for surgery purposes, I guess having something to do with bleeding. And this week, I can give him tylenol, he said, but not advil, for the same reason. I'm just wondering if this is something to take into consideration for the regular use of advil (ibuprofen)??? Faith Link to comment Share on other sites More sharing options...
jewels Posted February 13, 2010 Author Report Share Posted February 13, 2010 The peds are seeing clear results on abx, as she has stayed in hospital for a few days and they observed the neuro signs as the abx started to work. I would advise every parent if possible to go down this route for a PANDAS dx. The last throat swab came back neg. But both the ears were infected, smelly and seeping. The swab was taken on 2nd day of abx and they did a 24 culture. We need to go to hospital with an action plan of when to take swabs, what to test for etc. I've been searching through this forum taking down as much info. but we are worried that we may be asking for too much. They always do rountine bloods, urine tests and scans, but are a bit behind on testing for the connecting triggers. PANDAS is a bit like saying a naughty word here, but we have a ped who is more up to date. they still however only give a 5 day course of abx, and we are told to return for more 5 day courses. Drs here prefer to give paracetamol to children, (and not advised to take ibup before operations.) I am trying to space out the dose as long as possible, and not going over the 24 period. Thanks for the info and help Link to comment Share on other sites More sharing options...
thereishope Posted February 13, 2010 Report Share Posted February 13, 2010 Those kind of ear infections are the worst. Someone did post here once that ear infections can be strep. Your doctor may look at you like you're crazy, but if she gets a perforated ear drum again and it leaks, they can swab the leaking fluid to see if it's strep. Link to comment Share on other sites More sharing options...
JMTho Posted February 13, 2010 Report Share Posted February 13, 2010 Many neurological studies are showing that COX-2 inhibitors (ibuprofen) close the blood-brain barrier (in PANDAS it is suspected that the blood-brain barrier is open, allowing malfunctioning antibodies to cross over and attack the basal ganglia). We have seen dramatic improvement since starting daily ibuprofen in December. It does affect platelets and can increase bleeding and bruising; cannot be taken in the weeks before surgery. Our ds had chronic abdominal pain over the past 2 1/2 years (full GI workup, scope/biopsies- found nothing; doc suspected his repetitive strep infections were causing it), so we worried about giving ibuprofen. He had a Z-pack (azithromycin) in November (5 day course) then, started ibuprofen in December. Now, all stomach aches/pains are GONE (didn't worsen on ibuprofen as we worried it might) and everything has gotten better; not perfect, but dramatically better. We give 200 mg twice a day (ds around 80 lbs.) -ONLY on a FULL stomach -PLENTY of fluid intake!!! (is cleared through kidneys) If symptoms spike (when he had sniffles for a few days), we add a middday dose after school. jt Studies, for those who LOVE reading this stuff... Blood Brain Barrier and Ibuprofen (note: NOT PANDAS-specific studies): http://www.nature.com/jcbfm/journal/v28/n2...l/9600525a.html http://www.nature.com/npp/journal/v30/n6/full/1300668a.html http://thejns.org/doi/abs/10.3171/jns.1986.65.2.0233 http://arxiv.org/pdf/0708.0181 http://www3.interscience.wiley.com/journal...=1&SRETRY=0 http://www.jni-journal.com/article/S0165-5...0114-5/abstract http://www.flocel.com/posters/Flocel%20Imm...Human%20BBB.pdf Link to comment Share on other sites More sharing options...
KeithandElizabeth Posted February 13, 2010 Report Share Posted February 13, 2010 Thank you so much for sharing all of these studies!!!! Elizabeth Link to comment Share on other sites More sharing options...
JMTho Posted February 13, 2010 Report Share Posted February 13, 2010 I should also add that you should consult with your own MD if you decide to try ibuprofen long-term. It also inhibits COX-1, which can be hard on the stomach over time. Link to comment Share on other sites More sharing options...
jewels Posted February 13, 2010 Author Report Share Posted February 13, 2010 Thankyou of all the advice, I'm having a better day with dd (and I'm not as tearful). I spoke with my friend today who is a nurse, and she said also the concerns about tummy issues. She slept better last night, and has a smile on that beautiful little face again. Eased off on it today and keeping a careful eye on her. It's nice to come here for all the support - very grateful Jules Link to comment Share on other sites More sharing options...
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