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How long does it take for abx to start working?


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My precious sweet little boy is almost 3 1/2 and just officially diagnosed less than 3 weeks ago with PANDAS or PANS. Waiting on bloodwork results. His first episode when he was 2 1/2 resolved immediately with Probiotics 5x a day for many days. I thought it might be a parasite because he was scratching his face so much (now we know it was OCD "picking"). He had a couple more episodes after coming down with colds which Probiotics barely helped, but his pediatrician wouldn't prescribe abx until his 4th episode - a major flu virus. Augmentin cured him 90% within a week and he was good up until his most recent cold 2.5 weeks ago (right after we saw the Neurologist who diagnosed him).

 

He was on Azithromycin for 13 days - he was 95% back to himself by days 8-11, and then back to bad again. On day 14 we started Keflex (Cephalexin) and he is supposed to stay on it for 90 days! Today is his 4th day on Keflex and he is definitely a little better moodwise, but the Neurologist said he should be 100% back to normal including no tics within 3 weeks and that is 3 days away! He is absolutely not back to himself, maybe 60%. How long should it take for the abx to work?

 

Every time he is back to normal I doubt myself that it is PANDAS (I've suspected it for 5 months now - took us 3 months to get in to the Neurologist), thinking that if I had just handled things differently everything would have been okay, but then when he has a relapse I am absolutely positive it is PANDAS - he is a completely different child and even walks, looks, and talks different!

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Welcome to the forum. I am sorry to hear about your son. You have several really good things going in your favor though and I'm not sure you really realize how fortunate you are. Firstly you have caught this quickly and you have a physician who has given you an official diagnosis. Not only that but you have a physician who was willing to give you a 90 day trial of antibiotics. That means he actually has some knowledge about PANDAS / PANS. You are still waiting on lab work so you don't know yet exactly what your infectious trigger is. Could be strep, mycoplasma, lyme, or a combination. The fact that antibiotics have helped in the past is good. The fact that this particular antibiotic hasn't brought you to 100% does not mean this isn't PANDAS / PANS. It simply means that you need a different antibiotic. Usually if there hasn't been a significant improvement after about a month they will switch the antibiotic. Not to worry though there is still time to try something different. 90 days isn't that long for PANS kids to be on antibiotics. Just make sure you are also using a good probiotic. My daughter has been on antibiotics for 2 years. My oldest son took antibiotics for 7 years. He is off now and doing well.

 

Now, as for you doubting the diagnosis......I suppose when things are looking good it is easy to doubt the diagnosis. I just want to discourage allowing yourself the luxury of denial. No one wants to think this is happening to their family. The prospect of living with this not pleasant. But you are here, so might as well pull yourself up by the boot straps and face it head on. Denial is only going to hurt your son. You need to educate yourself on this illness and be prepared to be your childs advocate in every way. Not every doctor, care giver, teacher, etc.. is going to be as understanding and educated as this neurologist you were lucky enough to see. It is very likely that your son may need to have cognitive behavior therapy to help with OCD and anxiety issues as he gets older. You will be the one to make that happen. Your son is most likely very intelligent (most of these children are). With his Mother as his advocate he has a bright future and he can accomplish anything. Don't let this scare you, he is simply taking a different road to the same destination. He (and you), will become stronger, more empathetic individuals because of this diversion. Everything in your post indicates that he has PANDAS / PANS, plus he has a diagnosis from a neurologist. Take a couple of days to absorb that and then gather up your determination to make your sons life the best it can be. Stick around this forum. Everyone here is awesome. You will get more support and information here than you could imagine. I hope I haven't offended you in any way. Just giving my perspective after being in your shoes a few times my self. Best of luck to your son and your family.

 

Dedee

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Thank you for your reply Dedee - I appreciate it and it means so much to me! Yes I guess you are right - I am forunate to have caught it quickly...I usually read about people with kids diagnosed later but saw signs in retrospect of things happening years before.

 

Thanks to the internet and also probably because my 3 year old's symptoms are so extreme - not just some sudden eye blinking that came and went. Picking (20+ scratches all over his face) was the first OCD along with the complete change in behavior. Then 6 months ago basically overnight his personality completely changed again and he started gagging himself, grunting loudly, sighing constantly, and gradually added or exchanged many more tics - jumping, sitting hard in his chair, jerking shoulders, flailing his arm, twisting his head to the side, laying his head on his shoulder, stomping in a certain order, blinking, flapping his hands against his head or ears, pacing, rolling sounds with his tongue, rubbing his cheeks, bad language (including the f word) hundreds of times a day, and more.

 

Those are just the tics - then there are the obsessions, such as having to have his toys displayed exactly like the box shows (if one falls - rage), constantly repeating questions, not stepping on cracks, irrational worries, not being able to "mix" toys he is playing with with toys from a different set, etc. And the huge meltdowns were almost unbearable - over having to take a bath, get dressed, go potty, over not being able to get his clothes on/off by himself, over one of his toys falling over. There were weeks we couldn't even smile at him without him trying to hurt us - punch, kick, pinch, scratch, headbutt, swear.

 

During this last episode my son seemed to become someone else, even to himself. He insisted every day that he was not **** (his name) but he was "the naughty guy" and did all bad things. Everything he talked about or focused on was bad and negative and even scary. He constantly said "Stupid **** (his name)" like he was calling himself stupid, yet didn't think he was himself. He went from telling his 2 month old baby brother he loved him to calling him stupid, constantly yelling in his face, and not wanting him anywhere near him. One of his quotes about his brother was "Mommy you get two pokey toys & I'll get 2 pokey toys & I'll poke baby brother & he'll cry for a long time for fun!"

 

Before today I was 95% convinced it was PANDAS/PANS, but tonight I am 150% convinced. I am so relieved to say that today was our turning point! Apparently Azythromicin did not work for my son, but Keflex is working. We are on day 5, and just like with the Augmentin, almost as fast as he went away, my boy is coming back. Around lunchtime everything started to go back to normal and by tonight he was super happy, jumping, hopping, hyper, talkative, treating us NICE, back to normal with how he treats his baby brother - brought the baby's swing over and said "I brought baby brother's swing over in case he wants to rock in it". Let baby brother “walk” up him all the way to his head and laughed about it - he would call him stupid before and not let him near him. Talking excitedly about how baby brother is starting to hold toys and bring them to his mouth at dinnertime, patted him on the belly and said “I like baby brother”. I felt no fear of my son trying to hurt his brother like I had for nearly 3 weeks since this last episode began.

 

I am so glad I found this forum. No one except me and the Neurologist believes this is PANDAS/PANS - my husband's family thinks it is just "terrible two's/three's" but they only see my son a few hours a week. Up until our visit with the Neurologist my husband thought I was crazy as well and didn't even believe in PANDAS (he'd never researched it at all). However since this last episode he is finally starting to think it could be true. As a mom I know my boy better than anyone - I am with him 24/7 and know his personality! Before this all started he was literally the sweetest toddler boy I had ever met. Very smart and verbal too with definite anxieties, but nothing extreme.

 

This disorder is absolutely heartbreaking. It feels like out of the blue the child you know and raised was replaced by someone completely different! Every morning I wake up with my stomach in a knot, waiting to see if the look in my boy's eyes is him, or if he is fading again. I am praying this 90 days of antibiotics will allow his immune system to heal and he will be back to my boy for good.

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  • 2 weeks later...

My son was very young when dx as well, only 2 (onset with a strep infection at 20 months - took us 6 months to get help, even though the personality change was severe and overnight, we also thought it was just the terrible twos).

 

I wanted to let you know that we also had our doubts. As he would get better between infections (which he had A LOT of them), we would question if he really had anything wrong with him or if it was just us not following through enough, or spoiling him, etc... But then he would get another strep infection and refuse to go through doors if someone touched the doorknob - and we'd be believers again. We were up and down a lot like that in our first year or so.

 

My son is 5 now, and my daughter who will be 7 next week also was dx with PANDAS just last year. It affects each of my children differently. What helped us immensely in the beginning was keeping a daily log/journal of symptoms and progress. It helped us track what was/wasn't working, and identify patterns. For example, we know now that if my son wets the bed, he has strep. 100% of the time when he as wet the bed in the last 3 years, he was + for strep. We see that happen, we don't wait around for other symptoms to present, we head straight to the doctor.

 

It also helped reassure us that we weren't crazy and that there was a problem. It was there in black and white. We used a numerical "score" system and tracked it using excel. We used graphs to visually see progress and patterns, and it was great. Our docs loved it too because it helped them track treatment options and progress. If you're interested, I can email you a copy of the spreadsheet we used - just PM me your email address and I'll send it over.

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