Need advice on antibiotics please

[rowansmom]

Hi... My name is Tracy, obviously I'm new here, and I am very happy to finally find a place to turn to. My daughter Rowan is 10 and has had PANDAS for 3 years. It is fairly mild, and we only see an increase in symptoms when she has strep (always with a positive swab). After starting on antibiotics they go away fairly quickly. This time however she obviously had a viral chest cold, and we swabbed anyways- as expected it came back negative. But there she was with the usual problems- obsessive thoughts, "panic" attacks. I'm confused, and worried. Is it possible things are changing, perhaps there is some damage being done with all the strep infections she's had? I had started her on antibiotics but stopped them after the swab came back negative, should she stay on them? I can't ask these questions of my family doc- he has never even heard of this, and seems pretty doubtful of the whole thing- although to his credit he does what I ask

 

An aside note- she also has Rolandic epilepsy (a childhood, mostly nocturnal type of epilepsy). It has been at times confusing to distinguish between the two. Has any other PANDAS parents ever seen their children have episodes of having visual or auditory hallucinations when they are sick?

 

Thank you so much for your time- I am so thrilled there are others out there to talk to- this has been a lonely and frustrating road for me and my girl.

[Calicat]

Hi,

Sorry I can't help you with the PANDAS information, but I did want to say hello and welcome. I'm in Ontario now, but I grew up pretty close to where you are--in Spruce Grove (you are in Alberta, right?) Anyway, I'm sure someone will be along shortly to give you some ideas. Take care,

Calicat

[rowansmom]

thanks for the welcome Calicat

[CSP]

Welcome Tracy,

 

My son is not PANDAS, but I feel TS are so much the same you will really feel at home here. The only thing I can add is my oldest daughter (no TS) had a lot of panic type stuff at around the same age you dd is now. She outgrew it at about 13. She is 16 now and very happy and can deal with a lot. I think a lot of kids feel that way during those years of pre-teen.

 

Everyone is so nice here and really ready to help.

 

God Bless,

C.P.

[P_Mom]

Hi... I just wanted to let you know that, yes, my younger son has experienced auditory and visual hallucinations when he was symptomatic from this last PANDAS episode this past summer, also, these mainly, although not entirely, occurred at night.

[rowansmom]

Hi... I just wanted to let you know that, yes, my younger son has experienced auditory and visual hallucinations when he was symptomatic from this last PANDAS episode this past summer, also, these mainly, although not entirely, occurred at night.

 

 

that is so interesting- thank you so much for replying... what kind of hallucinations, if I may ask? We've dealt with voices telling her there's something coming to hurt her, a bomb under her bed, girls in long dresses, flying "e's" in the air, on and on... but only when she's sick. I swear to god before the Dx of epilepsy and PANDAS i thought she was shchizophrenic. Last night (about 5am) she woke up scared, was saying that everything was moving fast, we had to whisper and she wouldnt let me touch her. This is the most common thing she does, it happens during the day too but never when shes active & running around. As well with this she often says her fingers have shrunk, or are missing entirely (that always disturbs me- the look on her face as shes checking her fingers). I always assumed this was due in part to her epilepsy. I really just don't know what to think.

[rowansmom]

Welcome Tracy,

 

My son is not PANDAS, but I feel TS are so much the same you will really feel at home here. The only thing I can add is my oldest daughter (no TS) had a lot of panic type stuff at around the same age you dd is now. She outgrew it at about 13. She is 16 now and very happy and can deal with a lot. I think a lot of kids feel that way during those years of pre-teen.

 

Everyone is so nice here and really ready to help.

 

God Bless,

C.P.

 

Thank you c.p.

 

I do really hope she will outgrow it. What did you do to help her?

[rowansmom]

Did anyone have an opinion on whether she should stay on the antibiotics even though the swab was negative? As a nurse my best practice says no, but I would like to know other's opinion on this.

[colleenrn]

Tracy,

My daughter was diagnosed with PANDAS 6 1/2 years ago. I always give her antibiotics when she has a flareup, even if the swab comes back negative and she responds to the antibiotics. Her swabs used to come back positive each time she had a flareup in the first few years, but a lot of times they are neg. now, but I know she has strep b/c of her huge change in behaviors ( anxiety, tics). Another thing I have found and I don't know if others have had this experience, is that her quick strep swabs are always negative and she is physically asymptomatic (no fever, red throat, sore throat). I would recommend doing a course of antibiotics and making sure they are effective. We had to change antibiotics several times over the years as the ones that had previously worked no longer did.

Colleen

[ad_ccl]

I had totally forgotten but my son had usual visual things going on too - early on in the PANDAS journey. We took him to the eye doctor who found nothing wrong - my son would see white spots floating around - and at night he would talk about seeing white spots as well. I can't remember all of the details now - I may have written about them on some early posts here.

[P_Mom]

Sure you can ask...that is what we are all here for. Anyway, I have seen things similar to you... we have dealt with him hearing voices, not telling him to do anything, he'll just say, "mom, did you hear that, it sounded like your voice saying "what." Or, at night he has seen a girl with yellow hair in his room, and he hears a siren when she is coming...Big ants, bugs/ants on the wall, toon characters in his room, little leprechanish guys in his room, visions of his dad ripping off one of his stuffed animals heads, etc. I may be missing some, but, you get the drift. One day he asked us if we were wearing masks. This was when he was in major PANDAS episode after strep, all of these symptoms have since gone away, thankfully, as these things were the most upsetting and frightening to me, and possibly him too, although he said he always knew that what he was seeing wasn't really there, he said he knew it was just in his head. And this is what differentiates these visions from schizophrenia, he knows is is not real, where as a schizophrenic will actually think and believe that a toaster, for example, is really talking to them.

 

Kelly

[P_Mom]

I would probably stay on the antibiotic, but, go with what you feel in your gut.

 

Kelly

[P_Mom]

Sorry, I forgot...after PANDAS is in motion.. symptom flairs tend to occur with ANY immune challenge, not just strep, that is why you are seeing an increase with this viral, it is part of the disorder. I deal with the same thing, though viral flairs are MUCH milder than strep flairs for us.

[rowansmom]

Thank you everyone, so much, for replying- I'm getting the beginning of a feeling of having control over this... I wish I had found this forum a couple of years ago!

[rowansmom]

Sure you can ask...that is what we are all here for. Anyway, I have seen things similar to you... we have dealt with him hearing voices, not telling him to do anything, he'll just say, "mom, did you hear that, it sounded like your voice saying "what." Or, at night he has seen a girl with yellow hair in his room, and he hears a siren when she is coming...Big ants, bugs/ants on the wall, toon characters in his room, little leprechanish guys in his room, visions of his dad ripping off one of his stuffed animals heads, etc. I may be missing some, but, you get the drift. One day he asked us if we were wearing masks. This was when he was in major PANDAS episode after strep, all of these symptoms have since gone away, thankfully, as these things were the most upsetting and frightening to me, and possibly him too, although he said he always knew that what he was seeing wasn't really there, he said he knew it was just in his head. And this is what differentiates these visions from schizophrenia, he knows is is not real, where as a schizophrenic will actually think and believe that a toaster, for example, is really talking to them.

 

Kelly

 

 

oh my- it is scary when its happening, isn't it... yes she does know its not real, and it does pass when she feels better. As i said, Rowan has been Dx with rolandic epilepsy as well- it is a nightime epilepsy with different symptoms than the norm. Many kids have it, but few ever know they have it because they don't often show symptoms while they're awake, and only have 1 or 2 seizures in all, if any. that and its "grown out of". It started the same time the PANDAS did, or at least thats when we noticed the nightime problems starting... i've always felt the hallucinations may have something to do with that, or just the two disorders combined set her brain off when shes sick. Have you ever seen your boy "sleepwalk"?