Missmom

My son got pneumonia in kindergarten that was before we knew of pandas, but I don't remember anything severe coming of it. I do remember having to try several different abx to cure it and the one that worked best for us was biaxin. Our neighbor is a nurse practitioner and she said her standard protocol is a shot of roceffin followed by ten days of biaxin. Both my kids have flu right now, so I feel like I am with ya.

Thank you all for the advice. I did give him one dose and so far so good. This seems to be a pretty bad flu this year so I thought I better try. He and my daughter both immediately spiked a fever almost 103 degrees within hours of each other. Very tired and congested and coughing. This is not fun......the fever has gone down with ibeuprofin but not fully and I need to keep giving it or else it spikes again. Just warning everyone to be careful this year as the doctor said my son seemed better than the other positive flu patients he had seen, and my son is not good right now. Take care.

What tests did you have run? Three weeks seems like a long time to wait for results. Many people here use culturelle or florestor, others use custom probiotics. We use probiotics with abx to try prevent stomach upset.

Our neuro said it is ok for him to take. So maybe I should try it.

Ok.... What a week! My pandas son 12yo. and my daughter 9yo. both started with high fever on Halloween night and next morning.. I figured it was probably viral because son is on augmentin already and both children started with high fever within a few hours of each other. Was hoping it was a 24 hour thing but no such luck. I took my son to the urgent care this morning because my daughter would not go and sure enough tested positive for flu. Anyway the doctor went ahead and prescribed Tamiflu but I am very reluctant to give him this. The doctor even mentioned the very rare possibility of neurological side effects from Tamiflu. I think that is enough to make me not want to give him this. I mean, I even explained pandas to him but I don't think he got it. I have a call in to our neuro. to see what she says, but my gut tells me to just keep giving ibeuprofin and Robitussin. Any thoughts??

Strep can also reside in the nasal canal, and because you mentioned sinus issues I just wanted to point that out. If necessary they can swab that. I am sure dr. K will run all the necessary labs and you will start getting some answers.

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If it were me, I would keep the appt. with dr. K. Just to establish your son as a patient and to ask for a full panel of labwork. This will allow you to see if anything is truly out of whack. Also, if your son were to ever have another major episode you will have a baseline and it will give you something to go on. I would also start with trying a month or two of abx, just to see if you notice any improvement. Your son is just 8 years old and for now his tics may seem manageable, but from my experience with my son now being 12, it only gets harder. My son is now in middle school, and the boys can just be outright mean. I have been trying to control his tics, but when he flairs up they start calling names and talking about him. It is heartbreaking. My son is taking augmentin 2x a day, probiotics, and visteril at night to help him sleep. He is not 100% but for now the only symptom left is a head nod tic that I am hoping will subside soon. Last month he was at 100% for about two weeks then I tried to reduce the dose of augmentin and he started regressing. I guess it was too soon. It sounds like you would rather take a natural approach which is fine, but I would at least consider trying a low dose abx. as a preventative especially during school months. Good luck

Personally, I think mixing it up is probably a good idea . . . Who knows which gut flora are flourishing in one's system and which aren't? We use a mixed probiotic that contains about a dozen different flora, and then also a sach b. -- not Florastor but a Jarrow brand version. Yes, supposedly sach b. is a beneficial yeast that can help crowd out "bad" yeast like candida. If you want (and have the extra cash!) you can go to a DAN Dr and have him order a comprehensive stool analysis - shows the exact gut flora! We were low on lactobacillus, NO yeast after 2yrs on abx (yeah) and a little high on clostridium so doing a course of flagyl to bring that down, and switched to a better probiotic. Now that's custom treatment! There are no Dan doctors in Our area so I may make another appt. with our pedi. just to ask him about it. Had his yeast tested a couple months ago at a urology appt. ( that's another story). But anyway, yeast was fine then. Not really sure how accurate the spit test is either, but thought I will try a different probiotic if necessary. Thanks for the advice.

If floristoror is considered a yeast probiotic then does that mean it is a better probiotic for fighting yeast? Just curious.... I have been wondering about yeast issues with my son so I had him perform the spit test this morning and it did show some yeast. Soooo.... I have been giving him one culturelle a day but wondering if I should change now to a floristor. Do any of you rotate probiotics or do them simultaneously. Any advice would be appreciated. Just want to control any yeast issues before they get out of control. Thanks.

Sorry, I don't have an answer to your question just wanted to say welcome to the board.

I don't know but maybe if you get the approval in the next few days, then they will have to cover the ivig even if it is given after the nov. 1st deadline. Good luck.

My son also had this when he was younger mostly on the upper arms and legs mainly on the front. I asked many of our doctors about it but was always told it was allergy related. This was all before pandas reared its ugly head. I do think looking back that he had mild pandas as a young kid but because he was always treated for strep and symptoms subsided I never questioned it. He is now 12 and this particular rash is pretty much gone. You did not mention your sons age. I have no idea what caused it or what made it go away, but just letting you know that it gradually got better as he got older. My son is very fair skinned so it was pretty noticible when not coved up by clothes.

I have just been using the compound w bandaid strips with the ointment inserted in the middle. He has just had one wart at a time so I really did not even think about how it might affect my sons pandas, I just wanted to get rid of the annoying wart. During the treatment of the wart and after it was gone my son was at 100%.(for the first time in over 6 months). Even after the wart was gone and I was no longer using the compound W (salicylic acid), he did stay at 100%. So I don't think it was a temporary response due to inflammation, otherwise when I stopped using the bandaids the pandas symptoms would have probably returned immediately. Anyway, a month later my sons tics started to return and sure enough, another stupid wart. I must say that at the same time his tics started to return, I was also trying to reduce his augmentin dose so that could have also been the cause of the tics. So.........now he is back on treatment dose augmentin, and still treating the second wart, and things seem to be improving. I will definitely try to keep better records from now on if we see any more warts so I will have a better idea what is going on. At that point I will ask my dr. about Tagamet. Is there any risk in taking Tagamet while on antibiotics? Did not know if they were contraindicated? Thank

Hmm.. We have no warts, but last year he did have to have 31 little ones burned from his arms, legs, and feet. Warts do not run in our family. They said he had so many because he scratched one ane they spread. Is warts common for other pandas children? I don't know, I am just trying to figure out if there is any connection. I think warts are viral, and not sure the virus stays in his system all the time. I am sorry, but I have not had much time lately to research it, just making a mental note of it. Thirty or so warts sounds pretty severe, maybe others can chime in if they have noticed any connection.

Augmentin is sometimes used for Lyme in conjunction with other abx. It depends on the individual and what sort of co-infection(s) are at work. Generally, you need one abx that works extra-cellularly and one that works intra-cellularly (a macrolide like zith) and sometimes a third abx that's a cyst-buster (like tindamax or flagyl). The extra-cellular abx are often rotated. My son has always responded well to augmentin and omnicef also made a big difference (omnicef aka ceftin crosses the BBB). It's possible that this clue means there is an infection component to your picture, that you just haven't hit on the right plan yet. It seems like doing a combo abx trial might be worthwhile. Fwiw - Dr B put my son on an augmentin+zith combo early in our treatment and it did nothing. It wasn't the right combo for my son. When we started with our LLMD, he added another abx and that made a big difference. So sometimes it's a matter of using the right combo, not just one particular combo. And over time, the "right" combo is only right for right now. You end up needing to rotate. One word of caution - my son was symptom-free at the start of the summer and had been good for several months. Sp per ILADS protocol, we stopped all abx to see if he could remain symptom free. Things crept back and by the end of the summer, he needed to re-start abx. It took about 2 months to get things back to baseline. So just be cautious about how long you do your trial. Sometimes getting that horse back in the barn can be tough. Did you stop cold turkey, or did you slowly wean off reducing the dose weekly, monthly, or daily? Just curious. At least you figured it out before any major downside.

When I try to either wean down or stop the augmentin my sons tics also start to return. It is so frusterating. Just saw our pediatric neurologist and she said basically the same thing, if it is working then let's stick with it. So that is where we are as well. It is frusterating, I know but what else could we do. Don't know how or when we will try reducing the dose again.

I am just trying to put two and two together, but my son had tics which would not go completely away, then I treated a wart on his toe and got rid of it. Tics then subsided. A few weeks later tics appear again and I check and he has another wart. Start treating the wart now tics are subsiding. Not sure though as during this same time we have changed medicines and things and eventually ended up back on augmentin which seems to help my son. So still not sure if the wart thing is related, or if it is just coincidence due to the changes in abx. I will keep a note of it in my book though. Sometimes it may be something as simple as a wart though.

We are a long way from any of the major pandas specialists. Also, because of expense we travel about 90 miles to see a pediatric neurologist. So far so good for us. Our local pediatrician has never treated for pandas, but due to sudden onset tics and positive bloodwork he did diagnose my son and referred us to the pediatric neurologist. We have now had our second appt. with her and really like her. She has treated several other pandas kids and does prefer antibiotic treatment. She will do ivig or pex but only if for some reason antibiotic treatment does not work. She wants to start with the least invasive treatment first. She took a lot of time with my son and asked him lots of questions. He is now 12. I had a list of questions for her but she basically answered most of them before I was able to ask, and she did do a full round of bloodwork on our first visit. I think it actually relaxed my son to have a doctor tell him he was going to be ok. She explained to him about puberty as it relates to a lot of children improving after puberty. Anyway, wishing you the best.

Still so much we don't know about this. My gut tells me this is not the result of vaccine just as rheumatic fever is not a result of vaccine, however once your child gets pandas symptoms I do believe that vaccines can further exasperbate the problem...the vaccines cause the immune response probably even worse than the standard cold or virus because vaccines are injected directly into the blood stream. Your body does not even have time to mount an attack on it before it directly gets into your bloodstream. Anyway, I am no medical expert so please dont take my word on this, but i am just trying to figure it all out like everyone else here. I hope this gets better with puberty. The neurologist we see does seem to believe it will probably get better. She is very positive about it. Problem I am having is just trying to figure out when boys do hit puberty and mature. Is it the voice changing? With girls it is easy but I don't know about boys.... Anybody who knows any answers on this please chime in. Thanks bye

Just the fact that you can pinpoint to the day when this all began for your son to me indicates sudden onset and pandas/pans.... So many times when our kids are sick now days and we go to the doctor we are sent home with nothing to treat our kids and a diagnosis of "viral". I get so tired of hearing it it makes me want to scream.... Chances are your son did have an infection of some sort and it was just never treated properly. I believe that most most of the time when i hear someone has Tourette's that it was probably an undiagnosed pandas case. Especially with such a sudden onset as you describe. I know that many on this board went years without a diagnosis and I am sure that they are better able to guide you as to how to proceed. I just want to say that there are possibly things that you have not considered beyond nutrition that could still help your son. Unfortunately there is no cut and dry protocol out there that works for everyone but many on here have had success with such things as homeopathy, antibiotics, supplements, ibeuprofin, and detox..... And usually a mixture of these. Others have chosen to go directly to a pandas specialist or the NIMH for big expensive treatments such as ivig or plasma exchange. You should definitely read as much information as you can and decide from here how you would like to proceed. If you care to list your state or country maybe others on here could help you by suggesting a doctor nearby who understands what this is and may be willing to try help. Good luck

Same here, I give augmentin in the morning and at night and give culturelle after school. My son does not like yogurt, so he prefers the pill. You have to be careful of some strains of probiotic that contain a type of strep bacteria. For some of the children it is fine, but for others it may not be beneficial. It is in most yogurts. It is called strep thermopollis or s.thermopollis. That is reason enough for us to stay away from it. Just don't want to risk any adverse effects at this point.

So happy for you and for him.... Maybe it was the whole puberty theory that kicked in. The bbb could have had time to strengthen and now he is finally feeling relief. I love to hear these stories. Thanks for sharing. We all need hope sometimes. Others have talked about that light bulb moment as well.

You said the doctor thinks this is POST infection related. So does that mean he is unwilling to treat the symptoms because the infection is gone? What has he given you in regards to any medications. Is your son on any type of prophylactic abx. to prevent future infections? It just does not sound like he is willing to do much in the way of treatments so he is trying to fall back on the Tourette's dx. I hope you can piece together some more of the puzzle but without a willing doctor on board to treat this it is going to be a real battle. Sorry you are having to go through this. Yes, unfortunately at this point, the Ped is unwilling to treat anything at all! We walked out of that office with SO many possibilities in our hands, and still no form of treatment. I am hoping the extension on the blood work or the MRI will show SOMETHING that will help us get a step closer to actual treatment! I am so sorry you are not getting any treatment for any of this. For us, augmentin has been the thing that we have found to help the most. Still not at 100% yet but it seems right now that my son will be taking this for the long haul. We just had our follow up apt. Yesterday and I was surprised that our doctor was not even interested in doing any bloodwork at all. She basically wants to just treat the symptoms. I am not sure that my sons bloodwork would have shown anything out of the ordinary anyway. We are just glad to have a treatment plan and are hopeful that these next few months will bring him back to baseline. For you, I hope that you get some answers. Would they not even be willing to try a month of abx. to see how he responds? Especially given the scarlet fever connection.

You said the doctor thinks this is POST infection related. So does that mean he is unwilling to treat the symptoms because the infection is gone? What has he given you in regards to any medications. Is your son on any type of prophylactic abx. to prevent future infections? It just does not sound like he is willing to do much in the way of treatments so he is trying to fall back on the Tourette's dx. I hope you can piece together some more of the puzzle but without a willing doctor on board to treat this it is going to be a real battle. Sorry you are having to go through this.