colleenrn

Robin- What antibiotic is he currently taking? I am worried that perhaps it is not working. Some antibiotics are not effective in treating strep. Can yo add Ibuprofen in the short term? Inositol can also be helpful with intrusive thoughts. Colleen

When I used it in the past for my children when they absolutely could not fall asleep no matter what and when they did fall asleep they continued to wake up all night, it has been successful with no side effects noticed. However, all they needed was 1/4 of a 2.5mg sublingual, so .625mg. I have taken a whole 2.5mg, I have also only taken 1.25mg and it works exactly the same for me. The 2.5 did not work any better for me than the 1.25 did, so if you try it again, maybe just give him 1/4 of the tab. Colleen

It sounds like she has strep based on all her symptoms. The lab could have made an error. OR, sometimes if it is intracellular strep, the swab must pierce the agar and maybe they did not do that? One more reason could be the nurse did not get a good sample. Did they do the two swabs separately or put them together and swab only once? That is risky when it is done that way b/c you do not get a good enough sample. Do you know if they swabbed both tonsils? I can't find the article now, but there was a study that showed in 20% of the cases, one tonsil can culture negative when the other cultures positive. Perhaps that was occuring and they only swabbed one tonsil. I would, without question, treat for a positive rapid. We have gotten a positive rapid with a negative culture, but my physician said it was for sure positive and should be treated. What antibiotics do you use? Colleen

It could be strep or staph, but it should be cultured, especially given that his OCD is worse. Are you treating him with antibiotics? Imetigo often gets a honey colored crust on it, but even if it does not have that, I would not rule it out. Colleen

Thank you so much for everyones replies! So, I guess we are not alone. My daughter slept with us until she was about 3 (our choice- had nothing to do with PANDAS), but starting around 3 she slept alone without any difficulties, even through her PANDAS, until she turned 11 and had untreated strep (did not know at the time) and the onset of intrusive thoughts for the first time. It has been ever since then that she does not want to sleep alone. She is fine spending the night at friend's houses- no problem, but when she stays at my mom's house, she wants to sleep in my mom's room. The intrusive thoughts were the most terrible times and I was so grateful when they resolved that I did not care where she slept. I think part of it has just become a habit and that CBT could help, we just have not tried it. It is not a huge deal, but she will be 14 soon and I have to imagine that it does not feel good to be a teenager and not want to sleep alone, so it is for that reason that i want to try to see if we can help her be able to sleep alone. Colleen

I am so glad you figured out what was wrong with him!! Mommy Power!! Colleen

My daughter is almost 14 and started her PANDAS "journey" the month after she turned 5. We rate her symptoms on a scale from 1-10, with 10 being the worst. There have been times in the past 9 years that she has been a 10, but thankfully not very often and not since she has been on daily antibiotics. Her very worst episode was when she was not on any antibiotics and got strep. She has also been a 1, but mostly hovers around a 3. If she rates herself as a 2 or 3 I am happy and so is she. She often jumps up to a 5, but it usually correlates with strep exposure, especially when it has been a family member with strep in the house, and responds to an increased dose of Zithromax. I will bump her up for 5-7 days and it usually works. My question is, even when she is a 1 or 2 or 3, there is one symptom that has never gone away. She is afraid to sleep alone. For the past 3 years it has been consisitent. She is able, however, to spend the night at a friend's house with NO problem whatsoever. I am wondering if part of this is that it has just become a habit. Does anyone have any thoughts? TIA. Colleen

I think it is great that he has an open mind about antibiotics and a willingness to learn from his patients! I wish all physicians could be like him in that way. Colleen

Also, the once a day Augmentin. It has a short half life and works much better if given twice a day.

EAMom The thing I am not understanding is the super low doses of prophylactic antibiotics in some of his patients and in not even having some of his patients on antibiotics at all. Colleen

There is no doubt, IMO, that Beth is helping a lot of PANDAS children, BUT how many are being told they don't have PANDAS b/c their physician is going on the belief that titers have to be elevated and are the best way to diagnose it? How many children are being misdiagnosed b/c of this? How many physicians read her info and then read the info on the NIMH site? I can't stand that there is just more misinformation being spread around. Why can't we all be on the same page that not everyone has to have an elevated titer? Can all of us to have had a positive culture, yet normal titers try, yet again, to get through to her? Just a thought and a little rant. Colleen

I am not understanding Dr. K's stance on antibiotics. Not at all. Colleen

My two oldest children were under anesthesia for a T&A and I did not see a flareup. My 3rd son has had nitrous oxide three times in the past year for cavity repairs and I did not see any flareups then either. Colleen

I think your letter to the editor is very good. I had to check out ther infamous Dr Rioux after reading what he said in that article.How scary is it that the Center where he works lists his "primary responsibility" as performing pediatric neurology consultations and teaching house staff and medical students So he is teaching these med students that PANDAS does not exist so we can have a whole new batch of the "disbelievers" . UGH............... I would just love to be there when these drs finally realize how real PANDAS is. What will they say then? "Whoops, it is real. How dumb was I?" Colleen

They had PANDAS prior to surgery. We removed them b/c they were a source of infection in both kids and also sleep apnea in my son. My other two children that we are considering a T & A also have PANDAS. A T & A will not cause PANDAS, but IMO, you have to aggressively erradicate any strep prior to surgery and also follow upo with antibiotics post surgery. Colleen

My daughter had her tonsils and adenoids removed when she was 6. She was strep free and PANDAS symptom free for 1 1/2 years. She then got strep and eventually we put her on prophylactic antibiotics, which she is still on. She is will be 14 this year. My son had his removed when he was five. It definitely helped him, especially b/c he would get some sleep apnea whenever he was sick b/c the adenoids would enlarge. I think in both cases things would be worse now if they had not had them removed. The ENT commented that they were large and cryptic, making it impossible for the antibiotic to get rid of all the strep. We are now considering doing the same with my two younger sons as they get strep and have sleep apnea episodes when sick. The one thing I would recommend is that the child be on a treatment dose of antibiotics prior to the surgery. There are some old posts of Dr. T's where he talks about the different pathogens he has found when doing a biposy of the tonsils. Colleen

By doing a search for old posts about Augmentin, it looks like children are on anywhere from 300mg of Augmentin, twice per day, up to 2000mg per day based on their weight. I am still trying to figure out a good prophylactic dose of Augmentin for my son, at least to start. My physician is willing to decrease it or increase it based on symptoms, but we are not sure of a good prophylactic dose to begin with. He will be 4 in August and weighs 38#. I also wonder if, since he is currently on a treatment dose of Zithromax, would it be better to do Zithromax every other day or every 3rd day in the beginning and see if that would be enough to protect him, with the goal of twice per week. My oldre kids are on Zithromax 250 everyday, but once they are out of school and away from the plethora of strep, I may try to decrease them to 125mg/day. They have been on 250/day for almost 20 months now and I worry about that. Thanks again. Colleen

The reason I was thinking of doing Augmentin is that I am not sure what antibiotic we would use if he gets strep while on prophylactic antibiotics. I am too afraid to use any cephalosporin b/c we are not 100% sure he is not allergic to it and maybe that was the cause of his rash, so that prevents us from using keflex, omnicef, cefdinir, etc... My thinking was that hopefully the Augmentin would protect him from strep, but if not, we could use a treatment course of Zithromax. If we put him on Zith prophylactically and he got strep, I guess we could then treat him with Augmentin? He was on Zithromax three times in the fall and so we decided to try omnicef in Jan. when he got strep again and he was on Omnicef in Jan., Feb., and April for 10 days each time. It was the last time he was on Omnicef that he got a perianal strep rash while on the Omnicef, then got really sick with a head to toe body rash that we still don't know the cause of (Kawasaki, strep, allergic reaction to Omnicef, virus??) I am just so confused as to what to do. Colleen

I posted a few weeks ago about my 3 1/2 year old son who was very sick with strep, fevers, rashes, etc.. He has had strep several times over the past months and after this last illness we decided to start him on prophylactic antibiotics and may consider removing his tonsils and adenoids (I have two kids who need a T & A, so not sure who to do first). He is on his his 19th day of Zithromax and has a few days left (treatment dose b/c he was on Omnicef and still had strep, so we switched him to a longer course of Zith). My physician has agreed to start prophylactic antibiotics, but I feel we have to start with Augmentin instead of jumping to Zithromax (my older3 kids are on daily Zithromax) b/c we are not 100% sure yet that the rashes were not an allergic reaction to the Omnicef and need to stay away from all cephalosporins until he is tested. If I use Augmentin daily, my thought is that if/when he has a big flareup of PANDAS symptoms, we could do a course of Zithromax. My physician wants to to find out/figure out what doses seem to work with other PANDAS children. My son will be 4 this August and weighs 38 lb. TIA. I really appreciate any feedback. Colleen

bumping. Colleen

I am desparately trying to figure out what is wrong with my son. I was worried about Kawasaki and still am, but wonder for those whose children had rheumatic fever, what were your abnormal labs?? His ESR (sed rate was 35) which is elevated and his CRP (c reactive protein) was 0.3 on Friday, but up to 1.6 on Saturday. We have drs appointment in one hour but trying to get info ASAP from parents who have gone through this. TIA. Colleen

I am very confused and trying to figure this out before my son's dr's appointment this morning. I have been posting about my 3 year old who I was very concerned could have Kawasaki disease based on his symptoms, including a terrible all over body rash (scarlatinaform rash, hives, and flat red larger (size of pencil eraser) red spots. THe ER dr's and the pediatric dr's at the hospital did inot think he had Kawasaki b/c he did not meet ALL the criteria, however his sed rate and liver enzymes were elevated. I emailed Dr T and he said that his labs fit with Kawasaki except that his platelet count was not elevated. He said there are otrher things that can cause a rash like that, especially while on antibiotics (was on 10 days of omnicef, now on Zithromax). He said to test for CMV (cytomegalovirus), EBV, and mycoplasma. Has anyone's child htested positive for myco pneumo and only had a cough and fever with a pretty normal chest xray (chest xray showed mild thickening of wall)? TIA Colleen

WE are 28th today!!!!!! Colleen

Thanks everyone for your responses! Spent 9 hrs at ER Sat and still no answers. Rash not as bad but it is still there. Wendy- I just IM'd you. Colleen

Nancy, I am so sorry. I am thinking of you and your daughter. Hang in there! Colleen