colleenrn

Yes, they are all on Zithromax 250 mg/day. Their weights are 47, 75, and 130. Colleen

Itching is listed as a side effect of Augmentin. If you take Amoxicillin or Augmentin whileyou have mono, you will get a rash, but it tends to be hives. Colleen

My kids are on Zithromax daily. When my 13 yo was 8 or 9, we didi Augmentin prophylactically every day until one day when she broke out in hives and we were afraid she developed an allergic reaction and chose to completely stop all antibiotics. This is another story, but a huge mistake and huge regret on my part, b/c once she was off the Augmentin she started to decline. Ever since my kids were heavily exposed to strep this summer, they have never been the same even on Zith. My question is, does anyone have any thoughts on either switching from daily Zith (they have been on it almost 11 months) to Augmentin? I am also considering remaining on the Zith, but adding 2 weeks of Augmentin. Any thoughts? Colleen

I think that once you know one of your children has PANDAS you have to look more closely at the siblings b/c knowing that one has PANDAS gives you that advantage of possibly catching any siblings symptoms much quicker which enables to you treat faster. My three oldest children have PANDAS. I did not do Cunningham's tests on my youngest who is 3, but wish I had and still may. I am not completely sure yet if he has PANDAS, but I am very suspicious. This is notto say that all siblings in all families will have PANDAS, but it is something to be vigilent in watching for signs in the others. Colleen

Kathy, That is very interesting. You saw an improvement when you increased the Zith to 625, but started giving it every other day instead of every day(or did I misinterpret your post and you give 625 one day, 250 the next, etc..?) You are still seeing a little improvement on 750 every other day? That really makes me question even more if my 13 yo (130#) is getting enough! She recently had a flareup from a "4 to a 7" and I knew she had been around someone with strep, so I gave her 500 a day for 5 days and she is back to a "4, maybe a 3". I have bumped my younger children from 250/day up to 375/day when I see flareups in them and know they were closely exposed to strep. How long do you think you will keep him on that dose? Ever since this past July when all of my kids were heavily exposed to strep for a week (4 cousins we were staying with had strep) they have not been the same. I have been wondering if they could have gotten exposed that week to a strain of strep resistant to Zithromax, but the other kids with strep responded to Zithromax, so I don't think it is that. I then have wondered if for some reason 250mg/day is not enough. That is why your post is so interesting to me. Thanks, Colleen

Hi Faith, Yes, getting 1 1/2 tsp, twice per day is 1000mg total, which is a good dose for 50lb. What is the plan for after he finishes the 10 days? How is he doing? Colleen

Kathy, I was just wondering how much Zith your son gets b/c I have all 3 of my children on 250mg/day, BUT one weighs 45 and one weighs 130, so I am constantly wondering if my 130# child is getting enough. Thanks, Colleen

Faith, Yes it is 400 of Amox and 57 of pot. clav. How much does yor son weigh? Colleen

You are most welcome! I completely agree with EAMom about not being willing to take Meg off the Zith to "see what happens". Some doctors just don't get it. That would be, IMO, the same as a doctor telling you to stop giving antibiotics to your child with rheumatic fever and let's "see" if they get strep again that attacks their heart. Colleen

Here are some abstracts talking about Zithromax being anti-inflammatory and immune modulating. They are mostly used with cystic fibrosis. http://linkinghub.elsevier.com/retrieve/pi...548276604000275 http://erj.ersjournals.com/cgi/content/abstract/24/5/834 http://ajrccm.atsjournals.org/cgi/content/short/170/12/1331 http://www.sciencedirect.com/science?_ob=A...e0d863a9412d79e Colleen

Shelly, How much Zith is Dr K prescribing. IMO, Zith may be better than Augmentin, just my opinion. Some do great on Augmentin. Colleen

My kids are on Zith 250/day for one year with no stomach problems. Sometimes it takes a while (week or more) and their stomachs get "used" to the Augmentin. When my kids were younger and took Augmentin for ear infections, the first several days it gave them diarrhea and stomach aches, then it seemed like their bodies got used to it and they were fine. Do you give it with food? Colleen

Can you get your doctor to call Dr. Latimer? That may be your best bet. Are you giving Ibuprofen along witht he Zith? Colleen

On February 20, 2009 Dr. Swedo, who diagnosed my daughter back in 2001, replied to an email I sent her and at the end of the email she said "we are in the process of updating our website". Still waiting on that update..... Colleen

Hi Bat-sheva, I am sorry about your daughter. I would contact Dr. K (web site listed in previous post). When was the last time she was on a treatment dose of antibiotics? can you find a physician who will let you try a trial of antibiotics for at least 3 weeks? I see that she ws initially on Zeclar (clarithromycin). How did she respond to that? To me, it sounds very suspicios for PANDAS, given that she started with infuenza and mycoplasma pneumo. Colleen

Yes, Zithromax is the best at reaching intracellular strep, but it also has properties that are beneficial to children with PANDAS, that most antibiotics do not have. Zithromax is an immune modulator, so it helps to modulate the immune system. Zithromax has anti-inflammatory properties which helps children with PANDAS b/c their basal ganglia is inflamed. Colleen

Normal strep titers don't mean much b/c lots of PANDAS children don't get elevated titers. Yes, you can definitely have an active strep infection while getting normal strep titers. You can also have an active strep infection and get a negative throat culture b/c strep can be elsewhere in the body. If you want to post your lab results I can try to help interpret them for you. What dose of Augmentin is he on right now and how much does he weigh? How much Zithromax was he on? Colleen

Have you checked into PANDAS? It is triggered by strep. Sometimes children are misdiagnosed with Tourette's and/or OCD when it is really PANDAS. Colleen

Lisa- Yes, the Omnicef dose was really low, so it is very possible, and I think probable, that he was exposed to strep and b/c the dose was so low it was not enough to protect him. The 1/2 tsp. of Zith only 3x/week is also really low. You may want to see about increasing it. If the antibiotic dose is too low, it is almost as if they are not on it at all. Colleen

Only one of my children presents with OCD. My other two (possibly 3) children present with anger, explosiveness, low frustration tolerance, some ADD/ADHD). Your child could be having an episode now and not be showing any OCD. Also, each episode can be different. Sometimes I see OCD in my daughter, some episodes I see only tics. Each time is a little different. Colleen

Not sure about the Tamiflu question, but wanted to add that you can take Tamiflu AND oscollococcinum at the same time. Oscillococcinum works in a similiar way as Tamiflu, but without any side effects. My children have the flu and our physician told us to just take Oscillococcinum, but said if we wanted, we could use Tamiflu at the same time. Colleen

Has your daughter been diagnosed with PANDAS and is she on antibiotics? Given that she gets strep and has OCD and tics, she most likely has PANDAS. Colleen

Stephanie- Maybe you are a carrier and that is why your culture was negative, although you can definitely have strep and get a negative rapid. Too bad they did not do a culture. If you are a carrier, try to stay on Zith for a while and see what happens. It can sometimes be hard to clear a carrier, but it can be done. If for some reason Zith did not work, there are other options (being on 2 antibiotics at the same time. I can look them up if you want) Colleen

Sounds very suspicious of PANDAS. My 13 yo daughter has a "classical" presentation of PANDAS (OCD, tics, etc.....) My 6 and 8 yo sons do not, but they are PANDAS. Their symptoms are ADD/ADHD, emotional lability (quick to anger and get frustrated). They could have easilybeen misdiagnosed as ADD/ADHD had I not had my "PANDAS radar" on b/c of the years of going through it with my oldest. I would get a throat culture (72 hrs.), Cunningham's labs, AND it would do no harm to try to get him on a few weeks of a good antibiotic and see his response. PANDAS has such a huge range of symptoms. Depression can be the main presentation. You don't have to have OCD and/or tics if you have some of the other symptoms. Colleen

Melanie- I think Clindamycin is a good choice. It is very similiar to Zithromax (Zith is a macrolide, Clindamycin is a lincosamide). I would keep a detailed account of how Danny responds over the next week to the antibiotic. Then you can show your physician how well he responded as evidence to give you daily Zithromax. Maybe you could get your physician to call some other physicians who know that high titers are NOT needed to diagnose PANDAS (I forget who- is It Dr. Latimer?, Dr. Leckman?, Dr. Swedo?, Dr. K?) Are you giving him Ibuprofen also? He could take 600mg every 6-8 hours. Colleen