BoyIowa

We are switching to Augmentin XR (generic) . We haven't gotten it yet but it shows:: QTY: 5 Amox/clav Er Tab 40 1000/62.5 1000MG My ds is around 60 pounds. The XR comes in 40 packs. This is a 90 day script. So the best I can cypher is he will be getting 1000mg twice a day with this script. Getting frustrated though, as our doc sent the script in to our mail order on Dec 15 to save $ and they haven't filled it yet.

We had a metrolab in the local hospital do the draw and they sent it FedEx for us. It seems the hospital ships out a lot with FedEx. We were just charged a small lab draw fee.

My son and I just had ours out 2 days ago. I had mine taken out because I had been putting it off for years and it helped him to do it. I hope it helps for all his infections. We are both in pain and he is very needy and anxious. I hope we are both better soon.

We have fire worries in our house at least 3 times a week. He wants a fire safe to keep some of his favorite toys safe in.

I have read that many families have siblings that have PANDAS. Is it genetic? My daughter had 6 strep infections in 4 months last winter and my PANDAS son felt the effects. She had 2 sets of tubes for ear infections and had her T& A out. My daughter has never displayed any OCD type symptoms. Then, just last month she got walking pneumonia. They gave her a z-pack and it didn't get better. She is now on augmentin for bronchitis with a steroid cough medicine. Yesterday she had a meltdown. She threw a fit, was extremely defiant and has been very clingy. I watch her every day and worry that she may have/get PANDAS like her brother. I have read on his forum that it can be tied to family members that have autoimmune disorders. My husband has ITP and my father-in-law has lupus. Is my daughter more likely to get it? Is there something that I should be doing to be proactive with her?

We heard that Epsom salt bath helped. Have not heard the apple cider vinegar. Does anyone know if it works he same? My ds had eczema when he was little. Doesn't the vinegar burn the skin?

My 8 yo son has chronic back pain. We tested positive for Lyme and his LLMD said that was a symptom of the infection.

We had the cough tic too and chronic sinus infections with it. It has been gone since we started abx.

Yes, please share! Congrats to you!!!

We didn't get it pulled today by the ped dentist - we had a consult. He couldn't get us in until 15 Dec for extraction. We got an appointment on Friday to have an oral surgeon pull it. Dentist said that a salt/peroxide/water solution will work the same as Peridex. I am going to have my hands full this weekend.

Dcmom, we have only just started fighting this thing. Got igenex lyme test done first and got put on abx after months of searching for an answer to 'what is this'? He had multiple + bands for IGg blot. Went it see dr k and he said pandas and no steroids with Lyme and recommended IVIg. We originally thought pandas, but suspected Lyme due to symptoms. I don't think that Lyme doc would give us steroids. Lyme doc recommends IVIg as well. Only been on abx for around 3 months and would be leary of trying steroids yet without knowing that the Lyme is gone. Waiting on Dr Ks notes before we can see a neurologist at children's that treat pandas kids with IVIg and have a good chance of getting insurance to approve. Our local ped will do things for us, but only if recommended by other doctor. That's good news nicklemama, we hope to get there soon.

We are on 500mg Augmentin twice a day and 250mg Zith. We are increasing to 500mg Amoxicillin 3x a day and continue with 250mg Zith. We got an appointment today with a ped dentist to see if we can get that sucker pulled. : ) They say it's just for a consult, but I am going to see if they can take care of it today. We will ask about the Peridex - thanks LNN. We are also on grapefruit seed extract. dcmom - I thought that a steroid burst is not good for Lyme. ?? We will get some advil or NSAID too, thanks.

We saw Dr. K several months ago and he confirmed PANDAS and recommends IVIg. Our local ped is aware of PANDAS, but doesn't know the ins and outs of it. We are in the process of gathering all of our records and medical notes to take to another doctor in our insurance network to see if we can get IVIg approved. In the meantime, we are on abx augmentin and zith with a LLMD so we are covered with the abx for the extraction. Just wondering if there is anything else that we can do to ease the flare.

I have seen posts on this forum about symptom flares effect by teeth. I need advice, opinions, experiences and don't know who to ask. My PANDAS/Lyme 8YO son had symptoms skyrocket on Saturday night. We didn't realize until Sunday that he had lost a filling in his tooth. This is the only thing that we can think of that has caused the flare. We took him to the dentist today and they said that they recommend either a root canal or an extraction (it is a baby tooth) as there is an additional cavity in the tooth and it is close to the nerve. They are concerned that drilling and filling may not fix it until it comes out on it's own in 3-4 years. They are concerned that it can become worse, get infected, and have to get pulled anyway. So, my concern is that if they are messing with a tooth nerve and there are risks with any choice and chances of infection, what would be the best way to go for a sick child. Our dentist recommended extraction, but he then referred us to a pediatric dentist as he did not know how to handle or consider the PANDAS effects. Is there anything that I should share with the pediatric dentist that will aid in our decision or anything that he needs to know? We are actively seeing a LLMD - on antibiotics, but haven't found a local PANDAS doctor to work with on day to day questions/problems like this. Thanks to everyone for any advice!

We have been seeing a LLMD too as he tested + for Lyme.

Dr. K recommends 1.5g/kg. NIMH recommends 2.0g/kg. other doctors we have heard used to recommend 1.5g/kg, but have increased to 2.0g/kg. The biggest difference that I have seen is how often or how many treatments of IVIg are recommended. I heard one doctor that does 2, 6 months apart. Another does on every month for 4 months. Dr. K recommended only 1 at first, then wait and see. It is so hard to know what to do, as each child reacts differently to treatments. We are pursuing IVIg ourselves and trying to get our insurance to pay.

We saw a ped at a state university hospital that said that she had seen Singulair work for tics in one child in her care. It didn't work for us, but could be worth a try.

Can you share who you are seeing in Madison? We are looking for a second opinion on the Lyme and PANDAS and are looking to head into WI. We are from WI and our entire family is there and we can't find much of anyone where we are in Iowa. Thanks!!

We are looking at heading to Madison area for a second opinion for our son - Lyme and PANDAS. Our biggest complaint is Tics. Can you PM me the list too? Thanks!!

We have our doc ordering more testing!!

I have been reading a lot on vaccines and their ties with autoimmune disorders. http://www.naturalnews.com/vaccines.html There may be genetic dispositions for families to have reactions to vaccines. Grandpa has lupus, dad got ITP from taking Malaria pills while in Somalia (so he is told). It is scary stuff. I read that the Amish (who don't vaccinate, don't have autistic kids). Why aren't there studies on this? - Big Pharma companies and Big $$$$. My experience in the past with getting vaccines for my kids has been that if they are sick, they can't get the vaccine that day. My son has PANDAS - he is sick. So, until he is no longer sick - no vaccines!! My daughter is due for a couple vaccines before she starts kindergarten. If I can find a way to prevent her from getting any more vaccines, I'm going to do it. Since my son has had PANDAS, my daughter had 6 strep infections in less than 4 months, 2 sets of tubes, tonsils and adenoids removed, walking pneumonia, constant colds, and now we are testing for allergies. She gets aggressive when she gets sick and if vaccines can trigger what’s in the genes, then I say ‘###### no!’

Not sure if this helps, but we tried Clonidine and Guanfacine and Vyvanse and Concerta and Zoloft and lastly Risperidone. All made tic go up, all made him extremely emotional - cried often. Most made him more hyper and one made him look like he was trying to crawl out of his own skin as he smashed his head into the wall. They either gave the opposite effect that they were supposed to or sedated him. That is when we thought that he might not have ADHD or OCD or Tourette. He has Lyme and PANDAS I am so greatful for the info that is contained on here and am amazed as to the numerous things that work for some and not for others.

I have been reading so many intersting things on this forum about different tests, numerous treatments, food avoidances, vitamin supplements, etc. I feel overwhelmed. Just when I think that I have all of the pieces to the puzzle, I think 'maybe there is another one that I might be missing'. I am working with a ped on our path to discovery and treatment. We are using resources and recommendations of other physicians and research studies. We are on abx augmentin and zith. I would like to request from our ped to have some additonal blood work done. We had the ASO, Anti-Dnase tests run - PANDAS and we had Lyme test done - positive. I would welcome any ideas on recommended tests that would enlighten us on what could be contributing to the symptoms - tics, OCD, anxiety, fidgetty, difficulty falling asleep, achy back, hyperactivity, has to touch everything, inattentivenesss (He doesn't have all of them all of the time, so I think we might be missing something). I would also welcome any at-home 'treatments' that we could try to help with the symptoms.

Not sure how close you are, but if you are within the first 6 months there is a study that is recruiting patients. http://intramural.nimh.nih.gov/pdn/web.htm

We are doing daily abx right now, but I don't see that as the long term solution. I have seen that some have done IVIg first and when it didn't work they did plasma and it worked. I know that there may be one of many other treatments out there from vitamins to food avoidance. It just seems so overwhelming sometimes and the puzzle just keeps getting bigger when we thought that we found that last piece. We have reached our insurance out-of-pocket maximum for the year and thought that we would try and get something done with the little time that we have left this year. I have a ped that is willing to work with us to get what we need and it can be done at our local hospital. We haven't discussed all of our options yet, as I am trying to become educated myself and gather as much information and personnel experiences as I could.