aidansmom

Thanks for the replies so far. I may also post this on the PANDAS board also. Our neurologist is the one who suggested that we try the LDN and our LLMD doctor is OK with it but doesn't seem to pushing for it. It seems like the LLMD is pushing for the use of GABA more which we have started - GABA seems to be possibly helping with his sleep when given at bedtime but not with things during the day. We are having a lot of problems lately - mostly behavioral but it seems like he may be in pain and have other things going on also but the behavioral problems are the most detrimental from my point of view. Possible from the use of a new antibotic that started about a month or so ago. I actually have some on hand prescribed by the neurologist but have been researching its use before starting. Most of what I am readind suggests that you start with 1 mg and work up to a max of 4.5 mg. Our Dr. prescribed 4 mg - thinking for asking to start at a lower dose. The only neg side effects I read about is sleep issues and vivid dreams but this usually goes away after a week. Any more input would be greatly welcomed.

Just wonder if anyone has used Low dose naltrexone? Did it help? What dose?

My son had a really red bottom like this. We swabbed for strep (Nurse practioner from peds office didn't think it looked like strep though) - was negative. We increased probiiotics in case it was yeast and applied nystatin cream. LLMD thought it was most likely herxing. Son had just started new antiobiotic 2 weeks beffore Rifabutin.

Also, if you have another MD sign for it, make sure that that Dr's office will give you full copy of the results when they come in. IGenex will not send the results to the patient - only to the MD who signed for it. You will want to take the full results that show which bands are positive to the LLMD

Aidan's brother had strep a couple of weeks ago. Even worse is that the brother told me he thought he had it but I thought it seemed more like a virus so I didn't bring him in right away. When I finally did he was positive. Then it hit me that Aidan's behavior had ramped up and so I decided to bring him in to the pediatrician for a check. The nurse did the swab before the doctor ever came in and it was good they did because they would not have swabed based on clinical presentation. He did not have a red throat nor swollen glands like his brother did. He also has had his tonsils removed. But his rapid also came back positive. Of course it was Friday after 5PM when this was done so we were not sure what the LLMD would recommend. The pediatrician put him on Clindamycin for 10 days. For his Lyme treatment he had been on omnicef, azith and mepron but it was pulsed only on Mon, wed and Fri. For these 10 days we dropped the omnicef (similar to clindamycin) but otherwise continued on his LLMD's treatment plan. They behavior improved after this treatment. I believe there is no way to totally keep them from strep exposure unless we keep them in a bubble. Hopefully one day with treatment and uncovering the different layers of issues that they will be healthy enough and their immune system will be functioning well enough that having strep or being exposed to it will not be as big of a deal. I will be interested to see if Aidan's ASO or Antidnase change after this exposure. (antidnase has been elevated since August - measured every 3-4 weeks) I do question if is possible Aidan has had it longer than that and that his brother finally caught it from him and if strep is a bigger player than what we are treating for now. Hopefully keeping records of behavior/labs/treatment and response to treatment will help us figure out this puzzle.

Aidan's LLMD put Rifabutin on his med schedule to start Feb 13th. We got this schedule at our last Dr appointment at the end of Dec. But, With Rifabutin being down the road on the schedule I did not ask anything about it. Also, I brought the Script to the pharmacy and this drug is quite expensive. So, I am wondering what the thinking is for him to take this. I will ask the LLMD when I get a chance but just wondering if anyone else has experience with this med.

I think we are going to be starting this soon (maybe next week) at the suggestion of the neurologist. She has said that it is sometimes used with kids with things like PANDAS. She sees lots of kids with autism and some with PANDAS - I think that she may have first heard of this from patients as she sees a lot of patients who are also on alternative treatments.Our LLMD said it was OK to try also. I have a friend who started using it a few years ago with her autistic son (I question whether infections may be playing a role in his autism) and his verbal ability increased signficantly. Anyone else using it? I took just a moment to research and I thought this website looked interesting: http://www.lowdosenaltrexone.org/ lismom - let us know if you ped prescribes and if it helps. Also, any sites that are worth looking at regarding this?

I think you have gotten some good advice here. I also immediately thought Bartonella when I read your post based on the cat bite and symptoms. I think finding a LLMD would be good. Also, your description of your younger son sounds so much like Aidan. We believe he has congenital Lyme and Bartonela (test was neg for Bart but symptoms support it). Early on he had ear infections constantly starting at 6 months and later at 3 years olds he had multiple documented strep infections (I wonder if strep was a player earlier). He also had sleep issues, GI issues (reflux started after birth), a movement disorder, crazy behavior. And he is developmentally delayed and the gap only got worse as he got older until we started on the PANDAS/Lyme trail when he was 7 - then things started to improve. We are far from being "normal" but it is much more managable and it is getting better. The good news is that you have found this earlier than us - I only wish that when my son was younger we knew to go in this direction. It is a long road - but filled with hope as well as bumps along the way!

It was Dr. Max Wiznitzer and believe it or not when we first moved to where we are now I took Aidan to see him for nueorology so I about fell out of my chair. when I saw him on this story. I will post more later when I have more time(but I am so glad my gut said to move on from him.)

I believe I have read that each lab has its own upper limit of normal (the highest number that is considered a normal result) for ASO based on how they do the tests So it is a good idea that you try to test at the same lab each time in order to compare one months to another. My guess would be if the lab result says: < 90 normal that it means that 90 is the upper limit of normal and the results are something less than 90 but they are not giving you a specific number. our results from quest look like this: Test Result Range ASO 139 <150 Which means that Aidan's result for the ASO test is 139 and the upper limit of normal is 150. Since 139 is less than 150, it is in the normal range. Quest changed their upper limit of normal for the dnase-B in August from <187 to <376, I am not sure why but each time we have got lab results since then there is a note that states this under the test results.

Where are you at in Ohio? I am in the Akron area.

I copied the following from http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000901/ Why is this medication prescribed? Clarithromycin is used to treat certain infections caused by bacteria, such as pneumonia (a lung infection), bronchitis (infection of the tubes leading to the lungs), and infections of the ears, sinuses, skin, and throat. It also is used to treat and prevent disseminated Mycobacterium avium complex (MAC) infection [a type of lung infection that often affects people with human immunodeficiency virus (HIV)]. It is used in combination with other medications to eliminate H. pylori, a bacteria that causes ulcers. Clarithromycin is in a class of medications called macrolide antibiotics. It works by stopping the growth of bacteria. Antibiotics will not work for colds, flu, or other viral infections. Other uses for this medicine Clarithromycin also is used sometimes to treat other types of infections including Lyme disease (an infection that may develop after a person is bitten by a tick), crypotosporidiosis (an infection that causes diarrhea), cat scratch disease (an infection that may develop after a person is bitten or scratched by a cat), Legionnaires' disease (a type of lung infection), and pertussis (whooping cough; a serious infection that can cause severe coughing). It is also sometimes used to prevent heart infection in patients having dental or other procedures. Talk to your doctor about the possible risks of using this medication for your condition. Could your son have Lyme and/or Bartonella (sometimes called cat scratch disease)? Could this be working to kill one or both of these and thus causing herxing?

Because the parents may not have made the connection. Or they may have brought it up to the Drs who reassured them that it can't be the vaccine since it is safe. see http://truthaboutgardasil.org/injuries-continued/ I picked this page because the first story is about girl continued to get round 2 and 3 of the vaccine because they did not make the connection after the first go round with it. (Reminds me of when my son kept vomitting as an infant - it took me forever to realize it was the rice cereal I was trying to feed him - who would have thought!!!) Also the girl from OHio a few stories down the page was featured in our local paper a couple of years ago (she had attended the same grade school my kids do but I don't know the family). Even though her parents thought it may be the vaccine most the doctors she went to said that it can not be and that the vaccine is safe (see a correlation with PANDAS?) Her reaction was also not immediate - a couple of weeks after recieving the vaccine - that might make it hard for someone to think of if it is not on their radar. She also was shunned by others in her high schoo. Others girls where saying "It can't be the vaccine - I got it and I am OK" - perhaps the parents don't want to speak out until they get the data. I am not saying that this is it - just something that could be intitially checked out with some basic information.

I have heard a lot of people suggest the gardasil vaccine as a possible cause. I would like to have answers to 2 simple question - 1. Have these girls all had the vaccine? and 2. When did they have it in relation so the symptoms appearing? Since this vaccine is highly recomended and considered routine in this age group - you would you would think that privacy issues would not be involved here. Also, data on other vaccines that the girls have had recently would be a good idea.

It is funny that I was going to post a question about B12 also. We also give the B12 during sleep - if he was in a deep sleep he didn't budge during it. The problem is that some nights he doesn't sleep as soundly (or I didn't catch him in a sound sleep)then he seems more aware and flinches but it beats the anxiety that he would have with the needle if he was awake. If he seems not sound asleep and I want to get it done I do queitly tell him that he is going to feel a quick "prick". Another thing that I have been considering is doing B12 transdermally which the pharmacist says is not quite as efficient as injections but more efficient than orally. My question to anyone doing B12 - do you know the dose is and what form? My LLMD prescribed a dose that is way higher than the previous prescription that was written by a DAN doctor and I am concerned about giving too much. Does anyone know if there are concerns about taking too much B12? Thanks Elizabeth

They make wrtistbands that use accupressure to treat nasuea - sea-band is one brand name. Here is a another brand that gives clinical studies regarding these: http://www.biobands.com/nausea.htm I have never tried them but I picked some up on clearance a couple of years ago from our gracery store and your post just reminded me that I had them. If you are having trouble finding them and are interested in trying them - pm me - I would be happy to send the ones that I have - they are seaband - children's size.

Aidan does not swallow pills. I use artemisinin in capsule form. I feel awful as it tastes soooo bad, very bitter. I mix the contents of the capsule in liquid fish oil of all things and make him take it with a syringe. I think the fish oil actually takes a bit of the edge off. I also choose to mix it with fish oil becase it seemed easy to mix with oil and also the mepron he is taking is supposed to be taken with a fatty snack. I don't really consider fish oil to be a snack but at least it is fatty! I can't always count on him eating a particular item I offer him but at least I know he is taken the Mepron with some fat!!! Bur it is by far the hardest of all his meds to take. I wish he would learn to swallow pills - so much easier for him.

Aidan does artemisinin - 300 mg 2x a day but only on Mon, Wed Fri and only every other week. He also takes Mepron for Babesia also on the same days. His antibiotics are on the same days also. He is 50 pounds. He has been doing this since the beginning of Oct. The first couple of months seemed pretty tough especially by the end of the "on" week but I think I am starting (in the last month) to see that he actually seems better on the "on" week and then have flares near the end of the "off" week. Also in the last month seems like I feel he has been making progress in his behavior (ADHD, impulsiveness, etc) and his ability to communicate with us.

Wendy, You are a genius! Out of 17 possible symptoms, he has 12. I am in shock! Cobbie Cobbie - Perhaps this is a huge missing piece for you. Has your LLMD tried to treat for Babesia? I also identified with these symptoms for Aidan and had no clue that some of these could be Babesia. I am not sure of the eye pain due to his lack of communication ability... but we often would see him rub his eye or that area of the face like something was going on there - perhaps this is why. Our Dr has been treating him for Babesia since the Beginning of Oct even though there was no positive test to say he had it. He is on Mepron, a Very expensive and nuclear-yellow liquid, and artemisinin - a supplement that I have read can be quite powerful for Babesia, in addition continuing abx. At first I think we had herxing pretty badly but I think I am all of a sudden seeing some major improvement (fingers crossed). We are supposed to treat on this protocol until the end of the month when he had a follow up visit. OUr Dr pulses the abx and the Babesia meds - every other week only Mon, Wed and Fri.

I believe Lyme disease has a cycle of around a month. Not totally sure about this but it might be worth looking into. My kids also vomitted with strep but the cyclic thing seems different. It seems like with strep it would be constant unless you treated with antibiotics. Elizabeth

We do Flagyl (also a cyst buster) only every other Friday. The first time we had some scary neuro stuff the next day. Remember that everyone will have a different experience. Here is a thread about it that I wrote on the forum: (To cut to the chase read the last 2 posts on this thread - I sum things up with a timeline and posted some video) http://www.latitudes.org/forums/index.php?showtopic=13789&st=0&p=113890&fromsearch=1entry113890 LLMD said thought it defenitly was a herx and they were not surprised. They did want the neurologist to maybe look at level of seizure medication or other supports. We did raise seizure meds. Neuro also believed it was related to Lyme also. The episode on the video tape was similar to ones that we first noticed back in 2004 at 1 years old when we first realized something was wrong with Aidan but the taped one lasted longer than the earlier ones. We believe he has congenital Lyme diagnosed in Jan 2010 at 8 years old. The panic/falling incident that I mentioned at 9:00 in the timeline had happened similarly once before Lyme diagnosis back in July 2010. I was afraid to give the Flagyl again in case it was an drug reaction but he did not have a dramatic episode again if he herxes from it now it is not as obvious.

No great answer for you except that I am struggling with same thing. I had 3 double double stared band on both IGG and IGM (band 31, 41 on both and 83-93 on igm, 34 on IGG. I can't decide if I should get treated based on my symptoms. I did schedule an appointment with Aidan's LLMD but it is not until Feb. due to trying to coordinate travel with Aidan's visit the schedule of the LLMD. I can't decided if the $$$ is worth the possible benefits especially with the costs of Aidan's treatment so high. I don't think that I am suffering from anything too terrible - but who knows. If this was all covered by insurance then I would probably be in there in a heartbeat.

Curious about the deodorant too. What made you try it? Did someone suggest it? I like it because it is not another thing that you need to put in your body. Any one else use it?

Are you asking if your child might have lyme also? if so, it is very possible that your daughter has Lyme in addition to Bartonella. Is the doctor that is treating your daughter for Bartonella treating her for Lyme also? or just the Bartonella? Have you talked to the LLMD about what is happening on Bactrim? Do they know you tested postive for Lyme? I think you really need to talk with your LLMD about what is going on - it seems as if something needs to be changed but it should be guided by by someone who has the experience of treating Lyme/Bartonella. We beleive Aidan Has congenital lyme and I don't think he was limp as a baby. However he was always very wiggly and had a hard time with nursing and other things since he was so squirmy. He had reflux pretty badlly also. I think it can just presents differently in different people. Elizabeth

With a bullseye rash prior to the onset of the symptoms I would not spend too much time with testing. There are a lot of reasons a Lyme test can come back negative while the patient still has lyme. Try to get in with a LLMD.