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aidansmom

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  1. A couple of years ago I had a problem with my eye - increased floaters, turned red like it was infected, didn't feel right. I was referred to a Retina Specialist who could see what the problem was. He said it was probably Toxoplasma and he could see an infection and he saw scar tissue around the same place as my current infection. The scar tissue showed that I had had probably obtained the infection previously - who knows when - anytime in my life and it laid dormant until it reactivated. He did not run tests on me but said he was pretty sure it was toxoplasma. He prescribed about 5 weeks of antibiotics - wish I could remember which antibiotic. It was before we treated pandas/Lyme for Aidan otherwise I would be familiar with the antibiotic. I wonder if toxo is a player in my son's condition.. We just recently ran a blood test to look for antibodies for toxo in Aidan - awaiting results. A new doctor we saw ordered these tests. He also looked into my eyes with a light and could see the area that had been affected.
  2. I would think twice about going to an infectious disease specialists for Lyme especially if you think that the Lyme has been there for a while and if you there is a PANDAS type reaction. There are 2 standards of care for Lyme. Here some websites that talk about it. http://www.ilads.org/lyme_research/lyme_articles4.html http://www.ldsg.org/index.php?id=71 Most infectious disease doctors beleive in the shorter term treatment of Lyme (what the Infectious Disease Society of America recommends) but most of our kids that may have lyme may benefit from longer term treatment. To investigate Lyme make sure you go to a LLMD (Lyme Literate Medical Dcotor).
  3. Her weight would be a factor here - how much does she weigh? That is important to know when looking at dosage. Aidan is 55 lbs and for that weight I was told that 2 mg is the lowest treatment dose and that the averege treatment dose was from 4 to 6 mg. If your daughter weighs more than Aidan than you are not even at low end of treatment dose, Aidan started on 1 mg, then moved to 2 mg after a week or 2. We saw positive results pretty quickly (even on 1 mg) and life became a lot easier. A couple of months later we him to 3 mg and then he now is on 4 mg. He still is on the low end of average treatment dose. If you think your negative things are happening due to this medication and that the negative outweighs any improvement then perhaps this drug is not the one for your daughter. Also, as someone has mentioned - glucose levels should be checked with abilify.
  4. How much does she weigh? Were there any other changes? It seemed like things were going better a few days ago for you, did this happen after the addition initial of the abilify? or do you think something else caused her to have the good days?
  5. If you noticed that the adhd meds obviously helped with symptoms when you added it in I would think twice before taking him off. Even though it may be the Lyme/bart/pandas that may cause the symptoms if there is a drug that helps with the symptoms while going through treatment it is often worth it. As we know treatments can make lyme symptoms worse so they may need the other drugs to support them through treatment. Tenex did not help Aidan for ADHD - I think a lot of people thought it would but when it had no apparent affect so we took him off with no apparent worsening. Abilify helped him immensely so I will keep that to help him through treatment. The psychotherapist in the link that LLM gave you is a good resource. I spoke to her on the phone and she does phone conferences - perhaps she has recomendations that your ped could follow up on - not sure what she knows about the different medications. I ended up not scheduling a phone conference with her as the abilify pulled us out of the crisis but I know she is there if we get to a low spot again (or if I was having trouble with the school). I was looking for a psychiatrist at the time but thought it would be useless if they were not Lyme literate. I think that would be a dead end. We are blessed to have our neurologist to help with these kind of meds. We don't live near you but I wonder if there is someone like that in your area. She is somewhat knowledgable about PANDAS and accepts the Lyme diagnosis. She is somewhat traditional as far as prescribing meds but she is open minded. She treats a lot on the autism spectrum and has her own practice but does not take insurance as we know some of the best lyme/pandas/ doctors don't. But it sounds like the ped you have is a lot like this willing to help you.
  6. Would nattokinase work for this? Aidan is on it for biofilms but I was thinking that it might help with this also. Worth looking into as it is a supplement.
  7. Lilly - Just to add a bit more. Some of Aidan's sypmtoms were also snaping and lashing out at people like your mention. for him it was often physical aggression and fight or flight kind of behavior. It was often out of the blue. His experienced special ed teacher said that she couldn't find the triggers for his behavior. She said with other students that usually she can figure that out and keep the behavior from happening but could not with Aidan. To me that confirmed his diagnoses as the trigger was inside his body and brain. He was already in a special ed room all day with kids with autism, etc where they may understand and expect a little more behavior like this but I was so afraid that they were going to put him in a school for emotionally disturbed or something- not sure what they were going to do if it continued. Luckily we found the abilify! He still has issue with some of the behaviors but it is much more managable.
  8. Abilify worked wonders for us. Both our neurologist and LLMD recommended it and we started it when we were at a really low point of behavioral stuff. We think this bahavior was due to herxing with Lyme and Bart treatment. We started out low and we saw results pretty quickly. This is the first behavioral type drug that has done anything for us. Of course every kid is different on what will work for them so it may not work for you. Aidan is 50-55 lbs. IN the spring we started with 1 mg and moved up to 2 mg (minimum treatment dose for his weight) in a week or two. I saw results on the 1 mg and pretty quickly (a couple of days). I guess the average dose for Aidan's weight is 4-6 mg and we started seeing some behaviors again a month ago, so we moved him up to 3 mg and again saw results but it took more like a week. We are about to go on to 4 mg (actually 3.75 mg to save money - see below). I think it would be typical to take a week to see results but ask your doctor. It has helped with impulsive behavior, adhd, concentration, etc, He seems to be performing better at school and able to communicate better sinc being on it, It is very expensive. (It is not generic yet and I had heard next year but when I search when online I think it won't be until 2015.) A while back I saw on the abilify website that they had a program where they would help you with your copay for 18 months so you might want to research that. It is for new prescriber so since Aidan had been on it for a few months we were not eligible for it. I save some money by getting it mail order through our prescription mail order and by buying larger size tablets and spliting them. Also I think it is important to check glucose levels when on it, hopefully your prescribing doctor would be up on this.
  9. We go there I will PM both of you today or tomorrow. Elizabeth
  10. Nystatin will kill Sach Boulardi so if you give both they need to be seperated. Our LLMD actually took Aidan off of Nystatin and put him on Sach Boulardi. But is should be OK to take Nystatin with antibiotcs or with probiotics that consists of good bacteris (but not yeast like Sach Boulardi).
  11. Here is another article about panic attacks. Different article, same author? http://www.rodale.com/lyme-disease-panic-attacks?page=0,1
  12. Found some quotes from our LLMD regarding LDN in LLMD's clinic notes from visits/phone consults: from appt in Dec. "Brief discussion today regarding LDN and how it can boost natural endorphins and has benefit for pain control as well as boosting imminologic funtioning." ohone consult in mid-March: " "clinic is supportive fo a trial of LDN as this has beneficial effects on immunilogical functioning." Finally tried it in mid-march as state in my post above. I think as in most therapies for these diseases it will have obvious benefits for some and not for others.
  13. Our neurologist suggested it more for behavioral stuff. She works with a lor of kids in the autism world where I think it is also used and she said it also is used for people with issues like PANDAS/Lyme. (Aidan has developmental delays and some people assume he is autistic) I may be wrong but I thought there was an Anti-inflammatory property to it. I know it also it somtimes used for people with Chrohns and MS (but isn't some of this possibly misdagnosed Lyme?) When I asked our LLMD about using it she was all for it because benifit to the immune system. We decided that we would try it. Our neuro prescribed 4 mg capsules (Aidan is 50 lbs) and the Dr did not specify when to take them. After I researched it I decided to give at bedtime and I decided to start low and move up so i split the capsule first into four parts for a few days and then into 2 parts for a few days and then gave the full capsule. We did not have a huge problem with sleep but they say that is the main side effect but it usually goes away after a few days. We had just started supplementing with GABA at bedtime a week or two before that which I think had helped with his sleep so I think that we were lucky with the timing of that! Anyway, we started LDN about 2 months ago when we were at a low point behaviorally - I think due to herxing. He was aggressive at school and constantly agitated - hyper, throwing things, running off at school etc etc. Adding LDN did seem to help with these behaviors and they toned things done a lot making things managable. As a side note we went on to introduce low dose abilify and we started with only 1 mg which isn't even treatment dose and we have seen further improvement. Will go up to 2 mg today and stay there for a month. The LDN seems like a more natural solution with less side effects but did not go far enough for us. (I am a little afraid of the abilify but hopefully it will get us through the treatment for this disease)
  14. We also haved had some seizure like experience with Aidan - a couple of different kinds. The first ones that we noticed was when he was 1.5 years old but were more movement related - now a couple different types that seem like true seizures. Nothing that shows on EEG. Perhaps there was more going on when he was younger also but we just weren't watching. It is common for Lyme patients to have non-epileptic seizure activitiy per our LLMD and I would think that it also could be a symptom of PANDAS. We think that Aidan has congenital Lyme and Bartonella (but also had issues with strep through the years.) I don't really like to bring Lyme up on this board so much because it causes waves but doesn't your other PANDAS child have some evidence of Lyme? Could it be congenital for both? Symptoms are far more important in Lyme than testing so I would consider getting her to a LLMD as soon as you can. I sure wish we had discovered either PANDAS or Lyme when Aidan was littler - perhaps he would have had more of a chance to develop normally. But we will not give up.
  15. Has the LLMD seen all these test results? I think Aidan's vitamin D is around the same level as your DD and our LLMD is having us give vitamin D3 drops to supplement. You can buy these over the counter. Just recently Aidan had low T3 and T4 was low end of normal. Not exactly your situation but our LLMD said that this is common in Lyme patients- wondered if that applied to any thyroid inbalance such as your high TSH level. I also wonder if this was equally common in PANDAS. Our LLMD suggested low dose armour thyroid which is a prescription.
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