lmkmip67
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Posts posted by lmkmip67
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Oops sorry. I deleted a few.
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The Western Blot came back with a positive on band 31 for IGG results and IND on band 41 for IGM and IGG. I guess that means nothing though. So confused and actually kind of mad I spent $1400 that day for really nothing. NOt saying I wish him to have lyme. But I sure would like answers and to find a way to help him.
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I never heard anything from them for 5 weeks now on Ian's blood work. I finally called today and they said everything was negative so he would only have contacted me if the blood work was positive. I am waiting for them to fax the results to me so I can see them. I was not convinced of anything really, but after 3 years of not getting better with antibiotics, and IVIGs, Dr. B suggested seeing Dr. J. They want Ian to come for a followup in Sept....but then why? I want to cry. He is flaring at the moment, tics, OCD, mood, etc. The augmentin he has been on does seem to keep the tics down for the most part except when he flares. If he is off of it, they always return. So Ian has been tested for everything with Dr. B and now Dr. J, and we get no answers at all. Ian will be 10 this year and he still struggles 3 years later. Maybe this isn't PANDAS? But the tics started after a strep infection....I am at such a loss. What is next? And why should I even keep the follow up with Dr; J if there seems to be no reason and they weren't even going to contact me? I apologize for being a little over the edge. I was hopeful this would lead us in a good direction. But nope, another road block in helping my kid. So, no Lyme then....now what? PANDAS treatment seems to not help except keeping the tics down. And you can't tell me he is at 100%, he is not. We see Dr. B in a couple of weeks so I will have a lot to discuss with him. I literally don't know what to do now....
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We had Ian's appointment about a month ago now, and I have heard nothing about Ian's blood work or anything. They said takes about 3 weeks, but I expected hear something by now? Should I call after the holiday weekend?
Lisa
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Very interesting. Well, we will see what the tests reveal. In some ways I hope this gives us some answers, because so far things have not worked as we would have hoped.
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My goodness, what a sweet man. What a character, too. In a good way. He really is special. He looked over Ian's igenex tests and said that he indeed has been exposed to Lyme, as he is making antibodies. He didn't DECLARE Lyme, since the test was about 2 years ago, but wanted to redo the Western Blot and some other tests. He seemed to hint at bartonella, even though Ian didn't present with any stretch marks that we can recall. At this point Ian is staying on augmentin per Dr. B. And wait for test results. Funny, Dr. B called regarding some other patient while we were there. Dr. J said Ian was there and Dr. B knew who that was right away and told him to "fix him." lol So as of now we don't KNOW if it is Lyme, but we will find out what Dr. J thinks soon. All in all the visit went very well. Ian loved the office, he got forbidden treats of Gatorade and oreos, though the antique soccer video game was awesome, and really attached to Dr. J. I admit I hope this gives us some answers. It has been a long 3 years, with really no answers....
Lisa
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Does he have wifi there? I just ask because Ian gets very fidgety while waiting, and with the 2 hour drive I will make sure to download a couple of movies on the iPad if not. At Dr. B's he streams netflix.
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Thanks so much, Kara. Those are helpful bits of info! I didn't realize the appointment was so long, so that is very helpful to know. We will be prepared.
Lisa
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After 3 years of PANDAS with DR. B we are trying out Dr. J. We go Tuesday. What can I expect? I have our test results and all. Just curious on how the appointment may go.....
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Hoping the best for you!!! We are still waiting to see Dr. J.
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Thanks so much, that is a great idea!
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THanks! I think you are right, it will be a few things that will end up helping Ian, too. But my current hope is to get the major things under control that bother him like the OCD and tics, etc. Then we can work on more of the other stuff like the hair-trigger anger etc. We deal with that, too. I know there is PANDAS in the mix because he got strep and developed tics right after. But there is more to the story, for sure.
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I won't go into the whole story, 9 IVIGs, 2.5 years of antibiotics and no improvement in PANDAS. We are sitting here waiting for an appointment with Dr. J in CT, but that isn't for another two months. WE just did a steroid burst through DR. B to try and calm things down again, but it didn't help one bit. Ian is on prozac and it does help the OCD a bit. But he still has some, and his tics are back basically full time now. He seems to only be dealing with a vocal tic for the most part now, but it will not go away with the steroid burst, or motrin this time. So while I am feeling sad and discouraged in some ways, I am still trying to remain hopeful about the appointment with Dr. J. Ian's Igenex test was suspect so that is the route we are taking. My question is for those that started treating PANDAS, but moved on to Lyme, were the symptoms the same? OCD, tics, ADHD type, mood issues, impulsiveness, etc? Or are there symptoms specific to lyme that are not like PANDAS? We have tested for other co-infections and can not find anything thing else that seems to be setting this off.
THanks,
Lisa
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I can understand the struggles this all causes. We have an appointment to see Dr. J in April. I will admit this causes me concern about being able to receive ongoing treatment for my son if we do indeed find Lyme is an issue for us. I wish I could help him, but am putting all funds I can towards the fee for the initial visit at this time. I hope he is able to bounce back. I have not met him yet, but many speak very highly of him, and report great results for their children.
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I would love to know, too. I am in central MA but can never make it to the Salem one.
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I am positive we are not dealing with detox. His dad has been sick this past week, and he was at a hockey tournament this past weekend. He was likely exposed to a ton of stuff. I did double the nightime dose of antibiotics last night and dosed with motrin. I gave the regular 500 mg this morning and more motrin. So far the tics seem to have went way down this morning. THe point we are at is realizing that something is hindering the PANDAS treatment. And we are looking towards lyme. the results are iffy enough where Dr. B feels this is the best next step so we are waiting on our appointment with Dr. J in CT. SO what I am looking for short term help for him until we can check in with Dr. B. I will try to call today and see if I can get through. I will also write to the nurses on Monday. I was just wondering if anyone ever upped the dose short term to get through a flair. I do not feel the PANDAS will improve until we fish out the other causes, such as Lyme. SO damage control is our goal this weekend.
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It used to. And I am trying it, but now he is asleep, so hard to tell. The tics have been back this week, but tonight they really got bad. I will give Motrin all day tomorrow and see if it does anything. IT has in the past....but not as much this time...
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Sorry, that is the total for the day, 500 twice a day. I am just a bit distracted as he is flaring really badly tonight.
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We see Dr. B in about a week, but it being the weekend, I am wondering if we can up his dose of augmentin. WE are working on seeing the LLMD but the appointment isn't for a few weeks. We have done IVIG etc. But this particular week he is flaring with tics and it is really bothering him. He is 9, 62 pounds and is on 1000mg of augmentin. I am wondering, can we up the dose at all? I will contact the office on Monday, but he is pretty miserable. Could we go to 1500 with his size and weight?
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I was just sitting here trying to figure out where to put my stresses on the internet, to vent, to feel some relief. Feeling like everyone is so tired of hearing about it all. I didn't even know what to say or how to word it. This describes it perfectly. Thank you.
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Ian has been on prozac for about a year. At first it helped the OCD quite a bit, just leaving lingering pieces. Since we started it though, it seems Ian has been having more issues with hyper activity and attention issues. He has always had some issues with that, but it has gotten worse. (quick history, we did lots of IVIGs and are now on our way to seeing Dr. J in a few months, maybe another lyme doc locally first). Ian is 9, so still young. But thinking about it we decided to try to take him back down to the next low dose of prozac (5mg) to see if the hyperness went down any. In doing this it was hard to tell if it did improve or not. I think it may have a little. But even on 5, I think I noticed it when he first started. the issue is when we went up and down in the dosage his emotions went haywire. I tried taking the dose down a bit ago last week but put it back up to 10mg. I realize I shoudln't go up and down, and it was just a few days, but he is emotionally a mess right now. I do notice it when I went up and down in the dose over the course of a few days. THe OCD seems to have been helped, but instead we have more issues with focus and hyperness (his therapist said it cold be ADHD, but that even by 9 the hyperness seems to start to calm down in kids with true ADHD) His has gotten worse. I really feel like I want to take him off of it. But I worry about the OCD coming back more so. I am also just wondering if this sounds like anything other PANDAS kids may have dealt with on SSRIs. as I know they can react a bit different than other kids. If I were to taper him down on it, how slow should I go? I am thinking 5 mg at a time is TOO much, even though he is only one 10.....I am going to call his neurologist (who is wonderful) and get in to see him in the next couple of weeks, too. He is not super pro drugs, so that is why I love him. He is very conservative with medications and kids. He doesn't treat PANDAS, but he has been a great addition to the team and doesn't poo poo it at all. I would hate to see the OCD come back so badly, but something changed when he has been on this, too. And I am not sure if it is for the better. ANy thoughts? We have looked at co-infections and Lyme is next. I am really concerned more about the side effects and tapering down on an SSRI right now. He is pretty highly functioning even with the OCD, goes to school, etc.
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I think I need to turn off the news and computer because this is causing me to really worry about my own son. He isn't like so many describe in the comments of the mother's article floating around out there. He isn't violent. He has tics, OCD, and does have tantrums. But I am still scared of what the future could bring. I am sure it is my own fears speaking. But I still worry....I am not sure how to stop that worry....We are exploring all we can, next is seeing a lyme specialist. But how does one stop the worry?
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It is so scary. I was almost paralyzed by fear yesterday at letting my mind run wild with me. Ian is only 9, and he can be such a sweet, huggy kid. He is said to be a wonderful friend in school. But with us he can get very argumentative and have outbursts. He is still little. But I worry. I am trying to not let fear get away with me and focus on healing. It has prompted me to make our appointment with Dr. J to explore Lyme. Like all of you, I will never stop trying to help my kid. We need to keep supporting each other and not give up hope, and keep praying. It is hard to do though when you get tired from worry all of the time and just want one week of peace. But we carry on.
Lisa
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Thank you! That worked! We have our appointment and are on the cancellation list. I feel good about getting this moving.
Oh great, do you need Dr. B too?
Nope, we see Dr. B and he suggested we finally talk to Dr. J. So we are good. Thanks for asking!
Feeling very frustrated, Dr. J appointment seemed for nothing..
in PANS / PANDAS (Lyme included)
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We have tried that combo before. But it may be time to try it again. I am almost thinking of trying the homeopathy route too. I am in the process of cycling him off of prozac. It seemed to help with the OCD a little, but not totally. He has been on that a year.