MPatti
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Posts posted by MPatti
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Dasu - thanks so much for your response. Yes, we switched to Dr. B because of the Lyme. According to Dr. B the combination of antibiotics he is on is supposed to take care of the Lyme. I have been wondering if it is allergy-related. I haven't tried any allergy meds yet but will definitely discuss with Dr. B.
Thanks again!
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My son has been on treatment dose antibiotics for a year (we used to see Dr. L and now see Dr. B. He tested positive for Lyme and Anaplasma with Igenex. His main symptom is a motor tic (his other symptoms were mild and resolved fairly quickly once we started antibiotics). He had been tic-free since October 2014 but it started back up a week ago (I cannot figure out a trigger). I have added Motrin and it does seem to help (although the tic is still there).
Have any of your children flared while on treatment dose antibiotics? If so, how did you handle it or did you just ride it out?
Thanks for any advice - it is much appreciated!
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I think you are talking about Florastor
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My son (age 5) also tested positive for Lyme (IGG) and Anaplasma - he is on Bactrim, Augmentin and Azithromycin and is doing well.
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Did you son have any symptoms other than the tics? My son's primary symptom has always been a motor tic. We got it to signifiicantly decrease and then basically resolve for a period of time, but now it is back. He has been on combo abx since May and we added a third abx at the end of August - the tic is still there.
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Has anyone seen Tara Fox at the Jemsek clinic in DC? If so, would you mind sending me a PM - I have a couple questions about their treatment protocol. Thanks!
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No taper. 6 days at 45 mg per day. I still haven't given it to him - I am so torn about what to do. Anyone else ever prescribed a similar dose without a taper?
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Thanks to everyone for their responses! I hope this flare passes quickly. I picked up the steroid burst from the pharmacy today - 45 mg. for 6 days. He is only 60 lbs. Doesn't that seem like a really large dose? I still have not decided if I will give it to him - I don't want to make him worse, but I would love to make him better - I need a crystal ball!
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Thanks for replying! He has been on Bactrim/Azith since May 2. We added Omnicef on Aug. 22 b/c he needed to get 2 teeth extracted and Dr. B thought the Omnicef would help prevent any strep-type infection from the extractions. We saw Dr. B on Sept. 13 and he took him off the Omnicef and replaced it with Augmentin b/c he diagnosed him with a sinus infection. I spoke to Dr. B on the phone today and he has suggested a short round of steroids (6 days) to help clear up the sinus infection. It makes me nervous given what I have read about steroids/lyme. As much as I worry about my son and am so sad to see that his tic has increased he has absolutely no other symptoms. If it wasn't for the tic, he would be 100%.
Dr. B ran bloodwork and he went over the results with me today. Blood test for candida was within normal range (although I understand that a blood test for this isn't completely reliable).
Any advice would be great!!
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My son has been on treatment dose abx since Jan. 2014. We were able to catch this quickly (started abx 3 weeks after onset) but with the exception of a few weeks has never been 100% symptom-free. Saw great improvement once we started combo abx (tested positive for Lyme and Anaplasma through Igenex). His main symptom has always been a motor tic. Now it is back to a level I haven't seen in months. He is currently on 3 abx - and he is still ticcing. I know it isn't a herx. I have done a lot of searching in these forums and have found many posts about flares while on prophylactic abx but haven't coming across posts about flares while on treatment dose. Have many of your children experienced flares while on treatment dose? Any insight anyone could provide would be greatly appreciated!!
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My son had the Igenex co-infection panel done in June - he was taking 2 antibiotics when these tests were done. Dr. B said it was fine to run the tests while on antibiotics.
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Hi --
I am hoping someone can help me. I just noticed my son's tongue is black. About a week ago I noticed it looked a little yellow, but I assumed it was something he ate and I didn't give it another thought. Now it is definitely black. He is been on a high dose antibiotic since the end of January. Is this the cause?
Has anyone dealt with this before? Is there anything I should be doing? I give him a probiotic daily.
Thanks for any help/advice anyone can offer!
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Thanks to everyone who responded - I really appreciate it and feel a bit better knowing that my feelings are "normal."
I was diagnosed with Factor V Leiden (heterozygous) and MTHFR (heterozygous) and had to take baby aspirin and Lovenox when I was pregnant. I was told by my OB that I did not need any medication when I wasn't pregnant. I have not had my son tested - I mentioned it at his doctor appointments but was told it was not relevant to PANDAS. I will mention it to Dr. B when we see him this week
I would be curious to know how many of us have a clotting disorder.
Thanks again for all the encouraging responses!
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First, let me say that I know I am lucky. My son (age 5) was diagnosed with PANDAS less than 3 weeks after onset of symptoms. He is being treated by Dr. L and we are seeing Dr. B for a consultation next week. He has come a long way, but still is not completely symptom-free. I have spent so much time on this forum reading others’ experiences and stories and my heart breaks for all of our children (and for us parents too). This forum has been the only thing that has kept me sane through all of this.
But today I am really mad – I hate PANDAS so much. I hate that I watch every move my son makes and I live in fear that a new symptom is going to appear. Last week when I was taking my son to preschool he told me he was going to miss me while he was in school – I immediately felt panic – this wasn’t like him, he normally does not say he is going to miss me, he just jumps out of the car excited to be at school. He ended up being totally fine about going to school – he jumped out of the car happy and went on his way to his class. I ended up being mad – four months ago I would have thought him telling me that he was going to miss me was so sweet. Now instead of being touched by his sweet words, I felt fear. Today I yelled at him because he didn’t want to eat his food (his applesauce “didn’t taste right” and his turkey was “slimy”). The rational side of my brain knows that I put his Florastor in his applesauce for the first time and didn’t stir it well enough because I was trying to sneak it in without him noticing and I also know that getting him to eat turkey has always been hit or miss. But, my immediate reaction was wondering whether he is having issues with food now and I over-reacted when he wouldn't eat his food.
I lost two babies before I had my son (turns out I have a blood clotting disorder). My entire pregnancy with my son (and also when I was pregnant with my daughter) I lived in fear that I was going to lose them. I couldn’t enjoy my pregnancies. Now, today, I feel like I am being robbed of letting my kids be kids. Kids can have quirks, they can be in a good mood or a bad mood, they can decide they dislike the food they loved yesterday, and they can miss their mom when they go to preschool. I know not everything is a PANDAS symptom. I just live in fear that I am again going to wake up one morning and my child will not be the same child that I put to bed.
Sorry for the long and depressing post – I just needed to vent to those who would understand what I am trying to say. I am sure tomorrow I will have a better outlook – today has just been a rough day.
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My son (age 5) is a patient of Dr. L. He has been a patient since the end of January of this year. He, too, began exhibiting PANDAS symptoms the day after the flu mist vaccine. He is currently on clindamycin and prednisone (he has been on an antibiotic since January 29). He is doing well. All symptoms are gone except a motor tic (it has improved, but is definitely still there).
We really like Dr. L a lot and I have had a great experience with her staff. If you have particular questions, or want to discuss more, please feel free to send me a message and I would be happy to respond.
Meredith
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It is my understanding that Stony Brook Labs does not test for co-infections. I have been told that can only be done through Igenix.
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powpow and dasu - that is great - I look forward to meeting both of you! I assume weekends work best? We could meet for lunch somewhere in Centreville (but am totally open to suggestions!).
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Hi --
After realizing on a different thread that there are at least a couple of us who live in Northern Virginia, we began discussing the possibility of us Northern Virginia parents getting together sometime in the near future.
Is anyone interested?
Meredith
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I would love to meet up! I will start a new post to see if anyone else is interested in meeting.
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I should also add that Dr. L is hoping to pull him off the clindamycin when we go back on April 15 and put him on a prophylactic antibiotic (not sure which one).
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No, he is on a full dose, not a prophylactic dose. As for the Florastor - I give him 2 packets of the Florastor kids each day (I mix it in water or milk).
Have you found anything that helps with motor tics that you can recommend I try for my son?
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My husband and I are now convinced that my son's sinuses were chronically infected.
Dr. L ordered a bunch of different blood work - a couple of things came back out of the normal range but she was not concerned (for example, vitamin d was a bit low so she said to give him a vitamin d supplement, ana screen was positive, anti-nuclear ab titer was 1:320, C4, serum was a bit low, ceruloplasmin a bit low). I am in the process of trying to research these things to figure it out. In addition, she had him tested for lyme through stony brook lab. He tested negative, but did test positive for band 41. She was not concerned and does not believe he needs any testing for co-infections (stony brook does not test for lyme co-infections, would have to be done through Igenex).
We have not done any other treatments but the ones I described in my other post. I give him Florastor 2 times each day and a multi-vitamin.
With the exception of the motor tic being a constant reminder to my husband and me that something is wrong, my son is doing really well He is happy, goes to preschool without any issue, plays (and fights) with his sister all day. It is hard because he is 5 - as I told Dr. L, I have already forgotten what he was like before the pandas diagnosis. Now, when he cries over something or is acting a bit hyper it is hard to determine if it is a pandas symptom or him being a 5 year old boy.
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Nela -
His strep screen was positive back when he was tested at the end of January. If I understood Dr. L correctly, she believes that staph can sometimes be present with strep and the augmentin will take care of the strep but won't do anything for staph - that is why she put him in clindamycin. Interestingly, prior to pandas, my son has always suffered from bloody noses, nasal congestion, and awful breath. I repeatedly brought this to the pediatrician's attention as well as his ENT (son had t/a when he was 2 because of sleep apnea). My concerns were always brushed off. The augmentin cleared up all of his nasal problems - maybe he had strep in his sinuses??
Meredith
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Nela --
My 5-year old son's main symptom is a motor tic - began the day after receiving vaccines and the flu mist. He was diagnosed by Dr. L and put on antibiotics a little shy of 3 weeks after motor tic began. During that time he started exhibiting a few other symptoms (crying over things he would not normally cry over, saying he is scared of things he normally would not be afraid of, restless legs, and wet the bed 2 nights in a row). However, all of these symptoms were mild. Dr. L put him on augmentin and a steroid taper - all symptoms except the motor tic improved or resolved. Motor tic did not get worse but did not get better. She then put him on clindamycin for 2 weeks - motor tic improved slightly for one week and then went back to how it had been. We just saw Dr. L again last week - she kept him on clindamycin and we are doing another steroid taper (stronger dose this time). I am keeping my fingers crossed that it works!
Meredith
please positive vibes
in PANS / PANDAS (Lyme included)
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I hope all goes well! My son also had to have 2 supernumerary teeth removed. Searching the forum archives I found a number of other children that had this as well. Probably a strange coincidence, but I find it interesting!