NVAmom Posted November 11, 2009 Report Share Posted November 11, 2009 I have been reading the posts in this forum since Aug and first want to say how thankfuk I am for this site! In the darkest nights I would read some of the posts and it would give me hope. I am posting for the first time to get some of your thoughts. I will try to give a brief background. My son has always been a quite, shy and reserved child with OCD tendencies. He began clearing his throat constantly when he ws 2. I thought it was because he had been taking an allergey medicine that was drying him out too much. Stopped the medicine but the throat clearing continued. He had chronic croup until age 7, reflux requiring treatment until age 10, frequent pink eye, and chronic strep. He was diagnosed with Tourette's (however Dr Latimer thinks it was the first episode of PANDAS) in first grade. At that time he also had severe speration anxiety. Getting him to school was a challenge each day. His OCD increased and he started having outbursts of anger. He is now in 5th grade and over the years the vocal tic (and new ones), OCD, anger and seperation anxiety come and go in intensity. Last spring (April 2009) he had strep throat and a sinus infection. Since then our lives have been turned upside down. He has intense anger outursts, irrational thoughts, new tics, difficulty concentrating, fine and gross motor changes, obsessess about germs the list goes on and on. When we would go to the pediatrician she kept recommending psych.... so we tried that. I came across PANDAS info in Aug. The pediatrician did sterp titers. Antistreptolysin O Ab was 463. I started looking for a dr knowledgable about PANDAS. He had another sinus infection 9/23 and started Augmentin500 mg 2x/day. There was also a huge spike in anger outbursts at this time so the psych increased the Abilify (7.5mg) and Clomipramine (75mg). He started the antibiotics and increase in psych meds within a day of each other. After a week I noticed an improvment. Since I thought it might be the antibiotics I asked the pediatician to continue the antibiotic until our appointment with Dr Latimer. We saw Dr Lattimer 10/22 and she increased the Augmnentin dose to 875mg 2x/day. He has been happy, relaxed and playing with kids in the neighborhood more than he has in a long time. We had a follow up with Dr Lattimer 11/6. She recommended starting to wean him off the clomipramine and staying with the Augmentin. He has been on the lower dose of clomipramine for 4 days. However, now I am starting to see the anger outbursts and irrational thoughts slowly increase. I am not sure if he could be getting sick, his body has adjusted to the antibiotics, or the small reduction in clomipramine could be the problem (even though it is for OCD not mood). Dr Latimer did tell us there would be set backs when he gets sick(I did not expect it this quickly) and we could look at a course of steroids when it happened. Has any one elses experienced this after being on the anitbiotics for about a month? I am use to him getting sick with no other symptoms except changes in behavior but that was always an indicator of strep.....but he is already on the antibiotics. Not sure if it is too early to contact Dr Latimer. Thank you for your help! Link to comment Share on other sites More sharing options...
Kayanne Posted November 11, 2009 Report Share Posted November 11, 2009 Welcome to the forum...although I am sorry that you need to be here. I wouldn't hesitate to email Dr. Latimer...maybe the antibiotics need more time before you back up on the clomipramine....sometimes just the act of decreasing a psych med can create withdrawl symptoms...or he could be getting sick. My husband always had a "foggy head" dry mouth, sore throat and irritability while adjusting to psych med changes...lasting from a few days to weeks. Can you clarify, does your son not ususally have an uptick in PANDAS behaviors with viral issues--just strep? Link to comment Share on other sites More sharing options...
faith Posted November 11, 2009 Report Share Posted November 11, 2009 NVMmom, could I ask how much your child weighs? is he big for his age? wondering why Dr. L. increase the Augmenin to 875 mgs. 2x day. So when you began that, you felt he was definitely getting better, symptoms were less? was the follow up in person or phone? Also, did she not want to to the prednisone now because he was on other meds right now? Faith Link to comment Share on other sites More sharing options...
NVAmom Posted November 11, 2009 Author Report Share Posted November 11, 2009 NVMmom,could I ask how much your child weighs? is he big for his age? wondering why Dr. L. increase the Augmenin to 875 mgs. 2x day. So when you began that, you felt he was definitely getting better, symptoms were less? was the follow up in person or phone? Also, did she not want to to the prednisone now because he was on other meds right now? Faith Thank you for your respnse. He weighs about 90lbs (11 years old). He seems average compared to the size of his classmates even though he is a year older than most of them. I think she did not start the steroid because when we went to see her for the follow up everything was great. The chorea and attention problems were still pretty evident but I think compared to where he had been she was seeing great progress on just the antibiotic. I definitely saw a huge improvement in his behavior (he was happy, joking, playful) when we started the increased doseage of the antibiotic. As for why she increased the antibiotic to that does....not positive but I remember her commenting that his CAM score was on the high side....not sure if that would be a reason to have a high dose or not. I feel a little foolish now for not asking that question. Link to comment Share on other sites More sharing options...
EAMom Posted November 11, 2009 Report Share Posted November 11, 2009 Faith....I suspect that Dr. Latimer is starting to get more aggressive with abs in general (a la Saving Sammy). Perhaps she is realizing there is little downside (and a big potential for an upside) with the higher doses/stronger abs. NVAmom...have you tried adding on Advil (Ibuprofin). Lots of parents find it to help with symptoms. Dose is by weight...I think you can give a 90 pounder 400mg 3x daily (the same dose you'd give for the flu) for a few days. Long term, you might want to give less. Be sure to give it with food and you'll need to stop it if you start prednisone. I agree with Kayanne...some psych. drugs cause nasty withdrawal symptoms if you don't back off slowly enough, so that is one possibility for the beh change. I would also get throat cultures on other family members to make sure nobody is a strep carrier. Link to comment Share on other sites More sharing options...
NVAmom Posted November 12, 2009 Author Report Share Posted November 12, 2009 Welcome to the forum...although I am sorry that you need to be here. I wouldn't hesitate to email Dr. Latimer...maybe the antibiotics need more time before you back up on the clomipramine....sometimes just the act of decreasing a psych med can create withdrawl symptoms...or he could be getting sick. My husband always had a "foggy head" dry mouth, sore throat and irritability while adjusting to psych med changes...lasting from a few days to weeks. Can you clarify, does your son not ususally have an uptick in PANDAS behaviors with viral issues--just strep? I don't think he has such a drastic uptick in PANDA behaviors with a virus but it has actually been a while since he has had a virus. Thanks for your response! Link to comment Share on other sites More sharing options...
NVAmom Posted November 12, 2009 Author Report Share Posted November 12, 2009 Faith....I suspect that Dr. Latimer is starting to get more aggressive with abs in general (a la Saving Sammy). Perhaps she is realizing there is little downside (and a big potential for an upside) with the higher doses/stronger abs. NVAmom...have you tried adding on Advil (Ibuprofin). Lots of parents find it to help with symptoms. Dose is by weight...I think you can give a 90 pounder 400mg 3x daily (the same dose you'd give for the flu) for a few days. Long term, you might want to give less. Be sure to give it with food and you'll need to stop it if you start prednisone. I agree with Kayanne...some psych. drugs cause nasty withdrawal symptoms if you don't back off slowly enough, so that is one possibility for the beh change. I would also get throat cultures on other family members to make sure nobody is a strep carrier. Thanks for the reply. Does the Advil work by reducing swelling in the basal ganglia? Link to comment Share on other sites More sharing options...
faith Posted November 12, 2009 Report Share Posted November 12, 2009 NVA, sorry to ask, but how do you know its not the decrease in the tenex that is causing downslide? maybe the first days of weaning might kick up some symptoms, so I suggest going real slow on the weaning. Faith Link to comment Share on other sites More sharing options...
Alex Posted November 13, 2009 Report Share Posted November 13, 2009 In 'Saving Sammy' the augmentin type and dose had to be just right or it did not work. She had her son on 2000mg of Augmentin every day, and I'm pretty sure it was the extended release kind XR. At a lower dose the treatment was not as effective and her son had lots of PANDAS symptoms. I don't know what Sammy's weight was but he was around 13 years old so probably over 100lbs. If I was going to go the augmentin route, and we hope to if we can verify that my son is not penecillin allergic, I plan to do pretty much exactly what worked for Sammy because anything less in was not effective. Link to comment Share on other sites More sharing options...
EAMom Posted November 13, 2009 Report Share Posted November 13, 2009 We're not sure exactly how the advil works...we suspect it decreases imflammation in the brain/basal ganglia. Or maybe it helps close the blood brain barrier somehow?? It's not a cure, but many find it seems to help with symptoms. When our dd's pandas was really bad (spring 08) we also tried Aleve (naproxen) which didn't have the same effect. Link to comment Share on other sites More sharing options...
NVAmom Posted November 13, 2009 Author Report Share Posted November 13, 2009 We're not sure exactly how the advil works...we suspect it decreases imflammation in the brain/basal ganglia. Or maybe it helps close the blood brain barrier somehow?? It's not a cure, but many find it seems to help with symptoms. When our dd's pandas was really bad (spring 08) we also tried Aleve (naproxen) which didn't have the same effect. THANK YOU! THANK YOU!!!! Last night he was having a very difficult evening and I gave him an Advil (not easy to persuade an 11 year old to do in the middle of an anger outburst) within an hour he was much calmer....and wanting to be around the rest of the family . Usually when he has an evening like last night he wants to be left alone. I am not sure it was the Advil but will definitely try it again. Link to comment Share on other sites More sharing options...
T_Mom Posted November 13, 2009 Report Share Posted November 13, 2009 NVAMom--Welcome and I am sorry you have had to join us here-- My only encouragement would be to look at the weekly-TRENDS, rather than the day to day. Give it a month, or two as you hold a steady course. There have been ups and downs for all these kids when coming out of an exacerbation and during healing. I do believe in Dr. K's idea of the "turning back the pages" -- some type of replaying, repeating, of symptoms going by as the mind is healing--in our experience this has happened more than once. All the best-- Link to comment Share on other sites More sharing options...
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