Darla

I just don't know what to think sometimes. The doctor gave us azith. He Had a fever last Monday went to the pedi on tues (rapid came back neg but they gave us prescrip just in case) I waited until wenesday to get it filled. I thought since it wasn't strep I try not to overload with antibiotics because I hear kids can get immune to them. This is before I came across all of this info. So on wenesday he was much worse got it filled and started him on it. That night and the next he had fits of rage and anxiety. I felt really bad. This is where he attacked me and swore at me and his father (which hes never done). He was taking 200mg of azith. But the last two days of his four day treatment which ended yesterday, I noticed him itching and his face swelling a bit. I didn't want to not finish the dose as I've heard it can cause the strep to become immune to antibiotics or something and it was Sunday so I said he just has one more and it's not too bad of a reaction, i thought it was more important to finish the dose. He is also allergic to amox. He got bad hives from it about a year ago. Besides his wrist twisting he does a shoulder popping thing. He sort of lifts his bent arm out then swings it up. I've witnessed his shoulder actually popping. He does it until it pops. He feels the urge to do this and wants to crack something I think. His anxiety level was really high and he was nervous to go back to school. He said hes nervous hes going to get a lot of work from his teacher. What will I do if hes allergic to anitbitics?? I wonder if maybe he has a Candida issue. That can cause anxiety and irritability and I feel like his breath has a smell to it. Has anyone noticed their childrens breath being a little off?

Okay, since the damage to the basil ganglia seems perminant. I started researching to see if there was anything that could help weather it was supplements acupuncture or whatever. I found a small website on Rehabilitative exercise. I bet it would be difficult to get my eight year old son to do it, but im willing to try. Im curious if anyone else has come across anything to help the basil ganglia????? Heres an excerpt: Many brain researchers are currently examining the link between movement and learning. “Exercise, besides shaping up bones, muscles, heart and lungs also strengthens the basal ganglia, cerebellum and corpus collosum of the brain. Aerobic exercise increases the supply of blood to the brain” (Hannaford, 1995, p. 112). Inner healing potential can be tapped by directing our breathing in core stabilizing exercise and even utilizing the imagination in order to deepen the exercise. When doctors can’t supply results, we must come to have confidence in tapping into our own healing potential. This inner reliance is what is needed in the field of rehabilitation. As mentioned earlier, the simple processes of movement and exercise may often produce the most profound results (Hannaford, 1995, p. 112). Pilates Rehabilitative Exercise The Pilates Method of exercise can be used to advance the process of rehabilitation. Many don’t realize it, but Joseph Pilates grew up a sickly child suffering from rickets, asthma and rheumatic fever. He began to study anatomy and various forms of exercise to combat his sicknesses and improve his health and physique. As a nurse in World War I. he used his exercise to help wounded soldiers rehabilitate post-injury. Today, depending on the teacher’s mode of practice, the exercise can be used to restore vitality and develop strength and agility of mind and body. The aim of Pilates is to achieve a state of balance in the mind and the body. Many athletes know how to achieve cardiac exhilaration - just go out on the track, run a mile and let off some steam, but how many know how to use exercise to bring a balance and state of rest to the neuromuscular system. Pilates emphasizes breathing, lengthening the spine, freeing up the joints, alignment and strengthening the core. The theory that the Pilates Method of exercise is based on acknowledges that a person that combines the activities of stretching and strengthening in an appropriate manner, develops an internal balance that leads toward a state of equilibrium. In Pilates mat classes, students learn to practice the exercises at home to facilitate rehabilitation, to serve in a preventative capacity and to burn off the stress of strainful times. The students’ incentive for learning is that they usually feel better after practicing the exercises than when they began Heidi Lerner’s style of teaching can be compared to the Montessori Method. In approaching gains of new knowledge Dr. Maria Montessori would begin with what the child is capable of doing. She would gradually introduce things the child couldn’t do on a very simple level. At this point, the teacher follows the student’s lead in order to facilitate the learning process (Lerner, 1997). It is in this method of approach that Ms. Lerner teaches Pilates. She starts where clients are at and teaches in the A B C method; in taking baby steps, Heidi believes that almost everyone can benefit from Pilates. Her technique is aptly called “Gentle Pilates”; with this approach, Ms. Lerner is confident in working with senior citizens and people with disabilities.

also, side note. He is allergic to amox (broke out in hives) Now on azith and has been itching today. He has one day left of treatment (four day treatment) so Im going to ride it out. He looks flushed again like when he had fever in begining of week, but no temp. His eyes are bloodshot again too when they had cleared up perfectly today. They had been covered in red throughout the week.

Thanks for the info. Yeah i'm definately not there yet. The brain damage part is what concerns me most. It sets a panic in me that makes me want to take drastic measures to prevent it happening more. Do you recall what point you had to go beyond before it the brain cannot completly heal? I feel because he is eight years old and I've noticed his tics and emotional behavior the last few years that I wasted all that time. I was told by his pedi that he would "grow out of his tics" But then came the ocd and as I researched I felt his tics really seemed to be part of the ocd. They were not jerky movements but wrist twisting that I could tell he was choosing to perform. So when his ocd became worse these past few months and then he had strep this week, and he had fits of fury all week I thought oh my god, is this PANDAS? I had already contacted his pedi to set up a neurology appt and he is due to see his pediatrician on the 14th (which is is planning on testing his titers). Another thought popped in my mind too. In the begining of the school year his teacher mentioned him having to go to the bathroom a lot, which he does at home. He even notices it. Although to be honest I haven't seen much of that the past week or so. I dunno, I want to stop what ever is causing this and make his brain heal. Do you know of anything - supplements or anything that can help heal the area of the brain that has been damaged? IF this is even PANDAS??

How long after the diagnosis of PANDAS are you able to get the IVIG treatment discussion going with your doctor? My son is in the begining stages of getting a diagnosis for PANDAS and Im just thinking ahead here wondering what steps or things I should prepare for in case he ends up having it. I hear that doctors only recommend it for severly ill paitents. I guess I don't know how you decide where that line is. And im hearing not all insurance companies cover it. We have Harvard Pilgrim not sure how good they are and if it's not covered how much will it cost? Are the number of treatments different for each child? He's eight years old and i've read the earlier you catch it the better the ivig will work. What can be done to correct the damage to the basil ganglia after you get the PANDAS under control?

Well, the first test came back negative for strep but the second one came back positve. We had already started him on his antibiotics ( Azith ). I spoke to his peditrician yesterday and we have a physical appointment on the 14th. Which was good the pedi said cuz it will be about two weeks from his strep and he can test his antibodies. I was going through his medical record and there was a time that he had a really bad fever with joint pain that lasted a week but no strep. About three years later which was 2006 he had a heart murmer checked out which came back fine they told us. I am wondering if he might have had rhumetic fever as a result of an undiagnosed strep infection, which causes his joint pain and heart murmer. Maybe not. It's a puzzle. But his tics to me seem more to fit his ocd. They are not spastic jerks which is what you think of when you think of tourettes. Hes twists his wrists in a circular motion which he does by choice - sort of . What I mean is that he is physically doing it on his own, but is compelled to do so. They seem like Sydenham's chorea, which is another symptom of Rhemetic fever. I had been given him intrakid vitamins and also Inositol and the inositol does seem to help with his ocd. The germ side of it anyways... washing face, holding spit. But not the wrist twisting. He also has me count twice before he will swallow his vitamins. I could almost take these things over his behavior though. He gets a minor injury like bumping his head and freaks out. Or explodes with anger and agression. He says almost daily that it's the worst day ever. He has his moments of happiness but when hes stressed or upset it's the end of the world. ugh. So what do I do if his titers come back low? whats my next step for diagnosing. What if hes just got some physch issues? I don't know.

Im am new here, i've been back and fourth on what my eight year old son has. Hes had tics come and go for a couple of years seems to also have Oppositional Defiant Disorder and OCD. I'm not sure if it's Pandas. No testing as of yet. We have a dr. appointment schedualed as well as a neurological apt coming up. He just got a prescription for some antibiotics. The strep test in the dctrs office came back negative but he has a fever and what seems to be a sinus infection. Also, he was a raging lunatic tonight. Agressive, swearing, crying, almost showing signs of a panic attack. He has nevered sweared like this before. He was just plain angry. I have only given him one dose of antibiotics. Is this Pandas? What is my next step? Are there cures for this? IVIG treatment? Or I've read something about prescribing antibiotics over a period of weeks or months. What does that do?