trubiano

Hi! I haven't been on the site for a few weeks and just saw your question. We started out last year on bicillin LA injections. The draw backs are that it is so thick that is causes a ton of pain going in and my child limped a few days after. The reason we stopped it was because he started getting blurred vision after his injections and also the symptoms would come back about a week before his next injection was due. The oral PCN has been a Godsend for us.

Well, almost a year since our issues started and I thought we had it under control! I do not post often, but I read almost everyday. This site has been a huge help and I'm hoping for some more great advice. My 7 year old has been doing well. The tics have gone and all the OCD/emotional issues come and go. We are in the middle of his "confusion" episode. He is day dreaming in school and is unable to have any focus. His forgetfulness is also a big issue with school work. I need help! What do I do? He is on PCN daily, fish oil, probiotic, and a mulitvitamin. As you all know the Neurologist keeps pushing Clonidine, but that isn't going to happen. To give you an example of what has been going on: I told him last night to feed the dog. He went into the kitchen and a few minutes later when I walked in he was just standing there. I said "Conor, feed the dog" He said "Oh, I forgot". Then I walked out. A few minutes later I went back in and he was still standing in the same spot. "Conor, what are you doing" he says, "I forgot". So I say "feed the dog, please" He walks over to the drawer and grabs a pencil out. I ask him what he is going to do with the pencil and he just laughs and says I want to draw. Needless to say I just fed the dog! He was given a work sheet in reading class and in the 40 minutes he had to do it he managed to answer 2 questions on it. I'm going in to explain to the teacher(again) how he needs help focusing, but what else can I do? Is there anything the rest of you are doing that has helped? I know this is just temporary and it will pass, but his school work is hurting and I don't know what to do! Thank you again for all your help this past year. What do you use to help with focus? I was thinking maybe Child Calm?

Totally off the topic of our children I have a question. I recently had blood work done and my Copper level came back high. My first thought was to come here and ask all you experts what this means! My Doctor told me not to worry about it. I'm not taking a multivitamin so how am I getting high copper levels? My children's tests aren't back yet, but I was hoping to find some answers on myself. Is this dangerous or normal? Can I start taking a multivitamin even though they all have copper in them? My Iron level was low and he wants me to start a multi with iron. Thanks!

My son is on the PCN V and has done great on it. His tics are gone. When PANDAS comes back it is OCD/emotional issues. At first my PED had him doing Bicillin LA injections every three weeks because he couldn't swallow pills. It worked well, but was very painful for him. I waited a week past the time he should have gotten his next injection before starting the oral PCN to see how he would do and the tics came back strong! I won't try weaning for a LONG time!

We are all here for you! My 5 year old son(6 now) had all the same issues. ID wasn't really any help, so if you do not get any answers or help there don't get upset! I would have your Ped do the DNASE/strep titers and see how high they are. Off antibiotic even with a negative strep test my son's OCD/tics come back. If your Ped is willing to try, put him on penicillin daily and see if it helps. Although we have relapses, as PANDAS kids do, my son is 100% better since starting the antibiotic. I only wish it didn't take 5 different specialists to figure it out. This is a hard confusing time for you keep coming back to the forum! I find not only help for my son, but support when I need it!

I bought the Omega 3 at Walmart this time. It's called Spring Valley and the back of it says No Gluten, No Lactose. The only thing I question is it contains natural/artificial vanilla flavor. It's 99.99% Fish Oil.

Everyone was strep negative. Thank you for GF ideas and website. I asked today about getting some blood work done, but my doctor was reluctant. She said they can test for allergies, but sometimes things come out abnormal when they aren't really so she thinks we would do better eliminating foods one at a time. I have started watching labels and trying to get as much GF as I can. I found GF Omega 3 tonight! Who would of thought it was in there?!? Thank you again for all the help! Oh, we are in Ga and my son is 6.

He is on PCN 250mg twice a day. After about an hour of apologizing he was back to the sweet little boy he normal is. Michele was your son addicted to carbs before you started him on the wheat free diet? My son could eat cheerios and bread all day if I let him. We stopped sugar and white refined breads, but I wonder if I should pull all breads and cereals from his diet. Is it the OCD or is it really a food craving? Thank you to all who responded yesterday. This morning was a little ruff getting him to take a quick shower(drought in GA), but after the rush he was better.

Chemar, Thank you! As expected he feels guilty and held on to me for over an hour saying how sorry he was. I just keep telling him it is ok. He acts very tired and on edge like he hasn't slept in a few days. I stopped giving him the Child Calm since he is so drained. Should I keep giving it to him until this passes? I'm so glad I found this sight, I just needed to vent to others that would understand.

Michele, Our children have always had similar problems. Did your child seem addicted to carbs before you started the diet? My son could live off of cheerios and bread if I let him.

We have been dealing with PANDAS since 3/07 and the symptoms come off and on. As I type this my 6 year old is in his room screaming at the top of his lungs kicking the floor. He is yelling he hates me and wants to kill me. His school work has declined this week due to lack of focus and he has been very emotional. The OCD is back full force along with his fear of everything. The only thing I could think to do was get on this site and ask for prayers. I'm taking him for a strep test tomorrow, but I know even if it is negative this is just something we will be dealing with for a long time. It is so weird that he will be in this uncontrolable fit for a few minutes and then he will be upset and tell me how sorry he was for saying mean things to me. The pattern is always the same! I will sit with him for about 30 minutes as he crys and apoligizes over and over again. I worry about him as a teenager. Will he be able to control his fits of rage? When I ask him why he says such hurtful things to me he says his brain told him to. I keep telling him when he has a thought like that he has the control to stop it. Ahh!! I just feel like crawling in bed and putting my pillow over my head for a few hours. Just when I think we have fixed the problem PANDAS rears it's ugly head!

Thanks Chemar! I can always count on you to give good sound advice. Allergy testing from our enviromental Dr. is almost $3000 and I am trying to find some other GOOD way to determine any allergies all my children might have. I was hoping my Ped could do some blood work, but she is clueless.

This is what I found out about it. You hold something in your hand while a computer is testing. Could this really work? A: Biomeridian testing is a noninvasive method used to assess the energy meridians (channels) of the body, and it can tell you: • The functional status of your meridians and their related organs, systems, or functions, by determining if they are stressed, balanced, or weakened, and by how much. • Which specific nutritional products will bring your unbalanced meridians back to balance. • If a product you have in hand will bring you to balance. • If you have specific sensitivities to foods, molds pollens, etc. • If you have spinal misalignments interfering with your meridian energy flow, and their location. Q: WHO WOULD BENEFIT FROM THIS TYPE OF STRESS TESTING? A: This test would benefit anyone interested in examining and improving the functional energetic status of their own bodies. This applies to those who are unwell and looking to improve their health as well as those who have no diagnosable illness but would like to optimize their current state of health and possibly prevent future negative health issues. Q: WHAT SHOULD I EXPECT DURING AN EXAMINATION? A: The examination is performed by testing sixty-two different acupoints on both hands and feet which relate back to the energy channels and their related organs, systems, or functions. This testing does not involve needles, only a stylus is used to send a very small electrical current (not a shock) through each point, which is recorded and analyzed by the computer system.

Anyone heard of it?

Has anyone tried this for allergies? I contacted our Chiropractor who owns a Wellness Center and he suggested it. It sounds a little weird!?!?

Can my Ped do Food allergy testing? I would be interested in seeing if my son really does have an allergy issue.

Bicillin LA(long acting) was given by my Ped. We started out on it every three weeks. It targets only the strep virus so it was supposed to be good long term and not hurt the good bacteria in his system. Our problem with it was trying to push my child in the door every three weeks with him sobbing. The medicine is thick like glue and hurts going in. The needle is very large and he would limp for a couple of days after getting it. There is no way we could continue doing it for the next 10+ years. He did start out on every 4 weeks, but at the end of that 4th week he would start with terrible OCD and vocal tic issues. It took some begging, but I finally was able to get PCN orally and I pray it continues to help. Thank you for the probiotic idea! My local CVS had it and it is SOO much less expensive than what I have been getting. How many a day do you give your child?

Hi! I have a six year old diagnosed in March. We tried in July to take him off PCN because he was doing so well. Exactly two days off the antibiotic his tics started back and he was very emotional. Our Ped gave him a shot of Bicillin LA and within a few hours he was better.

tlk, Thank you! I am not happy your child has the same issues, but happy I'm not crazy. We also repeat things over and over before he hears it or understands. He had an MRI in April and it was normal. Just some swelling in the BG, which they said was due to the antibodies being fought. His school work has gone downhill the past two weeks. He came home with 20 questions wrong on a 30 question test. He said he got confused. I don't know what to do. This is all the same stuff coming back from April. Maybe I should take everyone in for a strep test. Thank you again for your reply!

I have refused all normal medications. He is on a fish oil, muti vit, Pen V, and a probiotic. When tics flare I use cal/mag. I live in the country and the closest health store is 1 hour away. I ran out of probiotic so he has been off it for about a week. I wonder if yeast could be an issue? I do have a GNC about 40 minutes away do you think they have a good probiotic I can use until I go to the health store on Tuesday next week? I'm going to watch him for a few more days and see if the confusion gets any worse. The Ped will say call the Neuro and the Neuro will say come in for appointment, we'll drive 1 1/2hrs to the office, wait 2 hrs to be seen, and then be told this is normal give him clonidine to calm him down. I wish I could find a doctor that could offer help with PANDAS issues. I don't know what is normal and when to worry. Does Dr. Murphy do phone consults? I should call and see where we are on the waiting list. This is truly an up and down illness for him and myself!

Michele, Dedee: I was wondering if your children seemed confused at times? The past few days my son has had short term memory loss and seems confused at times. This morning was the worst. I found him in the kitchen opening the cupboard doors. When I asked him what he was doing he said "what are these" I kind-of laughed and said the cupboards silly. Then he looked at me strangly and said "what do we use them for". He also wanted to know when we got them. Later, I told him to go get dressed for school and a few minutes later I found him sitting in the car in his underware and backpack. I asked him what he was doing and he said he was waiting for me to take him to school. I told him I said to get your clothes on and he looked confused and said "oh, I forgot". Is this nornal PANDAS relapse behavior? I can't call my Neuro or Ped because they think I'm crazy for not medicating him. I do remember he was showing confusion before we got the diagnosis last March. Writing his name and doing any school work. How can I help him? Just when we think things are getting better something else pops up. I really was hoping that this wouldn't come and go with my child, but it does! Thank goodness for this forum.

You have come to the right place! I am still learning all this myself, so I will let the others answer your question. Everyone is wonderful here. I do have one question for you. When your son is on an antibiotic for the strep do the tics/ocd seem to get better?

Sports was a nightmare with my PANDAS son. Swimming lessons have been a huge help. It makes him feel special that he has his own interests. I tried a class type setting and he was unable to focus with all the other children. He did not like having to wait his turn. Private lessons are wonderful and he sleeps really well that night. Thanks Michelle for the info! I have treid Child Calm and didn;t see a difference. I'll keep looking.

PLEASE!!! Someone answer this question. I came on this forum tonight looking for the same answer. My 6 year old is having a terrible time in school focusing. I really do not want to use medications.

I had not heard of the Epsom cream? Does this really help calm the tics?