mtmom

My son also experienced hallucinations. It was very hard to watch. He was convinced that someone was living in the wall and tried to dig them out with a spoon. This was a bit worrisome because he was digging by an electrical outlet. He also was convinced that someone had been to our house before and became very agitated when the person said they hadn't. He sees monsters looking at him all the time. My ds at the worst of it spoke nonstop to no one. We could not get him to stop talking he did this for days, months. I had no idea what he was talking about. Since his IVIG these behaviors faded. I am sure others on the board know more about this than I do. I was told you can still see symptoms fade up to a year after the IVIG. On Dr. K's website he states that 9% of patients experience hallucinations.

I have not posted in a while. My son had an IVIG in October. He definitley was worse before he was better. By Jan. he started to lose his symptoms slowly. In March he was at his best like 75%. Then the symptoms began slowly coming back. PANDAS doctor increased his antibiotic, Zithro, for 15 days and we are still seeing adventitous movements and loss of attention, agitation and some fixations on topics of interest. Then today he told me he had a sore throat while still on the full dose of Zithro. Do any of your PANDAS kids ever show typical sickness symptoms? What should we do?

My son was never a thumb sucker or pacifier user. Before he was diagnosed with PANDAS he would literally suck on his sleeves of his shirt. The teacher thought it was disgusting. It would be soaking wet. She said that she couldn't wait for spring to come. I do remember doing this when I was young. What's wrong with me? My middle son is constantly putting things in his mouth and his hands. We catch him all the time. He was a heavy pacifier user.He is 5

Thanks so much for the help.

Hi, I am looking for a LLMD in Chicago area. Can anyone help me? Thanks

While my son already had an IEP for developmental delay, the school district paid for an outside neuropsych evaluation. We did not now what had happened to him at the time but the school was not agreeing with the labels given to him by other outside evaluators - bipolar, autistic, schizophrenic. My ds was/still is/in a full exacerbation for quite a long time and his symptoms are constantly changing. The testing did help to expose some teaching strategies that were beneficial if they could get him to attend. Unlike the others here, my ds was on grade level at the end of kindergarten and his symptoms were so debilitating that he could not function to learn. We are two years later (2nd grade)with a child at the end of kindergarten level. Being a previous reading specialist and teacher, I know that an outside evaluation will be helpful in obtaining aid for your son. The school district does not like outside evaluations. They like to test their own. First, I recommend writing a letter to the principal indicating your concerns and ask for a team meeting/case study. By law the district must give you a meeting because a parent requested it. This doesn't mean aid will be given but it definitely is a starting point to air your concerns with the teacher, administrator, psychologist, social worker, etc. I hope this is helpful information for you.

Thanks for the hopeful posts. It can be so discouraging. My son is on a low dose of Zith. I am worried though because we have had illness (virus) in the house. the doctor says it is flipping but what if it is a PANDAS flare up. How are you suppose to now the difference?

I am so glad to hear that your daughter is doing well. Thanks for sharing your great news. I am new here and not certain of the abbreviations. What is a ART doctor?

We are still waiting for improvements after 5 weeks IVIG. We see nothing but more and more PANDAS symptoms. I miss my little boy.

Wow! Congratulations! Anything you can share will help tremendously. We were turned down by BCBS but decided to go ahead with it anyway.

I believe that Dr. K bases his dosage on the child's weight. It is different for every child.

When my son went to see Dr. K he was on Abilify and Straterra a very low dose of each. Dr. K mentioned that he needed to come of the meds to see the effects of the IVIG. Did you ask the Dr. prescribing the IVIG their thoughts on this?

My son, 7 tried many different medications for ADHD before realizing he was PANDAS. He has tics as part of his PANDAS symptoms. Concerta made his mouth move back and forth for the entire time it was in his body- 12 hours. It was so awful to watch. We tried Ritalin which increased anxiety. Stratera was the best because it held him still but it didn't help so much with attention. His dose was very low.

My son, 7, received his IVIG 19 days ago. He has been attending school. Today at school they sent home his third incident report. He has been agressive by hitting and attempting to bite his teachers. The staff has been using some sort of hold to block his hits. When this first happened I held him from school saying that we should wait until it passes. The school wanted him to come back. So he did and the last few days he has done the above behaviors again. Of course these are new behaviors for him never displayed before the aftermath from the IVIG, which everyone says is suppose to go away. So my question is should I keep sending him to school? What would you do?

We have BCBS of Il. We tried to get preauthorization and was denied. the word PANDAS was used in the note documentation and PANDAS is on the do not approve list. Dr. K stated that sometimes after the treatment with his letter of improvement they will pay. We shall see. Keeping my fingers crossed. We paid everything upfront.

Thank you so much for the response. It is very helpful and hopeful. The waiting is so upsetting. I can not control his behaviors anymore. He doesn't listen to me. I feel so helpless. school is a nightmare. He is so hyperactive and hurting teachers and screaming. I can not figure out if the screaming is a vocal tic or just part of the defiance. My boy was so compliant before...it is so unreal!

My son received his first IVIG ten days ago. We are seeing worsening of symptoms - he has become defiant, hyperactive, and aggressive. Some of these symptoms we have never been seen before. Is this typical from anyone's experience? We are very worried that the IVIG is not working. Also, my other children and myself had some cold symptoms a few days after his IVIG. Then, he experienced a low grade fever two days after the IVIG. Should we be concerned that maybe he is having a flare. For a few days afterwards his insomnia stopped. But it is showing its ugly head again. Any advice or input will be helpful.

I am new here! I have been reading posts here as a guest for a while. You all are very helpful and informative. My son, 7 has been diagnosed by Dr. K with PANDAS. We unfortunately have been looking for answers for our sons sudden onset for a year and three months. It has been a long road but we feel we are in the right place. As you have guessed Dr. K wants to do IVIG. However the process is taking so long. We are in the process of waiting for him to write a letter for our insurance company. One day seems like a year at this point. DS suffers with Obsessive language, school refusal, agitation, aggressiveness, tics, separation anxiety, sleep depreviation, anxiety. He hasn't learned a thing at school in a year. We see others on this site that are able to get antibiotics. So our question is We are in Chicago...does anyone know of a dr. who is Pandas friendly in this area? we are interested in trying antibiotics while we wait for the IVIG to happen.