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?