Minnesota Mom

I have had a couple families contact me in the last couple of weeks about their children suddenly different. I live in MN and a year ago I was in the same spot these families are. I do not have any good local resources on doctors to see that have heard of PANDAS. There is one specialist at the U of M (where we got our Dx), but the urgency to get some help and the long wait to get into this provider doesn't help these families in desperation to understand what is wrong with their child. Any ideas?

We are seeing an OCD specialist and I feel your frustration. It seems to be a very straight forward approach "talk back to the OCD". Although I think my son has benefited from the first few sessions, I feel like we aren't making anymore progress. On a selfish note...i'm exhausted from repeating my son's struggles to multiple people weekly.

anyone have a good remedy to help with stomach irrritation due to the propholactic PCN my son is taking? He is on Penicilllin V 250mg twice a day. I give him one probiotic supplement a day.

Has anyone else had your child complain about being dizzy during an exacerbation? My son has experienced dizzy spells lasting about two days at a time. The first time it happened my son's gait was off too. I mentioned this to the PANDAS research doctors when we were at our first visit and the thought was it could be hyperglycemia. My son has on three seperate occasions has had episodes of dizziness, nausea, unsteady gait, with these symptoms coming and going for about a week. Any ideas?

We are in the research study and has been a great experience. You have the leading doctors researching and treating PANDAS working with your child. We got placebo the first time. I am a firrm believer that IVIG works. Within days of treatment I saw huge changes and the recover after IVIG was rapid. We are 3 months post IVIG and my son is 95% back. Look beyond the tests and procedures, they do a great job of comforting you and your child through all of this. The spinal tap really was no big deal. I think you will be grateful you enrolled. I got cold feet right befor our first visit, but once we got there I felt like I finally had someone that truly understood all that we were going through. Good Luck!

My heart breaks reading this. It brings me right back to where we were 4 months ago. We too made that same trip to the ER without any relief other than this is anxiety and we need to get him into counseling. Clearly not anxiety. Psychiatric symptoms do not come on overnight. I am so glad you found this forum, it will be your best tool to keep you moving in the right direction. I agree you are probably going to have to seek medical help outside your state if you don't find someone locally that understands PANDAS. I found that the doctors in my area wanted to treat the symptoms and not address what caused the symptoms. Also, you will need to have confidence in your doctor because this is devastating for us as parents when we lose our child to these obsessions. So finding that person who can educate you and help you through this is vital. We happen to enroll in the PANDAS research study through the National Institue of Health and they were the most helpful even at the beginning before we even made the decision to follow this path. I would recommend calling the research assistant, if anything they will guide you to the right help. The National Institute of Health, is where the top doctors researching and treating PANDAS are located. The study is researching the effects of IVIG (immuniglobin) on kids with PANDAS in the early onset. If you would like more information I can get you that. Otherwise, go to http://intramural.nimh.nih.gov/pdn/web.htm. Hang in there!

Has anyone had a child with a previous diagnosis of ADHD before PANDAS and after PANDAS experienced the intense hyperactivity? Our son was diagnosed with ADHD 2 years prior to having PANDAS at that time we had more of the inattentive and poor focus concern, not hyperactivity. Since having PANDAS (diagnosed May 2011) we initally struggled with the intense OCD and then it moved to intense hyperactivity and has been flip flopping ever since. If you have this same scenario, how are you dealing with this in school? My son is not able to focus and causing a lot of interuptions in class.

My 10yr old son had something similar to this for about 2weeks. We have had a MRI and EEG, which were all normal. I think this is part of the PANDAS, chorea movements. I know how concerning this is. I don't think it would hurt to have an EEG just to make sure nothing else is going on.

As far as the research and SSRI's, to be eligible for the study you can't change anything prior to being excepted. We were already on the SSRI and my son was still in an extreme exacerbation so I guess the SSRI's weren't a factor for us. What did you see with your child that made you think the SSRI's made the symptoms worse? I have read this from other parents and I just am curious. Why does the specialist say no to SSRI's? What is the reasoning? I'm just trying to gather up as much info as I can. Any input would be great. I too am surprised that they would allow SSRIs in the study. You would think that they would need to use the Scientific Process of controlled variables. BTW-Prozac made our PANDAS son much worse and the 2 PANDAS specialists that we fly to see each said No SSRIs. This is a bit surprising. I do hope that your child is doing better whatever it takes!!!! Prayers to you and welcome to the family.

My son is almost 11. He still wants to play, but it is the age-regression, emotionally lability, hyperactivity. I don't want to put too much focus on the differences for his friends because I'm afraid at some point the teasing might start. I have been letting my son share what he wants and how he wants to with his friends. He usually says, I have OCD from strep and his friends are like what? What is OCD? I usually have to explain it to some degree. How old/young is your DS? Is it that he's unwilling to play with his friends like he used to (separation anxiety), or is it that he's still willing, but his emotional lability, tics or OCD rituals interfere? Obviously, I would think age would dictate the kind and depth of information you might offer here, but also wondering if your son might not have some capacity for sharing some of what he's going through himself? At least to his closest pals? My DS was diagnosed with OCD before PANDAS at the ripe old age of 6. He told his best friend about it at 7, though I'd disclosed it previously to his BF's mom pretty early on, lest she be confronted with some of the behavior on a playdate or whatever. By 9, DS was writing papers and preparing art projects that disclosed his OCD to the entire school . . . he'd decided he wanted to shine a light on it instead of hide in a corner. It all depends on the kid though, for sure, as well as the circumstances.

Any advice on how to explain to my son's friends on what is going on with my son? I know some of his friends are wondering why he is doing weird things and not playing like he use to.

Tamistwins I am new to PANDAS and OCD. My son is 10 and was just diagnosed with PANDAS at the end of May. We just had our first round of IVIG a week and a half ago and his symptoms have gotten worse. I have read from other parents that this seems to happen. I was just curious how your son is doing now? Have you been on the PANDAS forums? You might get better response there.

T.mom My son was started on Prozac by the first child psychologist we saw that diagnosed him with PANDAS. The study doesn't want you to change anything before you are excepted and until 6 weeks after the first treatment.

Does anyone have any good ideas on how to document daily? When we go to the doctor they ask a lot of detailed information and sometimes I get confused myself on when behaviors started, how long they lasted etc... Just curious if anyone had any ideas on how to keep everything in sync.

My son is 1-1/2 weeks post IVIG. I noticed an increase in his allergies too. How is your daughter doing now?

This helps a ton. Every kid no matter if they get placebo or IVIG get tylenol and benadryl during the treatment to help keep the side effects at a minimum. Did you see the symptoms change every few days such as; motoric hyperactivity then evil thoughts then fear of contamination? This is how I see things with my son. One symptom dies down and a new one explodes.

My son had a similar response from IVIG. I'm wondering how your son is doing now? How long did it take for the symptoms to fade out after IVIG?

I am so happy to hear that regression is common after IVIG. My son just had IVIG 1-1/2 weeks ago and his symptoms have increased. Regression is a sign that it is working and getting rid of the bad autoantibodies. You should want to see that. I had a HUGE regression with each autoimmune treatment I had. High dose steroids & IVIG It lasted for about 6 weeks each time then slowly got better- up to remission. The regression started almost immediately. Also to add from experience... headaches for me usually was usually the precursor to something awful.

My son is 10y, he did have a headache and some nausea for a few days after the treatment. What has been your experience with the waxing and waning of the OCD symptoms. We are going on 8 weeks. My son is taking Prozac and was just started on Penicillin since the treatment a week and a half ago.

I am new to the PANDAS world and let me tell you it has been a whirl wind as I'm sure most of you can relate to. We are in the PANDAS research study through the NIMH studying the long term effects of IVIG in PANDAS. We had our first treatment, not sure if it was IVIG or placebo. I honestly can't see any change yet. We are post 1-1/2 weeks since the treatment date. Any input on how long we should expect an episode of PANDAS to last. Our son's inital onset was May 27, 2011 and it has been very intense with some good days inbetween. Also, any feedback on IVIG and how soon you started to notice a change.