nicklemama

Please join our small Michigan PANDAS group. I'll pm you the details. Look in the upper right hand corner of this page for your pm's. You are not going to find much help in MI. Your best hope is that your pediatrician has recognized the strep relationship. I would highly urge you to at least consult w/ one of the PANDAS experts, so you can get well on your way to treating this. It took us over a year to get a diagnosis for my son. The most important thing I can tell you is you do NOT have to have positive strep cultures or titers for a PANDAS diagnosis, so if they come back negative, do not let your doctor steer you elsewhere. Your pediatrician should run ASO and antiDNAse B titers. There is a lot more to be done but you are doing your homework and you will get there and quickly.

pm'd you

I want you to know my DS has never had a documented case of strep and he has been diagnosed w/ PANDAS by two the "big" PANDAS docs. You do not need documentation for a PANDAS dx. My DS was on high dose abx for 6 months and then we did IVIG. Abx really brought things under control and made life easier. IVIG got rid of stuff we didn't even recognize in day to day life. I would be very cautious about starting pysch meds. Risperdol is very powerful. It has the reputation for causing a tremendous amount of weight gain. My own opinion is it only masks symptoms in a PANDAS child. My DS was put on lamictal before we knew he had PANDAS. It was helpful for anxiety, anger, aggression. However, we are now weaning him from it and its not all that easy, even though lamictal(an antiepileptic) has a reputation as an 'easier' drug, as compared to the antipsychotics. I'd recommend finding a doc that will treat the actual infection/underlying condition rather than bandaiding everything w/ psych drugs. Thanks for the book rec. I've heard several recommending this lately and I'm going to get it.

I sent you a private message. Look at the top right hand page to find your pm's. You have options.

I agree w/ DeDee. Its worth your while to explore PANDAS.

Thanks EAMom!

Norcal Mom- I hear you. My DS goes right back to sleep but, like you, I don't and it is killing me, too. EAMom- The lamictal never had any effect on his sleep issues. He's been night waking since this whole PANDAS thing started and its been near 3yrs now. He was on 100mg of lamictal for 14 months and we saw no changes. The only thing that helped was IVIG. He went about 5 wks sleeping in his own bed and not waking. He had some sort of minor illness in early Aug w/ fever(neg cultures and titers) and then we started the lamictal wean and now he's back to night waking. He shows a pattern after the next step down. Three days after reduction, he gets irritible and starts the night waking. After about 3-4 days of irritibility, it slowly subsides, as does the night waking. Then, unfortunately, its time to lower the dose again and it starts all over. However, this time, the irritibility lasted 1.5wks. We are going to increase the time between dosage decreases to let him get back to his post IVIG baseline for a while longer before the next decrease and see how that works. I'm not really certain what NAC is. I'll google it. Thanks for the suggestion.

Do not rely on the strep cultures and titers to determine if your DS has PANDAS. Mine has never tested positive for strep. He has PANDAS. If your ped won't prescribe w/out positive titers, move on to someone else, preferably a doctor that treats a lot of PANDAS kids, like Dr Murphy. I wouldn't wait two months though to be seen by her if you're not getting help from your ped.

We see that in our DS. He cannot fall asleep w/out one of us lying next to him.....even w/ melatonin. If he had no melatonin, we're talking a few hours to fall asleep. In my mind, our DS has some separation anxiety issues. They were severe w/ his initial exorcist presentation of PANDAS, but w/ abx and one round of IVIG, they are somewhat minor. He also gets up during the night and wants to get in our bed. Sometimes he does, sometimes we take him back to his own room. The going to sleep issue is always there having never waned. The night waking and getting in our bed waxes and wanes and it doesn't even seem to be in correspondence w/ illness. We are currently trying to wean our DS off lamictal and the night waking has been waxing since.

Bribery, pure and simple. We take a trip to TRU and put a money limit on it. Wanted to add, my friend always says its not bribery, its an incentive program, lol.

I am looking forward to meeting everyone.

Augmentin 250mg SID

PM'd you.

Did you mean a psychiatrist in Philly? Psychologists are not medical doctors and cannot prescribe meds. We consult w/ a PANDAS specialist in NJ who does not take our insurance and the blood tests and medications were covered by our insurance and we are out of state. Actually, we paid upfront and the doctor submitted the bill to our insurance who did end up covering it. We have not had any success w/ local doctors so I am very biased toward the PANDAS specialists.

Oh, geez. Personally, I'd keep my DS home. However, I'd have to point out that Flumist is what set off DS's major exacerbation so I have a litte PTSD over that. That said, any kid could get the Flumist and sit right next to my DS and I'd not know it. A school full of Flumist would be more than I could take, risk wise, though.

We won't be discussing it either. I'm not sure if the school will or not. DS does not watch the news or much tv, so I'm not sure he'll even be aware of it. He will ask if he becomes aware if it. Wanted to add....DS is only 7. We will talk to him about it if he asks. Believe me, he will ask if he hears about it. I just don't know that I want to arm him w/ something to worry about. Frankly, I would have this same mindset even if he didn't have PANDAS. We try not to expose him to things like this at this age.

Wilma- I am so happy for you and your daughter.

FluMist is the nasal flu immunization given which contains modified live virus in it.

As difficult as it may be, you are probably going to have to see one of the PANDAS experts. Two will do phone consults. We went everywhere looking for help and answers. I just couldn't believe a boy who was perfectly fine could be so 'sick' after having the FluMist. He had most of the symptoms/behaviors you list above plus a lot more. It took us a year to figure out what was wrong w/ him and get the proper PANDAS diagnosis.

DS has been on abx since Oct 2010. Dr T recommended Florastor. We've been giving him the adult capsules 2x a day since and have had no problems. I wouldn't mind paying less but at this point "if it ain't broke, don't fix it" is my motto.

My DS has never had a titer rise. He's also never had a positive throat culture. He's had the immune panel ran...twice. Normal both times. He does have a reaction of symptoms escalating when he's had a known strep exposure. He had two this summer. We upped the abx and things settled down. Dr K says he has about 100 patients just like DS. Colds and stomach viruses's have not affected DS. We think he's PANDAS.

My DS7 had very similar behaviors as you describe in your daughter. He has PANDAS and his initial presentation was anger, irritibility, rage, severe separation anxiety, then came the ocd's, of which he had many. He also developed sensory processing disorder caused by PANDAS. Finally came the tics. He had so many things going on I can't possibly list them all and keep this short. Like your daughter, he behaved very well at school, however, he had a huge drop in social skills. He basically kept to himself. His ocd's were a large part of it. We could NOT reason with him. The treatment that got him to where he is today is long term antibiotics and then intraveneous immunoglobulin therapy. You'll find many parents on here dealing with both PANDAS and lyme. They will be your best source of information. One of the best things I did was get the book The Explosive Child by Ross Greene. It really helped us learn to deal with and manage our son to try and keep the explosions to a minimum.

I'll bite on this because I have a different perspective. We adopted our DS. Yes, I would do it all over again. I have no regrets. I love him. He has brought such joy to us. He has also brought us to the depths of sadness and near hopelessness. He went undiagnosed for nearly 2yrs. He also was an exorcist presentation w/ lots of raging. There were times when I wondered why on earth we had brought this to our lives. However, our love for him gave us the strength to continue to search for answers to his behaviors. Abx and then IVIG have brought him (and us) much needed relief. It has taught us many lessons in how much strength we have to persevere when things are very bleak. It has made for some extreme stress in our lives but we keep trudging on in the belief that we will all get through this. We were married for more than 20yrs before our DS came along. We have weathered many things but I have to say, I hope this is the worst of it!

I hope you'll reconsider and post monthly updates. Amy- Your post really gives me hope. We are 3 months post IVIG, doing well. We just saw Dr K today and he is pleased but told us our DS is still a work in progress and it will take the full yr, providing we have no setbacks.

My DS (age 6.5 at the time) became suicidal on celexa, an ssri, after 2 months and one dose increase. He was then weaned off and started on lamictal. It did nothing for his ocd. It works very well for mood lability. We are currently trying to wean him from it.