Pandas symptoms?

[porkchop]

Hi,

Im looking for advice on my 11yr old who has strange behaviors and possible pandas. Does anyones child have a sort of cycling to their symptoms? Every 3 mths? Does a cold trigger the pandas flares? My dr. said my son had "epileptic spikes" on his eeg, but didnt say he had epilepsy? Do pandas kids have abnormal EEGS? Does anyones pandas child sleep alot during a pandas flare? My son has a very hard time getting up in the morning and wants to lay in bed all day. What about chewing on clothes during a pandas flare? He chews holes through his shirts, and he is eating pennies and toilet paper and any other non food item he can get a hold of, but when he comes out of these "episodes" he doesnt do any of this. He is pale, almost gray looking and severly fatigued when this happens. I also feel these "muscle twitches" that go on all day long whne he is laying down and sleeping. We had been working with a dr. who did 2 rounds of IVIG and IV steroids and then put him on anti seizure meds becuase he thought he had pandas and KLS. He went 4mths with out any problems and we though he was cured, then on day he had an eye exam and they dialated his eyes and put drops in them, and then the next day he woke up "sick", so the dr. thought it was seizures. He had Anit Dnase done it was 400 and ASO was in the 500 range, so thats why we did ivig, but he has never had a positive swab. I think my dr. has given up trying to figure this out, but I cant give up on my child. There is something wrong with him and it seems to me everything keeps pointing to pandas. We live in Maryland and I am interested in finding a good pandas dr. in md or delaware or virginia that accepts blue cross or medical assistance insurance. Dr. Latimer does not take our ins. and I have no way of coming up with the money to pay for a visit. Any info would be greatly appreciated, this is really taking a toll on our family.

[colleendonny]

Hi, I'm not sure if I will be much help but I will try.

Lyme and co infection symptoms can come and go in cycles. This may be worth looking into. We tested through IgeneX. Basically you call them, they send out a kit. You go to your pedi, they sign it and collect your sons blood. You pay up front, about

$750, and hope insurance will cover some. They would reimburse you. IgeneX would send you the required forms to submit.

Also for a doctor... We see Dr. Bouboulis in Connecticut. I'm not sure how far he is from you, but he does accept BCBS. And he is a PANDAS specialist. He books many weeks out, so if you are interested, I suggest you make an appt. and cancel if you decide to not go.

 

I hope I was some help! I'm sure some more knowledgable will chime in:)

Hope you get some answers soon.

[PowPow]

I hope you can find otu if Dr B takes your insurance.

You will find very few, if any, PANDAS docs take ins.

It is financially crippling for most of us, honestly.

 

I am bumping this up in hopes that someone else has advice for you.

My advice would be to get your kid to Dr L or to some PANDAS doc.

I do have a friend whose child (not PANDAS) had seizures after having their eyes dilated.

I talked to a woman last week whose kid's eyes have been dilated for a month since her eye exam and also has PANDAS symptoms.

Eye dilation drops are something I have never given a second thought to! I will now certainly.

 

Given what you have been through, I think you should try to do whatever you can to get to Dr L.

 

My child also slept a huge amount (20+ hours a day- only waking for bathroom and food) for 2 several week periods over the past 3 years. The OCD was still present between the sleeping times.

 

There is an article on pandasnetwork.org that relates a case of KLS to PANDAS. It was the first time I had heard of KLS and I really think it described by child.

 

I do not think Dr L takes any insurance. I hope you do not take this as harsh- but can you just get a credit card and take your kid? Once you see her- the other visit are less and prescriptions/IVIG whatever should be able to get covered.

Your first visit is pricey, I know- but you will see her for a very long and helpful visit.

This is a very difficult, long road and I know the toll it is taking.

The good thing about Dr L is that she is in Maryland; she does pex, steroids (treatment dosing- not just pre-IVIG type) and pex. You will not get that mix with most other PANDAS docs.

 

Best wishes. I hope this has helped you some.

[WorriedDADNMOM]

Are you doing any type of supplements??????? Or have you had any longer term abx??? Your post does not say.

 

I don't understand it all but doing Vitamins and minerals, probiotics, cod liver oil with DHA, enhansa and several others with long term abx help the immune system "reset" and strengthen. In addition we do a sick protocol that has helped us. PM if you want the entire list.

 

You must get to a Pandas/Pans/Integrative ped. Someone who has a comprehensive idea of what to look for and a comprehensive treatment protocol. I hope this helps.