Few questions? New here

[Missmom]

I am new here but have found most of your posts very helpful. My ds12. Is now on his third pandas episode although we just got an official diagnosis ten days ago. The first was when he was eight and it was very mild just mainly a mild grunt and some anxiety. At the time I just assumed it was a nervous habit and it went away. I did not associate it with his recent strep infection. The second was a blinking episode that lasted about a week he was 10 years old. He complained of a burning throat at that time and the doctor called in biaxin it went away. About a week after that I read an article in our local paper describing pandas symptoms and it sounded as though I could have written the article myself. My son also had a fear of germs and washed his hands before putting anything in his mouth (not a bad thing right). He also needs reassurance that he is going to be ok. Now he is 12 and started with a head nod overnight and it was almost constant.. I immediately knew it was strep related. Took him pediatrician who took two rapid tests both came back negative. I asked for the strep blood test which took five days to come back positive for strep. The pediatrician then diagnosed him witH pandas and consulted with another ped. Neurologist. I have two weeks of augmentin and then a daily dose of keflex for six months.

 

My questions are. How long should it take before tics go away? They immediately subsided some but are still present. Now it seems like they are remaining constant but not severe.. His attitude seems to be improving and less fidgety as well. How do I know if this is a strong enough prescription and if the infection is going away? Can the doctor run another blood test to see if it is gone? During the two previous episodes the tics were gone in about a week. How do I know if this is a strong enough dosage? I am afraid this is not strong enough then we are back at square one. I have read other posts saying that the tics are usually the last symptom to subside. He is taking 500 mg aug. twice a day. This is my pediatricians first case of pandas he is on board but has been consulting with another dr. Who has seen cases. So he is learning as well. What are some good questions to ask him on my next follow up visit?

 

I know we are learning by trial and error here so I hope to learn and benefit from all of your experiences. We had almost two years between episodes so I am just hoping to get back to normal.

Thanks.

Missmom

[colleendonny]

Hi, I'm not as knowledgable as some of the moms here but I just wanted to respond to your message.

I do not know about Biaxin. My DD5 had her overnight onset of PANS in October and we did get a quick diagnosis 2 months later, in December. I see that your son is 12 and is on 500 mg of Augmentin 2x per day. How much does he weigh? My DD is 5 and 53 pounds and is on Augmentin 600mg 2x per day. Maybe your son's dosage isn't strong enough? For my DD, a steriod taper of Prednisone helped with her throat clearing tic.

I think every kid with PANDAS truly is different and what works for one kids may not work for the next.

I just want to say that is definitely a positive that the tics immediately subsided and it could take time for the rest to go away. Experimenting with abx could make a difference. Also, make sure you are giving probiotics along with the antibiotics.

Your pediatrician should be able to do a repeat blood test. What came back positive, a throat culture or blood test like ASO oe DnaseB? Also, PANDAS is now called PANS, which means that exacerbations are not triggered just by a strep infection. My daughter hasn't been positive for strep, but does have ehrlichiosis, which is a tick- borne infection.

 

Like I said, I am definitely still learning. I'm sure someone else will add to my response, but I just wanted to start you out somewhere...

 

Where do you live? I would suggest that you start seeing a PANDAS specialist, even if your son does well with this round of abx.

There is a link up front of doctors who have helped, but there are 4-5 doctors who truly specialize in PANDAS in the US.

 

Good luck! Let me know if I can be of any more help.

Colleen

[Missmom]

Thank you for your response, my son weighs about 95 lbs so maybe he needs a little stronger dosage. I may call the dr. On Monday and ask for a little stronger dose if he is not doing better. I have no idea what probiotics would be helpful or where I would purchase them, are they basically the same as vitamins? As I said I am new here. I live in Mississippi and will travel to see someone more experienced if necessary but for now my pediatrician seems to want to help, plus I need a referral for insurance to see a specialist. This last time because the rapid tests came back negative we did the blood test to determine the strep. so I was hoping that if we go back another blood test might indicate if the infection is gone. I am so sorry you are dealing with this with a five year old. It sounds like you have a pretty good plan though. We can only pray that these children outgrow this at puberty.

[JAG10]

Over 40kg (88lbs) is adult dosage which would be 875mg of Augmentin every 12 hours. The dosage sounds a little low.

[colleendonny]

I'm not so sure you need a referral to see a PANDAS specialist.

Check out the link above labeled helpful threads. You will find lots of info up there. We see a specialist in CT. He is the only PANDAS specialist who takes insurance. The others will give you paperwork to submit to your insurance company and they may reimburse you.

 

It is great that your pedi is willing to help. But I think you need more than that. PANDAS is very complicated and effects kids in many different ways. You need someone to do more than just a strep test. He could have other infections.

 

Probiotics help keep you healthy while taking antibiotics, especially long time as it is with PANDAS kids. It helps keep yeast under control. You can but them at target or online. We take culturelle and MegaFlora. There is a search option in the forums. Type in probiotics, or anything else on your mind, and things from previous discussions will pop up.

 

I'm on my phone now so I can't really attach links but try, (I think these are the sites), www.pandasnetwork.org, www.pandasresourcenetwork.org.

 

I will also private message you. Look for your messages in the top right.