Joan Pandas Mom

So happy she is feeling better. Hang in there.

We ran out of Biaxin last Friday (only a 10 day script) I was seeing a small improvement. DS is doing a lot more compulsions over the last couple of days. We also started Straterra 3 days ago. I see a slight, slight improvement in focus but more compulsions. I don't know if it is from stopping the Biaxin or starting the Straterra. I would like to try the Biaxin and Straterra at the same time. DS was on Augmentin, Sammy dose for 6 weeks before T&A is December, without any improvement. I wonder if now that the tonsils are gone if we should revisit the Augmentin. I'm wondering the same thing. Plus, I don't know when to say we're finished. We are at day 25 or so with 1 more 10 day refill which I plan to use. Dr. T. mentioned eventually going to a prophylactic dose, but I don't know if I'm willing to risk it right now. I'd rather wait until May when the weather has dried out a bit and exposure to everything that is still going around is down. We didn't test positive for myco, but the Biaxin has definitely worked well for us. I think we were dealing with intracellular strep.

My son takes Clonazepam. Is this the same as Clozapam? He is 15 1/2. It helps a little with anxiety. He takes 1 mg at night when he is feeling really anxious. He was taking 1/2 in the AM when he first went back to school after being out for 2 months. it made him a little tired in the AM though. The first time he took it he said, "I'm sooooo relaxed!" Later that night he said, "I'm afraid I won't do my rituals right!" It makes him a little sleepy too. Risperdal didn't do anything for my son either. Good luck with the IVIG. Keep us posted.

My son's ASO was 1014 in October. He was tested in Dec. after 7 weeks of 2000 Mg Augmentin XR. They were still up at some # above 800. The lab didn't test higher than 800. He was tested in Feb. they were at 776 and again in March down to 648. Dr. T told me they can take a year to come down. I have been told different things by different people but it seems to me when they are dropping, I see improvements.

So happy your d is doing much better. The Biaxin was helping for my S too. He was only on it 10 days. I can imagine what 30 days would do. I don't understand how someone so helpful and knowledgeable can just drop the ball like this. It doesn't make sense.

If he ever returns my calls I will ask him about renewing the Biaxin. It seemed to work well for my son too. I see him starting to slip.

I forget, who do you see?

We just finished first round or 10 days of biaxin. It seemed to help. My son's last dose was Friday AM. I have tried to contact Dr. T (about 6 times over the last week + without any luck. I feel like we were left hanging.

Where can I find out more about the anti-inflamatory diet?

CT's give off a lot of radiation. My S use to snowboard. He plays football now. He has had 2 CT's because of concussions in his 15 1/2 years. I found out after the fact, they are not good for children. I heard to a PET scan would show inflammation, but I think they are very, very expensive. The book, "Brain Lock" discusses the use of PET scans.

My S has what looks like tics but he said they are not tics because he has an obsession first. I'm not sure though, sometimes they come on quick and I will ask him what the obsession was and he will say, "I don't know, I really don't know." I wonder if they are tics or compulsions. We have tried Adderall in the past but that made is OCD (and/or tics) worse. He had to stop taking it. quote name='MomWithOCDSon' date='Mar 27 2010, 02:56 PM' post='61470'] We haven't used Straterra, but we have been using another of the non-stimulant ADHD meds, Intuniv, and found it to be very helpful in terms of DS13's focus and ability to "get the ants out of his pants," etc. Since Intuniv is basically Tenex, though, I guess it is not always a good answer for kids with tics. Our DS's behaviors are primarily OCD, not tics, so we haven't seen any negative side effects on a long-term basis. He did get a little sleepy/tired by the end of the day the first week or so he was taking it, but that all evened out over time.

I know a few have tried Straterra. Have you had good results? My 15 DS got a prescription a few weeks ago. I think I'm going to give it a try today. I know it takes a few weeks to get into the system.

cats, pollen, not sure what else. I suspect a lot more. He can't do testing until he is off abx for 10 days.

I was just reading an article on PANDAS and it stated kids might have a predisposition from a grandparent having Rheumatic Fever. I think Dr. T. or someone on this board asked this ? a while ago. My dad had RF and my mom had scarlet fever. I had a little OCD growing up, but seemed to have outgrown most of it.

What have I missed with NIMH? Sure!! I'll be your friend!! Ah yes.. Dr. K and NIMH . Thanks!! You think if I get these organized my husband will look at them?

I am still waiting to talk to my doctor but my ASO was normal (56), but my Ant-Dnase was 15, the reference range is <7.5. My mycoplasma was elevated to 1.17 range is <.91. Has anyone else had this? What exactly does this mean, did I have mycoplasma sometime in the past? Do I have mycoplasma now? Should I be on an ABX so I don't expose my Son????? I am going to buy a big bubble and we can live in that!!!!!

I've been wondering if my son had Chorea when this started too. I pulled a video out taken 6 years ago when this started. I have to show Neuro for diagnosis but a local doc. did look at it and thought it probably was chorea. In the video, my son could not stop moving. At one point, he was doing a little dance with his feet and upper body movement but I noticed his hand was down by his side and his fingers wiggled as if playing the piano. This happened a few times with his hands. He also had the facial twitching, hand writing became illegible.

Thanks, that was a great article Vickie. Where did you find it?

I'm not sure if they did total IgA or celiac panel. Thanks and I will let you know after talking to Dr. I did tell my son NOT to have any milk today. IgG means intolerant while IgE means allergic. Depending on who did the test, they may not think the IgG results are significant. I know for us, IgG is very significant. My dd's gluten/wheat IgG was 75 and she is highly gluten intolerant. I would consider your milk result very high. Keep us posed on what the doc says! I am very interested. Did they test total IgA or do a celiac panel? Susan

Can anyone interpret this for me while I wait for Dr. to call me back? cow milk IgE result was <0.35 Range [<0.35] cow mile IgG result was 130.0 Range [<2.0] Wheat IgE result <0.35 Range [<0.35] Wheat IgG result 7.5 Range [<2.0] I think it means he is allergic to Milk and Wheat but does the IgE have to be elevated too? New to the allergy tests. Thanks for any help. All of you are great.

My fiance works in the ER. He is exposed to strep all the time. He is having a culture and ASO titer done today. This ought to be interesting. My non-PANDAS son and I haven't gotten our results back yet. Hopefully today. this (simplistic explanation) is from medline plus (I added the bold): If repeated cases of strep still occur in a family, you might check to see if someone is a strep carrier. Carriers have strep in their throats, but the bacteria do not make them sick. Sometimes, treating them can prevent others from getting strep throat. I assume what medline plus means by "sick" is sore throat/fever/etc...not necessarily PANDAS symptoms?? But really a PANDAS child is "sick", just in a different way! So, I suppose it is a matter of technical debate if you call a PANDAS child (who has no typical strep symptoms, but cultures positive) a "carrier" or not!

Gina, Thanks for the good laugh here. I needed that! So, you clear her, and then she resumes carriage at a later time? She'll stay clear if there is no more exposure (like over the summer, or in the spring if there are no strep notices). Last school year she had a couple of positives...she was definitely clear in the fall/summer at the start of school, then we got a strep notice in Oct...positive, then she was clear after tx 2-3 weeks later, then another strep notice in Dec, positive again, then we cleared her and she stayed negative the rest of the year (even after I got strep in April!). I know my nieces were having trouble with strep and they finally realized it was my nephew that was carrying it. From what I remember they just gave him abx and the whole issue seemed to clear up. My youngest son is definitely asymptomatic but I don't know about a carrier. He has had several throat swabs and cultures in the last 2 months that have come back negative but sometimes he has that streppy smell. He's the one with major gut issues so I'm beginning to wonder if he isn't carrying it someplace else. How can they tell if you are a carrier? Will most just have a positive throat culture? I've been wondering about myself as well, though I've had a negative culture in the last month too. It's tempting to take everyone of us, including the dog to have every orafice swabbed and cultured. Sorry to be so graphic but I'm only half joking!!!

So, you clear her, and then she resumes carriage at a later time? She'll stay clear if there is no more exposure (like over the summer, or in the spring if there are no strep notices). Last school year she had a couple of positives...she was definitely clear in the fall/summer at the start of school, then we got a strep notice in Oct...positive, then she was clear after tx 2-3 weeks later, then another strep notice in Dec, positive again, then we cleared her and she stayed negative the rest of the year (even after I got strep in April!). I know my nieces were having trouble with strep and they finally realized it was my nephew that was carrying it. From what I remember they just gave him abx and the whole issue seemed to clear up. My youngest son is definitely asymptomatic but I don't know about a carrier. He has had several throat swabs and cultures in the last 2 months that have come back negative but sometimes he has that streppy smell. He's the one with major gut issues so I'm beginning to wonder if he isn't carrying it someplace else. How can they tell if you are a carrier? Will most just have a positive throat culture? I've been wondering about myself as well, though I've had a negative culture in the last month too. It's tempting to take everyone of us, including the dog to have every orafice swabbed and cultured. Sorry to be so graphic but I'm only half joking!!!

Great idea to have it biopsied. I wish I had thought of it too. ENT said he was pretty sure there was strep in there from what he saw. His T&A was after he had been on an abx for 7 weeks.

This is all such great news. We are thinking about IVIG next step too.