PhillyPA

This medicine is brutal. I was on it for three months last year for an eye infection. (As a side effect my skin looked great on this medicine-perfect complexion). I often wonder about giving kids this drug for Lyme. They call it herxing when a kid shows bad signs on a drug but what if it is just a bad reaction to the brutal drug. If it made me feel so badly as an adult -I would imagine that a kid would feel 10 times worse. High dosage, smaller bodies. Herxing is a common effect when killing off bacteria but with this drug I would have a hard time distinguishing between herxing and just plain old horrible side effects.

That is acid reflux. Take an over the counter medicine. Something stronger than tums. I can't remember brand names but one of those medicines you take for a week or so. Prilosec - that is what it is called. (although my spelling may be off). Be careful about acidic foods like tomatoes, sauce, pizza. That is what does it.

I have done Reiki for my son. It seems to help. So much so that I got trained to do it. They do it in hospitals quite often, especially in cancer units. Why it works - I am not sure. I don't know about energy and healing. But I do know that touch helps people. The feeling of someone giving you a hug. Touch helps. Especially the elderly who very rarely get to experience the hands of someone touching them. Reiki is very calming for my son. He jumps up on the table and directs her as to where he wants to be touched. I do it myself to him now. I would never do it as a profession because quite honestly I don't like touching strangers. But I do it for my son. Most Reiki practitioners do hands on touch so you have to be specific that you do not want hands on. I would be very skeptical of someone who says that their Reiki is very powerful or strong. You want the humble practioner. I would recommend it. It is worth a shot.

If it were me, both of them would be on antibiotics a.s.a.p. I have seen what recurrent pandas episodes from strep can do and it is not pretty...it is rather devestating. In my mind a gut would be easier to repair than a brain.

Whatever method you use,know that something will work and it will get better. When my son first started to take medicine, I would set my alarm for 5:00am everyday and wake him up. I knew I had to get that dose in before school as well as a steroid. Sometimes it would take 90 minutes to get it all in him. It was so hard but I was determined to get that medicine in him. Now, the whole process takes 30 seconds.

I am sure that people will take issue with my methods. Especially those who stay away from dyes. However, I have a hard time wrapping my head around the fact that a once normal functioning child who gets pandas overnight now has a problem with dyes. So - I put the medicine in a little medicine cup and I add a squirt of Hershey's strawberry syrup and stir with a straw. Then, I give him the straw and the little medicine cup and I say "drink". He loves it. If strawberry isn't her thing, try chocolate or caramel (although those are thicker than the strawberry). Even Dr. Latimer told me not to worry about dyes. Every child is different. My child has no problem with dyes.

My mistake Emerson. You are right. Sorry I misread it.

I have no issue with checking everything and leaving no stone unturned. MRI, CAT scans, blood work, spinal taps. EVERYTHING must be looked at. My problem is statements saying that these type of symptoms are more indicative in Lyme. They may very well be seen in Lyme but they are also seen in PANDAS. I have spoken with many parents who has seen catatonia in their Pandas child. So when I stated "That is not true" my intent was to say that it is not true that these symptoms are seen more in Lyme disease than PANDAS.

Emerson that is not true. Be very careful about making statements that "it is seen more often in Lyme" especially when a case is a serious as this one. You could offer the suggestion to get tested for Lyme and other conditions but be careful about such strong statements. In response, I will offer my strong statement - To me, catonia screams auto-immune or encephalitis or a combination of auto-immune and encephalitis.

We always go to Georgetown for IVIG. I don't even know what brand they use or if they change brands. Honestly, I wouldn't mind if they mixed up the brands. Maybe a mix would be better? Who knows...

When my 6 year old has a pandas episode he comes out of it with a low dose of azithromycin. When he does not have a pandas episode he is on augmentin to prevent strep. Azith brings him right out of it. Have you tried azithromycin?

I sent you a PM.

I think it was P.Mom who posted the explanation... By the way my 6 year old son,following a sore throat, started getting OCD and would not eat because he thought he was going to choke. He kept spitting out all of his food. His Cunningham test was normal except for a CAM score of 137, which is only slightly elevated. This past summer, he was treated with antibiotic and a month long steroid burst and is currently doing great. He was diagnosed with Pandas even though his scores were low.

A Cam score of 146 doesn't seem negative to me. That is positive for pandas.

I had a bomb dropped on my house. April 30, 2007. I still live in the rubble. I had no idea what happened to my sweet 5 year old. It just happened - overnight. We lived with it for 2.5 years without a diagnosis. Imagine that - 2.5 years with zero support. No idea. The hospital(CHOP) said it looked like pandas. His titers were low. They said it can't be pandas. It was dismissed for 2.5 years. When he first got sick I was so scared that when I went to the bathroom...my waste product was pure white. I don't even think I am at the PTSD stage. I think you only get there after your battle is over. I still in fight mode. I suffer from Current Stress Disorder. I look forward to Post. At least it is over. My son is now 8. I am grateful that it was only 2.5 years and not 10 years without a diagnosis. It is my hope that he is not messed up forever.

Start lifting. Get strong. Learn defensive moves and blocks. Eye of the tiger my friend. Eye of the tiger. I hold up my palms and let the kid punch away.

I think this depends on how early pandas was caught. My DS6 had mycoplasma pneumonia in November. His pandas was caught early (diagnosed within a week) and he has been on Augmentin since July. He had a slight pandas flare after the pneumonia for about 6 weeks. On the other hand my DS8, who had severe pandas for 2.5 years before diagnosis, reacted to his brother's pneumonia and is still in a flare. He did not get the pneumonia but he is a wreck. Even though he did not get the pneumonia, he was put on zithromax for three weeks as a precaution. He is getting another ivig in about a week.

My son alternates between urinating 20 times at day and holding his urine all day.

Honestly, who doesn't have carb cravings? Not many teenagers or even adults for that matter crave a bowl full of vegetables. Practically everything is a carb. It is comfort food. Carb - sugar- salt ...that pretty much describes the American diet. We must have a whole country with yeast problems. When people want to lose weight, no matter what the diet is, it is necessary to cut back on carbs. People love carbs! I don't know if it is anything to worry about unless he is eating a loaf of bread in one sitting. Eating lots of carbs is not unusual. And don't read this wrong - I am not trying to be a jerk. I'm just sayin' - lots and lots of people overdose on carbs.

My second son got pandas last summer at age 6. So now I have two boys with pandas. Antibiotics and one month of tapered steroids put him in remission. He is doing great! You know what you are dealing with. You know early treatment means remission quickly. Steroids plus antibiotics was our magic mix.

We saw infectious disease at CHOP. That was a pretty pointless visit. They said he was fine. The only thing left to do was a brain biopsy which they did not recommend. We do see improvement that lasts from the ivig. Things that have went away and never came back. His OCD has softened greatly. Everytime we get an ivig we have peace in the house for a while. On 12 weeks mark from his last ivig in August (mid November) he started to collapse. It coincided with his brother getting bacterial pneumonia. His pediatrician, after talking to the radiologist, said that he thought it was mycoplasma. The collapse continued. I am just not sure that there is a "cure" or "remission" for long term patients. I guess I am expecting miracles. However, I am told that I should not expect recovery so soon when treatment with ivig just started in May. It is just disheartening. I wish I would hear on this forum that a child did many ivig's and they are back to themselves but I am not. Perhaps they have left the forum or are not on the forum or perhaps they don't exist. Johnson's daughter was caught relatively quickly. One ivig seemed to do the trick for her biggest problem (sneezing). When I saw her interview, the child seemed to be in pretty good shape. My child could never do an interview.

Does anyone know why the pandas doctor's have begun to do multiple ivig's? Is there any research that says this works? Any one out there have a bunch of ivig's and their child got well? My son had three high dose(2gr) this summer. Now he is scheduled for ivig 6 weeks apart for 6 months (which come out to 4). My son has been very ill for 2.5 years before a diagnosis. He got sick when he was five years old and he is now eight. I know that his doctor is desperate to make him well. She is trying to save his life. I am just not really sure that that is going to happen. And so I don't explode with all of the stress - he has been tested for Lyme disease, by specialists(Fallon is one of them), multiple times. Please have mercy on me Lyme advocates. I can't take it right now. I just want to know about multiple ivig's. Do they work and is there any research on it? Have there been any desperately ill children with pandas who get well with multiple ivig's?

Sigh. It is so hard deciding what are the right decisions. We all want our kids to be 100%. I can tell you as a mom who has two boys with pandas that 90% back to normal is just as distressing to me as 30% back to normal. Also, the only reason I used the word paranoid was because it was in your original post. Not meant to be in any way aggressive.

How about Lyme disease?

My son talks in a low gruff raspy voice. It didn't start out the way. It started that he would whisper.