PhillyPA

worried dad- is your son currently doing really well? Is he back to himself? Was the only reason that you tested him for Lyme was because you were paranoid or was it because you son started to collapse?

I am a little bit confused with Lyme treatment. It is my understanding that if a child has Lyme disease that has progressed to neurological disease it is cause for at least 5-6 weeks of iv antibiotic therapy. It is considered an emergency. I am not on this forum much but I noticed that a new poster from the Pandas forum had posted here and I was interested in what she had to say. I speak from experience. Within the first year of my son getting sick we went to see Dr. Fallon. Even before the lab results came back, he put my son on iv antibiotics. My son developed regressive autism at age 5. He had seen this before with a child and the child improved rapidly and cured with iv antibiotics. It turned out the my son tested negative for Lyme and all tick borne illnesses. He completed 5 weeks of iv antibiotics. It confuses me that Lyme doctors are not treating children with neurological disease as an emergency. It is also my understanding, as per my pandas doctor, that after a child gets ivig Lyme testing can be totally inaccurate - producing false positives. My son had all of his Lyme testing done before ivig. I also think it makes sense that it can take a long time for ivig to heal the brain. I think that it is possible that one could get ivig, then go the Lyme route and start treatment, and then see progress. The question is that one can not know for sure if it is the Lyme treatment that is working or the ivig kicking in. I am sure that as a parent one could swear by the fact that after the new medicine their child is doing fantastic and that is the reason for progress. That may be true. However, the POSSIBILITY exists that it could have been the ivig treatment that is actually the reason that their child is doing better. This is just my thought. My own scientific theory. Not meant to be threatening or judgemental. Just a thought.

My son's pandas doctor suggested that in the future we might try Rilutek. Has anyone had their child on this drug? What was your experience?

How long were you on steroids? A month? Longer? Shorter?

Did one ivig work for you or did you need more? What was your treatment under Swedo? How long did it take for you to heal?

I have never heard that before but be patient. Lots of kids have a reaction and it can be rough for weeks. The physical (fevers, throwing-up) will go away much quicker than the mental stuff. You can expect a little crazy for a while.

My son had the same problem. We put the medicine in a medicine cup that comes on top of Advil for kids and then gave him a straw to suck it up. For some reason, this was acceptable to him and it worked.

He is now 8 years old. Starting next week he will be getting high dose ivig (2gr) every 6 weeks for 6 months.

My son is the opposite. When he is out shopping or out in the city or out to dinner - he is so calm and happy. If you take him out anywhere - he is happy. He loves sitting at restaurants in center city Philadelphia and people watching. He could sit there for hours at outdoor restaurant seating and be totally happy. He does not like being at home. He always wants to go out. We have taken him to fancy restaurants and he is as good as gold. He lost his language at age five during his first and biggest pandas episode. He is still not talking much. He has lots of OCD and tics. When we take him out, his tics and OCD go away. When he first got sick he said, "I have got to get out of this house". That stuck with him. Also, I told him that he has got to talk and he said, "I am never talking again." I believe that the not talking and wanting to leave the house are major manifestations of OCD. He might not talk all week and then say, "Will you just get the apple juice." Or, "Wow, the moon looks really big." And then - that's it. He will touch my lips and say, "say words, Mommy". Dr. Latimer said he is trying to figure out how to get over his aphasia.

This was my 45lb 6 year old prednislone script 15mg/5ml 1st week - 6 milliliter once daily 2nd week - 4 milliliter once daily 3rd week - 2 milliliter once daily 4th week - 1 milliliter once daily.

Just curious for those of you whose children had plasmapherisis - Did you keep you child home from school for an extended period of time? How long did you wait after the procedure before you sent your child back to school?

Try taking her off the probiotic and see what happens. You never know what is coincidence and what is the course of disease but if her sleeplessness started after the probiotic I would stop it and see what happens. Or, continue for a week or so on the probiotic and see if it is just a head cold that is making her unable to sleep. You have to experiment. I ran out of probiotics over Christmas break. My boys went a week without them. Could very well be a coincidence but my older son's rages stopped. For a whole week he was happy and calm. I honestly don't think my boys need a probiotic. There guts are very strong and have no issues in the bowel department. I know that when I take a probiotic I hate it. It makes me feel very uncomfortable. It upsets my stomach. I have no idea why. It shouldn't make me feel that way but it does.

Get all the blood work done and then move forward as quickly as possible. I can't remember - did she try a month long steroid taper yet? Get the Lyme test too. Have your PA or pediatrician order the tests. I believe that your child's case screams auto-immune. The vast majority of Lyme disease does not present the same way as auto-immune disease. Some Lyme cases do - but it is not the common presentation that I know of in PA. Being from good old Pennsylvania, I know lots of people and children who have had Lyme disease. Remember - get your child tested for Lyme disease but move on if the tests is negative. CHOP thought your child had Pandas - that is huge. Did CHOP do a Lyme test too. Did they do a spinal to check for Lyme? The best advice I can give you is to move quickly. Get help fast.

It doesn't seem crazy high to me! Give it a try for a month or so and see what happens.

My 8 year old son goes through periods of rages. Just last week he was hitting me and crying. He also is drooling during these rages. As he is hitting me he was saying "I love you Mommy". I feel so bad for him. I pray all the time that Dr. Latimer can cure him and he can get his life back. His father is 6 feet 2 inches. He is really tall for an 8 year old. I hope he gets better before he gets really big. So far I can take the beatings. I don't think that he would react well to restraints. My son was the sweetest child before he got pandas. Such a charming, social, personable little guy. Always helped me around the house. Charmed the pants off of everyone he met. I miss him so very much. It is so hard to watch the suffering every day.

Funny story - I told my son when he was 4 years old all about the birds and the bees. I talked to him like I was talking about the weather. He is 6 1/2 now. Recently we were talking about a couple who are married who don't have children. My son piped up "Oh, I guess he didn't put his penis in her vagina yet." My advice to people curious about this topic is to tell their kids as young as possible. That way, there is no hang-ups, no imput yet from other kids, they don't yet have any taboos about the subject. It is so much easier. I also told him what birth control is and that he should wait until he is married and in love. I told him that when he is a teenager sex is all he will think about. I also told him that the internet has lots of sex sites and it can be scary if he comes across them (although we don't allow him on the internet except to check the weather forcast). I even told him what semen looks likes and not to be scared if it comes out of his body. I felt strongly that I wanted to be the one to tell him about all of this. He goes to Catholic school. I know that the church has strong feelings about birth control and sex but I am a realist. I don't want him to be harboring the Catholic Guilt that so many Catholics are well aware of... It is my hope that because he is armed with all of this information he will be smart and WAIT!!

I would not worry about this at all. Just tell you daughter that it is only for the house. There are bigger things to worry about than a silly pacifier. Big deal. Let her get herself off of it when she is ready. People who have rules for pacifiers, bottles, sippy cups, etc. don't have enough problems in their lives.

I don't know how a doctor can say it is a "one-time reaction". That seems crazy. How would they know? My husband is an anesthesiologist and I will ask him your question. I do know that lots of people can have reactions to anesthesia, not only kids with pandas.

It could also just be side effects of the medications. If you read the label it says aggression and anxiety may be side effects. I usually think of herxing happening right away after you take a medicine. I don't think herxing kicks in three weeks later. So, all of this could just be a side effect.

Good 'ol CHOP. And you saw Dr. Lam too? Dr. Lam thought my son had pandas but the titers were low so of course they assumed childhood schizophrena. You know - because that is what most 5 year olds have when they have a complete overnight personality change. Run run run from CHOP. You can try Dr. Legados (spelling?) at St. Christophers Hospital in Philly. He says he is open to IVIG and believes in Pandas. I don't know anyone who has actually seen him. He is a neurologist and his wait list is three months. His office manager is Marlene Roddy. Try calling her to schedule an appointment. 215-427-5506.

Is your son on an antibiotic? I remember when my grandfather did something very similar to that. He was sick. Turned out he had an infection. Maybe your son has a bacterial infection.

One child diagnosed very early-within a couple weeks (age 6). Total remission. Second child diagnosed after 2.5 years - still sick (he is now 8).

The aggression started about day 23 of azith. I took him off on day 25. It could just be pandas stuff morphing. I am not sure. But my husband wrote the script for azith not his pandas doctor. I would feel more comfortable if his pandas doctor wrote the script. We see his pandas doctor next week. Hopefully she can guide us better about what to do.

Thanks Kim. I know that it kills intercellular strep which is why I struggle as to whether or not to keep him on it. We have an appointment with Dr. L. next week and I will discuss it with her. My son was tested by one of the top Lyme doctors in the country. He is clean for Lyme, other tic borne illnesses and mycoplasma.

My son did this. It went away after IVIG.