Plum99

I don’t understand what the difference is, but Naproxen worked noticeably different for my husband (not diagnosed), while my daughter gets better results from Motrin, and antibiotics make a big difference with her too. But for my husband, naproxen has been almost like magic in lessening his rage episodes that stem from what I believe could be called intrusive thoughts. He also has terrible anxiety, symptoms not touched by naproxen. And I could be wrong about this one, because it has been a long time since she took it and was taking many other things at the same time, but I believe that I saw a drastic decrease in anxiety in my daughter when she started cromalyn sodium, to drink (there are other ways it is used). It is a mast cell stabilizer. I just wanted to add all these things because everyone seems to be so different and there are so many ways togo about it. For my daughter, I don’t think she could be without antibiotics and ivig. Another thing that helped my daughter, that boosted her mood right away, was low dose naltrexone. And lastly, surprisingly it took years before anyone thought of this one, was a few months on antivirals. Her skin rashes cleated right up after that too, so I guess we didn’t realize that she was dealing with a virus problem for years, on top of everything else.

Wombat, I have been thinking about this post this past week. My daughter had her first ivig 10 days ago. Usually, when she comes across one of irrational fears, she will do anything BUT talk about it. She will deny it, will be sent into some kind of episode, refuse to leave her room, lash out, it can go on for hours or ruin a whole day. This week she has been telling me what scares her, brushing it off within minutes, sometimes reassuring herself that it's not scary. It's still there, and I know most kids don't walk around having to reassure themselves that robots aren't going to jump out of television sets, but the change is still so great. I don't know what your treatment has been, but I just wanted to let you know that this has definitely helped us.

When my insurance wasn't going to cover Suprax, our doctor called in Ceftin instead. We never used it, because my insurance did end up covering the Suprax. My daughter responded well to it, but only for a little while. It kind of wore off, like every other antibiotic does. When it did work well, she was taking it in combination with Alinia and Zithromax, so I really don't know if it was the Suprax alone that I saw the results from. The way our pharmacy works, is they automatically call the doctor for a replacement when our insurance doesn't cover the medication. Maybe you could ask yours to do the same?

My daughter was afraid of the color red for months before I got any information out of her! To the point that she didn't want to leave the house, and was attacking other kids wearing red. Somehow it was also her favorite, and she would request things red, but would also go completely insane, have panic attacks, and be miserable.

My daughter is only 4. She was diagnosed with Pandas last year, when she had just turned 3. This is her biggest problem, and it's debilitating. It stopped with antibiotics at first, but not anymore. She will refuse to speak about whatever the fear is, and even deny it, but it will be obvious when she reacts with total insanity, sometimes so scared she gets violent. Some things I have been able to figure out and she would then admit and talk about were the color red, things that are square, a simple phrase. All things that no one would ever guess could bother anyone so much. She did have explanations for why they scared her so much. It seems like she only got over one, when a new one would take over. No advice. Just wanted to let you know that it's normal in our world.

Thank you so much

I'm looking for a doctor for my brother in Los Angeles. My daughter has Pandas, my son has Lyme, and my brother- I don't know what's wrong with him, but I need a doctor who will find out. His symptoms look like something I would describe as psychosis or schitzophrenia. I do not live near him, and his symptoms became severe not far off from the time my of daughter's. My mother will have to take him in, and I don't think she will have the fight in her to push someone to look into this medically. I need to point her in the direction of someone who will just do it. He hasn't had any kind of medical workup at all. I don't know what kind of doctor would be best. I don't think she will be able to get him to travel very far. Any suggestions or information would be appreciated.

I'm pretty happy to read this because my daughter is taking Clindamycin right now and we're in the process of setting up ivig!

I want to remove everything. My kids have high lead, but my daughter was in the 95th percentile for things like perchlorate and several other non metal things. She also gets rashes from bathing, even when no soap or shampoo is used, so the water must be irritating her skin. I want to remove everything I can.

I have heard about this, and tried to find more information online, but haven't been very successful. I don't understand how it works, or why it works, and I am interested.

I'm looking for advice on water filters, both for drinking water and bathing. I'm renting, so my options are limited. I'm feeling overwhelmed trying to figure out what I should be purchasing. Reverse osmosis for drinking water- but is there one that's the best that I can remove when necessary? And for bathing- is there a good option? It seems like the filters that go on showerheads don't get everything, unless I'm just not looking in the right place, or there's something I'm missing. I'm really not sure where the best place to look or purchase is. This is a priority for me, so I'm willing to make an investment in good filters, but I'm also poor.

I'm a teacher. I've gone on class trips with different schools. I have never worked where the medication policy was anything other than the teacher administering medication to the child. We always had to watch the child take the medication, initial each time medication was given- this included vitamins. Your school must have a more relaxed policy. Personally, I wouldn't like it. Not all children make good choices, or are able to handle the responsibility. Let them be responsible for getting their homework assignments, asking the teacher for help, and working on relationships with peers. Medication? I don't really think that's something that should be taken so lightly by the principal.

Moving.

EDS comes up almost every direction I turn when looking at my son's symptoms, but I always think there's no way another rare disease is connected to my family. Who diagnoses EDS? I didn't know Chiari was related, but that is something I brought up to his very unhelpful neurologist. He has not had an MRI yet. My daughter was diagnosed with Pandas, and she was put on a mast cell stabilizer for a little while because she had overnight allergies to everything right after her first recognized Pandas flare. My son has Lyme, a vascular birthmark, is double jointed, both children are constantly covered in bruises with no known cause. I have no idea what's going on anymore, to be honest, but I'm interested in any information you might have about the connections to all these things.

Wombat, It is really helpful to me, as a parent with a child who doesn't verbalize what's going on in her head, to be able to read this. I really appreciate how open you are in sharing, and it helps me understand the type of thing that may be going through my child's head when a certain line from a song, or color, or word sends her into an episode that may last hours. Thank you