dcmom

We use source naturals liquid sublingual melatonin, which was recommended on the forum, ordered from amazon. Works well, kids don't mind it.

I do think nightmares can be an issue w/ too much melatonin. My 40 something lb daughter uses .5 mg, and my 70lber uses 1 mg. I think it is trial and error, and I would start low, see what the lowest dose that works is. It has been a lifesaver for us. It almost always works to get them TO sleep. Does not, I think, always prevent night waking - but we haven't had too many issues with that. I wish you rest.

I tend to agree with fixit- do what works.

I wI'll pm you

I agree with JAG. I believe there is pandas, Lyme and maybe for some lightening strikes twice. It is a no brainer, not even worthy of debate, that since both rely heavy on clinical diagnosis, that both will have false positive and negative diagnosis. We can judge by how OUR child does w/ treatment. And, it is certainly possible for both illnesses to benefit from the others treatment protocol, if by accident. (I just read somewhere how some autoimmunity is treated with anti malaria drugs- which could therefore possibly help pandas kids, and I think is also used in some Lyme coinfections). I do think there is one thing we don't like to talk about, but when searching for answers, we need to keep in mind: the pandas model, as defined by swedo is an autoimmune disorder- with at this time, probably no cure. How any persons course of autoimmune illness goes differs, and can be baffling- but that is the nature of autoimmunity.

My older is in a new episode- which I will post about eventually..... In the meantime, I was wondering if anyone has tried High dose IV steroid treatment..... Thanks!

Thank you.

I used what to do when your brain gets stuck with my, them 6 and 9 yr olds. They both loved it, and it helped a lot. I was initially concerned about the power of suggestion, but the funny thing is, even though they were in the midst of debilitating OCD, issues they didn't have seemed like unusual or silly things to worry about. The nice thing about doing it with a non reader, is you can interject something they do here and there. The book really asks the kids to be a detective to look for theiir OCD- which can be a fun challenge. It is empowering for them to name a behaviour OCD. The tools really helped my kids start to take some control and work on things. I was. Very surprised of how aware both kids were of their issues, and how much they wanted help under the anger. One of the keys is to go really slow.

Kelly Thank you- what great news. Enjoy them!!!!!

I would suggest Dr B in CT. We see DrL, but if I couldn't, I would go straight to Dr B. CHOP are close minded docs, that would rather stick to their comfortable theories than help kids.

I just ordered it- it looks great! Thank you!

Sounds like pandas to me. Funny, we get used to the little quirks, I notice, some things I have gotten used to- once I say them out loud or write them down, I see them for what they really are. Since the fear doesn't seem overwhelming, it is probably a good time to work on it with ERP therapy....

Yes. We have seen this countless times. For me dd, once the exposure goes away, she improves fairly quickly. I believe this was documented in the new paper, pandas a way forward.

I have two daughters with pandas. I found, for the most part many ocd things went away on their own. However, there were some issues that were stickier, and we needed a little ERP therapy to work through them. It was like, they were afraid of the fear. So if an activity had caused intense fear during pandas, they were afraid to feel that fear again (even though they weren't necessarily afraid of the reason behind the fear anymore). During that time, it was VERY easy to work on this, and it disappeared very quickly. I think during healing- is a GREAT time to get established with ERP. They learn the basics and the tools with much less fear, they see that they work, and they will then have them there if ocd strikes again. Great news! Healing takes time (a year?)- and you have to be very patient, as long as you continue to see things moving in a positive direction

We see episodes triggered by some viruses and colds, but not always. The one thing I noted in your post that is very unlike our experience are good and bad days. We have good times, and then with a minor blip or full blown episode, things go bad and stay there consistently until healing begins.

Joan- I have been trying to cut my forum responding in an effort to normalize life a bit. But, I just glanced and saw your post and had to write. I have no magic advice for you, other than hang on. If your son is responding to your illness- I think that will be short lived (that has been our experience). It is so hard when you are in the thick of it- it is just survival. You can do it. Getting help is a great idea. Even if you can get relief of other work, to give you time to clear your head, and continue to help your son. Maybe (if you don't do these things) you could hire a cleaning company (even just for a month), try to get grocery delivery, maybe some local family/friends could make a casserole for dinner for you and/or help with your other kids? I have a really hard time asking for help- but anything that could lighten your load will help the whole family. This will pass, he will get better. In the meantime- does he do ERP therapy? It might give him a sense of control and help- even to work on the easiest thing with very tiny steps, while you are waiting for his medical condition to improve. Have you tried motrin (didn't make a dent for us during full blown episodes)? Steroids? We found, during full blown episode- that lots of movie watching (thank goodness netflix online), and reading to them, saved all of us. You are not alone- we have all been there- it is unreal- but you do get through it, and life will be better again.

While waiting for test results and medical help- which I believe are key.... Is your son in ERP therapy? My very little daughter had/has bathroom OCD also, and avoidance (for as long as possible) is her way of dealing with it when it is strong. Since he is older, I would imagine he might be motivated to work on this with the help of a good therapist. I agree with LLM- I would try to get clear Lyme results. If they are negative, and Cunningham's anti neurals are high, however, I think I might move ahead with IVIG. It seems, however, that you will need to prepare for a possible worsening. It is so hard that we have no clearcut answers. I feel like so much time is spent waiting: waiting to see if this works, then waiting to see if that works- while in the meantime, our kids lose more time, and more of themselves. I firmly believe, if they are not in a halfway decent place, and/or not improving - we need to TRY something else. I am so frustrated that there are not more options.

Pandas kids can get dysgraphia. If you google it, you will see this encompasses a lot more than handwriting. Both of my daughters have aquired some of these symptoms with pandas, and they fluctuate depending on their "health".

I agree with Worried Dad. We have had insomnia, night terrors, fear of sleeping alone, etc. as symptoms of pandas. Our episodes have had different combinations of symptoms. Like there is some sort of "main menu" of symtpoms and each episode can choose anywhere from two to the whole thing. Very frustrating- would be easier to know exactly what you would be dealing with each time.

I have two PANDAS daughters, 7 and 10. Like Sammy, they had overnight onset, somewhat severe. They are both doing well now, although not 100%. My ten year old asked me (out of the blue) tonight, when she could read Saving Sammy. I am at a loss as to what I think (which rarely happens to me). Thoughts? Suggestions? Thanks.

omg. I have only had positive interactions with school personnel and teacher so this type of stuff floors me. I think- you need to go in confident: "this is what my daughter has, this is how it presents, this is what needs to be done." I would not ask them for advice. If possible I would have letters from docs (neurologist, psych, ped, whatever) stating clearly and briefly how pandas should be handled. My older daughter- pre pandas- and now a straight A middle schooler, wrote some numbers backward to mid first grade. She had an exceptionally professional teacher that year, who told me that it is developmentally appropriate to write letters/numbers backward to mid first grade, later in the first grade year you might talk about it. My little one is in second grade now. She mixes her b's and d's- and occasionally (when tired) will write a letter or number backward. That is a form of dysgraphia- which, for her, is caused by pandas. We (and her teacher) are not concerned. She reads, writes, gets all of the concepts, and does well in math. In early elementary- the only thing I think is important is to foster a love of learning, and their natural curiosity. Have faith in yourself. You ARE doing the right thing. In K- the most important thing is that they are happy! She will get her e's

We are not too, too far from Bethlehem, PA (and my SIL lives there). Do you have an idea of her protocol? PM me if you could

Ugh. I would get to the doc to have them check her out. But, I can say that my 10 yr old will sometimes have stomach issues with a pandas exacerbation. She may get diarrhea (usually only once per day, a few times per week). She does complain of ache right at her belly button (not severe pain). I think she has a combo of a physical stomach issue (what causes it, I don't know), feeling/focusing on this discomfort because of sensory issues, and getting worried about this because of ocd (fear of getting sick). It can turn into a vicious cycle for us- this is how pandas started for her. It clears up 110% when she is pandas free. We did lots of GI investigating, short of a scope, and she came up perfect.

Tmom- I agree, it is a constant risk versus benefit tightrope. When they are ok, it is hard to contemplate- when they are in crisis, little contemplation is necessary.

I have also had several in depth conversations with this doc, he is a strep expert. He is a lovely man- but not a pandas believer. What he , and a close friend of his and doctor have relayed to me is they are not satisfied that the research has proven the hypothesis of pandas, not emphatically that it doesn't exist at all. Unfortunately we as parents cannot wait for science and mainstream docs to catch up and treat our kids, Lyme or pandas, equally as controversial.