dcmom

acute disseminated encephalomyelitis This is the code Dr L used for pex. When I rec'd the letter of denial (after the fact) they called it pandas. Any thoughts?

Hi Kat- I feel for you, sleep problems are tough on the parents. It is hard enough to be patient, etc during the day- but you need some quiet time at night to recharge. My dd has pandas, and has had some minor sleep issues. We used benadryl a few times and it helped. I know someone posted that it may eventually stop working, or that he may eventually not get the deep sleep necessary- but- sometimes if you break a pattern it can help. I am wondering (if benadryl will work for him) if you could try it for a week, and then stop and see if breaking the pattern was helpful? Have you considered pandas for your son? I don't know much about TS, but all of the symptoms you describe in your post could be pandas. Just a thought...

Okay- I know nothing about TS- but stumbled upon this post. My daughter has pandas. Have any of you explored that as a possible cause of your child's tics? Hopefully a more experienced TS parent can chime in, as I know quite a bit about pandas, but not about TS...

For those who are homeschooling: Help. My dd has anxiety and school refusal with pandas. When she is well, she loves school more than any kid I have met. She has missed so much this year, first grade. She had a stomach virus, the flu, plasma pheresis and now a pandas episode. So she is on track to miss 50 days for the year, if things keep going this way. The teacher finally did send me a note this morning suggesting thinking about homebound instruction because she is starting to fall behind. I just don't know what to do. I guess I really have to meet with someone at the school. Has anyone done part homebound, and then going to school when they are well. I am sure that is not possible. If the steroids kick in, then I guess we will be okay for now. But if they don't then I guess I will have to look for another option. Do you homeschool or homebound? How are the homebound teachers- quality? I guess that would at least give me a little break in the day to do some stuff around the house... If you homeschool- do you keep a type of schedule? What do you do for socializing (if your child is well), dd would definitely need that. I didn't think it would get to this.

Mati's mom- I am interested in the strep in the gut issue. How did you know- is there a test? What were his GI symptoms? How do you get rid of it, antibiotics? thanks

Ilovedogs- why did you decide he doesn't have pandas. I mean if it is not TS- then why not pandas. And that they haven't labeled it ocd, my daughter had TONS of anxiety and some ocd- but her psychologist definately felt it was not classic ocd. Her "issues" would totally morph between weekly sessions, also. I wish you the best...

Coco- so he ultimately thinks IVIG is the answer to pandas. How many treatments, or for how long does he think your child will need monthly IVIG? Did your daughter have an immune deficiency?

ilovedogs- It is interesting what you said- because my daughter's therapist did explain that a lot of ocd is the inability of the brain to filter certain thoughts...

bronxmom2- thank you for posting this. Very interesting. I fear that he is right (although I like pex because I really think it got us to a true baseline) that pex is not permanent. While I am not ready to jump on IVIG- I am not ruling it out. I could easily get to CT.... Please keep me posted on your progress with him. I am wondering what he will use for insurance, as my dd's bloodwork (except for Cunningham's test, of course) has all been normal. Do you know what he is looking for? We already were tested for lymes. You know, my gut has kind of always told me our kids need both: pex to get rid of all bad antibodies and back to true baseline, and then IVIG, maybe not monthly but a few times per year, to keep them healthy

Bonnie- My daughter had lots of anxiety during pandas episodes. It had different forms: seperation anxiety, some social anxiety, and for most part just overall generalized anxiety. It is one of the hardest things to see. We saw a psychologist, who mainly gave me ways to help as her mom. My dd is young, 6, 5 at the time. The overall ideas we discussed were making sure we helped her to feel secure. We would do things that cause anxiety in baby steps, and try to be very positive about it. We would ask dd for ideas on what might help her, we used rewards. It was hard. As soon as the antibiotics started taking the edge off of the anxiety, some of these strategies worked. Although my dh was supportive, and realized what was going on, he could at times default to the "your trying to blame everything on pandas" thing. This was not the case, though. Also, by nature, he would not see everything. He works a lot, and I am a SAHM, so most times I do: morning routine, school drop off, meals, homework, extracurriculars, doctors appts, bath and yes, bedtime. (Well when I list it like that, it sounds bad- but I guess he does bring home the bacon...) These were the events that usually brought about some anxiety. So, if it is not pandas, I think I would try to find a really great psychologist, that maybe only you (and occasionally dh) see, to help you strategize. It is also nice to have a somewhat impartial shoulder to cry on sometimes. If you have not thoroughly investigated pandas, I will tell you: it did take my dd about 30 days of daily zithromax to see an improvement (10 days did nothing)- so don't use 10 days of abx as your only criteria for counting out pandas. I don't know your story, but just mention that because you noted the antibiotics in your post. I know there must be some great books out there too.... Hang in there...

I guess everyone knows that Julia is having some issues post pex, thanks to a bout with the swine flu. She started having minor pandas issues on Sunday, a day after recovering from the flu, mostly: irritability, whiney, tears at the drop of a hat, short fuse, very pale, somewhat spacey, separation anxiety, loss of appetite. Everything seemed to be slowly spiraling down. We started a steroid burst yestarday. I am cautiously optimistic, because there has definitely been improvement. She did her first steroid burst in August- it worked well, although exposure to strep lost us a little of that progress. So my question is, how many times per year can we do a steroid burst safely? Has anyone had this discussion with their doc? I mean, had we treated aggressively with steroids all along (we didn't), she probably would have had at least 4 so far in 2009.

Meg's mom- Julia, and her sister, both have lots of anxiety about blood draws. Once we started using the prescription numbing creme- it was a lot better for Julia (for her it was more about the pain). It hasn't helped her sister as much, she reacts less about the pain, and more about overall medical anxieties. The other thought, was that we ordered the IVIG bear from Baxter for Julia before she went for pex. It comes with a cute stuffed bear, and lots of medical supplies, including all you would need for the blood draw (alcohol wipe, rubber gloves, rubber tournequet, etc) Julia loved it, and played with it for a week straight pre op, and a week straight post op. I know she is quite a bit younger than Meg, but it was great therapy. If you think it would be helpful, you might even be able to put together your own kit with help from the doc's supply closet. You can do this- you have gotten through everything else. Its no wonder these kids are left with some anxiety, we end up poking and prodding them so much when they are at their worst of times

Ellen- Would you please post about what Dr T says about the IV antibiotics. We are having some issues post pex as well... Eileen

Megs mom- Thank you for that post. I like the "loop", and will file that in my brain in case we may need it. The books tell you to talk about their intrusive thoughts and maybe in a funny way- but I could never figure out how.... This might not work during our darkest days, but it sounds promising for the spiral down, and the climb back up

Melanie- I am so happy for you and Danny. Dr T is great- I am so glad he has opened his own practice. Please keep us posted... Eileen

Momto Cole- get in touch with Kayanne- she felt the prednisolone was not the same for her daughter as prednisone- just if that is the case, I would get him back on the reg prednisone. For my dd I crushed up the pill and put it in something- reeses pb cup, spoonful of yogurt, etc.

peg- It is Georgetown University Hospital in DC. You and hubby could probably stay in the hospital with her. Dr Latimer's consult fee is pricey (same as all specialists in this area), but I also was able to get a good percentage reimbursed as out of network. Not many hospitals do the pex on peds so routinely, your daughter will be in good hands. I would push Dr Latimer on the possibility of pex with ivig. And then the option of follow up ivig's in your area. Dr T once mentioned to me that extreme cases he has seen, had both pex and ivig. If need be I would consult him, and have him and Latimer talk. If you are going to do this- you want it done right! PM me if you want my phone #, I live in DC... Eileen

Peglem- Although Dr latimer doesn't take any insurance, Georgetown was in my network, which meant all of their doctors were. You will only need to see Dr Latimer for probably one appt- if you can bring records from Cunningham, plus med records showing abx, etc. You then go to the Gtown docs, and really don't need to see latimer again... I wish you luck- try not to take no for an answer

But do so enjoy communicating with those who really understand...

Brooke- have you been to an immunologist with them? It sounds like it might be worth a try? If you have, who do you see? thanks!

Brooke- I am interested in your older son. I have been suspecting pandas for my supposedly non pandas dd for a while. She would have had onset at the same time as younger pandas sister. Her issues have been much milder, but there. Mostly anxiety, some increased belligerence and anger, fear of germs and illness, loss of appetite, daily stomach aches, loss of interest in extra curricular activities, becoming over sensitive to classmates. Her Cam Kinase was normal 109 ( about 9 mos after possible trigger), but her other numbers from Cunningham are on the high side. We started her on zithromax daily. I know I have to wait at least 30 days to expect anything (as I always give this advice)- but it is hard. If it is pandas, hopefully we will see some improvement with abx and possibly a steroid burst next.... if not we will probably need to seek help from a psychologist at some point. I really don't know what to hope for. All I know is we were on easy street as a family, until strep turned everything upside down Jan 09. We are all still reeling. Did your boys develop this at the same time? or just diagnosed at the same time?

Brooke- Do both of your kids have pandas? I have one definate, and one that if she is it is very mild....

Hooraaaayyy!! Good news that she is doing so well. Please keep us posted, it gives us all hope ....

My ent told me he has seen a paper about a boy with pandas that cleared up after T&A. I always wonder about these studies, though, because I don't think they follow the kids for very long...

I would really be curious (peglem?) if anyone has info on UHC approving IVIG for pandas.... It is certainly something we are considering down the line...