pixiesmommy

She did an outpatient stay for 11 days last summer in the hospital herself, so you aren't alone! She has NOT had a course of antibiotics, and the reason for that is that we can't get any dr to treat her for PANDAS or diagnose it. We have a team that we have assembled otherwise and been very pleased with, including a therapist who does some OT work with her as well, a psychiatrist, a pediatric neurologist who is very experienced and renowned (locally at least) with his work with Tourettes and tic disorders, and our pediatrician. Each of them has heard of PANDAS but claim to not know much beyond the fact that it is a controversial diagnosis. Having said that, they have not been discouraging and the all of them, with the exception of the neuro, are aware that we have the appt with Dr K next week and are anxious to hear what he has to say and seem to be on board with whatever treatment he can provide for her. I particularly trust our ped and always get his opinion on any treatment any other dr suggests for her, as I'm sure I will run Dr K's plan by him before committing to anything. The appt is actually on Wednesday and I am beside myself waiting. We've been struggling for years, each year progressively worse, with very little answers. It feels like moving through mud sometimes to get even the tiniest thing to happen- finding drs who actually hear us, making progress in any way, etc. But suddenly it feels as though things are coming together. I hope that he really can give us some answers, or offer some hope. I certainly am glad I found you all. We have been telling drs for years now that she is not only mentally ill, but it corresponds to her "random, unexplained" fevers and no one has been able to offer us any suggestions. My husband and I spend many hours each week researching for ourselves and luckily one night he came across PANDAS and this board, and in that moment and the weeks that followed as we educated ourselves about it, things finally seemed to fit together.

Just found out that she has been wetting during the day and hiding it, as well as wetting a few times at night. I knew about two of the daytime wets, but they were throughout the summer and thought she was just busy and didn't make it in time. I had no idea it was so frequent!! She has a shoulder spasm from the Abilify and I thought it may be related to that (spasm), but the psych doesn't seem to think so. Ped ruled out infection and said he thinks it is time to see the neuro again and that it is either related to the illness (which they are calling Bipolar; we don't have a PANDAS dx yet) or related to the meds, or otherwise. If neuro turns up nothing, then he wants us at a urologist and maybe some sort of OT for her to re-learn the sensation of having to urinate. Apparently she is not feeling the urge to go. In fact, when we went to give the specimen at the ped, I asked if she had to go and she said not at all, then overflowed the cup++ so something is going on!! Also, on top of that, she is refusing to eat anything but carbs. The ped and psych both think it's "classic Bi-polar" and the psych told me to re-read The Bipolar Child, but didn't otherwise seem concerned. This is in conjunction with her ongoing refusal to drink unless we practically force her. No one seems overly concerned, but food and water feel like a full-time job now. It seems her headaches have also increased since the dietary change and she's definitely seeming to "crash" energy-wise more often as well. I'm trying to hide protein anywhere I can, but she picks everything apart and will leave any protein and just eat the carbs. She's also complaining she's hungry constantly. Despite this, she is gaining weight and the ped says she is right where she needs to be on the growth curve, still a tiny 25% for weight and height, but she has gained 12 lbs in a year and most of that in the past 3 months. Her waist has literally DOUBLED in size. She does not even look like the same child. It is the biggest growth spurt she has ever had, and maybe it is perfectly normal, but it seems odd to me. Of course, the Abilify since Dec and almost 2 months of Prozac could also factor in. She doesn't seem obsessed with her weight, which is good, but she is very sneaky and I have to watch closely so as not to overlook something. I'm terribly worried about eating disorders with her for some reason- just a gut feeling. ETA- she is 9 yrs old Anyone have experience with either of these things?? I am increasingly in the dark!!

Pixie also complains of headaches, but they never result in vomiting, etc. I find that she will not drink unless we are really vigilant about making her, and I wondered if they could be dehydration-related. I read someplace that most headaches are from dehydration that you don't even realize. Is he on any meds? The psych just ran a panel on her checking pituitary, etc to see if maybe the meds were causing a hormone (prolactin) increase and thus causing the headaches, but that was ruled out. Ped said another visit is in order at the neuro for us, but also because she is having some urinary issues that can not otherwise be explained. Have you had any neuro testing done? A CT, etc? Could it be hereditary? I started having migraines at 7, but looking back I wonder if I didn't have something else going on as well since I was sick, esp with strep, quite a lot. Very strange how all the pieces of the puzzle start to fit together and yet it is all still a mystery. FWIW, Pixie's tics and other PANDAS behaviors don't go away during her bouts of headaches, often it is the reverse. She also tends to complain of stomach pain and leg pain around the same time as headaches as well, so hers is obviously somehow related.

Pixie was accepted into the study and we got the paperwork and vials yesterday. I'm not sure if she is having a flare-up right now or not. She is complaining of mouth sores and sore throat, headache and stomach-ache, but she is also reacting to a med change. Also not seeing rages from her, but her SPD is definitely through the roof. We have a regular ped checkup for her on Friday and I plan to get him to run a strep test just to check. Is it bad that I'm almost HOPING it comes back positive so I can go ahead and run the bloodwork? I know it doesn't have to be positive necessarily to run the bloodwork, but I guess I want to be SURE we're getting the blood drawn WHILE she is in an episode. Hers are pretty constant (although her "unexplained fevers" are more rare.) She typically runs cold and she was 99.1 today which is high for her, so I'm pretty sure she is starting... if I'm sure by Friday I will prob have the ped do the draw there if they will. Did I just talk myself into it?

Oh, that reminds me that epsom salt soaks are supposed to really help. You're supposed to start with a small fistful and work your way up to about 2 cups per tubful of water. I've read great things about it's detoxing and relaxing qualities for both chemical-sensitive kids and ADHD.

Don't be silly- all the acronyms can be confusing! CLO is Cod Liver Oil http://www.ehow.com/how_2340544_take-suppl...s-syndrome.html

Just curious if we could put everything that everyone is doing in one thread. I see lots of various references in other threads, but it would be nice to have it all together. So far we are: Very scheduled and structured, with wall charts, calendars, lists, etc (helps transitions, helps w/OCD and ADD) Feingold (apples and dyes are big aggression triggers for her) CLO (just started a week ago, twice daily- heard it can help with tics) Therapy w/psychologist who also has some background in Occupational Therapy (to help with everything, OT for SPD/SID) Psychiatrist once/month for meds (reduced now to Abilify 3mg/day) My daughter is almost 9 is diagnosed with Tourette's, OCD, SPD/SID, Bi-polar, and possibly ADD. She is also extremely gifted. She does not have a PANDAS diagnosis yet, but we hope to get one soon from Dr K. She was hosp for 10 days last summer for severe aggression toward parents and baby sister. We've suspected petit-mal seizures due to "zoning out" and limp body at times, but that has been ruled out w/48 hour EEG. She runs random fevers, sometimes with positive strep but no other symptoms (never shows on quick strep tests, only the 24 hour ones) and one ped thought she has Kawasaki but that was ruled out with an EKG. She's had workups for Leukemia, Lupus, seizures, Kawasaki, allergy tests via scratch and Meridian Stress Test (MSA), testing for giftedness/learning disabilities/Asperger's, etc. We have done urine porphyrine tests run, and her thyroid checked. So far nothing seems to significantly help, nor do we ever get any answers. The closest we have ever come to an answer was once we ran bloodwork when her fever was 104 for a week for "no reason" and neg strep test, and the ped ordered bloodwork and her SED rates were off the charts, but then they took them when she was NOT running fever and they were a high normal. The ped refused to believe it was anything other than a lab screw-up and would not order more bloodwork when she ran another high fever, saying there was no reason why her rates would change with fever. We have since changed pediatricians, obviously, because we disagree and feel it was not a lab error.

In my sleep-deprived state, I mistyped her meds- we WERE on Zoloft, but that was changed to Prozac, because the Z was making her manic. We saw the psych yesterday and he took her off the Prozac b/c it was not tics we were seeing, but muscle spasms. He put her on a med to detox her liver and decreased her Abilify to 3 mg instead of the 4.5mg she was getting. He (thank goodness) wants to see her on as few meds as possible. We told him about an increase in bedwetting (and some day wetting) and he had no answer. We are going to our regular ped on Monday to rule out a urinary infection, but I suspect she is headed for a flare-up (her temp was slightly elevated yesterday as well.) He is excited to work with Dr K as well, which is great news. We see Dr K on the 12 of Aug.

My daughter also has tics (and lots of other symptoms of PANDAS) and leg pain. Hers is not as severe, but she does complain of stiff achey knees, particularly behind her knees. She started complaining of back pain and leg pain when she was 3, and we have had lots of bloodwork but no resolution. We see Dr K on the 12th and Dr Cunningham emailed me this morning to accept Pixie into her PANDAS study as well. I'm hopeful that we get some answers. Sounds like so many of our kids have unexplained similar issues. Hugs, Manda

Thinking of you. Hope she tolerates things well and you are home and on the path to wellness very soon! -Manda

Without having read the other replies (I'm sorry- short on time at the moment!!), my dd9 is on Abilify 5mg and Prozac 2mg. I read the first post and ref to Prozac, and just wanted to say that while our psych felt that Prozac would help with tics, we have been on it a little over a month and the tics have not only INcreased, but now in addition to the finger flicking, sniffing and eye-blinking, we have a shoulder-shrug/arms over head stretch/head toss tic. I can't say for sure that it was CAUSED by the Prozac, because as we all know, tics ebb and flow, come and go, but it seems awfully suspicious. Also I have seen NO decrease in her aggression, etc while on the Prozac, but she is more awake (Abilify was zombifying her) and now she is having potty (pee) accidents day and night as well. ALL since the Prozac. UGH!! We go back on Friday to the psych and I'm curious to see his take on whether the Prozac has anything to do with the changes. Just my 2c! Hope to catch up with the rest of this thread later. Manda

We saw Maeve O'Connor at Carolina Asthma and Allergy (in their Concord office) about 5 years ago, before I knew anything about PANDAS, and she was fantastic about pursuing whatever tests I asked for and answering my many questions. You might try them if you can't find anyone else, or maybe they can refer you.

We finally exhausted all other options and are going ahead with exploring whether or not PANDAS is the right diagnosis. My dd9 is diagnosed with all sorts of things- OCD, ADD, SPD, Bipolar, Tourette's... and yet there is no explanation for the random fevers she has. We've had Kawasaki EKG, immuno bloodwork, urine porphrines, etc etc etc. and no one can tell me what is going on. My DH found this forum and info about PANDAS a few months ago and we called Dr K and set an appt for mid-August to get an evaluation. In my heart of hearts I feel that she does have PANDAS. She's has strep SOOOO many times in her short life. The dr who removed her tonsils when she was 4 said they were some of the biggest and yet most scarred from infection tonsils he had seen in his entire career. So my questions are- She is on low doses of Abilify and Zoloft for anxiety, tics (not that they help), and aggression (they do lessen to an extent). Can she continue these meds while receiving IVig if that is the course of action we want to take? I see that some drs premed with Benadryl, which reacts with Zoloft according to the prescribing insert they gave us. Also, will Dr K prescreen to see if she has IgA? I see that you can have bad reactions if you don't have IgA. Does he test for kidney function or do any prescreening tests before administering the IVig at all? We have had an MRI but it was over a year ago, EKG was 2 years ago or more, no bloodwork in a year probably. Is there anything I should be doing to prep for the office visit or the IVig in the meantime? Questions I should ask that I'm not thinking of?? Thanks in advance. I wish I could share more of our story (and plan to) but I have a nursing baby in my lap and typing is difficult. Manda