amy s

Yes, Dr. K did request to wean off psych meds first before steroid burst. He said start it after one week off meds. Thanks everyone for the well wishes. I will keep you posted. Regards, amy s

Ok, so we have a wonderful new pediatrician since moving back from Europe. (a civilian military doctor- if someone would like his name, please privately message me) who is going to do IVIg for us this Monday and Tuesday, using Dr. K's protocol. I am so nervous about this working. Things have gotten so bad with rages that my dd (7) is unable to attend school for now. Two recent suspensions and I just feel I can't continue to bring her back until she is WELL. It is so demoralizing for her and I worry about everyone else too! It is a horrible sight to see a child like that. If the IVIg doesn't work she will have to go back on some kind of psych meds, I guess. We are looking into homebound school with our district because we don't know how this will work (the IVIg). Has anyone else had to do this? I just feel our life is crumbling. I have not been able to work because of all this. I know I am preaching to the choir here but we are just sinking so low. I want to go back to work so bad and just have some sort of normal life. This has wiped me completely out. I can't even picture our life getting back to normal. We got the weaning done from the risperadol and zoloft a few weeks ago and some of the OCD stuff was still there at a subclinical level but the rages got out of control. But during the steroid burst the OCD was so good that her severe skin picking issues stopped and finally allowed all her wounds to heal in just that 5 days. Even the tremors were better. We noticed results from day 2 until day 6 from the steroid burst. Day 7 was horrendous with a meltdown that lasted from 1030am until about 315pm. I am still sore and have multiple bruises. She is extremely powerful when she gets like that. Our ped gave another steroid burst just to get relief until the IVIg this week. Everything that I read talks about the IVIg working for OCD and tics for kids with PANDAs but I haven't read anything about the other psychiatric symptoms mentioned. Does anyone have any good stories about that? She just recently went on Augmentin, she was on Penicillin VK for prophylaxis. She is such a wonderful kid. She's hilarious, smart, pretty and so caring and loving...normally. During the steroid bursts we have been able to enjoy her again, our family was finally able to relax a bit and laugh. Regards, amy s

www.neurorelief.com has a pandas/ocd panel which tests... Streptozyme IgG IgM Streptococcal M Proteins IgG IgM B-Cell Antigen IgG IgM Myelin Basic Protein IgG IgM Ganglioside GM1 IgG IgM Tubulin IgG IgM

(((((hugs))))) Pat, I'm so sorry you guys are going through this. I don't know anything at all about yeast issues or detox baths, etc. We are not there yet. My dd has been on Penicillin VK for aobut 8 months with no yeast issues. But we recently knew we were going to go with something stronger so she is now taking a Klaire Labs brand pro-biotic complex. It has 10+billion CFUs Multi-Species supplement. The probiotic in it are lactobacillus acidophilus and Bifidobacteriu bifidum. When I spoke to Dr K on the phone he specifically had me read that off to him and he thought that was adequate but also told me in addition to give a few yogurts each day. I hope someone on here can help. I hope you guys can talk to dr.K soon. Regards, amy s

Yes we had that big time and it was out of the blue. Confessions, constantly and none of them made sense. We don't have that as much these days.

Welcome cwmom, Thanks for sharing your story. I'm happy to hear that your son is doing good now. I know what you mean about what this does to your lives. Everything changes. My dd's first episode was August 2007 and I know I will never be the same again, even if she gets better. The whole thing is a nightmare...from the sudden onset and severity of symptoms to the medical community's reaction. I have a pretty big chip on my shoulder about the whole thing, just that we couldn't get help. We are getting it now, finally we have some hope and doctors that listen. Again, thanks for sharing your story. Regards, amy s

My dd has very severe rages too. She had a real bad one last night and they are very scary and last a long time. She looks like a wild animal sometimes. We also just have to hold her snugly until it is over because it is very unsafe for everyone. Usually she doesn't have them at home, but she has had a few lately as we are weaning her off risperadol before we do a steriod burst trial. Risperadol is the only thing that did help change the quality of the rages so far, but we haven't tried a whole lot of other things yet.

DeDee, what a nice thing to write. I almost felt like it was meant for me personally. I guess it is meant for all of us. Thanks for the reminder.

(((hugs)))) I don't know what to say. I hope all these kids get better and fast.

My dd was prescribed Zithromax 250mg daily for the next 6 months and weekly penicillin shots for 12 weeks plus she was given a shot at the office this week. We are very worried about the steriod burst making the lyme disease worse. I'll write more later, gotta go now.

My dd was just this week given a diagnosis of lyme, (plus mycoplasma, pandas, bartonella, several viruses) but the test results are questionable by other doctors standards. We were just given a prescription for the steriod burst but now I am scared to death to try it because everything I read says steriod use should NEVER take place with Lyme disease, that it causes the spirochettes to go out of control. The doctor who is expert at Lyme and knowledgable on pandas said absolutely do NOT DO a steriod burst and to wait on IVIg for 3 months. What do I do? I know it is pandas, or at least I think so. The sudden and extreme onset of OCD and the tremors, after a sore throat. In speaking to Dr.K just yesterday he did recommend (and he saw all the labs) to go forward with the 5 day steriod trial. My husband and I want to do it but we are too scared about lyme...and making things worse. My dd is out of control. We are in the process of weaning her psych meds. What are we to do? I don't think school will be possible for much longer. Currently the OCD is vanished but the behaviors are so outrageous and the emotional lability is constant and the violence during meltdowns has escalated to a very difficult level.

EAMom, that is a good article. Thanks for sharing!

Nicole, I am so sorry you are going through this. This sounds horrible. I can't even put into words how much I hate it. My dd is going through very similiar issues as is many parents on here. I just can't even believe that we can't get help for our children. Myself, I finally decided to schedule a telephone consult with Dr. K, it is scheduled next week. Maybe you should consider that too. Email him first to see what he says (in case you haven't yet). I'm sure if you have been reading this board for a while you know his web site is www.webpediatrics.com Good luck with everything. My dd saw a ped Rheumatologist yesterday and although they don't want to treat her themselves, they did say that it sounded extremely suspicious that she has pandas and did order some labs and said they will help with guidance to my dd's pediatrician. Maybe you could try that too. I don't know. Regards, amy s

Today was dd's first rheumatology appt. Her pediatrician wanted their input regarding IVIG and antibiotics, etc. They said 'wow, the evidence is pretty convincing that she has PANDAS' but they have never seen a pandas patient before in that clinic. They sounded like they felt that a steriod burst trial and IVIG were her best options for treatment and are going to call her pediatrician to discuss it further. They did say to stay on antibiotic therapy and didn't comment when I asked about Azithromiacin rather than the PCN that she's on now. I think they were taking it all in. I'm so exhausted. Aren't you guys? This is just overwhelming sometimes. The days that she doesn't have medical appointments or tests, I get called to rush to the school and take her home because of meltdowns (2 or 3 times per week). And if anything special is going on at school I have to be there just in case. I'm constantly having meetings with someone from the school. I'm just exhausted. Anyway, a question... in making her IEP they classified her as 'emotionally disturbed' rather than the one I wanted which was 'other health impaired'. I don't remember all the criteria right now but i didn't feel that she met the criteria that they chose. anyway, so I did take some issue with that but they said the services don't change. They are also trying a 'behavior plan' which I wonder how that will help. I mean, this is not like she is doing this because of no discipline. Anyway, I hope it helps. They are also getting a para for her full time and they will put her in the safe defense training. All her testing came back in normal range except of course the mental health testing that the school did.

I am so happy to hear about the progress of Gaby and worried dad's son!! This is good news! Keep the updates coming!!!

Intrusive thoughts for my dd was the main thing that brought our life to a screaching halt. These are examples of my dd's intrusive thoughts. 1. thought she was saying bad words thousands of times per day 2. thought that she was going to kill me thousands of times per day 3. thinks that she smiles when someone coughs 4. thinks that she smiles when my stomach gurgles. 5. thinks that she smiles when we pass a cemetery 6. thinks she sticks out her middle finger She NEVER DID any of that and it was very upsetting to her to the point of wanting to kill herself to stop the thoughts. Part of her ocd was the thought and then the compulsion was that she had to tell me. It was always in the same tone of voice too. And if we were in public or whatever, it didn't matter. It was a very pressured feeling for her to tell me. For example I could be trying to pay for something at a register and she would have to tell me. And with the coughing one, if she heard a cough, she would tell me 'mom, i just smiled when they coughed' and if someone else coughed before she got that sentence out...it didn't matter she had to tell me twice right in a row. Currently she is a bit better about those above ocd things, it's not entirely gone but much better. I don't know if the current medication she's on has helped or if we are at a waning period. But her other ocd stuff is horrible skin picking which just recently begun and an odd hand lick and touching motion. If she is having a bad meltdown she gets extremely violent, but she doesn't say stuff that is too bad at least yet. She will yell, 'you are a poopy head' or something like that.

Pat, How is your dd doing now? I hope so much that you still have progress! Keep us posted when you get a chance.

Buster, thanks for the article. It is quite good. Definately one for the folder that goes to the appointments with us!

My dd is right handed, and very poor fine motor control.

Jennifer, I thought it was interesting that your son had glomerulonephritis. When my dd was 3 (she is now 7) she had glomerulonephritis. Her titers at that time did not test positive for strep but it was attributed to other autoimmune causes anyway (she'd had a stomach virus earlier that week- with vomitting and diarrhea). Anyway, we believe she has PANDAS now. You can read her story under my introduction, I'm a new user of this website- forum so the post isn't too far back. I hope you and your son can get help soon. This is really hard. I know you know that, though. Hang in there. I wish this board didn't have to exist, but because it does so many people have a place to come to bounce ideas and to also see they are not alone.

Dd is a loud talker too.

My dd has a little bit of a raspy voice and can get down right hoarse very easily. As far as pronouncation, she has no problems and otherwise she is very verbal. Speech in general began early to normal age.

Pat, So good to hear your news about your child. Thank you for posting an update.

My dd gets headaches about once per week and they don't last very long. But she never had them before all this. I don't have to give her anything for the headache, because it always seems that it is gone pretty quickly after she first tells me about it.

My dd has a stuffy nose a significant amount of time too.