Tamistwins

My children haven't experienced hallucinations yet I too have heard that is common. My son does tell me from time to time that he hears two people arguing with each other in his head. He says its the same voice, as if a man is arguing with himself. He can't make out what its saying, just sounds like gibberish. Has this happened to anyone else?

Hello everyone, We are in a bad place once again. I had thought that things were getting a bit better with my oldest son, but now all the ocd is back and worse. We are on azithromycin 250 mg 2x a day and I added omnicef 1x a day. He had a bicillin injection on Feb 4. I know there are people on here who have suggested I look into lyme. I sent bloodwork to igenex and will get results anytime from the18th-24th. Heres my question I contacted Dr. Jones in ct and they have availability on the 21st otherwise we will have to wait till may. I also have appointment with dr.b on the 23rd. Who has seen Dr. Jones? what do u suggest, think he can help even if labs not back? or should I wait. We have done ivig twice with dr.b end of Aug and end of oct. Insurance has yet to pay. We are tapped out and haven't found help. I also don't want to run from dr to dr and pay enormous amount and then leave in same situation. I have been to dr.t, dr.b, Scott smith, neurologist, infectious disease. I want my kids to enjoy life and I want to be able to enjoy them. This its a horrible illness and no help from insurance. Any suggestions? Thank you!

Hope this year is a better year, happy birthday!

Hi what is Dr. J's full name and where is he located? Thanks, Tami

I have 7 1/2 yr old twins who present very differently. For a long time I only focused on my son thinking that he had pandas. He presented with ocd, odd and minor things that i discovered were tics. My daughter had frequent urination and would go ballistic if I wouldn't take her to the bathroom two minutes after she just went. I used to think she just like visiting every public bathroom. She also used to line up ask her dolls and pretend to teach them.....I thought was cute. Time out never worked on her, never got to her just sitting quietly and then apologizing. Till today she will scream for hours, never giving in. They both have pandas diagnosis and have Cunningham scores showing pandas. My 19th month also has Cunningham score to show pandas range. I have no idea why they have pandas...i don't have ocd and no one in my family does. My husband is anal, likes to get things done immediately so theres s bit of ocd, but nothing major. The twins just had igenex so awaiting results. Wondering if will be negative if they have been on so much antibiotic and had ivig. Anyone know?

Awesome news, I hope it lasts!

Oy I feel for you... Don't knock yourself down. You are doing the best you can with such a difficult situation. I am one of the mothers who always ran to the doctor whenever my child was slightly ill and I am still in the same position that most of our forum friends are in. I have found that doctors want to be right.... They don't want to listen to what parents gut feelings are. My kids frequently tested positive for strep and then there were times where I was certain they had it and was told it was viral. How many times doctors sent us away with no treatment saying it was viral kills me. One doctor told me I don't need to run to the doctor for a cold...I think I know the difference between a little cold or when my child is really ill. Oh and then there was a doctor who told me that pandas is controversial. This is when I told her I think this is what we are dealing with. I brought my son in to test for strep when he was banging his head and was completely not himself. She said she doubts its strep, gave new this whole messed up speech as if she knew anything and then came back... Well its positive so we will treat with antibiotics! otherwise if was negative she would have sent me away with no help. I am so upset of all the times I had to pay these incompetent doctors for wasting my time! its not your fault and hopefully one day soon all our children will be helped by the research and doctors who really do care.

Hi Dedee, I would think an injection would get to the infection faster than oral Meds, however, with pandas children we are not just treating an infection we are treating inflammation and also trying to prevent recurren infections. Wow, think that's a run on sentence. In any event even with oral Meds it takes time to see results. I don't think we can expect to see huge results with just one dose. The longer shes been without Meds longer will take to get well. I see some worsening in my older son, some people say it could be herxing. If the infection getting treated u may see worsening before healing. Hang in there

My son doesn't seem to present with allergy symptoms, however on bloodwork he has shown elevated ige( allergy) we did allergy testing for the environment and he was basically allergic to almost everything. I think there its a correlation between elevated ige and pandas.

Oops I meant confusional arousal.

Thank you for your responses I will look up conditional arousal. I am happy to say that he went back to waking up just to drink and quickly back to sleep last night. I'm wondering if his behavior was related to a bicillin injection he got on Friday. He has never slept through the night, but acting up that way was unusual.

Wow, very interesting.... Thanks for sharing!

Hi it's 2:30 a.m. And my 19th month old just woke up screaming like a lunatic. I could do nothing to console him. Usually when he wakes up he likes to nurse or have a bottle and goes right back to sleep. Anything I offered him he did not want. He is in my bed and he kept trying to get off the bed. He was fighting me so strongly. He kept standing up and tried to walk or get down. Finally with all his screaming he finally calmed down, nursed for 2 minutes and lied down. He kissed me and patted me and said nice. All this after he woke so frustrated and hit me. I don't get it. this was no night terror, he was awake, calling me by name and saying down. He clearly wanted to go down. This is 2nd night this has happened. Anything similar happen to anyone else?

Hi my 3 children had a bicillin injection today. It stays in system for 3-4 weeks. I have another scheduled appointment in a month.

Not around cats and son can't get rid of mycoplasma

Not around cats and son can't get rid of mycoplasma

So sorry to hear your struggles. It really is so difficult and I empathize with you. I hope things turn around and you only see positive improvement . All the best, Tami

From my husband...just keep giving them antibiotic, this will solve everything.....me... Do u understand they have a medical issue...husband, yeah but don't tell me its not a behavioral issue too. It's discipline... They don't act like that with me. Ahhhhhhhh

such wonderful news and how wonferful your family must feel. i hope he continues to improve!

Its a good thing u were able to see the episode and diagnos for yourself. I'm sure many if not all of us have come to this diagnosis on our own before seeking out proper medical treatment. Unfortunately, we as parents have to be our own children's doctors. Hopefully one day soon doctors will agree with us parents instead of delaying proper treatment.

Hi Denise, So glad your appointment went well and that you like Dr. B. I would like to see your 4 pages of questions if u don't mind sharing. I could send u an email. How is your daughter handling being away from home?

Hi we really liked Bertuccis, they have good salads and fresh bread, pizza, even fish is good. Something for everyone. They give some PDA dough for kids to play with.

This was Sammy's story from the book Saving Sammy The Boy Who Caught Ocd by Beth Maloney. Beth has been working very hard to get the story out into the media and into medical schools. She did a great job thus far.

Dr. B treats with orapred, a steroid 2 days before ivig 2 days of the ivig and 2 days after. They also give benadryl and motion. Both my children did really well. There were no headaches or bad side effects.

Hi I agree with the other posts about not waiting to seek out care from a pandas specialist. However, it can't hurt to see a neurologist to perform simple tests such as an eeg and mri to be certain to rule out anything else. If not for anything else for your own piece of mind that there isn't any other underlying issue to cause these behaviours. Other doctors who aren't pandas believers will send u to other specialists who will waste your valuable time and money and at times looking at you add if u had two heads. I wasted a year going to a psychiatrist and putting my young child on ssri, treating just for ocd/ anxiety. Then I was sent to neurologist, all normal tests... But that's good to know and the best one yet was to see an infectious disease doc. I was sent to this doc by pediatrician even after we saw a pandas specialist because last yr my son had strep, mono and mycoplasma. The doctor was horrible even after showing all the bloodwork, going over a ll the ###### we were dealing with, documenting the endless positive throat cultures. He told me my son looks find on exam and theres nothing he can do for me. I shouldn't have paid him he was infuriating.