Wilma Jenks

We are headed for IVIG. We are waiting on blood tests. Dr. B. said do steroids in the meantime since the OCD was around the clock and severe. Dr. B. said bring her to the E.R. room, but she is starting to calm down.

Ok...day three on steroid burst. Already she has broken 2 pairs of my glasses. She is screaming that she does not want to get old. This is something that she has complained about since she could talk, but it is coming back big time since starting the burst. I emailed the doctor, but I like 2 bounce it off of you guys too. I really don't want to stop this burst. I feel like I don't have many more things to try. She is really agressive with me. She is trying to stick my finger up the dogs rectum. Sorry, but I need to be completely honest. She get super odd symptoms.

getting more mean every day. very grumpy. complaining of not wanting to grow up. can't get her to sit with tutors. i don't want to give up on this stuff though. i want to give it a REALLY good chance. should i report these symptoms to Dr. B. or is it not necesssry yet? it is only day 3...

Take 3 tablets by mouth once daily for 6 days - then take 2 tablets by mouth once daily for 4 days - then take 1 tablet by mouth once daily for 3 days. They are 10mg. tablets. Anyone done it this way???

9mg. of melatonin don't make a dent in her insomnia. i have tried smaller doses too. it use to work but stopped a few months ago...it really seems like when we added in the seroquel, things went totally bonkers. not possitive though.

she had severe ocd induced insomnia since birth. she NEVER EVER falls asleep. i am praying that the steroid burst HELPS THIS. right now she is a mess. the ocd is so severe. i just don't know how much we can all take of this.

So can things look really bad at first, with no relief in sight? My child keeps saying the same sentence over all day long. All through the night. It is really taxing on the family. Did any of your children have severe sleep/insomnia?

It's the second day of the steroid burst. I am looking for severe OCD to subside and for her 2 fall asleep b4 4am in the morning. I don't see any improvement yet. Is it way too early or should I see some good happening? This family needs sleep. Ohmygosh...when do we get some relief. Please tell me that this stuff takes awhile.

she put her pajamas on for the first time in 11 years and said she was feeling a bit tired tonight. this is after one dose of the steroid burst. too early to tell, but why not celebrate the little good news that i have. thanks everyone.

I have tons of junk food. Do you think I should see the OCD get worse? with the steroids?

Gave the first dose of steroids this morning. She is starting to get aggressive. Whipping balls at my head, sticking things down her pants and pretending she has a penis.. She is complaining of her body being on fire, and she is washing her hands even more....Perhaps things look worse b4 they get better. Thank God for anxiety medication!!! LOL

Is it possible that I will see a very bad reaction at first??? Usually she flips on most meds, but I want to stick this out as long as I can. What did you guys see? What kind of reaction. I am sure all kids are different.

Pharmaicist said take the prednisone with food but she won't eat cause she doesn't want to get her mouth dirty. I am even trying cookies and icecream. I gave the med. anyway....Ya just never know if what your doing is the right thing. Ugh!

She has been up for many night until 3am with severe OCD and distorted thinking. Starting the burst 2day. Please keep us in your thoughts. Something HAS to work for us!!!! It is really time!!!

thanks so much and happy mothers day to a wonderful mom!

My 12 is almost 100lbs. How much benydryll would you try giving 2 get her to sleep. Severe Severe OCD that keeps her up until 2am every night?

I keep hearing about all of these things that make IVIG easier. Mortrin, Abx. benydryll, water. The only thing that does not make my child violent is WATER. Man, why is she always so different then the rest!!! Nothing has helped!!! I am sitting here with a bottle of Prednisone, and NOW I hear that it could cause her to get her period and that is a bad thing!!! So sorry for all of my confusion, but it IS CONFUSING!!! and THIS IS THE ONLY place I have 2 vent, so I am venting!!!.

I didn't mean menstuation made her worse, but is doing IVIG a bad thing when she is just about to get her period?

someone mentioned that the steroid burst brought on their child's period, and things got worse when the period came. not sure if i have this exactly right. i am thinking of just going right 4 the ivig and forgetting the steroid blast. i was going to run this by dr. B, but was wondering if anyone ever spoke about this to him and what his feeling was. thanks

I am really concerned about doing abx. after IVIG. She has reacted so wildly to the ones we tried. I wonder what happens if she can't take them?

how long was she on the prednisone?

My girl just turned 12. She has had breast for three years and has had signs of getting her period, but it never comes. Is this odd? and is this common in PANDAS?

My child's psychologist wanted us to go to the meeting, because it was all about microbes, and she felt it had a lot of similarities to PANDAS. I absoulutely keep thinking of the Lyme component. I need 2 really feel sure that it is not an issue before the IVIG... but how many times do you keep testing and looking for the Lyme? Seems like it could go on for ever. And Dr. Beal said you may never know for sure. It is not clear cut and very confusing for me. I don't think my girl is going to let me draw blood too many more times. She is at the end of her rope. Don't blame her of cours. I really have to pick and chose the labs I do at this point. Advice always welcome.

I went to a Lyme meeting today and the lyme people never heard of Dr. Beal. Isn't he a pretty well known Lyme specialist? These people seemed 2 know their stuff too! I was surprised.

why is it that horses seam to get better diagnosis and treatment for Lyme? Perhaps I should go to my vet!!