Michele visit with Dr. Latimer

[michele]

Another bad day out in public today. He was in a rage and throwing tables and chairs when I wouldn't give him what he wanted, kicking and hitting his sisters when they wouldn't move from the seat he wanted, pushed the baby down. Do the steroids cause any of this? I gave him 30 mg yesterday and today? I mean he was bad before this but I am so embarrased that I am avoiding people who know me. He was throwing rocks and screaming at me and says he will run away and live with my inlaws. He says he wants out of this house. I am so confused. Isn't there meds that can stop these rages? The ones we are on are no helping, or are they making him worse? At what point do the steroids kick in and show improvements? Did it take time or was it right away? I feel so sick right now. I can't control this kid anymore.

 

I have been thinking about you and so glad you came up with a plan. I think it is also good that Latimer seems to be tayloring each treatment recommendation to each child and making sure that IVIG and PEX are truly going to be beneficial before proceeding with them. She does not appear to have a cookbook response but is considering all factors. I also think it is interesting that she wants to maniupulate his meds. My guess is that as head of Neurology at Georgetown she saw a lot of extreme cases and may be very helpful in her recommendation to tweeking medications.

She offered us steroids but offered us a three month trial which she felt would only be temporary and then we would be looking at PEX vs IVIG. She felt my son would need multiple treatments with IVIG vs 3-4 days of PEX. My son is doing great since the PEX and she was right on with the recommendation. I still see occasional rare tic and chorea movement but they are fleeting and last only a millisecond. He had a little seperation anxiety the other night but it was manageble. He is 95% now and getting better each day. His case though appears to be sydenham's which has a clearer treatment path. She also recommended antibiotics until adulthood (maybe up to 25).

I know it is frustrating to not have gotten the IVIG but my guess is she listened to everything you said and wants to make sure it is the right thing. I also think to see his response to the steroids will let you know if proceeding with IVIG will be the right course. I know there are a lot of different ways to do a steroid taper so I think the one she perscribed sounds good. Please call me if you have any questions.

Claire

[dee45]

Michele,

maybe you should call Dr.Latimer. i know last year when I was on steroids for a respiratory infection my moods were all over the place. i would give her a call. Keep me posted. Hoping things settle down for you.

 

Deanna

[Guest asaxon]

Another bad day out in public today. He was in a rage and throwing tables and chairs when I wouldn't give him what he wanted, kicking and hitting his sisters when they wouldn't move from the seat he wanted, pushed the baby down. Do the steroids cause any of this? I gave him 30 mg yesterday and today? I mean he was bad before this but I am so embarrased that I am avoiding people who know me. He was throwing rocks and screaming at me and says he will run away and live with my inlaws. He says he wants out of this house. I am so confused. Isn't there meds that can stop these rages? The ones we are on are no helping, or are they making him worse? At what point do the steroids kick in and show improvements? Did it take time or was it right away? I feel so sick right now. I can't control this kid anymore.

 

I have read that steroids can cause this; however, my daughter with suspected PANDAS has very similar rages, without any prendnisone treatment. We suspected an adverse reaction to Zoloft, but reducing the Zoloft doesn't seem to help (it doesn't seem to help the OCD, either, so we're considering weaning off it entirely).

 

Hang in there. Maybe you'll have a better day tomorrow.

 

-asaxon

[EAMom]

Hi Michele,

 

We did a 6 day burst earlier this month b/c our dd was entering another exacerbation (after getting the flu). For us it took about 2 weeks to see an improvement.

 

I heard that most people will see an improvement 3-10 days after starting the steroids. But, for some kids it might take several weeks. How long has your son been on the steroids? I would let Dr. Latimer know what is going on....but also try not get prematurely discouraged.

[michele]

Did some of you see your kids seem more enraged in the beginning on the steroids? She is giving him 30 mg a day this week. I am trying to remain hopeful. Also he was anxious and irritated before we started the seroids since we were out of town. Today will be day three of 30 mg. I may have to keep him home.

 

Michele

Hi Michele,

 

We did a 6 day burst earlier this month b/c our dd was entering another exacerbation (after getting the flu). For us it took about 2 weeks to see an improvement.

 

I heard that most people will see an improvement 3-10 days after starting the steroids. But, for some kids it might take several weeks. How long has your son been on the steroids? I would let Dr. Latimer know what is going on....but also try not get prematurely discouraged.

[P_Mom]

Michelle,

 

I do know that some parents did see that negative effect in the beginning....hang in there...you will hopefully see remarkable results. My son is basically symptom free right now after his steroid burst. I haven't seen him this good in over a year. I did not see any negative changes in him on the steroids...but, like I said....I know it can happen....try not to get discouraged. If it gets too bad, call Latimer and ask her. We did not see improvement in my son until day 8.....3 days after the burst ended. (we only did the 5 day at 30 mg a day)

 

Kelly

[Ellen]

I agree with Deanna, that maybe you should call Dr. Latimer. Also I was recently speaking to my son's DAN doctor about the possibility of him going on steroids (our appointment to meet Dr. Latimer is next week), and she told me that some children can get hyper on steriods because they can cause or aggravate yeast issues. Her advice to me was to contact her after our appointment next week if Dr. Latimer plans to try steriods. The DAN doctor would increase the probiotics he is on and make some other adjustments with his supplements before he begins any steriods. I was just wondering if your son was on probiotics now or should be while on this steriod burst. Sorry you have been having a hard time, and I hope things begin to turn around soon.

 

Ellen

 

 

Did some of you see your kids seem more enraged in the beginning on the steroids? She is giving him 30 mg a day this week. I am trying to remain hopeful. Also he was anxious and irritated before we started the seroids since we were out of town. Today will be day three of 30 mg. I may have to keep him home.

 

Michele

Hi Michele,

 

We did a 6 day burst earlier this month b/c our dd was entering another exacerbation (after getting the flu). For us it took about 2 weeks to see an improvement.

 

I heard that most people will see an improvement 3-10 days after starting the steroids. But, for some kids it might take several weeks. How long has your son been on the steroids? I would let Dr. Latimer know what is going on....but also try not get prematurely discouraged.

[EAMom]

MIchele,

yes, I wondered if the steroids made dd a bit worse b-4 they helped. It was a bit hard to tell as she was in an exacerbation anyway...

[TiredMom]

"At what point do the steroids kick in and show improvements? Did it take time or was it right away? I feel so sick right now. I can't control this kid anymore."

 

Michele, I'm sorry things are so tough right now... Hang in there, with my daughter I noticed a dramatic improvement on day 5. Hoping this medicine works for your son, and wishing you peace - Peggy

[Guest asaxon]

Another bad day out in public today. He was in a rage and throwing tables and chairs when I wouldn't give him what he wanted, kicking and hitting his sisters when they wouldn't move from the seat he wanted, pushed the baby down. Do the steroids cause any of this? I gave him 30 mg yesterday and today? I mean he was bad before this but I am so embarrased that I am avoiding people who know me. He was throwing rocks and screaming at me and says he will run away and live with my inlaws. He says he wants out of this house. I am so confused. Isn't there meds that can stop these rages? The ones we are on are no helping, or are they making him worse? At what point do the steroids kick in and show improvements? Did it take time or was it right away? I feel so sick right now. I can't control this kid anymore.

 

Come to think of it, the rages did seem to be worse for my 7 y/o daughter yesterday and the day before (days 3 & 4 of her steroid treatment). Highlights included jumping out of the car while stopped at an intersection & trying to tear the kitchen cabinet doors off of their hinges. She snapped out of both within 20 minutes or so, like they never happened. Her OCD symptoms are not worse, though, and may even be a bit better, but we're not getting our hopes up yet.

[colleenrn]

Michele-

Is Andrew on any antibiotics now or did Dr. Latimer want to see what the prednisone would do alone? Could he possibly be reacting to strep exposure?

Colleen

[michele]

I did give the antibiotic Omnicef again the past few days because I am worried he was exposed to something because my daughter had a sore throat over the weekend and has a cold now. He was better today cause I left him with my dad and he was 1 on 1. Tonight after the clonidine he got really good. The steroids make him much more active though. He has a new smelling tic though.

 

Michele-

Is Andrew on any antibiotics now or did Dr. Latimer want to see what the prednisone would do alone? Could he possibly be reacting to strep exposure?

Colleen

[colleenrn]

Did Dr. L think he did not need to be on antibiotics?

[michele]

She just agreed that his bowel issues could have been related to the strong antibiotic he had been on for awhile. She thought it was okay to give it a break. Said the antibiotic isn't essential since it is neuro/antibodies not really strep and she thought some people were becoming resistant to them. She never mentioned azith and I will have to email her about its inflam quality.

 

Did Dr. L think he did not need to be on antibiotics?

[P_Mom]

Dr Latimer told us straight out that "no child should be on Zith." So, I think she would be very reluctant to use it...although I know she has. I am not knocking any parent who gives zith....believe me....I know you have to do what works. I am just letting Michelle know she will probably have a tough time getting Zith from her....but, I am sure if you push hard enough...it could be done.

 

She told us that it was essential to do whatever to eliminate the sourse of this (strep)...she suggested tonsillectomy to us..and also told me my kids "would be on antibiotics until PANDAS was a distant memory."

 

Kelly