Dr. Latimer

[T_Mom]

She has always been very responsive but I always call the office (rather than email) with medical concerns.

Hope things get much better soon--

[michele]

Still never heard from Latimer. I can't believe she is not following up on these concerns.

 

Today we went to a new psychiatrist. He was very skeptical of me. I got an eery feeling from him. First he was really Pissed I had never given the risperdal the last Dr. he replaced had prescribed. I tried to explain that we had added clonidine and one change was enough at a time. That Dr's prescribe this stuff and then are on vacation and leaving the practice and no where to be found when complications arise. That it is just too much and too overwhelming to make too many changes at once. That I am irriated by the whole process of the medical system and schools and medical coverage. Then Dr. Latimer and the steroids set him off. He wanted to know what medical documentation or proof she had for the PANDAS. He wanted to know what was going on that he has been to Dr's out of state for PANDAS and who diagnosed it. Then he turned the whole frustration and anger issues onto us at home and how we are handling him. How we need to be soft spoken and calm wih our voices. I explained how hard that is when he is smearing BM on my carpets and blinds 3 times a day. How he loves to agitate us and squeal and scream to irritate us. The Dr. said he never heard of a stomping tic. That Andrew has been coached because he uses words like echoalia when he asked him questions(while I was out of the room). I have never used the word echolia before but had heard it at a Dr's office that we don't use that word only echo. Andrew said he asked if we beat him. I told him he tells us we are mean all the time when we don't do what he wants. He suggested changing nothing until the steroids are done. He wants copies of all medical notes. He wants Latimers notes and test as she ran. He wanted ped number. He wants us to get a MRDD advocate involved. He suggests being calmer in our house and getting therapy for myself. He said I need to be healhier for him. I seriously don't think this guy had much people skills or had any idea about what a houseful of kids is like. I guarantee he didn't have kids. Overall I think he thinks we are the problem. I definately could tell he didn't believe in PANDAS. I think OH has been coached by naysayers on PANDAS and that the parents are the problem. Lord help us all! I took my scripts and got out two hours later no less. I think I will need to find a new psychiatrist again.

 

[quote name='T.Mom' date='Aug 10 2009, 09:21 AM' post='36000\

She has always been very responsive but I always call the office (rather than email) with medical concerns.

Hope things get much better soon--

[EAMom]

I'm so sorry about the new psychiatrist Michelle. It doesn't sound like he's going to be much help.

 

Has anybody worked up your son's pooping problem from a medical perspective...or is everyone just assuming it is all behavioral? I know of a couple of kids who have had problems with constipation. Has he had x-rays or any other tests for this? If you could get this aspect under control that would really decrease your stress level.

 

One thing I would agree with the new psychiatrist is that you shouldn't change change much else until the steroids are done. It's too confusing to have multiple variables...then you won't know what made him better if he does get better.

 

By the way, Dr. Latimer doesn't need "proof of PANDAS" before trying a steroid burst! That's so stupid. Why would she need "proof" if she was using the burst as a "diagnostic test" to confirm the PANDAS diagnosis in the first place???

[michele]

Yes I explained that it was used as a diagnostic tool. He said he wouldn't change a thing while the steroids were going on. He felt after the steroids we may be able to go off Abilify because he would be better. I would love to get him off it. I wonder if the steroids made the constipation worse. I agree it may be medical const and seems common in spectrum kids. The last psychiatrist was so nice. This guy seemed very odd almost skeptical of me I guess because I had not followed orders to change to risperdal. Almost like he was on a power trip, I didn't like the way he was so critical of me almost made me feel like he was pointing the finger at me as being unstable or abusive. Has anyone else ever had a psych like that? Very creepy. I told him I just want him well and that would make me less stressed. I pray the steroid is working its magic and he will be much better soon.

 

I'm so sorry about the new psychiatrist Michelle. It doesn't sound like he's going to be much help.

 

Has anybody worked up your son's pooping problem from a medical perspective...or is everyone just assuming it is all behavioral? I know of a couple of kids who have had problems with constipation. Has he had x-rays or any other tests for this? If you could get this aspect under control that would really decrease your stress level.

 

One thing I would agree with the new psychiatrist is that you shouldn't change change much else until the steroids are done. It's too confusing to have multiple variables...then you won't know what made him better if he does get better.

 

By the way, Dr. Latimer doesn't need "proof of PANDAS" before trying a steroid burst! That's so stupid. Why would she need "proof" if she was using the burst as a "diagnostic test" to confirm the PANDAS diagnosis in the first place???

[peglem]

I was kicked out of a psychiatrists office once (well, politely shown the door) because I had weaned my child off risperdal and wanted to try an off label med (that my daughter had been on quite safely in the past.) The psych kinda freaked out with all these reasons why she couldn't possibly consider it (instead of listening to my reasoning) and then smiled and said she was just being honest with me. I told her she was being very honest, but not at all helpful...that's when she showed me to the door. Hey, I was only being honest right back at her! The thing is, if you get a really good psychiatrist, they can be very helpful. I nearly gave up finding a good one though...that's hard to do.

[thereishope]

.

Edited October 18, 2016 by vickie

[EAMom]

Michele, I've heard the average response time for a steroid burst is 3-10 days. But, in some cases it can be weeks. My dd took 2 weeks. I'm still keeping my fingers crossed for you!

[pandas2boys]

Still never heard from Latimer. I can't believe she is not following up on these concerns.

 

Today we went to a new psychiatrist. He was very skeptical of me. I got an eery feeling from him. First he was really Pissed I had never given the risperdal the last Dr. he replaced had prescribed. I tried to explain that we had added clonidine and one change was enough at a time. That Dr's prescribe this stuff and then are on vacation and leaving the practice and no where to be found when complications arise. That it is just too much and too overwhelming to make too many changes at once. That I am irriated by the whole process of the medical system and schools and medical coverage. Then Dr. Latimer and the steroids set him off. He wanted to know what medical documentation or proof she had for the PANDAS. He wanted to know what was going on that he has been to Dr's out of state for PANDAS and who diagnosed it. Then he turned the whole frustration and anger issues onto us at home and how we are handling him. How we need to be soft spoken and calm wih our voices. I explained how hard that is when he is smearing BM on my carpets and blinds 3 times a day. How he loves to agitate us and squeal and scream to irritate us. The Dr. said he never heard of a stomping tic. That Andrew has been coached because he uses words like echoalia when he asked him questions(while I was out of the room). I have never used the word echolia before but had heard it at a Dr's office that we don't use that word only echo. Andrew said he asked if we beat him. I told him he tells us we are mean all the time when we don't do what he wants. He suggested changing nothing until the steroids are done. He wants copies of all medical notes. He wants Latimers notes and test as she ran. He wanted ped number. He wants us to get a MRDD advocate involved. He suggests being calmer in our house and getting therapy for myself. He said I need to be healhier for him. I seriously don't think this guy had much people skills or had any idea about what a houseful of kids is like. I guarantee he didn't have kids. Overall I think he thinks we are the problem. I definately could tell he didn't believe in PANDAS. I think OH has been coached by naysayers on PANDAS and that the parents are the problem. Lord help us all! I took my scripts and got out two hours later no less. I think I will need to find a new psychiatrist again.

 

Michele, did you try that phone number I emailed you to reach Dr Latimer?

[dee45]

Hi Michele,

How are things going? Did you ever reach Dr. Latimer? Hope things are settling down.

 

Deanna

[Guest asaxon]

Someone correct me if I'm wrong, but I think that Dr Latimer supports using steroids for extended periods of time. Dr K doesn't like that, see his website where he writes:

 

"Just the fact that the "steroid burst" (used to test possible future effectiveness of IVIG) tend to control PANDAS symptoms effectively brings it into consideration as a possible treatment for PANDAS. Since the short-term steroid treatment only controls the symptoms temporarily and the prolonged use of it may have rather serious side effects, corticosteroids have not been (and should not be) used as a treatment in PANDAS."

 

Thats why Dr K and others only suggest a 5 day steroid burst. Do some more research about long term effects of using steroids for an extended period of time.

 

Try http://ibdcrohns.about.com/cs/prescription...dprednisone.htm and http://www.medications.com/se/prednisone

 

I have full respect for Dr Latimer and I have an upcoming appointment with her, but every parent should still do their research

 

I would have to respectfully disagree with Dr. K's categorical statement that "corticosteroids have not been (and should not be) used as a treatment in PANDAS". PANDAS researchers generally believe that PANDAS is similar to Sydenham's Chorea (SC) in how the diseases operate; that is, they are both some kind of an autoimmune reaction triggered by strep that reacts with the nerve cells of a child's basal ganglia. And there has been a half-century of practice and research on the use of corticosteroids to treat SC. A typical protocol is up to 4 weeks of 2mg/kg/day prednisone, and then taper down. If SC is treated with prednisone right away, the symptoms seem to respond fast (days); when SC is untreated for a time, then it can take longer for the symptoms to respond (weeks). The case studies I have read conclude that prednisone bursts (of varying lengths, at least up to a month) are safe and effective for treatment of SC.

[michele]

She did call me last night. Her messae box was full, I had sent three emails. She said if the steroids weren't working on day 19 it didn't look good. Sounded more OCD anxiety to her. She suggested we get him help ASAP NIMH OCD study with riluzule. http://patientinfo.nimh.nih.gov/ObsessiveC...iatric.aspx#174

He was in a rage again today just being obstinant because I am so mean. He is destroying his room by throwing toys at the walls and putting his finger in his bottom and wiping it on his carpet. Today I am taking him for an evaluation at MRDD in our county. Maybe they can have some suestions on services. For some reason he has become ODD and then is having encopresis. I seems so hard to believe. I don't know where my sweet little boy went and why he has gone. Dr. latimer said kids with OCD will act out. See if anyone here can figure this out. I don't know how we are going to rise out of this? Here are a few articles I found.

http://patientinfo.nimh.nih.gov/ObsessiveC...iatric.aspx#174

http://www.mentalhelp.net/poc/view_doc.php...d=535&cn=37

Here is a new PANDAS article http://www.eurekalert.org/pub_releases/200...s-ats081009.php

 

Hi Michele,

How are things going? Did you ever reach Dr. Latimer? Hope things are settling down.

 

Deanna

[colleenrn]

Michele-

I am SO sorry for what you are going through with your son. I just keep going back to the fact that NO one will put your son on Zithromax. I completely disagree with a physician saying that "no children" should be on Zithromax. Based on all of your previous posts, I believe your son is PANDAS. Based on that, and given that he responded to Omnicef and now he is worse off of Omnicef, I think he needs to be given a months trial of Zithromax.

 

IF the strep is intracellular, which it very well may be, Zithromax could really help. I also do not understand Dr. Latimer's stance on him not needing antibiotics. I understand the antibiotics don't "get rid of" strep, but it is needed to prevent further strep and/or treat any strep that may be lurking in his body.

 

Has anyone 100% ruled out perianal strep? Could his bowel issues have begaun with the irritation caused by perianal strep and now they have just "blossomed" into" him focusing on that behavior?

 

I know you have tried so many times to get him on Zithromax, and I know this post is probably not very helful, I just really think a trial of Zith is MORE than warranted in your case. They offer you Risperdal and scold you for not giving it to your son, yet refuse to give you Zithromax, when risperdal (in my opinion and experience with seeing children take it) is much more dangerous than Zithtromax.

 

Good luck and hang in there!!

Colleen

[EAMom]

I completely agree with Colleen!!!

[dee45]

Hi Michele,

is your son getting any antibiotic coverage?? Dr. Latimer kept our son on Pen-v-k 250mg twice a day to prevent further infection. I think you should call her agian and ask her for a course of something to see if that works. i think she would be open to that what would it hurt. I am so sorry you and your family are having such a rough time and I hope something starts to work to help your son. Hang in there.

 

Deanna

[colleenrn]

It may take you calling and very assertively and specifically telling her that you want a trial of Zithromax, that you have tried everything else and that you are in contact with several PANDAS families that only had positive results with Zithromax.

 

She did give it to someone on this forum (I forget who) that saw her and asked for her child to be put on it. You can be really politely assertive and tell her that you will not take no for an answer. I think it is outrageous what you have had to go through to get the right help for your son and I am very sorry for that.

 

Colleen