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I spoke to someone from NIMH who will call me tonight to get more info. Things went well with MRDD today and he did qualify based on his diagnosis. Also a behavioral therapist was there and she wants to come out to the house. She does validation emotional training for the whole family. She feels his disibilities involve executive functioning and an inability to express his emotions. Maybe there is hope yet! Yes I would love to try the Azith. I don't know if Latimer would prescribe it but I could email her. I did pay her $550 for a two hour visit and travel 12 hr to see her round trip! I know she wans to help him.

 

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

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I spoke to someone from NIMH who will call me tonight to get more info. Things went well with MRDD today and he did qualify based on his diagnosis. Also a behavioral therapist was there and she wants to come out to the house. She does validation emotional training for the whole family. She feels his disibilities involve executive functioning and an inability to express his emotions. Maybe there is hope yet! Yes I would love to try the Azith. I don't know if Latimer would prescribe it but I could email her. I did pay her $550 for a two hour visit and travel 12 hr to see her round trip! I know she wans to help him.

 

You should definitely try asking her. Once she saw your child, there shouldn't be any reason why she couldn't prescribe it.

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I spoke to someone from NIMH who will call me tonight to get more info. Things went well with MRDD today and he did qualify based on his diagnosis. Also a behavioral therapist was there and she wants to come out to the house. She does validation emotional training for the whole family. She feels his disibilities involve executive functioning and an inability to express his emotions. Maybe there is hope yet! Yes I would love to try the Azith. I don't know if Latimer would prescribe it but I could email her. I did pay her $550 for a two hour visit and travel 12 hr to see her round trip! I know she wans to help him.

 

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

 

 

Michelle,

 

I noticed you say you traveled 12 hours to see Dr. Latimer. What state are you in if you don't mind me asking? I too agree that your child is very lucky to have you.

 

Linda

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Thanks guys. It was six hours each way. We are. in Canton, OH We made it our family trip to DC. I emailed Dr. Latimer about the azith.

 

I spoke to them on the study a NIMH. Downfall is 11 visits in 6 months. Every two weeks the first two months then once a month. Then one group gets a placebo for 12 weeks the oher riluzole. Then after the 12 weeks everyone gets the meds for six months. It is all free however and you work with their psychiatrist and get a full work up including labs and EEG and EKG. I guess they have seen improvements for OCD. You have to have a prescribing Dr. at home on board. I don't know about that. Plus missing school and being goone that much with three kids at home. We will think on it.

 

Michelle, NEVER give up hope. Andrew is very lucky to have you!
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Michele,

 

I know this clinical trial looks very promising but I wanted to let you know about our experience with Riluzole.

 

Although we opted not to join the NIMH study, we followed their protocol last year for 3 months under the supervision of my daughter's doctors. We increased the dosage as recommended but after 3 months we saw no results. So we decided to take my daughter off the Riluzole very, very slowly. The withdrawal resulted in an overnight onset of very severe motor and vocal tics. It was just devastating and it did not go away until after the third IVIG infusion. I reported this to NIMH and to the manufacturer of Riluzole. I was told this was the first time anyone has reported anything like this.

 

My big question to NIMH would be -- how many children in the study are diagnosed with PANDAS? I could be wrong, but I don't think these children have PANDAS.

 

Nancy

 

Thanks guys. It was six hours each way. We are. in Canton, OH We made it our family trip to DC. I emailed Dr. Latimer about the azith.

 

I spoke to them on the study a NIMH. Downfall is 11 visits in 6 months. Every two weeks the first two months then once a month. Then one group gets a placebo for 12 weeks the oher riluzole. Then after the 12 weeks everyone gets the meds for six months. It is all free however and you work with their psychiatrist and get a full work up including labs and EEG and EKG. I guess they have seen improvements for OCD. You have to have a prescribing Dr. at home on board. I don't know about that. Plus missing school and being goone that much with three kids at home. We will think on it.

 

Michelle, NEVER give up hope. Andrew is very lucky to have you!

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Hi,

we saw Dr. Latimer today and were very pleased with the visit. She would like us to get the Cunningham blood test and if that comes back in the positive range for PANDAS she wants to put him on steroids . She wants us to continue the Pen V-K 250mg twice a day. She does not sound like she thinks stronger antibiotics such has Zithromax of Clindamycin are indicated. Anthony meets all the criteria for PANDAS but would like the Cunningham test done to validate. He does chorea like movements that I always thought was him just not sitting still. His titers drawn in March when he tested positive for strept were very high which she said indicative of an ongoing infection. She asked us if we had a dog. Well we did up until the 3rd week of May but had to put her down because she was almost 17 and not doing well,, she said dogs are huge carriers of strept. We just got home it was a long day. I would love to answer any questions. She also said she would like us to keep him on Topamax she is using it and has seen very good results.

 

Deanna

 

Deanna,

Hi, How are things going with your son? When you said your son does chorea like movements and you always thought it was him just not sitting still, what do the movements look like? Or is it more like just not being able to sit still in a chair? Char...

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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.

 

I agree with you...I googled "Tourette's Syndrome and Prednisone" and I came up with this artcle published in 1992:

 

http://www.ncbi.nlm.nih.gov/pubmed/19630633

 

Anyway, these cases sure seem like PANDAS to me...I only read the summary

 

We saw a pediatric rhumatologist on Tuesday that wasn't very helpful; however he did say that he saw no reason why we couldn't use prednisone as an occasional treatment if her symptoms flare up...

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Wow, I agree...it sure sounds like these kids had PANDAS.

 

I do wonder (after dd has recently had IVIG) about combining predisone with IVIG. Doing IVIG, continuing prophylactic antibiotics (of course), and if there is any evidence of a flare (eg. child gets exposed to strep), hit it fast and hard with a course of steroids...

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

[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--

 

 

Were you aware her husband died at the end of June...she's had a rough couple months, give her a break

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