SSRI- Low vs. higher dosing

[911RN]

I just came across this thread looking for something else and am sitting here with my mouth hanging open! I did not know this about PANDAS children and activation of ssri. I have been told multiple times that my son is on an extremely low dose of Prozac and typically they would not prescribe that low- but if I thought it was helping to continue. He also went bonkers on the full dose of zoloft that we tried first! This article just hit me upside the head. Funny how I find these little tidbits on this board!

 

I was actually wondering if it would be of any benefit to take my son off the ssri before he has any more appointments? I am hoping to get an appt at USF with Dr. M and hopefully eventually Dr. Storch for his program. Anyone have any experience with whether they would need / want to see the child at true baseline? Not that I would want to put him there unnecessarily...

 

I origninally started this thread....I can't answer you specific question but just wanted to give an update. I would pose that question to the docs you are going to see if they want him off the medication or not before appt. It would likely take awhile since he should be weaned slowly from SSRI. My DS11 is now on Prozac 20 mg....we went up slowly 5 mg at a time every 6 weeks and he seems to be doing better with his quirky OCD behaviors. He was always ever-changing with what I called OCD of the week. Never consistent with one thing. However, he had to have lights on in room and all the bathroom doors closed (mainly at night). All that has stopped. He'll even tell you- you can leave the bathroom door open at night, now:0) Still has a few quirks but it's not that noticeable or bad.

 

His tics had resolved last Spring after 3 months of high dose daily Azithro (500 mg) but returned in last month following ear infection/?Strep. Not tested for Strep since doc was going to treat ear infection, anyway. I did 2 weeks of high dose Azithro (from hoarding stash of abx) and now following with couple weeks of Motrin BID but tics are still there- not severe nor as bad as they were last Spring. Mainly vocal, not so much motor. He probably needed longer course of abx but I did not want to deplete my stash. Saving for another day/infection to treat him longer than what docs usually give.

 

We return to see Neuro at end of Oct. Not sure what the plan will be with SSRI...leave as is or increase??

 

Teeth grinding at night has improved, less frequent but still there. Not as bad as when he first started on medication.

 

He is only on Prozac 20 mg and Lamictal XR 100 mg BID. Only supplements are low dose B6, low dose Vit D, multivitamin and I just added CoQ10 (hoping it may help with his fatigue, low endurance, lack stamina). Overall, I have been pleased with results of Prozac. Not a magic bullet but helpful in the big picture of things.Not sure where we go from here. Pending Neuro appt at end of Oct- he mentioned PET scan at last visit- I may push for that?? Especially, if he thinks results may add, change or alter what he feels would be best for DS11 treatment plan.

 

That's the latest with us.

[Orion]

I just read this thread as well.

 

DD has PITAND due to Lyme. She also has multiple co-infections, and tests high for M. Pneumoniae as well as various strep titers.(Her LLMD said she could be classified as PANDAS as well.) So it is anyone’s guess if one or multiple factors are causing her movement disorder and auto-immune problems.

 

Early on, before we realized that she was suffering a Lyme relapse, her pediatrician tried several SSRi’s. Unfortunately even the‘low’ starting doses were too high. Results were disastrous to say the least.

 

Flash forward several years. Her current neurologist conducted genetic testing (via Genomas,Inc.) to see how her liver metabolizes drugs via the Cytochrome P450 enzyme pathways (CYP2C9, CYP2C19, CYP2D6). Mutations would effect how she metabolizes medications. (Unfortunately antibiotics weren’t included with the results.)

 

Sure enough, DD had mutations for all 3 enzymes. Two mutations inhibit metabolism, allowing the drugs to build up in her body. Unfortunately for DD, this includes the majority of SSRI’s. No wonder even very small starter doses were too strong.

 

Tpotter- The mutation involving the third enzyme induces metabolism, meaning the meds are pumped out as quickly as they are given. For DD, opiates are effected. Our neurologist said if DD ever has surgery, the docs need to know as she would require much higher doses than usually given.

 

I hope someone finds this information helpful.

Edited October 2, 2011 by Orion

[tpotter]

This is facinating. Thank you for sharing it.

Edited October 1, 2011 by tpotter

[philamom]

I agree - that is fascinating.

 

Orion- may I ask how old your daughter is and if IVIG is helping the Lyme & Co.

 

-thx

[tpotter]

 

 

Sure enough, DD had mutations for all 3 enzymes. Two mutations inhibit metabolism, allowing the drugs to build up in her body. Unfortunately for DD, this includes the majority of SSRI’s. No wonder even very small starter doses were too strong.

 

Tpotter- The mutation involving the third enzyme induces metabolism, meaning the meds are pumped out as quickly as they given. For DD, opiates are affected. Our neurologist said if DD ever has surgery, the docs need to know as she would require much higher doses than usually given.

 

I hope someone finds this information helpful.

 

 

As I mentioned, IVIG seems to have helped the problem with benedryl...he no longer has a serious problem when he takes it. We haven't had the "opportunity" to try opiates again...hasn't needed surgery, since...but I will certainly warn the doctor that it might be necessary. It will be interesting to see if that was reset by the IVIG.

[Orion]

I agree - that is fascinating.

 

Orion- may I ask how old your daughter is and if IVIG is helping the Lyme & Co.

 

-thx

 

She is currently 20...EM rash and initial misdiagnosis, then weak initial treatment, happened when she was 11. The IVIg is most definitely helping with the movement disturbance- its down from multiple SC-like and/or paroxysmal dyskinesia episodes a day to just 1 or 2 a month. Dysautonomia is improved as are the food allergies.

 

Other than that, it is tough to tell what treatment (auto-immune, Lyme, Babesia, Bartonella) is helping what. Fatigue is still a major issue, and seems to be worsening (Her mycoplasma titers, IgM and IgG have been high for the past 6 months.) While anxiety and paranoia are still an issue, that has been cut in half. Executive functioning and auditory processing issues are much improved, but not enough to allow her to resume classes. From my point of view, each little thing that is being done helps in its own way.

 

Her initial Cunningham tests were very high (esp. antilysogangliosides). We were hoping to have them repeated after being on IVIg for a year, but that blood sample is currently in limbo.

[philamom]

I agree - that is fascinating.

 

Orion- may I ask how old your daughter is and if IVIG is helping the Lyme & Co.

 

-thx

 

She is currently 20...EM rash and initial misdiagnosis, then weak initial treatment, happened when she was 11. The IVIg is most definitely helping with the movement disturbance- its down from multiple SC-like and/or paroxysmal dyskinesia episodes a day to just 1 or 2 a month. Dysautonomia is improved as are the food allergies.

 

Other than that, it is tough to tell what treatment (auto-immune, Lyme, Babesia, Bartonella) is helping what. Fatigue is still a major issue, and seems to be worsening (Her mycoplasma titers, IgM and IgG have been high for the past 6 months.) While anxiety and paranoia are still an issue, that has been cut in half. Executive functioning and auditory processing issues are much improved, but not enough to allow her to resume classes. From my point of view, each little thing that is being done helps in its own way.

 

Her initial Cunningham tests were very high (esp. antilysogangliosides). We were hoping to have them repeated after being on IVIg for a year, but that blood sample is currently in limbo.

Thank you for sharing. I'm praying she has continued success!

 

Can you tell me if the genetic testing was covered by insurance. Also, was your daughter checked for the HLA DR4 gene? I read your previous posts and noticed your daughter has Raynauds & pituitary issues. I have severe Raynauds disease (daily medication helps) that started in my late teens. I also had a pituitary tumor and was diagnosed with IBS all around the same time. Now in my 40's, I recently tested positive for Lyme with Igenex. My daughter has Lyme, Bart, RMSF, PANS, and a slew of IGG viruses.

 

Anyway, again - thank you for sharing. Sorry to hijack the thread!

[Orion]

 

Thank you for sharing. I'm praying she has continued success!

 

Can you tell me if the genetic testing was covered by insurance. Also, was your daughter checked for the HLA DR4 gene?

 

Yes, our HMO paid for the Cytochrome P450 testing.

 

DD does not have the HLA DR4 genotype. I will PM you, philamom, so this thread remains on topic.