Visit with Dr. M

[kimballot]

Ok - I just tried to add an edit to this post and I removed my entire original post about my visit with Dr. M .... EGADS!! I will try to recreate it here....

 

What I forgot to say last time was that the BEST part of the visit was that I got to meet Dee Dee from the forum in the waiting room! Her kids are beautiful and it was so great to talk to her in person! wish it could have been longer!!

 

Now - regarding my visit with Dr. M -

 

It was a very thorough visit. The receptionist told me Dr. M likes lots of data, and I sure sent it!! I faxed lots of medical records and a summary of ds14 history over ahead of time. Then filled out the required paperwork that they sent ahead of time. I have to say that the questions they asked were really great - very much directed at PANDAS and clearly fit our kids. DS even got to participate in a couple of PANDAS research studies having to do with immune markers while we were there.

 

When we got to the appointment we first met with a psychiatry Fellow and with another "trainee" (medical student perhaps?). The Fellow was excellent and he clearly had read and digested the mounds of paperwork we had sent. He asked pointed questions that really helped him to understand the picture until he was able to repeat it back to me.

 

Then he met with Dr. M for a bit to discuss the case and review all the papers. Finally, the entire team met with us to make recommendations.

 

They basically said that they were in agreement that DS has an immune-triggered neuropsychiatric disorder. They also said that they were in agreement with our treatments to date, with IVIG every 8 weeks (ds has immune deficiencies), and continued antibiotics. Prior to this I was thinking we would wean ds off antibiotics in the next year or so, but Dr. M said "no" - she really recommended long-term high dose antibiotics in our case. I told her that I wanted to continue IVIG for a year to try to give the sinuses, immune system and brain a break and she agreed and then said that antibiotics should continue even after IVIG ends.

 

She reviewed all of our supplements and agreed with them. She stresses multivitamin, D3, probiotics, and fish oil. She is particular about fish oil and recommends coromega - orange fluff in packet (I purchased a lemon-lime version online from walgreens), omegabrite, Nordic Naturals, or Omega Mood.

 

She spent some time talking about possible meds for attention and anxiety. She recommended extremely low doses of meds, but said they should be OK given ds' history. We will discuss the medication options with the local docs.

 

They made suggestions for school and home and recommended intensive CBT with ERP. We do not have a local therapist to do this, and I asked to have DS do the intensive CBT program while we were there as we had time and a spot at the Ronald McDonald house. They were not able to accommodate this as Dr. Storch was out of town, so they could not begin that quickly.

 

Overall, I was very happy with the appointment, though I was disappointed about the CBT. I had contacted them originally to set up intensive CBT and was told Dr. M had to evaluate first. I can understand that, and I am sure they have many details to worry about, but I would have liked to have done the CBT at this visit. Now I do not know when ds will be able to go again as he will be starting school soon.

Edited July 22, 2011 by kimballot

[thereishope]

It sounds like you were happy with appointment, overall. Why the change with the fish oil? Was it the ratios? What kind was you child taking?

 

Did they give you an idea of when you will hear from the person that schedules the intensive therapy? Do they need to consult with Storch first?

Edited July 22, 2011 by Vickie

[Debbie1]

At what interval are you currently doing IVIG and do they want you to continue at the same interval?

[JAG10]

Sounds like a fantastic appointment!

 

Does the team like the non-stimulant attention meds that also have anti-anxiety properties like Straterra or Intuniv?

 

I'm so happy for you!!!

[kimballot]

It sounds like you were happy with appointment, overall. Why the change with the fish oil? Was it the ratios? What kind was you child taking?

 

Did they give you an idea of when you will hear from the person that schedules the intensive therapy? Do they need to consult with Storch first?

 

I don't really know the rationale behind the fish oil. I was just using a basic store-brand 1,000 mg fish oil. I believe she said something about absorption, but that could be something I read afterward as I was googling fish oil.

 

Yes - we need to talk with Storch before deciding what to do about CBT. The Fellow will share my info with Storch and I have Storch's card. I have a feeling I will probably call him before he calls me- because that's just how I am!

[kimballot]

At what interval are you currently doing IVIG and do they want you to continue at the same interval?

 

We do IVIG every 8 weeks with Dr. B. That is the protocol he usually starts with for kids with immune deficiencies like my son's. So far it has been good for us. My son has not had any sinus infections since we began IVIG 5 months ago and that is really good for him. We are hoping to go a year without a sinus infection to really give his sinuses, his immune system, and his brain a break!

 

Dr. M said she would not change the schedule for the IVIG. I don't know if it was her first choice for schedules, but she did not have any problems with it. So it was reaffirming for us.

Edited July 22, 2011 by kimballot

[kimballot]

Sounds like a fantastic appointment!

 

Does the team like the non-stimulant attention meds that also have anti-anxiety properties like Straterra or Intuniv?

 

I'm so happy for you!!!

 

I think the stimulant vs. non stimulant is really individualized and they noted strengths and limitations of each. They said good old ritilin in very small doses would be OK for us (though I don't know if they would recommend it if my son had heavy-duty tics)... and the advantage is that you can see the effects quickly and the effects wear off relatively quickly if you don't like it. They said strattera would be good if the problems seem to be more motivational than on-task attention in class. They said SSRIs could be used for anxiety but, again, they really cautioned about very low doses and very good monitoring for negative effects. Dr. M said pharmacists call her sometimes to double-check the dosages because they are so low and they laugh at her!

[JAG10]

Sounds like a fantastic appointment!

 

Does the team like the non-stimulant attention meds that also have anti-anxiety properties like Straterra or Intuniv?

 

I'm so happy for you!!!

 

I think the stimulant vs. non stimulant is really individualized and they noted strengths and limitations of each. They said good old ritilin in very small doses would be OK for us (though I don't know if they would recommend it if my son had heavy-duty tics)... and the advantage is that you can see the effects quickly and the effects wear off relatively quickly if you don't like it. They said strattera would be good if the problems seem to be more motivational than on-task attention in class. They said SSRIs could be used for anxiety but, again, they really cautioned about very low doses and very good monitoring for negative effects. Dr. M said pharmacists call her sometimes to double-check the dosages because they are so low and they laugh at her!

 

I would have to agree with her based on our experience. Even Straterra, which is a weight-based dose, my dd saw a positive impact by 25mg and within a few days, not several weeks. I think that is another way our kids differ, or at least mine does; she sees impact good or bad within a couple days for all types of psych meds that were supposed to have to "build up" in the body for several weeks.

[hawks]

So glad your appt went so well. That is great! It really sounds like they gave you some good direction and confirmation on treatment. We are headed down on 9/7 - hope it goes well for us as well. I just hope DS15 doesn't back out. Did you have to drag your son there or was he mostly compliant about going?

[kimballot]

So glad your appt went so well. That is great! It really sounds like they gave you some good direction and confirmation on treatment. We are headed down on 9/7 - hope it goes well for us as well. I just hope DS15 doesn't back out. Did you have to drag your son there or was he mostly compliant about going?

 

my son was leary and had lots of anxiety (in the form of defiance) the morning we were leaving. Refused to go to summer school that day, refused to pick up work for the trip... started to threaten to not go on the plane.

 

At one point - about two hours before we needed to leave for the airport - we were all packed and he was calm and I said "you know what - since we are all ready I want to leave and make a couple of stops on the way. One of them will be dairy queen". He hopped in the car and got his ice cream and I came up with lame places to stop and then got to the airport early. It worked. I headed the anxiety off before it hit him!

 

He was also very anxious the morning of the appointment - wouldn't get out of bed, really slow getting ready. We got to the appointment 10 minutes late and he had not had anything to eat. I just tried to go with the flow and grabbed him something from across the street (warning: no vending machines in that building). It all worked out in the end.

[airial95]

There are no vending machines in that building but there are some on the first floor of the building next door - for future reference, we've had the same issues. Which fellow did you see" do you remember? We work with Dr Toufexis, and adore her!! She's getting ready to go on maternity leave so we're temporarily getting transferred to someone else. We're there every 2-3 months for follow ups, but it's local for us.

[kimballot]

There are no vending machines in that building but there are some on the first floor of the building next door - for future reference, we've had the same issues. Which fellow did you see" do you remember? We work with Dr Toufexis, and adore her!! She's getting ready to go on maternity leave so we're temporarily getting transferred to someone else. We're there every 2-3 months for follow ups, but it's local for us.

 

We saw Dr. Rempfer. He was very good.

[Dedee]

It was so wonderful to get to meet you. You are as warm and caring in person as you are on line.....

 

Dedee

[cynditk]

IVIG questions:

 

Hi kimballot,

 

I have some questions regarding IVIG and DR.B:

What type of immune deficiency is your son dx'd with? Did you do vaccine testing?

Are you doing high dose or typical dose IVIG? Why every 8 weeks? That is not typical for immune deficiency.

 

Thanks!

[kimballot]

Hi Cyndilynn -

 

My son is mildly deficient in overall IgG, but he was below protective levels in 10/14 pneumococcal titers. Also, over the past year he started dropping in IgA and is now below the range in IgA as well. He has chronic sinusitis. IgA is usually the first line of defense for the sinus mucosa and then IgG usually follows with antibody protection. Since he is low on both, we decided to do IVIG which provides IgG (not IgA) antibodies, in hopes that the IgG would help to fend off sinus infections.

 

I am not sure if that is the exact mechanism, but he has definitely had relief from sinusitis that we can only attribute to the IVIG.

 

As for the dosage and schedule - we do 1.5 g/kg, as many kids with PANDAS receive. Typically, you would use lower dose for kids who are immune deficient, but there is at least one article in the literature that postulates that higher dose IVIG also has anti inflammatory properties, while low dose does not. Since inflammation is thought to lead to the breach in the blood-brain barrier that kids with PANDAS experience, we wanted to do higher dose. (note: some kids on this forum get low dose and do just fine, but I think most start with higher dose).

 

As for the frequency - 8 weeks is sort of a standard that Dr. B set - though I don't think there are any research studies behind it. He told me he likes to start at 8 weeks and see how it goes. Some kids need it more often, and if we saw a decline along the way we could have it more frequently. I believe 3-weeks is around the half-life for antibodies (at 3 weeks half of the antibodies you received are still alive), and 4-weeks is sort of standard frequency for low dose IVIG for immune deficiency. Since our son receives twice the normal dosage of antibodies to start with to reduce inflammation, he should have at least the typical level of protection for twice the length of time of low dose - which would be 8 weeks. Does that make sense?

 

Anyway - I think scheduling is very individualized and is something that each doctor seems to have his/her own protocol for. It is just one more thing we really need to have studied, but so far the only IVIG studies have been of one-time IVIG for kids who do not have any immune deficiencies.

 

I hope that was not too much info!