Saving Sammy dose + neurofeedback and behaviors getting worse?!

[galien407]

Hello... I'm hoping somebody can provide insight into my son's situation. 11 y.o. DNASE 1920 in Jan. so we did 2 day IVIG, dnase dropped to 680, then rose again to 960 so we did a 1 day IVIG in September. behaviors slightly better after January procedure.. less so after Spt. iv..

 

Started the Saving Sammy dose Oct. 15, at the same time that my son had a fever (flu). His OCD and anxiety are skyrocketing again. (son weighs 75 lbs.; takes 875mg augmentin twice per day.) We've had about 10 neurofeedback sessions which are helping with focus a bit, but ocd/anxiety is off the chart.

 

I'm thinking that the strep antibody burden should be coming down after 2 weeks of strong abx, right? (Although it could be months before his titers reach normal levels, they should at least be coming down, correct?) Could his increase in anxiety, etc., be from the flu antibodies he has created? If so, how long until those nasty antibodies go away?

 

Also, I'm starting to see acronyms that I don't understand.. could somebody tell me where to find descriptions of PEX, CamKinase.. thanks!

[KeithandElizabeth]

Hello:

 

First, I am sorry that you are going through such a rough time with healing your son.

 

I would go to My Assistant at the top right section of the screen and you can search for posts on PEX and CAM Kinase II. I feel that these posts can explain everything better than I could.

 

I just wanted to comment that several of the people who have been helped with the high dose Augmentin did not see improvements right away. I know of one person whose child is 95% better right now from a high dose of Augmentin and she saw old symptoms come back and then leave during the first 5 weeks. I just wanted to give you some hope in that category.

 

What doctor are you seeing and what part of the country are you living?

 

Elizabeth

[galien407]

[Thanks so much for your comment about the children who didn't show improvements during the first weeks of augmentin... that makes me feel better! In the Saving Sammy book, I got the impression that her son showed improvements almost immediately, and I was very disheartened.

 

We live near Chicago and see Dr. K... so we're pretty lucky in that regard.

 

Thanks for pointing out the "My Assistant" feature.. never noticed that before.

 

Mary

[EAMom]

We also had an exacerbation after (suspected) H1N1 last June. Any illness (strep, other bacteria, virus) can trigger an excerbation. The flu (H1N1) does seem to be a big non-strep trigger. So, the Augmentin might be helping but the benefit is being masked by the exacerbation from the flu.

 

Now would be a good time (in an exacerbation) to measure Camkinase ll (if you are interested). Contact Dr. Cunningham ASAP as her lab is closing soon for the holidays.

 

Are you giving Advil?

 

Strep antibodies decline at different rates in different kids...but these aren't the anti-bodies that are the actual problem in pandas kids. Read Buster's Aug 24 and Jan 11 posts: http://www.latitudes.org/forums/index.php?...art=#entry29305

 

PEX= plasma exchange (which is similar to plasmapheresis), sometimes people write PEX when they actually mean plasmapheresis b/c it is easier to type http://www.cbbsweb.org/enf/2007/pheresis_exchange.html

[galien407]

Thanks so much for your help...

 

I hadn't considered Advil... would I be using that to combat the brain inflammation from the flu antibodies?

 

also, how do I contact Dr. Cunningham and what is the approx. cost of the Camkinase II test?

 

Thanks again!

[Megs_Mom]

Hi - Unfortunately, Neurofeedback has not been proven to work with OCD. There have been a number of research studies for this, but none that worked. (It does work for some brain disorders, just not OCD). However, ERP therapy has been proven (Exposure & Ritual Prevention) to work as well as SSRI medications, and we have found be a very effective tool to use, in combination with medical treatment for a PANDAS child. Especially for children that react for other illnesses, understanding ERP can be a wonderful benefit. If you are interested in learning more, you could read Aureen Wagners "What do do when your child has Obsessive Compulsive Disorder" and do the workbook "What to do when your brain gets stuck" with your child. If you need more info, let me know.

[EAMom]

Lots of people find advil helps pandas symptoms. Perhaps it helps with brain inflammation?

 

There are lots of threads on the cunningham test if you do a search (upper right hand corner of the page). Here's one http://www.latitudes.org/forums/index.php?...gham+blood+test You can send Dr. Cunningham or Kathy Alvarez an e-mail to get a kit. A donation of $200 if recommended (covers expenses like overnight shipping). The donation is tax deductable (Dr. Cunningham doesn't have funding for this study.)

[EAMom]

Hi - Unfortunately, Neurofeedback has not been proven to work with OCD. There have been a number of research studies for this, but none that worked. (It does work for some brain disorders, just not OCD). However, ERP therapy has been proven (Exposure & Ritual Prevention) to work as well as SSRI medications, and we have found be a very effective tool to use, in combination with medical treatment for a PANDAS child. Especially for children that react for other illnesses, understanding ERP can be a wonderful benefit. If you are interested in learning more, you could read Aureen Wagners "What do do when your child has Obsessive Compulsive Disorder" and do the workbook "What to do when your brain gets stuck" with your child. If you need more info, let me know.

 

I should add that there are no studies to show that SSRI's are safe or effective in PANDAS children with OCD (although that is the treatment that is recommended on the NIMH website). Many PANDAS children on this forum have reacted adversely to pysch. drugs.

[Megs_Mom]

Hi - Unfortunately, Neurofeedback has not been proven to work with OCD. There have been a number of research studies for this, but none that worked. (It does work for some brain disorders, just not OCD). However, ERP therapy has been proven (Exposure & Ritual Prevention) to work as well as SSRI medications, and we have found be a very effective tool to use, in combination with medical treatment for a PANDAS child. Especially for children that react for other illnesses, understanding ERP can be a wonderful benefit. If you are interested in learning more, you could read Aureen Wagners "What do do when your child has Obsessive Compulsive Disorder" and do the workbook "What to do when your brain gets stuck" with your child. If you need more info, let me know.

 

I should add that there are no studies to show that SSRI's are safe or effective in PANDAS children with OCD (although that is the treatment that is recommended on the NIMH website). Many PANDAS children on this forum have reacted adversely to pysch. drugs.

 

Yes, I agree with this statement. That's why I don't ever recommend SSRI's for PANDAS children. Without studies on PANDAS children, and with antidotal evidence that they do not work, SSRI's concern me. We used ERP therapy as a non-invasive option to acheive the same result. The challenge for us, is how to get through each day without some support - but ERP has really helped. I would love to see extensive research on SSRI's in documented PANDAS cases, so that we'd understand all of our options. We have had primarily Zoloft recommended to us, but thus far, have declined to add anything else.

[T_Mom]

... However, ERP therapy has been proven (Exposure & Ritual Prevention) to work as well as SSRI medications, and we have found be a very effective tool to use, in combination with medical treatment for a PANDAS child. Especially for children that react for other illnesses, understanding ERP can be a wonderful benefit. If you are interested in learning more, you could read Aureen Wagners "What do do when your child has Obsessive Compulsive Disorder" and do the workbook "What to do when your brain gets stuck" with your child. If you need more info, let me know.

 

 

I think it is important to determine if a child has typical "OCD" or a "Pandas" illness--

which, like Sydenham's Chorea, may involve physical and neuropsych. symptoms of OCD/tics/etc.

 

We believe that IF indeed your child has a Pandas illness, which is manifesting with OCD then you must treat the underlying illness to get at it--

 

We spent thousands of dollars on CBT, cognitive behavioral therapy with a very skilled therapist.

We were helped in that it gave us a "vocab" to speak about the symptoms with our d, and an outside (albeit expensive) listening ear once a week--BUT, this young bright therapist acknowledged that most children made progress when applying the techniques--and our d was not making the expected progress...hmmm....

 

I do agree a wide variety of therapies may be helpful to rid a child of any "learned" behaviors-- BUT if a child HAS Pandas, OCD and/or tics are thought to be physical manifestations of an underlying illness.

[Megs_Mom]

I think it is important to determine if a child has typical "OCD" or a "Pandas" illness--

which, like Sydenham's Chorea, may involve physical and neuropsych. symptoms of OCD/tics/etc.

 

We believe that IF indeed your child has a Pandas illness, which is manifesting with OCD then you must treat the underlying illness to get at it--

 

We spent thousands of dollars on CBT, cognitive behavioral therapy with a very skilled therapist.

We were helped in that it gave us a "vocab" to speak about the symptoms with our d, and an outside (albeit expensive) listening ear once a week--BUT, this young bright therapist acknowledged that most children made progress when applying the techniques--and our d was not making the expected progress...hmmm....

 

I do agree a wide variety of therapies may be helpful to rid a child of any "learned" behaviors-- BUT if a child HAS Pandas, OCD and/or tics are thought to be physical manifestations of an underlying illness.

 

 

Hi T-Mom. I understand your frustration, and don't argue with anythign you have said here (except that I don't think regular OCD is learned behavior either, not sure if that is what you meant). You may have had a great therapist - we unfortunately had 2 really nice therapists who said they could deal with OCD - but actually only understood CBT. They did not understand the actual techniques for ERP (Exposure & Ritual Prevention). ERP is a subgroup of CBT - and a lot of people are not extensively trained. They were great for anxiety & highly recommended. But not great for OCD. Our daughter was going backwards very very quickly into a severe OCD episode. We had to read a book writen for clinicians by Dr. John March, in order to finally know what we were looking for. We then found a therapist who did ERP, and has worked on these tools with kids for 20 years. Sadly, we had to drive 5 hours round trip each week. So I completely understand your feelings about this process and the expense and time. I am clarifying here for others, that may be confused about CBT and ERP. For an OCD child, CBT ideally should only be the first few sessions - when the child learns what OCD is, and how the tools work. Then they should quickly move to the "detective work" stage, developing a reward plan and then to finding tiny small successes that will help build confidence in their ability to use the tools.

 

I am always very careful to say to a PANDAS parent, that medical treatment is the first priority. We started ERP before we understood that there were medical options. We also believe that the "underlying medical issue should be treated". But I also believe that ERP therapy can help some children keep from spiraling out of control, to help them feel better & be able to communicate more. For some of us, even with medical treatment, the OCD seems to be "sticky" - and it seems to take a while to get rid of altogether - so we kept up the ERP. And as the medical treatment works, perhaps it can to help speed the process. I say "perhaps", because no research has been done with PANDAS children. So I can only tell you that it has worked to help our child. You may say that it has not worked for yours. Those are both valid stories, as I expect we both have children with PANDAS. There is no reseach that shows that this does not work, or that it does work for PANDAS children. There is no research to show that SSRI's work for PANDAS children or don't work. I hope those studies start soon.

 

In the meantime, I can only share our story, and hope that it is of help to some. I have little to share here medically, that others cannot better communicate than I can. I am appreciative of the support that I receive in terms of medical recommendations.

 

We have also used Habit Reversal with Meg. And I should add that we still have 2-5% of the OCD left. I am hopeful that some changes in antibiotics & steroid medication will help this. In the meantime, the tools that she has used allow us a language to calmly discuss what is happening, and for her to overcome the fears that still rocket into her brain from time to time. Usually, she can overcome these with minimal support, and she not longer misses out on any activities. She also believes in her own bravery, and that has been a nice side effect.

 

Next time we have OCD attack, we hope to treat much more quickly medically. I'll let you know then, if we still need ERP, or if the medical therapy works quickly and conclusively.

[T_Mom]

Hi Meg's Mom--

I am sorry, I really do not intend to be slamming CBT or therapies that may be found helpful--Certainly these therapies can be helpful to many people for many issues.

 

I was articulating the fact that in our experience, we have found PANDAS to be a physical malady which must be (if it is PANDAS) treated physically in order to truly address the symptoms. I would agree that CBT, counseling, ERP and the like can be very helpful given the right circumstances--which most professionals would agree is a child that can benefit from cognitive behavioral therapy.

 

We visited doctors from some fairly well respected hospitals and I cannot tell you how many times I heard that the "standard protocol" for treating OCD was CBT and SSRI's... however,

-- what worked to rid our child of OCD and tics were the antibiotics and steroids (--thanks for that suggestion Dr. K.)

 

Now, surely there was some benefit from the thousands of dollars we desperately forked out for the "standard protocol" for OCD (SSRI's and CBT) but in the end that was only "helpful" in a very general way. Antibiotics and steroids made it go away--

That has been our experience--and I do respect yours-- All the Best,

TMom

[EAMom]

I'd be great if there were actually some double blind studies as to whether CBT, SSRI's, ERP therapy were effective in the PANDAS subgroup...

it'd be interesting to compare treatment results to a group of PANDAS kids receiving high dose abs/immunomod. tx (IVIG/pex/steroids).