Conference

[pr40]

 

Thank you, I have sent this along to our PANDAS-friendly but unable to treat (Canadian practice) pediatric psychologist.

we believe myself and my son have bartonella, but he is not handling any treatments at all, makes his rages psychotic, just single drop of an herb makes him crazy, wondering if you could share your LLMD with me and if anyone has heard of someone going psychotic on the slightest bug killer?

 

i want to comment only on this posting by dgfindley -- if your kid reacts so much, you may want to figure out his metyhilation mutations and deal with them first before getting any medication. it might be helpful

[norcalmom]

Did Dr Agaliu say anything about when he may publish something? Or Cunningham? The past several conferences (several years worth)) they were in the verge if publishing - and it's been so long. It's so frustrating. Dr A has only been working pandas for 2(?) years or so-about .but Dr C has had thousands of blood samples from years of research.

I am the biggest fan if those two- the raw science and data is what will ultimately lead to acceptance and the best, most targeted, treatments, but they need to get it out there to the medical community.

[nicklemama]

Dr Agalliu's paper is very soon. I think they actually said any day now.

[JoyBop]

I too heard that it was "coming".

 

On a different note I wanted to share some very practical tips I got out of the conference.

 

-each child should have their own tooth paste and their brushes and paste should be stored separately. We bought little plastic pencil boxes and gave each kid their own set if brushes and paste that we will store separately and run through the dishwasher periodically. I never thought of the strep being transmitted from paste to brush!

 

-Peggy Chapman mentioned that a flare can be brought in by a simple cold or virus, even if the child doesn't seem to contract it. Another cause of flares are loose teeth or teeth coming in. Any source of inflammation in the body can set off a flare. She said not to panic. These types if flares general last only 8 days and they will return to their baseline soon. That gave me great perspective!

 

-Many of the doctors stated they have seen good results from tonsillectomy. Correct me if I'm wrong, but I believe it was Dr. Latimer that said she likes to see them get a dose of IV steroids prior to surgery as the post surgical inflammation can set off a flare.

 

-the head of the MGH CBT program gave guidelines on CBT for PANDAS. Do not start CBT or practice ERP during a flare. Instead work on relaxation techniques and crisis management. When a child is well enough resume treatments. Even after remission its a good idea to continue to meet with your therapist for "check in" sessions once a month so kids retain their skills and will have more resources in case they flare again.

 

-Dr Swedo reminded all of us not to "chase titres" because they can remain elevated for a year or more post infection. She also started out the conference by reviewing her criteria for PANDAS and urged us to look elsewhere if we did not remember the day and hour that our child changed. Dr. T respectfully disagreed later in the conference, but can appreciate why they need to set such specific criteria until the hypothesis are proven.

 

-Dr. Bock gave his talk about the gut/brain connection. He made us all repeat after him, "leaky gut, leaky brain." He said curcumin is a great alternative to ibuprofen because long term use of it can cause the gut to become impermeable. He also said we should check for and treat yeast. Kids that are on long term antibiotics are especially at risk for yeast.

 

-several doctors discussed briefly the importance of vitamin D. The range they like to see our PANDAS kids is between 50 and 70. The low end of normal is around 30 but this is too low.

 

-Peggy Chapman reviewed how to handle a melt down. It work!! Check her slide show for details. She also gave advice on how to explain PANDAS to children.

 

-Dr. Swedo said that it can take an entire year for the full benefits of IV IG. Dr. Walter said that you are considered a "responder" if you experience a dramatic improvement of symptoms within the first few months. Improvement is measured using Y-bocs (Yale brown OCD test) Dr. Walter would not give a second treatment if there the patient didn't respond the first time. Her represented studies showed the the the second IV IG showed less dramatic improvement than the first.

 

Dr. Swedo said the plasmapheresis is only available at very few locations in the country and is therefore reserved for the most life threatening cases. It is a safer and more effective treatment than IV IG. Correct me if in wrong but I heard her say that plasmapheresis is an instant cure.

 

Please feel free to add advice and info that you found particularly helpful.

Edited November 14, 2013 by JoyBop

[searching_for_help]

Joybop - what did Dr. Bock say was a good alternative to Ibuprofen?

Thanks so much for the information!

[JoyBop]

Just when you think it's safe to use auto-correct on your iphone! No, church is not the answer. I went back and edited it to say Curumin is a good alternative. I believe he said it is an antioxident as well as an anti-inflammatory.

[PowPow]

Church sure won't hurt, though, JoyBop! Lol

Any comments on sibling groups?

[nicklemama]

Curcumin as an antiinflammatory. Dr Walters said you get diminishing returns with each IVIG so be judicious in when you choose the first.

 

Plasmapheresis is the best choice but do to the difficulty of finding hospitals equipped to do it, they have settled on pursuing IVIG as the choice. I thnk that is a mistake. It's hard for me to accept that my son must have second best because it's too hard to get. I think they underestimate parents. If they would come out and promote plasmapheresis as the top choice, I think we as parents could start a movement to that, as well. It's covered by insurance. It requires hospitalization and a pic line. Maybe more expensive but I think it was Dr Latimer that said no more risky when you take into consideration IVIG is not without risk.

 

It provides near instantaneous improvement, as reported by Dr Latimer. No waiting months to a year for maximum benefit.

 

One of them gave a statistic on the incidence of siblings with PANS. it's high. I think in the 40% range but someone who took notes can correct that.

Edited November 14, 2013 by nicklemama

[JoyBop]

Pow Pow, thanks for making me laugh!

 

They did reference the study that showed the frequency in families for rheumatic fever.

 

I dug one up here...

http://circ.ahajournals.org/content/10/5/699.full.pdf

[JoyBop]

Dr. Bock did say that Curcumin is also an anti-oxidant. Im going to try to find a good source of it.

 

Here is a study I pulled off of Pubmed

 

"Abstract

Curcumin, a widely used spice and coloring agent in food, has been shown to possess potent antioxidant, antitumor promoting and anti-inflammatory properties in vitro and in vivo. The mechanism(s) of such pleiotropic action by this yellow pigment is unknown; whether induction of distinct antioxidant genes contributes to the beneficial activities mediated by curcumin remains to be investigated. In the present study we examined the effect of curcumin on endothelial heme oxygenase-1 (HO-1 or HSP32), an inducible stress protein that degrades heme to the vasoactive molecule carbon monoxide and the antioxidant biliverdin. Exposure of bovine aortic endothelial cells to curcumin (5-15 microM) resulted in both a concentration- and time-dependent increase in HO-1 mRNA, protein expression and heme oxygenase activity. Hypoxia (18 h) also caused a significant (P < 0.05) increase in heme oxygenase activity which was markedly potentiated by the presence of low concentrations of curcumin (5 microM). Interestingly, prolonged incubation (18 h) with curcumin in normoxic or hypoxic conditions resulted in enhanced cellular resistance to oxidative damage; this cytoprotective effect was considerably attenuated by tin protoporphyrin IX, an inhibitor of heme oxygenase activity. In contrast, exposure of cells to curcumin for a period of time insufficient to up-regulate HO-1 (1.5 h) did not prevent oxidant-mediated injury. These data indicate that curcumin is a potent inducer of HO-1 in vascular endothelial cells and that increased heme oxygenase activity is an important component in curcumin-mediated cytoprotection against oxidative stress."

[NancyD]

He suggested that my DD try Lutiforce, which has luteolin bioflavonoid in it. This is to replace ibuprofen.

 

Joybop - what did Dr. Bock say was a good alternative to Ibuprofen? Thanks so much for the information!

Edited November 15, 2013 by NancyD

[EAMom]

There is a PANDAS parent blog called "PANS Life" with a good summary of some of the presentations. It is called "The Conference: part 1" so I assume there is more to come!

 

http://www.panslife.com/pans-life-journey/2013/11/14/the-conference-part-1.html

Edited November 15, 2013 by EAMom

[cara615]

This is all such great information! my boys are twins (almost 6). one has had motor and vocal tics with mild OCD since about 3 years old. Looking back, I do not know if any of his "flares" were due to infection. He has had strep 2x in his young life. However, the flare that got us a diagnosis of TS/OCD/ADHD was in May. He was extremely severe. I did not know about PANDAS at that time enough to get a throat culture. Instead I just addressed his diet and methylation with a homeopathic MD. I was able to get his tics and behaviors down 99%.

 

Fast forward to Nov. His tics spiked over the course of a week. I got him a STREP test and it was positive. he had no symptoms. He is on amoxicillan now and we may take some blood to determine how to proceed. He also had a stool test done that we are waiting on results for. Should be three weeks more for that and then we can see what types of bacteria are in his gut.

 

my question is: since I suspect one of my twins to have PANDAS, should I suspect my other son to have it too? my other son has no tics, maybe some OCD (not sure if its just who he is) and no other symptoms. He is well adjusted at school.

 

I think I am going to get my other son a STREP test this weekend too. Just to see.....

 

Lastly, the next conference in Atlanta! I live in Atlanta!

[EAMom]

Cara615-

Yup, I would definitely watch out for the other twin. There is a high sibling rate in PANDAS. I think it's possible his milder symptoms are early or low grade PANDAS/PANS. Throat cultures (yup, there is a lot of stealth strep w/out typical symptoms) and other monitoring for infections is important.

 

Are they identical twins?

 

I should add that even if your other son doesn't have PANDAS, it is important to make sure he is clear of infections (ie make sure he isn't a strep carrier--do the throat culture) since PANDAS kids will react to illnesses and strep in other members of the household.

Edited November 15, 2013 by EAMom

[cara615]

Twins are fraternal just did a swab on brother and it was negative. We took blood on my ticcer today. ASO, anti d-nase b, etc. week for results.