New Member, son is making slow recovery from severe PANDAS

[Ellen]

Hi,

I am new to this website and would like to know if anyone has suggestions for supplements or other natural therapies that might be helpful for OCD. My 12- year-old son Simon has a severe case of PANDAS that began two and a half years ago after a strep infection and became much worse six months later after he received two vaccines (Chicken Pox and Hep A) during a time when his allergies were acting up. Simon's PANDAS story is so long and complicated I could write a book about it, but I will try to give only the most pertinent details here.

The year following the vaccines was devastating for him and for our entire family. Before this he was a very well-rounded, high achieving, child who was an A student, an avid reader and gifted writer, who was considered a role model by his teachers and who loved learning and was enthusiastic about everything. He did not have any behavioral, focusing or psychiatric difficulties of any kind. When Simon was five, we learned about PANDAS from a neurologist because he had developed mild tics that seemed to be associated with strep. My husband and I noticed the tics would eventually disappear but they would often flare up again whenever he contracted strep, which was about once a year. The tics were not a major problem, and they did not interfere with school or his life in any way. But all that changed two and a half years ago at the age of ten, when he developed some rather intense OCD after a strep and complained of curse words and other intrusive thoughts stuck in his head. At that point we took him to see an OCD psychologist, and she suggested some cognitive behavioral strategies that seemed to help. Simon was receptive to the therapy and was learning ways to keep his OCD from taking over, but at the same time my husband and I noticed he was having a harder time getting homework done for school and was losing interest in fiction reading. However, he graduated fifth grade with all A's on his report card and at the beginning of the summer, the psychologist thought he was doing well enough to take the summer off from therapy. In August of that year, Simon received the Chicken Pox and Hep A vaccines (the doc told me that it was not a problem that his allergies were acting up) and he started middle school a week later. Within three weeks of the vaccines, there were dramatic neuropsychiatric changes in him and it was as if a stranger had taken over our son. He developed insomnia, major hyperactivity, intense anxiety and pacing, an explosion of tics, facial contortions, and his OCD was back and worse than it had ever been before. He was not doing any homework (which was completely out of character for him), and the OCD would cause him to go into trance-like states and be unresponsive for several minutes at a time. He was evaluated by a neurologist who ruled out a seizure disorder and diagnosed him with strep-linked Tourettes, OCD, and ADHD. Within the next month the problems got even worse and he became impulsive and started having rage attacks. We saw numerous experts and eventually most agreed that there was a lot of clinical evidence to support the theory that Simon's neuropsychiatric difficulties were triggered by strep and dramatically worsened as a result of the vaccines. For several months we tried treating the OCD with SSRI medications, but that only made things worse. His behavior became so impulsive and out of control that it led to seven psychiatric hospitalizations in a period of six months. It was a nightmare you would have to live through to understand, and I still can't wrap my head around the fact that this actually happened. We eventually realized that SSRIs were not the way to go with Simon, and things did not improve until we got him to a DAN doctor and she started him on a gluten and casein free diet along with numerous supplements. Since he started this diet in May of 2008 he has been much more stable and has not had to be rehospitalized. Since then he has made very slow but steady progress from a number of alternative treatments. He had plasma exchange in Philadelphia last summer, and although we did not see immediate results, we did notice some good but not dramatic improvements a couple of months later. When he was at his lowest point in this ordeal, during the time when he was in and out of hospitals, he had given up all of his creative interests, was unable to focus on anything for any length of time, and would alternate between trancing out and screaming all day long. Now after over a year of seeing the DAN doctor and doing alternative treatments, he has made some great progress. He is able to do homework (with lots of help from my husband and me), he has resumed most of his creative interests, and after a year of private Hebrew tutoring, he just had his BarMitzvah. So he really has come a long way, but his OCD can still be a major problem sometimes. He still struggles with fiction reading, cannot alway focus on what people are saying to him, and there are still some days when the intrusive thoughts cause severe agitation and frustration. My husband and I are happy with the progress he has made, but we really would like to see a more dramatic improvement with the OCD. Several months ago, our DAN doctor suggested neurofeedback, and so far he has had about 20 sessions. I think it is helping him cope better with the OCD, and I would definitely recommend it for anyone who struggles with anxiety. It is one great tool in the toolbox, but it does not eliminate the OCD (nothing has so far and I don't know if anything ever will). I want to know if anyone has any suggestions for supplements or other natural therapies that have proved to be helpful for anxiety in general and OCD in particular. Right now he still sees the DAN doctor and he is on 250 mg of zithromax twice a week for strep prevention and a number of supplements including taurine, GABA, Vitamin E, Flax Oil, probiotics, I-Carnitine, Acetyl-L-Carnitine, Digestive Enzymes, Pycnogenol, COQ10, Vitamin C, and zinc. At one point we tried 5HTP for the OCD, but I stopped it after a week because it seemed to worsen the problem. I am planning to ask the DAN doctor about additional supplements or vitamins to try, but I thought I would try this forum first. Any success stories or other info about effective treatment for OCD would be appreciated.

 

=

[thereishope]

First off, know you are not alone. I noticed my son's creativity decrease w/ PANDAS and even though his first episode w/ it was 9+ months ago, it's hasn't fully returned. He use to love playing w/ action figures (he's 5). He'd play w/ them for hours. When I ask him now why he doesn't play w/ any of them, he's says he's different now and doesn't want to. His imagination has improved dramatically. He is back to pretend playing. drawing, cracking jokes, etc. But the way that interest win his favorite toys went away is sad.

 

My son was also considered an extreme case. His behavior problems went away the first 2 times and he, overall, got better the 3rd time, but not completely. The OCD stayed and we are working on that. His last + strep was in March 2009.From speaking to others, you can give Omega 3's, DHA, choline to improve OCD behaviors. If he has allergies, don't give Claritin, give Benadryl. Stay away from HFC and food coloring. I can't always do it, but I try my best.

 

Others have experienced problems w/ vaccines as well. I know some have seen worsening of symptoms w/ them. My son has yet to recieve a vaccine since his PANDAS diagnosis. I do know 7 others (including my son) who have specifically had reactions to chicken pox vaccine.

[T_Mom]

Hi Ellen,

I am so sorry for your difficult time.

Some of us, with children who had PANDAS related sudden-onset severe OCD exacerbations/and tics, have seen a significant reduction of symptoms in our children when given full-dose antibiotics for a month or more. (most seem to have used Amoxicillan or Azithromycin.)

 

I understand your son is now on 250mg of Zithro twice a week as a preventative effort--If you have never tried a longer time period of full-strength, in my opinion it may be worth trying, we have found it to be highly effective.

Best,

 

TMom

[EAMom]

Hi Ellen,

 

Wow...that is quite a saga!

 

my thoughts:

 

I completely agree with T. Mom about increasing the Azith.

 

How much does your son weigh? I would do a minimum of 250mg/day at least for a month or two to see if that makes a difference. My dd (54 pounds) has been on 250mg/day for over a year. Her (Stanford U.) immunlogist felt this would be a safe dose for her to be on for years. If your son is big I would even consider doing 375 or 500mg/day (if he is close to an adult size). We believe (immunologist agrees) that much of Azithromycin's effectiveness lies in its anti-inflammatory/immune modulating prooperties, not just strep prevention. So, while 500mg a week may be enough to prevent strep, you are not getting much immune modulation at this dose. (We've noticed a difference when we tried to lower dd's dose to 125mg/day.)

 

You might also consider adding on Ibuprofen (advil, motrin)...my dd is on a low dose long term (200mg/day for her size). Short term, you could give it 2-3 x daily. Strangely enough, many PANDAS parents find it is helpful. Our immunologist agrees with our theories on the ibuprofen. I'm not sure why it helps...maybe it cuts down on the inflammation.

 

What dr. treated you in Philadelphia? (I'm assuming you live somewhere on the East Coast). Dr. Latimer has seen some kids on this forum. She is in DC. There is also Dr. Trifiletti in NJ but I haven't heard of anybody being treated by him recently.

 

You should also consider checking out Worried dad's posts on Madeleine Cunningham blood tests...some of us have found running labs through her to be helpful and informative. http://www.latitudes.org/forums/index.php?showtopic=4834

 

I also wonder if IVIG (even though your son has already had PEX) would be helpful. Might be something to ask Dr. Latimer since she seems to do both forms of treatment.

 

Curious...is there a reason you are doing Flax seed oil (no DHA) rather than fish oil (which has DHA)? You might also consider getting Vit. D levels checked...esp. if you live in the Northeast.

[Suzan]

Hello and HUGS!

 

We use Vaxa's Attend and Extress (during the school year I also use the Memorin so we buy the Strategy Pac). We don't use it specifically for OCD but it seems to really help my 7 yr old get through her PANDAS epsiodes. It helps calm her hyperactivity and helps control her crazy brain and really helps with her over all calmness and behavior. I thought I would mention it, in case it seems like something you would like to try. Otherwise, my other dd is using many of the supplements you've already mentioned.

 

Good luck to you!

 

Susan

[Ellen]

First off, know you are not alone. I noticed my son's creativity decrease w/ PANDAS and even though his first episode w/ it was 9+ months ago, it's hasn't fully returned. He use to love playing w/ action figures (he's 5). He'd play w/ them for hours. When I ask him now why he doesn't play w/ any of them, he's says he's different now and doesn't want to. His imagination has improved dramatically. He is back to pretend playing. drawing, cracking jokes, etc. But the way that interest win his favorite toys went away is sad.

 

My son was also considered an extreme case. His behavior problems went away the first 2 times and he, overall, got better the 3rd time, but not completely. The OCD stayed and we are working on that. His last + strep was in March 2009.From speaking to others, you can give Omega 3's, DHA, choline to improve OCD behaviors. If he has allergies, don't give Claritin, give Benadryl. Stay away from HFC and food coloring. I can't always do it, but I try my best.

 

Others have experienced problems w/ vaccines as well. I know some have seen worsening of symptoms w/ them. My son has yet to recieve a vaccine since his PANDAS diagnosis. I do know 7 others (including my son) who have specifically had reactions to chicken pox vaccine.

[Ellen]

Thanks for replying so quickly. It helps to know I am not alone. I did not there were so many other children who had similar reactions to the chicken pox vaccine. Please keep me informed if you find anything specific that you are now working on that helps with your son's ocd. I will mention your suggestions to my son's DAN doctor. I have not heard about choline helping with OCD behaviors so that is something I will look into. Many thanks again.

 

 

First off, know you are not alone. I noticed my son's creativity decrease w/ PANDAS and even though his first episode w/ it was 9+ months ago, it's hasn't fully returned. He use to love playing w/ action figures (he's 5). He'd play w/ them for hours. When I ask him now why he doesn't play w/ any of them, he's says he's different now and doesn't want to. His imagination has improved dramatically. He is back to pretend playing. drawing, cracking jokes, etc. But the way that interest win his favorite toys went away is sad.

 

My son was also considered an extreme case. His behavior problems went away the first 2 times and he, overall, got better the 3rd time, but not completely. The OCD stayed and we are working on that. His last + strep was in March 2009.From speaking to others, you can give Omega 3's, DHA, choline to improve OCD behaviors. If he has allergies, don't give Claritin, give Benadryl. Stay away from HFC and food coloring. I can't always do it, but I try my best.

 

Others have experienced problems w/ vaccines as well. I know some have seen worsening of symptoms w/ them. My son has yet to recieve a vaccine since his PANDAS diagnosis. I do know 7 others (including my son) who have specifically had reactions to chicken pox vaccine.

[Ellen]

I didn't mention this before, but after we got the diagnosis of PANDAS we tried various antibiotics including zithromax at full strength for many months (he is allergic to Amoxicillan so we stayed away from that), but it was not really helping and we eventually moved to a preventative dose when he started to get some stomach distress. I do feel we gave the antibiotics a fair try. I wish it had been more effective for Simon. Thanks very much for the suggestion. I guess antibiotics do not help in all cases.

 

Hi Ellen,

I am so sorry for your difficult time.

Some of us, with children who had PANDAS related sudden-onset severe OCD exacerbations/and tics, have seen a significant reduction of symptoms in our children when given full-dose antibiotics for a month or more. (most seem to have used Amoxicillan or Azithromycin.)

 

I understand your son is now on 250mg of Zithro twice a week as a preventative effort--If you have never tried a longer time period of full-strength, in my opinion it may be worth trying, we have found it to be highly effective.

Best,

 

TMom

[thereishope]

Choline is suppose to help with "healthy brain function" and help with moods. I believe that is what is found in breastmilk. If you think it through, if choline helps with brain function, it may help with the chemical imbalance that is taking place. I also read the book "Freeing your Child from OCD" and learned a lot. The book "Talking Back to OCD" was recommended, but I have yet to buy it. My library had the first title, not the second. PANDAS is even ackowledged in the book. What I found reassuring is the pics of the brain of a child w/ OCD vs a child w/o OCD. There is a clear difference and shows it is chemical. And how even CBT alone is suppose to change the chemicals in the brain.Even though my son hasn't begun CBT yet, I have started trying ot get him to eliminate the rituals he has. I have to wean him off his rituals and slowly change them before attempting full elimination.

 

Let me also clarify that my son did not have these OCD tendencies prior to his first + strep test. None.

 

I feel I am at the point that even though the OCD my son has is a result of PANDAS, I am at the point that I am treating the OCD, as OCD. If your child has those thoughts bombarded at them for so long, it becomes too ingrained and it won't go away as naturally as it is suppose to with PANDAS.

 

My son is also not on any psych meds and it is not being recommended at this time.

[swim]

I don't know if this would help, but we did some neurotransmitter testing on my son after he kept saying his brain was noisy and it was hard for him to sleep. The test was done using urine and it tested epinephrin, norepinephrin, dopamine, serotonin, glycine, taurine, GABA, Glutamine, Glutamate and a few other things. We found the chemicals in his brain were way out of balance - most notably the excitable neurotransmitters. We did some natural supplements and within a week my son commented that his brain was quiet and he started sleeping MUCH better. We retested about 9 months later and found he was just about normal in all of his levels. Not sure if there would be any connection to the OCD since it seems the OCD might be triggered by inflammation of the basal ganglia, but just thought I would mention it since there was some mention in this topic balancing brain chemicals. The test was done by a company called Neuro Science.

[Ellen]

Hi Ellen,

 

Wow...that is quite a saga!

 

my thoughts:

 

I completely agree with T. Mom about increasing the Azith.

 

How much does your son weigh? I would do a minimum of 250mg/day at least for a month or two to see if that makes a difference. My dd (54 pounds) has been on 250mg/day for over a year. Her (Stanford U.) immunlogist felt this would be a safe dose for her to be on for years. If your son is big I would even consider doing 375 or 500mg/day (if he is close to an adult size). We believe (immunologist agrees) that much of Azithromycin's effectiveness lies in its anti-inflammatory/immune modulating prooperties, not just strep prevention. So, while 500mg a week may be enough to prevent strep, you are not getting much immune modulation at this dose. (We've noticed a difference when we tried to lower dd's dose to 125mg/day.)

 

You might also consider adding on Ibuprofen (advil, motrin)...my dd is on a low dose long term (200mg/day for her size). Short term, you could give it 2-3 x daily. Strangely enough, many PANDAS parents find it is helpful. Our immunologist agrees with our theories on the ibuprofen. I'm not sure why it helps...maybe it cuts down on the inflammation.

 

What dr. treated you in Philadelphia? (I'm assuming you live somewhere on the East Coast). Dr. Latimer has seen some kids on this forum. She is in DC. There is also Dr. Trifiletti in NJ but I haven't heard of anybody being treated by him recently.

 

You should also consider checking out Worried dad's posts on Madeleine Cunningham blood tests...some of us have found running labs through her to be helpful and informative. http://www.latitudes.org/forums/index.php?showtopic=4834

 

I also wonder if IVIG (even though your son has already had PEX) would be helpful. Might be something to ask Dr. Latimer since she seems to do both forms of treatment.

 

Curious...is there a reason you are doing Flax seed oil (no DHA) rather than fish oil (which has DHA)? You might also consider getting Vit. D levels checked...esp. if you live in the Northeast.

 

 

You are right. It is a saga. I am hoping this drama we have been living will be one with a happy ending. Thanks for your suggestions. I have wondered about whether Simon should be on Vitamin D in addition to his other supplements, and I think having his levels checked would be a smart move. We are doing flax oil instead of fish oil because of a possible allergy to fish. He has not been officially tested for this allergy, and this is something I could do some time. Does fish oil have a specific advantage over flax oil?

We did try full strength antibiotics (zithromax and others but not amoxicillin because he is allergic to that) for many months after Simon was diagnosed with PANDAS. It did not help, and we eventually moved to a preventative dose of Zithromax when the full dose was starting to cause stomach distress, even with the probiotics. So I guess this treatment does not work in all PANDAS cases. You asked about the dr. who treated him with plasma exchange in Philadelphia. This was Josephine Elia of CHOP. She was recommended to us by Dr. James Leckman of Yale who is not far from us and who was one of the experts who evaluated Simon early on in his illness. We made numerous three hour drives back and forth to Philly last summer and we had to stop treatment after about 70 percent of the goal was reached because of problems with his veins. Even though it was not the dramatic fix we hoped it would be, I did feel the plasma exchange was worth it because we did see some positive changes about two months later. At one point, before Simon started plasma exchange, we had considered IVIG, but when his IGA test came out very low his DAN doctor advised against it. According to her and others, the risk of an allergic reaction was too high. The Ibuprofen suggestion is interesting, but because Simon has a very sensitive stomach, I am not sure I would want to try it with him. At one point he was on Minocycline (which is also supposed to have anti-inflammatory properties), but it did not seem to help.Thanks for the info about Madeleine Cunningham. I will check it out.

[EAMom]

Hi Ellen,

 

fish oil has DHA (and EPA)

flax seed oil has only ALA...our bodies have a hard time converting ALA to DHA

 

here's an article (there are lots if you google) http://ezinearticles.com/?Fish-Oil-Vs-Flax...&id=2479497

 

The whole foods (at least the one by me!) does have eggs with DHA. I think the chickens are fed some kind of algae that has DHA. 2 eggs has 300mg of DHA.

 

There are also supplements that have vegetarian sources of DHA available. I think they use some kind of algae (like the chickens). Just google "vegetarian DHA".

[P_Mom]

Just a FYI on the omega's 3's......for PANDAS, Dr. Murphy (among others) has stressed the importance of EPA, so, it is recommended to give your child an omega 3 supplement with a higher percentage of EPA than DHA. (1000 mg had been recommended, or, as close as you can get to that))

 

Carlson's for Kids is good and is the only fish oil my kids could take.

[EAMom]

My dd likes the Carlson's too! I sneak a little on her morning pancakes. I buy the regular, not the kids. I'm not sure if there is a difference between the two? Both are lemon flavored. I was almost under the impression that the kids version had a stronger lemon flavor...but I'm not sure. We did have the kids version at one point...but amazon has a good price on the adult (big bottle) so I get that now.

 

I was always under the impression that DHA was the omega 3 that was most important for the brain. In anycase, flax seed oil only has ALA, not DHA or EPA.

 

I also cook with Canola oil which has ALA. And, I do add some flax seed meal into the pancakes. So...who knows what dd's actual ratio of omega 3's ends up being. I did feel it was important to do the fish oil/eggs since my dd won't actually eat fish...so maybe I'm at least putting her up to a more "normal level" of kids (that eat a well balanced diet)!

[Ellen]

I did not know this about DHA. I think the vegetarian form may be the way to go for us because of the possible fish allergy. Thanks.

 

Hi Ellen,

 

fish oil has DHA (and EPA)

flax seed oil has only ALA...our bodies have a hard time converting ALA to DHA

 

here's an article (there are lots if you google) http://ezinearticles.com/?Fish-Oil-Vs-Flax...&id=2479497

 

The whole foods (at least the one by me!) does have eggs with DHA. I think the chickens are fed some kind of algae that has DHA. 2 eggs has 300mg of DHA.

 

There are also supplements that have vegetarian sources of DHA available. I think they use some kind of algae (like the chickens). Just google "vegetarian DHA".