PANDAS in later teen years

[MarkW]

I am new and hope this post is done properly.

 

Our son began showing anxiety problems, forgetfulness, and in general becoming withdrawn and it hit a peak point when he was 18. We initially considered environmental factors and tested for mold, heavy metals and did some detox all at an Environmental Health Center in Dallas. Mold didn't seem to be a problem, had typical seasonal allergies, but did show signs of heavy metals including aluminum.

 

After several weeks of this we then sought and found a psychiatrist who wanted to do lab work including urine and blood test. Urine test would show neurotransmitter levels which were high and low across the board and the blood work came back with DNASE-B Antibody 480 H titer and Anti-Streptolysin O titers at 394 H. Our psychiatrist immediately sent us to a ENT for a throat culture and it came back negative. Psychiatrist then said regardless of negative throat culture he wanted tonsils removed even though ENT was hesitant. After procedure the ENT came into the Day Surgery Waiting Room to tell us it was a good thing the Psychiatrist persisted as the tonsils were in the 1% worst shape he had ever seen. Procedure done at age 19.

 

It was at that time we heard for the first time PANDAS from our Psychiatrist. We finally had a name and something to work on. Many of the PANDAS symptoms seemed to fit (clinginess, frequent urination, bedtime rituals, age regression). He became withdrawn from all friends and wouldn't leave our house. Over time all of this improved and he started to contact friends. I believe his old friends began to detect something had changed and thus haven't stayed in contact although many have gone off to college.

 

Our son recently turned 20 and is still fighting this thing. He has had some OCD symptoms (locking doors which has subsided) and lately it has been whistling. His behavior can be quite normal especially when guest are over but to immediate family it can vary quite a bit. There have been occasions where he seemed somewhat psychotic and has been on small amounts of Risperdol. He was taken off this the past few months because of improvement.

 

For many months we have sent new urine specimens to the lab in order to watch Neourotransmitter levels. Our doctor has adjusted his intake of amino acids to try and get neurotransmitters in the optimum range. The fluctuation continues from high to low, although we do see normal ranges for periods. In addition he takes many different vitamins and oils. Also we give him a anti-strep antibodies shot twice week.

 

Just recently I contacted Dr. Mary Reed from www.ocd-free.org and she has suggested he has a thin myelin sheathing and how this needs to be nourished. We will increase considerably Evening Primrose Oil, Super Omega 3 Oil, Chinese Stress Relief (Herb for Nervous System), and Liver Cleanse.

 

With the wealth of knowledge out there I'm hoping someone can offer advice or otherwise comment on our struggles. Thanks

[faith]

Hello Mark,

thanks for posting of your experience with your son. I am curious, had they ever prescribed antibiotics of any kind for this after PANDAS was suggested? If not, do you know why?

 

Also, regarding what you said about the thin myelin sheathing - were those things suggested to repair that? Have you ever heard of curcumin? This is something our DAN doctor has given us for that same reason as they believe that tics/tourettes stems from autoimune problems and this is a natural product made from turmeric that is supposed to help with the repair of the myelin sheath. I am not presently using it, though. (we are not in PANDAS situation).

 

Faith

[CSP]

Welcome Mark,

 

We are not a pandas family either, but I was wondering how your son has been doing off the risperdal? My son also was on risperdal, and we took him off do to a huge improvement. My son was put on it for very loud vocal tics. You did not say if your son has tic. Is it only OCD?

 

Other then the supplements, have you changed his diet? I see that could be a loaded question since he is 20. Is he in college now?

 

Did the Dr. give you any idea when the PANDAS might stop rearing it's ugly head.

 

Sorry I was not much help, but wanted to keep your post up front so maybe some of the PANDAS moms will see it.

 

God Bless

C.P.

[michele]

I believe we were told to use GLA first and then Borage 30 mg twice a week to get Omega 6's and 9's?

 

Mark thanks for writing in. I am sure you have read here there is no written plan and we are all trying something diffrerent to help our unique situations. I had never heard of what they are suggestioning you to take. We see a DAN Dr. He has us on a list of supplements and amino acids based on blood work samples, and urine and stool tests we had done. Please keep us posted on how your son does with the new supplements. This is a learning process. I discover something new everyday here. The people are so knowledgeable and caring. Have you tried an antibiotic yet? We saw improvement with that.

 

Michele

 

Hello Mark,

thanks for posting of your experience with your son. I am curious, had they ever prescribed antibiotics of any kind for this after PANDAS was suggested? If not, do you know why?

 

Also, regarding what you said about the thin myelin sheathing - were those things suggested to repair that? Have you ever heard of curcumin? This is something our DAN doctor has given us for that same reason as they believe that tics/tourettes stems from autoimune problems and this is a natural product made from turmeric that is supposed to help with the repair of the myelin sheath. I am not presently using it, though. (we are not in PANDAS situation).

 

Faith

[MarkW]

Hello Mark,

thanks for posting of your experience with your son. I am curious, had they ever prescribed antibiotics of any kind for this after PANDAS was suggested? If not, do you know why?

 

Also, regarding what you said about the thin myelin sheathing - were those things suggested to repair that? Have you ever heard of curcumin? This is something our DAN doctor has given us for that same reason as they believe that tics/tourettes stems from autoimune problems and this is a natural product made from turmeric that is supposed to help with the repair of the myelin sheath. I am not presently using it, though. (we are not in PANDAS situation).

 

Faith

 

 

Hi Faith,

The only antibiotics that were given to him was when his tonsils were removed. I wish I had asked more questions at the time why are we not trying them. I just don't know why. Our doctor was really focused on his neurotransmitters and was trying to get them in the optimum range along with oils, aminos and vitamins.

 

Dr. Mary Reed had sent me excerpts from her book "Stressed OUT" and she attributes thin myelin sheathing as a common denominator of people who suffer from any number of conditions.

http://www.ocd-free.org/product/STRESS-111

 

My wife has heard/read about the benefits of tumeric but am not aware of curcumin.

 

Our problem really looks to be complex and who knows where it will lead. I agree and everything I've read puts tics in the autoimmune problem area whether its PANDAS related or not.

 

Good Luck

[MarkW]

Welcome Mark,

 

We are not a pandas family either, but I was wondering how your son has been doing off the risperdal? My son also was on risperdal, and we took him off do to a huge improvement. My son was put on it for very loud vocal tics. You did not say if your son has tic. Is it only OCD?

 

Other then the supplements, have you changed his diet? I see that could be a loaded question since he is 20. Is he in college now?

 

Did the Dr. give you any idea when the PANDAS might stop rearing it's ugly head.

 

Sorry I was not much help, but wanted to keep your post up front so maybe some of the PANDAS moms will see it.

 

God Bless

C.P.

 

Our doctor believes in minimal meds as possible (as we do) and we all thought he was at a point where we could discontinue and so we did in November. We'll never know if it was due to lack of meds or not but has taken a turn for the worse - manic episodes - high anxiety. So we are now back on it. You probably already know about the weight gain with Risperdol. Our son had put on 30 lbs but dropped it quickly when taken off. I would say our son fits primarily OCD but there could be more to the story.

 

Yes you are right that is a loaded question with a 20 year old. Of course many of the moms/dads here have younger children and whether that makes it easier or not I don't know. But a head strong 6 ft 190 lb boy doesn't always follow instructions. We try to use as much organic food as possible. I juice from time to time. Free Range meets, etc. We've always tried to eat this way. None of our children were vaccinated either. He isn't in college, he was but when this problem hit, it hit hard and he isn't able to work or get back into school. It's so sad.

 

We just don't know when it will run it's course. It very well may be that other factors are contributing along with the Immune/Strep/Pandas issues.

 

Thanks and God Bless you also.

[MarkW]

I believe we were told to use GLA first and then Borage 30 mg twice a week to get Omega 6's and 9's?

 

Mark thanks for writing in. I am sure you have read here there is no written plan and we are all trying something diffrerent to help our unique situations. I had never heard of what they are suggestioning you to take. We see a DAN Dr. He has us on a list of supplements and amino acids based on blood work samples, and urine and stool tests we had done. Please keep us posted on how your son does with the new supplements. This is a learning process. I discover something new everyday here. The people are so knowledgeable and caring. Have you tried an antibiotic yet? We saw improvement with that.

 

Michele

 

Hello Mark,

thanks for posting of your experience with your son. I am curious, had they ever prescribed antibiotics of any kind for this after PANDAS was suggested? If not, do you know why?

 

Also, regarding what you said about the thin myelin sheathing - were those things suggested to repair that? Have you ever heard of curcumin? This is something our DAN doctor has given us for that same reason as they believe that tics/tourettes stems from autoimune problems and this is a natural product made from turmeric that is supposed to help with the repair of the myelin sheath. I am not presently using it, though. (we are not in PANDAS situation).

 

Faith

 

What I had listed recently came from Dr. Mary Reed, our local Dr. has him on quite many different vitamins/amino acids/oils. I've ordered but haven't administered her vitamins/herbs yet. I have been asked several times now about why no antibiotic and that is something we do wonder about as it wasn't high on our Drs priority list.

[P_Mom]

Mark,

Turmeric and curcumin are one in the same, curcumin being found in Turmeric, turmeric being found in Mustard and it is the Curry spice.

Anyway, with PANDAS, I would highly recommend you try a round of antibiotics to see what happens. It can't hurt! Ask your doc for a round, Azithromycin is a good choice. Yes, when this PANDAS thing hits, it hits hard. My son had sudden onset (almost overnight) severe ocd/vocal tics after strep. Had he have been in school he would have had to drop out temporarily also. My husband and I were on our knees with this, our kid changed drastically right before our eyes. (he is only 5) Antibiotics really help control the symptoms while they are there, as well as supplements. He is currently doing very well and is on prophylactic antibiotics and takes some supplements. (fish oil is a big one) In the event of another big flair up ( I pray this doesn't happen), we will do a full dose antibiotic and I also have our Doctor on board for a steroid burst to alleviate symptoms quickly if needed. Our docotr is also on board for IVIG if needed, now, I mean ONLY if antibiotics and steriods no longer work. IVIG has been show to actually cure this condition in many cases, it readjusts the immune system to proper functioning. Check out www.webpediatrics.com, it has great info. on PANDAS and PITANDS. This doctor is very helpful and will answer your e-mails asap.

 

Kelly

[MarkW]

Mark,

Turmeric and curcumin are one in the same, curcumin being found in Turmeric, turmeric being found in Mustard and it is the Curry spice.

Anyway, with PANDAS, I would highly recommend you try a round of antibiotics to see what happens. It can't hurt! Ask your doc for a round, Azithromycin is a good choice. Yes, when this PANDAS thing hits, it hits hard. My son had sudden onset (almost overnight) severe ocd/vocal tics after strep. Had he have been in school he would have had to drop out temporarily also. My husband and I were on our knees with this, our kid changed drastically right before our eyes. (he is only 5) Antibiotics really help control the symptoms while they are there, as well as supplements. He is currently doing very well and is on prophylactic antibiotics and takes some supplements. (fish oil is a big one) In the event of another big flair up ( I pray this doesn't happen), we will do a full dose antibiotic and I also have our Doctor on board for a steroid burst to alleviate symptoms quickly if needed. Our docotr is also on board for IVIG if needed, now, I mean ONLY if antibiotics and steriods no longer work. IVIG has been show to actually cure this condition in many cases, it readjusts the immune system to proper functioning. Check out www.webpediatrics.com, it has great info. on PANDAS and PITANDS. This doctor is very helpful and will answer your e-mails asap.

 

Kelly

 

Kelly thank you so much for your input. I am aware of the IVIG and who knows where are journey will lead. I'm very glad you caught/diagnosed your PANDAS so quickly. Maybe that was our downfall in that there were no overnight tic symptoms or OCD but seemed to be a gradual thing.

 

Mark

[emma1]

Mark, I could not tell -- did your son develop tics/ocd at as a teen -- or has it lasted into his teens?

 

I ask because my daughter got strep at 16 years old and developed PANDAS-like symptoms. She had high strep titres. Honestly, nothing worked except antibiotics -- then there was a dramatic improvement. We also give inositol for some lingering ocd issues. We try to stay away from omega 6 and 9 and Grapeseed Extract as I believe those are immune boosting, and should be avoided by those with auto-immune issues.

 

We do pretty well -- except when someone in our home becomes ill with just about anything (doesn't need to be strep!). Then I see an increase in symptoms, even though my daughter might not even get sick with whatever the other person has.

[michele]

Emma,

That sounds familiar. Andrew doesn't get sick but just being around it increases his symptoms and can bring on an episode.

Emma, what are you giving for fish oils now? I am still on hold. I was told GLA or Borage oil. I have been giving Monolaurin for the Lauric acid. Thanks.

Michele

 

 

Mark, I could not tell -- did your son develop tics/ocd at as a teen -- or has it lasted into his teens?

 

I ask because my daughter got strep at 16 years old and developed PANDAS-like symptoms. She had high strep titres. Honestly, nothing worked except antibiotics -- then there was a dramatic improvement. We also give inositol for some lingering ocd issues. We try to stay away from omega 6 and 9 and Grapeseed Extract as I believe those are immune boosting, and should be avoided by those with auto-immune issues.

 

We do pretty well -- except when someone in our home becomes ill with just about anything (doesn't need to be strep!). Then I see an increase in symptoms, even though my daughter might not even get sick with whatever the other person has.

[emma1]

Michele, I bought Carlson's, but I thought I saw an increase in symptoms, so I stopped. I then bought the one that you mentioned (Coromega). But things have been going so well -- I haven't given it yet -- a little afraid of rocking the boat.

[MarkW]

Emma,

 

Our son developed Tics/OCD (mostly OCD) well into his teens around 18. He was also having high anxiety/panic episodes. His memory/moods were affected as well. He had pretty bad allergies all the way through childhood. Some OCD syptoms included repetitive door locking, holding breath, and whistling. In addition and I believe it still to be OCD is he seems to channel all his thoughts/energy into something and can last for weeks (Ping Pong, Shooting Pool, Video Games, Internet/MySpace and more recently an obsession with visiting family out of state).

 

The repetitive OCD symptoms have mostly dissipated but the obsessions seem to persist.

 

As far as oils, we have been giving him Evening Primrose Oil along with vitamins and amino acids. We also tried Inositol for a period of time.

 

I have gathered that we have a very unique case on our hands and there could be more to the story. During these period of anxiety/panic episodes he can be very oppositional. That is one disadvantage we face as opposed to a younger child who generally will follow parents advice.

[emma1]

Mark, I had heard there were other cases of PANDAS-like symptoms developing in later teen years, but you are the first one I know of (other than us). I totally understand the oppositional thing (at least our form of it). I know that a "bad diet" will affect my daughter -- but sometimes she eats things she knows she should not. And, out of the blue, she will start complaining about taking the antibiotics. She wants to know how much longer she needs to take them -- and we simply don't know. Also, she is often not all that open about how she is feeling. I have to watch her to see if the antibiotics and inositol are working. She just doesn't want to talk about it.

 

We used Zyrtec this summer for allergies, and that seemed to help the tics. But this winter, she stopped the Zyrtec, and I noticed no change (no increased symptoms). She takes 1000 mg of inositol a day. I am not sure it helps -- haven't had the nerve to go higher. Some have said up to 18 grams is necessary!

 

Cheri (Chemar) had written that evening primrose oil (omega 6) can boost the immune system and should not be used for those with autoimmune disorders (which PANDAS is). You might want to check archives for her explanation, as it did make sense to me. Omega 3 is supposed to be good, though some have a reaction to fish oil.

[michele]

I am confused. Do you use fish oils or not right now? Coremega is lactobicilious for the stomach/yeast infections. What is the Carlson product you use? We stopped the fish oils because I couldn't get him swollow the Nordic Naturals fish oils DHA because of the smell. I am looking for a new product because I think he should take it. However right now he is not cracking like he was before so like you I don't want to rock the boat like you said! I am not sure about the GLA or Borage oil because they may have omega 6's and 9's.

Michele, I bought Carlson's, but I thought I saw an increase in symptoms, so I stopped. I then bought the one that you mentioned (Coromega). But things have been going so well -- I haven't given it yet -- a little afraid of rocking the boat.