bacteria/behavior link?

[SunDrop]

i've read before on postings here about some sort of behavior-bacteria link?

does anyone know what i'm talking about and have an url or information or did i just dream this up??

thanks

------------------
everything stated above is just MHO
my family:
me and husband of 9 years
16 yr old ss - typical teen
10 yr old easy child
7 yr old difficult child - diagnosis ODD, still being evaluated

If you judge people, you have no time to love them.
--Mother Theresa

 

I don`t know of a link,but are you talking about PANDAS?
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strept.The link I used for this is no longer available but someone posted not too long ago about a new one.Good luck!
Denise

------------------
difficult child daughter,18 in Feb,runaway since 10/99,BiPolar
ADHD,Obsessive Compulsive Disorder (OCD),Schizoaffective,son 20,HDHD,was mild difficult child has progressed to
easy child over the years with hard work from all
especially him,he started College 9/2000.13 yr old daughter ADHD,takes Ritilin,some resource classes,,basically a good kid but can difficult child when she feels the urge,
but a cutie,husband 40,ADHD,but an honest to God husband (must be he claims to love me) LOL
Mischief,,my 4 legged baby,1/2 Dalmaltion 1/2 Collie,newly adopted kitten in June named Teaser,cause she teases the hell outta Missy,3 Cockatiels,noisy,messy,but we love them!Myself,at home disabled Mom,genetic back disorder along with Degenerative Disc Disease,major knee injury 7/97,waiting for surgery date to rebuild knee,,will take 2 to 3 more surgeries. I will survive,I always do,,but love to complain,,not an easy patient,lol Hoping to resume foster care again specializing in medically needy infants/toddlers.Have already started classes.husband and I were Specialized Foster Parents to sexually abused and ADHD kids for 8 yrs prior.Just trying our best to survive and don`t think we`re doing to shabby either! Moto: "And this too shall pass"!

 

[mom5]

Most of the time I feel like I am eavesdropping here because I know so little about so many of the things being discussed, but Sundrop, I do know about PANDAS. It's a cute sounding name for a horrible sydrome called Pediatric Autoimmune Neuropsychological Disorder attributable to Streptococcal Infections. Strep is a bacteria that in non-susceptible people just makes them regularly type sick, like with a high fever, sore throat, even vomiting. Pandas is is an allergy to the strep itself. Most people when they get strep get sick and produce antibodies to fight it. When you have PANDAS your body produces antibodies to fight the good antibodies. It's an autoimmune syndrome which means that your body fights itself instead of healing itself. AIDS is also an autoimmune disease, as is lupus and some other types of arthritis. When a person who is prone to this disorder gets a strep infection, they react differently. In many cases, Obsessive Compulsive Disorder (OCD) symptoms are displayed. In my son's first episode, he refused to eat for 4 days so we had to pour Ensure down his throat and was washing his hands so much we had to put a lock on the bathroom door. He also displayed intense fearfulness of seemingly silly things, like thunder and moth balls. Then, he would be treated for the strep and it would all go away, but we didn't know of any connection. Just when we were on the verge of thinking our son (then in K) was seriously psychotic, his teacher found an article in the paper about PANDAS. It seems that a woman researcher at the National Institutes of Mental Health in Bethesda, Md. had a son with the same behavior pattern and so having access to scientific labs and coworkers with the ability to do medical research, she found PANDAS. We actually took Stephan to NIMH after 1st grade for an evaluation, where they confirmed his diagnosis and told us about tx modalities. At that time, there was a study going on where they treated some kids with gamma globulin by IV and some with another medication and others were being putting into a double blind study with antibiotic tx. Steenie's Pandas was not severe enough for the IV tx and we lived too far away to be in the double blind study, so they told us just to give him Amoxicillin when he got strep. After awhile, we got very good at spotting the episodes before they escalated. He would get red and puffy around the eyes, tearier than usual, more fearful, have wetting accidents and sometimes a low grade fever. We met with the school nurse and explained PANDAS to her and she marked his chart to call us whenever there was strep in his or his sister's class (on top of it all, my dtr is the Typhoid Mary of strep, she brings it home but is always asymptomatic even if her test is postive). That way, we can monitor him and decide if the antibiotic is warranted. In grade 2, he spent almost the entire school year on Ritalin and Amoxicillin. Then our ENT suggested taking his tonsils out. He told us that even in kids like him who never had tonsilitis, strep bacteria can linger in the tonsils even if a test is negative. We took them out the day after second grade ended and it proved to be the right decision. He has had fewer episodes and none like the early days when he shrieked in panic for an hour convinced that moth balls would kill his baby brother. We still have the school let us know if strep is around, but he has not been on antibiotics constantly anymore. I am sorry to ramble on, but I feel like I have to outline my situation so you can decide if yours is similar. I don't know the NIMH web site, but it's probably something like www.nimh.org. Make sure that your neuro or psychiatric are familiar with PANDAS and that you educate your pediatrician. Ours was very reluctant to give us a 30 day supply of antibiotics because of fears of drug resistance so we showed him some literature on PANDAS and explained that we would risk resistance with such a low grade drug as Amox in order to end the horrible PANDAs syndrome. We have no idea why he has this, I think it's related to his lead poisoning having weakened his immune system, but his sister also had lead and doesn't have PANDAs, or it could be genetic since I myself have rheumatoid arthritis, which is also an autoimmune disease. Anyway, I hope this info is useful to you. Good luck and in the scheme of things, if it is PANDAs, it's treatable and it only looks like Obsessive Compulsive Disorder (OCD), but isn't.

 

Mom5,,
My daughter had the most severe case of PANDAS that kids could have I was told over 3 yrs ago when very little was known about it.Have you ever come across anything showing research about the after effects, long term in patients? Such as years later?It`s been along time since I tried to research anything about that because none was ever available,but I will be going into the web you mentioned above.I do know SHANS Hospt in Gainsville,FL was doing research on it,but we couldn`t get my daughter to go,,she threatened to jump out of the car if we took her,,and she would have as she was severely suicidal at that time.So I was just wondering if you knew about any more.
Thank you,
Denise
I went into the web addy but it`s not anything about PANDAS,,if you know of any others I would be very interested,,thanks again!! Dee

------------------
difficult child daughter,18 in Feb,runaway since 10/99,BiPolar
ADHD,Obsessive Compulsive Disorder (OCD),Schizoaffective,sever depression,refuses all medications,son 20,ADHD,was mild difficult child has progressed to
easy child over the years with hard work from all
especially him,he started College 9/2000.13 yr old daughter ADHD,takes Ritilin,some resource classes,,basically a good kid but can difficult child when she feels the urge,
but a cutie,husband 40,ADHD, but an honest to God husband (must be he claims to love me) LOL
Mischief, my 4 legged baby,1/2 Dalmaltion 1/2 Collie, newly adopted kitten in June named Teaser,cause she teases the hell outta Missy, 3 Cockatiels,noisy,messy,but we love them! Myself,at home disabled Mom,genetic back disorder along with Degenerative Disc Disease,major knee injury 7/97,waiting for surgery date to rebuild knee, will take 2 to 3 more surgeries. I will survive,I always do, but love to complain, not an easy patient,lol Hoping to resume foster care again specializing in medically needy infants/toddlers.Have already started classes. husband and I were Specialized Foster Parents to sexually abused and ADHD kids for 8 yrs prior. Just trying our best to survive and don`t think we`re doing to shabby either! Moto: "And this too shall pass"!

 

[Fran]

This is very helpful info and thank you. My dear friend who has lupus has 2 or her 3 children with inherited autoimmune disease(very severe).Her other son shows none of that but has weird voices in his head at times and has some obsessional thinking. Now, I'm wondering if this is Pandas. I will pass on info to her so that she can research it. Fran

------------------
fran-mom to 11yr son easy child who is a joy and a 16yr old son difficult child,diagnosis with subcategory of Aspergers' and possibly bipolor. Completed 2yr emotional growth boarding school with good results on behavior. Have been unable to find any school able to meet academic needs(dysgraphic,dyscalculia). Tried many medications and therapies. When he is good he is very,very good.
Dear husband of 18 1/2yrs

 

Search PANDAS. Quite a few links will come up, including the one at NIMH. There is a lot of info out there on the subject. Now that you mention it, my difficult child was on Amoxicillin daily for over a year as a toddler because of frequent ear infections. Now I wonder if some strep throat was involved, too. Currently he is on Prozac for Obsessive Compulsive Disorder (OCD), so maybe there's a connection I had overlooked.

------------------
~~~~~~~~Susan~~~~~~~~~
Mom of 10 y.o. difficult child

Shouting to make your children obey is like using the horn to steer your car, and you get about the same results.

 

Hi, I'll give you a few links that I have. My son just went through a relapse, which was not fun AT ALL. The problem with my son is that the symptoms just slowly began to come back. His behavior was off a little at first, nothing major. There were a few times he told me that he felt hyper, then before I knew it we had full blown symptoms. He gets the handwashing and alot of other problems, but the worse part of it is the change in his behavior. He has terrible mood swings and gets very angry and physically aggressive. It seems like all he has to do is look at someone who is carrying the bacteria (still do not know if it is strep or some other kind) and his immune system starts attacking his brain. He was having the deterioration for about a month before he showed any signs of illness and then it was mostly sinus related. He had complained about a few headaches during the deterioration, but they weren't really bad headaches. He did have a bad headache after two days on his antibiotics and then his symptoms began to go away. We are now at the point where he will probably have to stay on antibiotics during the school year and be off during the summer.

One thing that people don't realize is that PANDAS is just the tip of the iceberg. Many kids have other chronic low level infections that may be contributing to other kinds of brain dysfunction.
www.neuroimmunedr.com
https://web.archive.org/web/20140518004456/http://www.nids.net/

Goldberg, M. Frontal and Temporal Lobe Dysfunction in autism and Other Related Disorders: ADHD and Obsessive Compulsive Disorder (OCD). Alasbimn Journal1(4): July 1999. http://www.alasbimnjournal.net/cont...hd-and-Obsessive Compulsive Disorder (OCD)-80

 

[SunDrop]

thank you all so much for the input and great links.

the reason i posted originally was difficult child's recent visit to the ENT. we had tubes put in his ears when he was 5 years old (almost two years ago) and one tube just worked it's way out a couple of weeks ago. in that amount of time , he's already accumulated cloudy fluid in his ear and the ENT put him on a high dosage of amoxicillin. the second day on the anitibiotic was eerie. he was so well behaved, at home as well as at school, that i thought aliens had come and replaced him.

today was the third day on the antibiotics and his behavior was good too. however, he's still awake right now and it's after 11:30 at night, which is a rarity for him. the only times he has trouble sleeping is when he's headed for a downslide. and usually a major downslide

he doesn't seem to have Obsessive Compulsive Disorder (OCD) traits in a typical sense. however he seems to have nervous habits (happen when he's uncomfortable or stressed) such as snortling (you'd have to hear it, lmao) or throat clearing. sometimes even those aren't present under stressful situations.

however, since he has a history of middle-ear infections since he was an infant, i thought this was one area worth checking out.

i'm going to go read the information i can find from those links while i wait for him to nod off to dream land..

thanks again!!!
rustinajo

------------------
everything stated above is just MHO
my family:
me and husband of 9 years
10 yr old easy child
7 yr old difficult child - diagnosis ODD, possible anxiety issues

If you judge people, you have no time to love them.
--Mother Theresa