Interesting find in my husbands baby book

[CSP]

I found this interesting tid-bit in my husband's baby book.

 

His mother writes that at 14 mo, in the year 1965, My husband wakes up from a nap with a fever of 104. She says he had this fever all night and during the night he had a convulsion. She states Dr. came to the house to give penicillin shot. Still 103 fever and Dr. says its second day infection from smallpox vaccination. She goes on to say he has a fever anywhere from 100-103 all that week. She also notes how he always has to have a tape measure around his neck. The kind you find in a sewing kit. Don't know if she is just stating something cute he does, or was he showing signs of OCD and she didn't know why he had to have this around his neck.

 

By age three 1967 she notes he is saying "sh##" and "shut up." Can't seem to get him over these bad words, she says. He mumbles them to himself all the time.

 

Only other notes are for age 10 where she writes he makes noises all day long, and that prior to the noises he shook his head for 2 years.

 

I just thought this was interesting, how the Dr. said he was having second day infection from smallpox vaccine.

I guess I would have a hard case to prove family history with just this little tid-bit, but makes me feel all the stronger not to have anymore vaccines for my kids.

 

C.P.

[P_Mom]

You know, with that info., and with Cheri's info. about her husband with the bad strep when he was little... I am more and more convinced about the immune system and tourettes/PANDAS. I think it is definitely something passed on genetically and then triggered by infection/illness/viruses/vaccines. I am thinking tourettes and PANDAS are one in the same...and with the revelation of PANDAS recently...we may be on the verge of a discovery for the cause of tourettes, and then be able to better treat these kids. I believe the more and more you look into every case... you'll find some kind of infection or vaccine etc., somewhere in the mix of it all. Just my thoughts...

[Chemar]

Hi Kelly

 

yes, I just kept nodding my head reading what you had written

 

I am beginning to be very convinced on the immune/infection aspect of a lot of genetic illness, along with this revelation into my husband's possible PANDAS history. apparantly as a very young child he nearly died from the fever associated with his strep This would have been circa 1948-9 maybe, and he recalled this just the other day, how his mom told him his grandmother, so afraid the fever would kill him, had dunked him in a tub of ice! My husband has a lot of neurological problems which we see in our youngest son (our oldest does not have anything beyond the mild OCD, which I have some of too ) My husband has also had GIT probs most of his life.

 

anyway, since my son's dx with Crohn's, which is autoimmune, I have been more and more wondering about the possible involvement of a microbe in his sudden onset of severe symptoms (tics, OCD, depression, anxiety, paranoia, phobia...they all happened literally overnight around his 10th birthday...tho he has had other neuro things since birth...we just didnt recognize the eye rolling and the noises and some behaviors as TS then.... and neither did his pediatrician nor eye doc ) but anyway, we went thru the whole testing for strep antibodies/PANDAS at Shands, but my son showed no elevations and as far as we know has never had strep, tho his older brother did have a mild strep throat once,after youngest's onset of tics etc.

 

I have read enough now to feel that maybe my son may have had (?have) mycoplasma p. infection. We know from previous testing that he had Epstein Barr at one time, tho he never developed mononucleosis. My son is going thru a "no blood tests please" phase, OCD related re the metal/needle thing, and so I havent been able to request a mycoplasma analysis yet for him.

 

but anyway....I am rambling on our hisotry when I wanted to say thanks to CP for posting that, as it helps add more pieces of the puzzle when we get these familial histories documented.

[michele]

Yes I agree the posting topic in this thread is so interesting. It seems most of our family members with neurological issues also had some kind of infection that brought it intially on. Then the immunizations coupled with already sensitive immune systems just put the immune system into overdrive. We are still using omnicef however our neurologist really questioned if it is helping or if it is just the waxing nature of tics. In my mind it made a difference and he has been strep free but possibly he doesn't need it everyday. It is more of a safety net I guess. For the time being I'd like to continue on it. As far as the other symptoms of OCD, attention issues and emotional liability and tics they are apparent in tourettes and PANDAS. Do tourettes individuals get worse symptoms when they are ill also? Just amaazing. I agree with Kelly, it seems they are almost one in the same which is what our neurologist was trying to say from the beginning.

 

Michele

 

Hi Kelly

 

yes, I just kept nodding my head reading what you had written

 

I am beginning to be very convinced on the immune/infection aspect of a lot of genetic illness, along with this revelation into my husband's possible PANDAS history. apparantly as a very young child he nearly died from the fever associated with his strep This would have been circa 1948-9 maybe, and he recalled this just the other day, how his mom told him his grandmother, so afraid the fever would kill him, had dunked him in a tub of ice! My husband has a lot of neurological problems which we see in our youngest son (our oldest does not have anything beyond the mild OCD, which I have some of too ) My husband has also had GIT probs most of his life.

 

anyway, since my son's dx with Crohn's, which is autoimmune, I have been more and more wondering about the possible involvement of a microbe in his sudden onset of severe symptoms (tics, OCD, depression, anxiety, paranoia, phobia...they all happened literally overnight around his 10th birthday...tho he has had other neuro things since birth...we just didnt recognize the eye rolling and the noises and some behaviors as TS then.... and neither did his pediatrician nor eye doc ) but anyway, we went thru the whole testing for strep antibodies/PANDAS at Shands, but my son showed no elevations and as far as we know has never had strep, tho his older brother did have a mild strep throat once,after youngest's onset of tics etc.

 

I have read enough now to feel that maybe my son may have had (?have) mycoplasma p. infection. We know from previous testing that he had Epstein Barr at one time, tho he never developed mononucleosis. My son is going thru a "no blood tests please" phase, OCD related re the metal/needle thing, and so I havent been able to request a mycoplasma analysis yet for him.

 

but anyway....I am rambling on our hisotry when I wanted to say thanks to CP for posting that, as it helps add more pieces of the puzzle when we get these familial histories documented.

[CSP]

I missed the post about your husband, Chemar.

 

I'm wondering Why? Why? could my daughter and son have the same vaccines on the same day have such a different effect????

Do you all think having the vaccines could cause an immune problem before strep occured, or after strep, or both?

 

I have to say my husband could be the poster boy for a person outgrowing TS, or PANDAS if that is what he had. The only thing he can ever remember that would even sound like OCD is he joined the Air force when he was 18 and asked for a discharge because he was so homesick. He can't explaine the feeling other then it really took over him mind at the time and he just had to get out of the armed services.

 

He looks back on it now and wishes he didn't, and can't believe how his thinking is so different.

 

C.P.

[Chemar]

Hi Michele

 

the thing is that for many people who have a Tourette dx, *ALL* they have is tics. Maybe lotsa tics, maybe just a few.

 

others with TS dx seem to have more of the spectrum that often accompanies it...the ADD, SID, OCD etc etc

 

Tourette is actually medically known as Tourette's Disorder.....tho the SYNDROME part is now more used.

 

From what I have gathered, PANDAS kids seem to exhibit more of the OCD and other aspects and not all have tics, tho many do (I think I am right on that?)

 

again just more pieces in the puzzle..... and leaves me wondering if multiple microbes trigger different aspects depending again on the genetic prediposition coupled with the individual's immune history of illness, infection, toxin exposure, vaccines, allergies etc etc etc

 

 

 

 

 

 

As far as the other symptoms of OCD, attention issues and emotional liability and tics they are apparent in tourettes and PANDAS. Do tourettes individuals get worse symptoms when they are ill also? Just amaazing. I agree with Kelly, it seems they are almost one in the same which is what our neurologist was trying to say from the beginning.

 

Michele

[kim]

Great Info CP!!!

 

I thought this study was interesting in light of PANDAS.

 

http://www.medscape.com/viewarticle/408375_2

 

Conference Report - Meeting of the Child Neurology Society

from Medscape Neurology & Neurosurgery

Tourette Syndrome and Related Disorders

Trifiletti and Bandele,[1] from New York, NY, presented an update on serum antibody characterization of an 83-kd protein, termed "ts83," in 139 children (64 with tuberous sclerosis [TS], 21 with obsessive compulsive disorder [OCD], 31 with pediatric autoimmune neuropsychiatric disorders associated with Streptococcus (PANDAS), 5 with Sydenham chorea, 11 controls, and 7 with other neuropsychiatric diagnoses). An additional 60-kd protein, termed "ts60," was found to occur with high prevalence in TS/OCD/PANDAS patients who did not display antibodies to ts83. One hundred percent of TS/OCD/PANDAS patients displayed a serum antibody to either ts83 or ts60, suggesting, according to the investigators, that the presence of either antibody is sufficient to provide a risk factor for these disorders.

Trifiletti and Bandele[2] have further characterized ts83 as a tissue-specific calpain and ts60 as a tissue-specific calpastatin. Bianchini and colleagues[3] from New York, NY, and Catania, Italy, compared serum antibrain antibody with human basal ganglia sections assessed by indirect tissue immunofluorescence in 2 groups: PANDAS (22 patients with clinically active tics or OCD and 22 patients with clinically active group A beta-hemolytic strep [GABHS] without associated tics or OCD). Antibrain antibodies were found in 14 of 22 patients in the PANDAS group but only in 2 of 22 patients in the GABHS group, suggesting that GABHS infection alone does not explain the presence of antibrain antibodies in PANDAS.

Wendlandt and colleagues[4] from Baltimore, Maryland, and Mainz, Germany, examined the importance of autoantibody repertoires in the pathogenesis of Tourette syndrome using multivariate statistical comparison by discriminant analysis of activity against human striatum, muscle, and a neuroblastoma cell line using Western blot assay techniques. Serum antibodies from children with TS not preselected by history of GABHS (n = 20) and controls against human striatum, muscle, and HTB-10 cells were studied. The most prominent differences in mean canonical root scores between TS and controls were shown using human striatum as the antigen. Antibody activity against reference ranges at 75, 58, and 52 kd contributed most heavily to the striatal discrimination. These investigators suggest these data further support the hypothesis of a striatal autoimmune involvement in TS pathophysiology. Singer and associates[5] from Baltimore, performed a double-blind placebo-controlled study using baclofen for suppression of tics in children (n = 10) with TS. Standardized tic rating scales were measured for outcome with some improvement noted in 9of 9 children who completed the study. A large-scale study to verify this very small patient population study may be warranted.

Tourette and Related Disorders: Key Points

Detection and characterization of specific antineuronal antibodies are helping to formulate a cohesive hypothesis for the pathophysiology of Tourette syndrome, tics, and PANDAS. Baclofen may provide an off-label approach to treatment of tics associated with TS. Further study is warranted.

[kim]

CP

 

Did your husband get vaccines when he joined and had the need to get out? Is there a possibility that he did recieve something, that triggered anxiety?

Military and vaccines are causing an uproar in some circles too. Many unexplained illnesses. Also, the difference in effects that you see btwn your son and daughter may very well be hormone related. Boys seems to be adversly affected at a higher ratio in TS as well as autism.

[P_Mom]

I am thinking this now... when infants show signs of TS... could it be manifesting from the inherited aspect combined with the immunizations newborns receive, or even flu shots, illness......then, mild symptoms remain and antibodies are lingering until the next big immune challenge?

My older son was fine..stuttered after kindergarten shots for 2-3 months, got better..and was fine again until strep and sudden onset of tics, adhd behaviors occured. Younger son showed mild ocd symptoms after vaccinations, more yet still mild ocd after first strep, got better and then BAM.. major tics, OCD, anxiety, etc., after second strep, almost overnight. Someone asked if immunizations can start the ball rolling before strep, my answer according to my own experience, would be a huge YES!!!

[CSP]

OH MY GOSH KIM!!!!

 

YES, he had to go to a military base in Baltimore and have his vaccinations updated. Went to Texas for his basic training felt the strong urges while in Texas, finished up his training and was to report to LA and pave runways. His parents were on the East coast, and he felt he had to go home.

 

I think this will make him feel better, because he has always felt bad for leaving the Airforce.

 

Thanks Kim I never thought of that connection.

 

C.P.

[ruby23]

I'd have to disagree I really believe what is happening is you are taking a perfectly healthy baby whose brain development is crucial in the first two years and then pumping it (vaccinations) with heavy metals (mercury, aluminum) toxins (formaldahyde) not to mention strains of disease and it is causing a shock to the childs immune system which in turn is causing the high fever and damaging the childs immune system. Aslo since mercury is fat soluable it is being stored in the brain, thus causing damage to the basal ganglia cells, which in turn create problems with the ability to control speech and movement. Also since the chids immune system has been damaged so severely he/she then experiences allergic reactions to substances a healthy immune system can handle. I believe the onset of my sons tics happened at the age of 6 is that mercury or heavy metal poisoning is cumulative. Over time more and more heavy metals accumulate in the brain due to pollutants, seafood consumption, cookware, lead poisoning etc. thus causing further damage to the basal ganglia eventually resulting in tics/tourettes. It is only a theorey but one that I think makes sense. The only reason I say this is because my son also had a high temp due to vaccinations. He was born a healthy child but after his first hep b vaccine began to experience severe seizures. There is a cause and effect relationship that is quite logical. My aunt has been a registered nurse for years and she agrees that this is a terrible shock to the immune system and developing brain. The levels of toxins being deposited in our childrens bodies are not safe levels. No amount of mercury is safe. The statistics do not support a genetic predisposition. The numbers have gone through the roof and I don't think that can be explained through genetics

 

 

You know, with that info., and with Cheri's info. about her husband with the bad strep when he was little... I am more and more convinced about the immune system and tourettes/PANDAS. I think it is definitely something passed on genetically and then triggered by infection/illness/viruses/vaccines. I am thinking tourettes and PANDAS are one in the same...and with the revelation of PANDAS recently...we may be on the verge of a discovery for the cause of tourettes, and then be able to better treat these kids. I believe the more and more you look into every case... you'll find some kind of infection or vaccine etc., somewhere in the mix of it all. Just my thoughts...

[Ronnas]

I would have to agree that our experience is much the same. Without a doubt I think my son's PANDAS was a combination of many factors. In Aug 2001 at the age of 5 years my son had an infection, and received his pre-K immunizations as well environmently he was exposed to a pesticide while on holidays all in the same month and I think it was a combo of many factors that caused his tics.

[Chemar]

Hi Ruby

 

I am not sure I fully understand what you are disagreeing with? In my family we are now pretty sure of 3rd generation Tourette Syndrome.....possibly more as I gather anecdotal information deeeper in ancestry....but my youngest son, husband and his father in turn all exhibit Tourette Syndrome Spectrum Disorder

 

My oldest son had the same vaccines and was exposed to the same environment as my younger, yet oldest son does NOT have TS etc (oldest is 21yo and youngest is 18yo and hubby is mid sixties, grandpa was in his 80s when he died)

 

it seems pretty clear to me that we are looking at genetically inherited TS in our family, albeit that the manifestation of the syndrome has no doubt been affected by many things

 

just the difference between my two sons, both exposed to the same stuff all these years, is pretty clear evidence to me on the genetic predisposition issue.

 

that is not discounting the effect of the heavy metals etc etc etc.......but nothing other than genetics explains our family history of Tourette Syndrome Spectrum Disorder

 

that does not mean I feel ALL tics are genetic. But in our case, genetics is core...of that I have absolutely no doubt

[P_Mom]

Interesting theories..and I do agree about the vaccine damage. My question is this...if the tics/tourettes result from a long time build up of Mercury...then how do you explain an overnight, sudden, dramatic onset of tics/ocd and other behavioral changes in a child after strep, who...days before was perfectly healthy?..

[faith]

Yikes, now you all got ME thinking.

 

I don't know if they still do this, but when I was about 8, I went to Europe for the first time and I'm pretty sure we had to be vaxed for that. I have no idea what it was for, but that is my recollection. I have mentioned I had some tics as a child that went under the radar, but I have two older brothers and they went to Europe before I was born and probably had those vaccinations for the trip too, I would guess. To be best of my knowledge, they don't have any tics or ocd, although my one brother says the other one did do some blinking (like squeezing eys shut), but I would have no recall as he was already 13 when I was born. (btw, he is also ex-army, and if he had any vaxes for that, don't know, but again, he seems not affected).

 

Faith