Tonsils...Antibiotic Advice

[P_Mom]

Hi All!

Hope everyone had a great Thanksgiving. Two questions..... I was reading some old posts the other day and came across one from either Dedee or Michelle and it stated something like " if I would have gotten my son's tonsils/adenoids out sooner, he wouldn't have the tics, but he still has suffered from ocd..." I am not sure who wrote that and I can't find it again right now, but, I am curious as to the conclusion that the author's son wouldn't have tics if the tonsils were removed sooner. Was that a gut feeling, or was it confirmed somehow? I am very curious because my son has just had his tonsils/adenoids removed early November for breathing issues. He did develope two motor tics, (which are mild except for the day they started at baseball , and then at the next baseball game), and this was after a strep infection this past summer, we barely see the tics as of today.

Also, with my younger son, who just turned 5 in October and had explosive vocal tics/ocd after strep this past summer also. Well, I should say that after his first strep infection at 3, he developed mild ocd which we thought was strange, but it was mild and went away. This time at 5, big difference! It was bad, and right now he is doing well and almost totally asymptomatic. I, as well as our Ped., am ruling this PANDAS, he fits ALL criteria. My question is this... even though he is doing well right now, without taking anything, should he be on a preventative antibiotic now, to prevent strep and recurrences? (well to try to prevent it anyway?) We have heard conflicting advice on this, what do all the PANDAS mom's think? I am thinking treat it now before it gets worse, right? Some are saying to wait and see what happens, or to wait for another flair? I just don't know what to do. All advice would be greatly appreciated!!! He is doing well and I want to do what I should to keep it that way!!

God Bless!

Kelly

[LisaM]

Hi Kelly,

 

I read that same post recently and it has been resonating with me. I am pretty sure it was Dedee. I am debating the whole tonsil issue as well. Our case is not as clear cut PANDAS as yours I don't think but we didn't have her tested regularly for strep the first couple of years because we didn't even know about the connection nor did we know of her almost asymptomatic presentation of strep. I'm torn both ways about the tonsils. I do believe they can act as a germ barrier and that natural side of me thinks we should leave them in, God put them there for a reason, but I also fear another strep infection and don't want things to get cumulatively worse as I have seen others report here. We are not on long term antibiotics as I am only recently considering PANDAS seriously for our case. Our titers are normal right now (I had both my kids tested).

[kim]

I have a question for the PANDAS moms too

 

Lisa says

 

http://www.nutrimedical.com/news.jhtml?met...amp;news.id=878

 

 

I'm wondering if the test for anti nuclear antibodies are tested too, in PANDAS kids. I did a little looking around. It sounds like this is a separate test from the ASO anti DNASE testing. It also looked like those two could be normal for age, expected strep exposure etc, but the ANA high?

[LisaM]

Kim, that is a test I have not heard of. I have not heard of that being done on PANDAS or possible PANDAS kids. Perhaps those who have seen Dr. Murphy or a DAN doctor can look to see if they've had the test done. I have heard of a third titer that measures the strep antibodies, Streptozyme.

 

It would be interesting to see the results of the ANA in PANDAS kids.

 

http://www.healthatoz.com/healthatoz/Atoz/...ibody_tests.jsp

 

http://www.healthatoz.com/healthatoz/Atoz/...tibody_test.jsp

[kim]

Whoops Lisa, I screwed up the quote part of that last post. I had the Baylock interview (well worth the read though!) copied apparently.

 

I'm also wondering if ANA testing is exclusive to strep, or can these antibodies be caused by other infections as well. I know it is a seperate test from Streptozyme.

 

I don't have time right now to read the links you pasted, but will get to them later.

 

Look at this study

 

http://www.sciencedirect.com/science?_ob=A...2c7f3b1d1e86272

 

I'm wondering what this means

 

Conclusions: TS patients had significantly higher levels of total antineural and antinuclear antibodies than did controls. Their relation to IgG class antineural and antinuclear antibodies, markers for prior streptococcal infection, and other clinical characteristics, especially chronological age, was equivocal.

[LisaM]

I thought I was just missing the connection to your first link but yes it a good read as well. That is an interesting abstract and I would like to go get the whole journal article.

 

I also want to know were the subjects all suspect PANDAS children or categorized as TS children? If all TS children, are they suspecting autoimmune for them as well?

 

To further complicate our discussion, I found this article -

 

http://ajp.psychiatryonline.org/cgi/content/full/159/4/657

 

Adding to the discussion of IVIG treatments for PANDAS ????

 

 

And this abstract

 

 

http://www.springerlink.com/content/p0670q4371q57171/

[kim]

Here is what I find interesting..and a little alarming from this study

 

http://www.sciencedirect.com/science?_ob=A...2c7f3b1d1e86272

 

 

Results: TS patients had a significantly higher mean rank for total antineural and antinuclear antibodies, as well as antistreptolysin O titers. However, among children and adolescents, only the total antinuclear antibodies were increased in TS patients compared to age matched controls.

 

Does this suggest that in older people with TS, that antineural antibodies develope at some point?

 

This is interesting too

 

 

http://www.springerlink.com/content/p0670q4371q57171/

 

Summary It has been proposed that antineural antibodies were present in patients with Tourette’s syndrome (TS) and other neuropsychiatric disorders. The purpose of our study was to investigate the presence of antineural antibodies in the individuals with Tourette’s syndrome and the family members of TS patients. The sera of four TS patients with no current streptococcal infection, their tic-free family members including father, mother and sibling, and a age-matched control group who were tic free were assayed for antineural antibodies directed against rat tissue and neurons in primary cell culture. There were prominent antineural antibodies present in TS patients and their first-degree family members, but not in the control group. Western blotting showed proteins of about 120 kDa in their sera that were not present in the sera of controls. The preliminary results of our study suggest the importance of genetic vulnerability in the immunological pathophysiology of tic disorders. Future studies should investigate the interactions of genetics, environment, infectious agents, and immunity on symptom expression in families with tic disorders

 

This was only 4 patients. I'm wondering what their age was?

[kim]

Then from this study

 

We previously demonstrated that antineural and antinuclear antibodies were present in sera from a subset of patients with Tourette’s syndrome (5). In the present study, sera were selected on the basis of their rank order for either IgG or total antibodies against either nuclear or neural protein(5). Sera at or above the 75th percentile were identified as having a high autoantibody level, while sera below the 75th percentile were identified as having a low autoantibody level.

 

The study subjects included 12 Tourette’s syndrome patients with high autoantibody levels (seven male subjects and five female subjects, age range=10–19 years, mean=14.4) and 12 Tourette’s syndrome patients with low autoantibody levels (nine male subjects and three female subjects, age range=14–40 years, mean=21.5). Twelve comparison subjects with sera with staining intensities below the 75th percentile for both antineural and antinuclear autoantibodies were also selected (six male subjects and six female subjects, age range=11–35 years, mean=18.2). No subjects were taking psychostimulants at the time that blood was drawn. Twenty-seven subjects were taking no medication, six were taking neuroleptics, and three were taking clonidine. The effect of medication on stereotypies was assessed, and no differences between groups were found (Kruskal-Wallis H=0.95, df=2, p=0.62). Evidence for recent exposure to streptococcal infection was also assessed. No differences were found across the three groups for levels of antistreptolysin-O titers (F=1.21, df=2, 33, p=0.26) and anti-deoxyribonuclease-B titers (F=1.54, df=2, 33, p=0.23).[/b]

 

A number of autoimmune disorders are caused by humoral factors. This mechanism has also been proposed for a subset of subjects with Tourette’s syndrome and obsessive-compulsive disorder (OCD) (1–6). The therapeutic benefit of removing autoantibodies was suggested as the mechanism for the positive response to plasmapheresis in individuals with poststreptococcal-associated Tourette’s syndrome or OCD (11). In the present study, however, none of the six Tourette’s syndrome patients with high levels of antibodies for whom adequate data were available (pediatric records, extensive parental interviews with the National Institute of Mental Health forms for assessment of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections [PANDAS]) met the diagnostic criteria for PANDAS

 

 

Does this mean that strep antibodies were not the culprit or that the diagnostic criteria for PANDAS in not accurate? Someone made that remark recently that an associate of Dr. Murphy's (?) made the comment that titers were not what they were relying on, but the abrupt onset of symptoms in relationship to a strep infection. I know some of these studies show that people without evidence of autoimmune disease have these antibodies too, so they are not necessarily a definitive marker either (just my understanding). Again, the question of, what other illness may cause these antibodies to form?

[P_Mom]

Hi Kim!

This is Kelly, I made that remark about the titers. I spoke with Dr. Swedos assistant at the NIMH. She said patients with high titers can be fine, and ones with low, not so good. She said "it really doesn't work that way" when I stated that it seems symptoms depend on high titer levels. It is the dramatic onset associated with strep. Anyway, I believe all kinds if illness, infection, shots, etc., can set this off. With PANDAS, it is clear cut, strep. But PITANDS, well it can be anything. I read a study of an 18 year old girl, with no history of anything, develop severe ocd, becoming completely incompacitated within days. Her strep titers, both aso and AntiDNAase B, were completely noraml, but her Mycoplasma titer (walking pnemonia bacteria culprit), was significantly elevated. She received IVIG and has been symptom free since. Just something to think about, I believe there is a lot of merit to infection related tics/ocd. I think it is much more common than people realize, because the tic/ocd with illness sometimes can't be illicited because these kids can show no symptoms. I believe it is much more common than true inherited TS. Just my opinion! Take care.

Kelly

[Dedee]

Kelly,

 

It was probably me who spoke regarding the tonsil issue. Now, I can only tell you my story and what happened in our situation. Of course every situation is different and as you said in your last post all children react differently to different illnesses and situations. My son developed OCD literally overnight immediately following a strep infection when he was five years old. We were not given a PANDAS diagnosis, only traditional SSRI therapy (which worked) and a very nice compassionate psychiatrist and go on your merry way. He had strept a couple of times over the next couple of years and he would seem to get a worsening of symptoms with emotional issues, school issue, you know the drill. His doctors would adjust his medicine and we would deal with things best we could. Again, no PANDAS diagnosis. When he was 11 he had strept 4 times within a one year period. During the last infection, he woke one morning with severe tics after never, ever having a single tic in his life. While going to doctors for a help with this issue, we got our PANDAS diagnosis. I talked to a few doctors: Pediatrician, ID, Neurologist, ENT, about his tonsils. Of those, the Neurologist, ENT and Pediatrician suggested we remove the tonsils. His were extremely large and his ENT said we would probably never get all the infection out. That was all I needed to hear. Since that time he has done very well. Of course, you also need to consider that he has also been on antibiotics since then as well. As a mother you just can't help but think that if I had removed his tonsils sooner, maybe he would never have suffered the infection that caused his tics. However, now I try to look at it that if he had never gotten tics, we would never have gotten the right diagnosis and proper treatment. All that matters to me now is that my child is thriving and happy and we are armed with knowledge and a wonderful doctor who can help us if we need it.

 

I hope the information helps in your decision. I know how hard it is. I am currently struggling with what to do about my eight year old. He had strep several times last year and has OCD tendencies but not PANDAS type. I decided to wait and see how he does this year, I hope I don't regret that decision. Let me know what you decide. Good Luck.

 

Dedee

[P_Mom]

Dedee,

Thanks for getting back to me. I am glad your son is doing well. Where are you from?

Thanks!

Kelly

[michele]

Kelly,

 

I can just tell you what Dr. Murphy told me about the tonsils. She said it will not cure the PANDAS. She had patients drop out of the PANDAS study because they decided to remove the tonsils and thought they were better. Then they had the next episode and boom wanted back in the study. Once the brain has had the barrier broken by the strep bacteria it launches an autoimmune attack on the basal ganglia even when it is not actually strep. The body thinks it is strep and attacks itself. It is a war against the good guys in the brain. My son just has to be in the room with someone who has strep and gets the PANDAS symptoms but tests neg. to strep. Even flu and colds launch this attack on him. My daughter had strep four -five times a year and then we removed her tonsils against the ped advice but we were tired of her being so sick and missing school. She has not had strep since. However she never had PANDAS even with getting strep frequently! I think it only takes one time to get the brain barrier broken and the question is how can it be repaired? I have been told it will take age and the immune system to improve. Best wishes!

Michele

 

Hi All!

Hope everyone had a great Thanksgiving. Two questions..... I was reading some old posts the other day and came across one from either Dedee or Michelle and it stated something like " if I would have gotten my son's tonsils/adenoids out sooner, he wouldn't have the tics, but he still has suffered from ocd..." I am not sure who wrote that and I can't find it again right now, but, I am curious as to the conclusion that the author's son wouldn't have tics if the tonsils were removed sooner. Was that a gut feeling, or was it confirmed somehow? I am very curious because my son has just had his tonsils/adenoids removed early November for breathing issues. He did develope two motor tics, (which are mild except for the day they started at baseball , and then at the next baseball game), and this was after a strep infection this past summer, we barely see the tics as of today.

Also, with my younger son, who just turned 5 in October and had explosive vocal tics/ocd after strep this past summer also. Well, I should say that after his first strep infection at 3, he developed mild ocd which we thought was strange, but it was mild and went away. This time at 5, big difference! It was bad, and right now he is doing well and almost totally asymptomatic. I, as well as our Ped., am ruling this PANDAS, he fits ALL criteria. My question is this... even though he is doing well right now, without taking anything, should he be on a preventative antibiotic now, to prevent strep and recurrences? (well to try to prevent it anyway?) We have heard conflicting advice on this, what do all the PANDAS mom's think? I am thinking treat it now before it gets worse, right? Some are saying to wait and see what happens, or to wait for another flair? I just don't know what to do. All advice would be greatly appreciated!!! He is doing well and I want to do what I should to keep it that way!!

God Bless!

Kelly

[P_Mom]

Michele,

Sorry, I forgot to ask. What do you think or Dr. Demino? What kind of treatment did he give to your son? Insurance coverage?

Thanks.

Kelly

[michele]

Dr. Demio is very good. He is very smart and comprehensive. He runs a ton of labs and then interprets them very detailed and wants you to give a ton of supplements for problem areas. I was able to get him approved out of network for three visits in three months. The first visit is $500. I paid in cash. The blood work was mostly covered accept for a pyrrole test I ordered and shipped. The supplements are not covered. They add up. He wants him on alot. I think he is getting better so that is what counts! In between visits we don't have any contact with him. If I call to ask for advice there is a charge for any phone calls. He does have an assistant you can call too. He is very sought out right now. At least a two month wait. http://www.latitudes.org/forums/index.php?...n&MSID=2664

 

Michele

Michele,

Sorry, I forgot to ask. What do you think or Dr. Demino? What kind of treatment did he give to your son? Insurance coverage?

Thanks.

Kelly

[P_Mom]

Michelle,

Inyour honest opinion, do you feel all the supps. and diet Dr. DeMio has you on are working? Or do you feel it is the antibiotic and time between illness that is helping?

Kelly