is there a chance for us..?

[croatianmum]

Just to explain shortly our story.

My ds 13 is having problems, mostly tics and some minor OCD since he was 6, with a very big tic explosion at the age 8.We live in europe and so he was diagnosed with TS, and he was on different meds for the next 3 years.

Than we met dr. K who diagnosed him PANDAS, and this seemed very logical to us aspecialy because my son's ASO titers were high since he was 4 yo.

 

We had our first IVIG in June 2012 with some results (I'm still not shure if the short lasting betterment was becuase of IVIG or because of the waxing and waning of symptoms).

 

he was on Augmentin (and still is, 2x1000mg daily).

 

Couple of month later his tics have returned, and he's biggest problem is this horrible loud vocal tic so in flares he is losing his speech, we are sometimes not even able to understeand what's he saying..

 

We have tried ibuprufen - did nothing.

In january 2013; we tried prednisone; 5 days; 40 mg daily. this was a living nightmare. His tics have gotten so much much worse, it took him more than 14 days to feel some betterment after this.

 

Than, because his ASO was still high, we have removed his tonsiles and adenoids in May 2013. He was getting IV abx before, during and after the surgery. he was doing absolutely great for a month, and than, again, all the symptoms have returned.

 

So, we decided to go for a 2.nd IVIG. He got at the end of August 2013, -about 2,5 weeks ago. Still no relief. he screams, and screams..every word beginns with a loud scream..

 

So, I was thinking about Lyme; but, he was never bitten by a tick; and in our country here on the mediterranian sea they are not dangerous at all. so, no Lyme probably, and very probably no other coinfektions..but, I'm gonna test him soon.

 

So, what do You think? What are the chances..no help from abx; no help from IVIG; got worse on prednisone..the only thing pointing to pandas is his high ASO for the last 8 years.

There's a voice in my head telling me that maybe he really has TS not pandas and that I should stop with all this abx; IVIG's ecc...

 

but I just can't give up.

How do I know? What do I do? Why notthing is helping him..there are so many great stories about children gettng better only from abx..Why isn't he getting better?

 

What do I do next? Another IVIG? PEX?Does it makes any sence..

 

I would really like to hear some experiences from You who have had more than one IVIG.It would be great to hear someone to tell me that Your child did not response to first IVIg but a second one or even a third one made a different..

 

Is there any hope at all..?

 

 

 

 

[rowingmom]

I would suggest getting tested for the coinfections. Bartonella, babesia, ehrlichia, mycoplasma.

 

Our daughter flared with strep and viruses, but the underlying infection responsible for the suppression of her immune system seems to have been bartonella. When we first saw her, our LLMD said that bartonella was responsible for the PANS symptoms DD was experiencing. I believe she was right.

 

We have treated bartonella for 2 years with multiple, combination abx and have now weaned off (of course during that period the multiple abx DD was on could have potentially addressed other infections we were unaware of). During treatment, any protocol that had the ability to kill a lot of bacteria produced a lot of ticcing. For a while there DD had trouble both talking because of vocal tics, and reading because of eye blinking/head jerking tics.

 

I feel ticcing was the result of toxin build-up from bacterial die-off. We have always used detox protocols and methylated B vitamins to help her detox pathways. If your son hasn't been tested for any MTHFR deletions, he should be. It will help you choose supplements that are helpful, and avoid foods/chemicals that could cause a problem.

 

We use curcumin and Japanese knotweed for anti-inflammatories and find them both helpful. Within 20 minutes of a herx-induced raging episode, 1/2 tsp of knotweed tincture (WoodlandEssence) will bring her right out of it.

 

By charting I have observed that herx-induced ticcing gradually resolves as the body is allowed to detox. This happened faster if we were pulsing and her body wasn't inundated with abx every day. The pulses were stiff though - plaquinel, malarone, tindamax, azith and minocycline for the last 6 months.

 

Don't give up. We have weaned from abx, but I'm keeping her on Buhner's bartonella protocol to reduce the risk of relapse. She has been great for 5 months now, but upping herbs or adding A-Bart (ByronWhite herbal) still results in small herxes. Bartonella is still there, but she is at a point where she isn't too symptomatic.

 

Her CD57 has gone from 18 in February to 45 last week. She is getting there, and you can too. Keep at it, you are a good Mom!

Edited September 17, 2013 by rowingmom

[croatianmum]

thank You rowingmom,

 

I really don't know what to do any more.he squeekes; his neck is jerking; his mouth are opening; his eyes are rolling; his shoulder is twiching...

 

There are no doc's in our country, so I'm alone here, ''playing'' and pretanding to be a doctor, following Your advices and than traying to find out (alone, again) what can cause the problem. And the language is also a problem, so sometimes I don't understeand everything You write about so many lab tests..I have never even heard about some of the testsuntill now. But, I will try to do what You say..

 

I'm allready giving him flaxseed ol, b complex vitamine and probiotics.

 

Unfortunatly, my instincts are whispering that his symptoms are more TS like than pandas..but, if dr K belives it's pandas, than I should trust him, right?

thank You again,

I will check tomorow for some possible lab tests for lyme, bartonella ecc. in our country.

 

But

[LNN]

I'm curious why you say lyme disease isn't an issue in Croatia. A quick internet search found this:

 

Ticks are important as transmitters of infectious diseases. In Croatia, the bite of ticks can transmit Lyme disease and Tick-borne Encephalitis (TBE), and in some cases Q fever, Ehrlichiosis, Babesiosis and some Rickettsial diseases. http://www.stampar.hr/TickSeason

 

another result:

 

A total of 3,317 cases were reported from 1987 to the end of 2003. Northwestern Croatia is an area in which Lyme borreliosis is endemic, but the disease has also been recorded in the other parts of the country, with the exception of the area south of Zadar. The clinical picture of Lyme borreliosis in Croatia is dominated by erythema migrans, followed by neurological manifestations. The diversified clinical picture is consistent with reports from other European countries, as is the isolation of Borrelia afzelii and Borrelia garinii, which are causally related to these forms of the disease. Tick density and tick infection rates of Borrelia burgdorferi have not yet been investigated in the part of Croatia free from the occurrence of Lyme borreliosis. http://www.ncbi.nlm.nih.gov/pubmed/17153550 (it sounds like cases haven't been reported south of Zadar but that this area hasn't been investigated by field researchers - only that cases haven't been reported - and of course if no dr. thinks there's lyme there, they'll dismiss your symptoms and not test for it - just like they do in certain parts of the US despite cases in all 48 continental states)

 

and there's a Facebook page for lyme patients in Croatia https://www.facebook.com/pages/Worldwide-Lyme-Protest-Croatia/305273806250187

[hugs2day]

My oldest son is a ticcer with pandas and ofcourse ocd but for a year we tried first augmentin and then azitrho neither touched the symptoms enough to say that we were convinced it would ever be relieved but when the neuro swtiched him to PennVK as a last ditch chance before we tried clonodine --- PennVk was the answer --it worked. He had dramatic improvement in all symptoms within days and then weeks and then a year and half later he is off all antibiotics. So sometimes the treatment just calls for another antibiotic or sometimes two at once.

 

My oldest son responds well to Penn VK and Omnicef.

 

My youngest to Azithro and Keflex and Omnicef.

 

Neither did well on Augmentin or Bactrim.

 

 

Also some DAN drs recommend against flaxseed they prefer fish oil. My kids never took fish oil because of side effects but I feed them foods with omegas and add chia seeds to a lot of dishes.

 

Definitely check out lyme and all other co infections and viral load as well. My children definitely had a lot of chronic infections and the antibiotics along with supplements have had the biggest role in their treatment plan and they are both doing well for the most part. I wish they were cured but they are not.

 

I never did IVIG with my boys because the dr. told me no bother doing it if the infections aren't cleared and they are not. I hope to get to that point soon.

 

Good luck to you. I think in a way we are all playing dr's even when we have Pandas docs willing to help.

 

FYI_ not sure if you have changed your son's diet but I heard from a mom whose son was ticcing really bad full body tics and gulping and she changed his diet drastically and has seen dramatic improvement in the tics. Eliminated the worst of them. She is cooking every meal for him he is not allowed to eat school lunch. Only good healthy whole food and he had a huge turn around in symptoms.

 

Just to explain shortly our story.

My ds 13 is having problems, mostly tics and some minor OCD since he was 6, with a very big tic explosion at the age 8.We live in europe and so he was diagnosed with TS, and he was on different meds for the next 3 years.

Than we met dr. K who diagnosed him PANDAS, and this seemed very logical to us aspecialy because my son's ASO titers were high since he was 4 yo.

 

We had our first IVIG in June 2012 with some results (I'm still not shure if the short lasting betterment was becuase of IVIG or because of the waxing and waning of symptoms).

 

he was on Augmentin (and still is, 2x1000mg daily).

 

Couple of month later his tics have returned, and he's biggest problem is this horrible loud vocal tic so in flares he is losing his speech, we are sometimes not even able to understeand what's he saying..

 

We have tried ibuprufen - did nothing.

In january 2013; we tried prednisone; 5 days; 40 mg daily. this was a living nightmare. His tics have gotten so much much worse, it took him more than 14 days to feel some betterment after this.

 

Than, because his ASO was still high, we have removed his tonsiles and adenoids in May 2013. He was getting IV abx before, during and after the surgery. he was doing absolutely great for a month, and than, again, all the symptoms have returned.

 

So, we decided to go for a 2.nd IVIG. He got at the end of August 2013, -about 2,5 weeks ago. Still no relief. he screams, and screams..every word beginns with a loud scream..

 

So, I was thinking about Lyme; but, he was never bitten by a tick; and in our country here on the mediterranian sea they are not dangerous at all. so, no Lyme probably, and very probably no other coinfektions..but, I'm gonna test him soon.

 

So, what do You think? What are the chances..no help from abx; no help from IVIG; got worse on prednisone..the only thing pointing to pandas is his high ASO for the last 8 years.

There's a voice in my head telling me that maybe he really has TS not pandas and that I should stop with all this abx; IVIG's ecc...

 

but I just can't give up.

How do I know? What do I do? Why notthing is helping him..there are so many great stories about children gettng better only from abx..Why isn't he getting better?

 

What do I do next? Another IVIG? PEX?Does it makes any sence..

 

I would really like to hear some experiences from You who have had more than one IVIG.It would be great to hear someone to tell me that Your child did not response to first IVIg but a second one or even a third one made a different..

 

Is there any hope at all..?

[GraceUnderPressure]

I would encourage you to check with people on the forum at LymeNet Europe

http://www.lymeneteurope.org/forum/

 

Even our painfully conservative CDC states:

"In Europe, endemic from southern Scandinavia into the northern Mediterranean countries of Italy, Spain, and Greece. Incidence is highest in central and Eastern European countries."

 

Our family appeared to have close to zero risk for Lyme - we almost didn't even test for it but the moms here strongly encouraged me to do it anyway just in case (God bless them!). Even our PANDAS dr was stunned when it came out clearly positive. Our LLMD said that though it is impossible to know for certain, it seems most likely that my husband picked it up from his dogs, passed it to me, and then I passed it on to our children while I was pregnant with them.

 

Testing for co-infections is even trickier - for example, my ds came up negative for bartonella from Igenex's testing, but his LLMD said they only have tests for 2 types of bart and there are about a dozen known varieties. That's before you start looking at the rates of false negatives because so many of these germs can evade detection. Many LLMD's encourage Igenex testing for Lyme but don't bother with the coinfections because of that.

 

My ds developed tics around age 4, though we didn't recognize them as such at the time and referred to them as "habits" (in fact, around age 7, I started looking into OCD because I thought that might be his problem). I noticed that the tics did not wax and wane like Tourette's usually does; instead they just kept getting a little worse every time something hit his immune system (infections, allergies, vaccines, etc). He didn't actually qualify for a Tourette's diagnosis until around age 13, but even then the tics were only annoying but never really bad until his younger brother got sick summer of 2010 with what was most likely mycoplasma pneumoniae (which he had all the clinical symptoms of but still tested negative - but myco p is another one of those germs that is super hard to detect).

 

Well, ds got only mild symptoms of his brother's illness (he never got really sick which we used to think was because he had a really strong immune system but now we understand was actually because the Lyme & bart had crippled it), but his tics exploded. It was so bad that my dh was thinking we might have to institutionalize him. My internet searches kept turning up links here at latitudes, & I realized that even though my ds had no significant history with strep, his story still sounded like so many of the kids here.

 

We consulted a PANDAS dr. Even though all ds's strep testing was negative, he still responded positively to antibiotic treatment. We did try 2 IVIG treatments. The first one relieved his tics for ~1 week, then he got exposed to a cold virus and most of it came back. The second treatment showed no effect whatsoever. My understanding is that that is what happens when there is still an underlying infection that needs to be addressed. The IVIG can help with correcting the autoimmune reaction only if the germ(s) triggering that reaction have been eliminated.

 

Believe me, I know how hard it is to deal with the ticcing, and it often seems like everything makes them worse and nothing makes them better, but the high ASO shows that this is more than TS. And based on the results you have seen thus far, it seems reasonable to believe that this is also more than just strep.

 

If your son's symptoms fit the clinical picture for Lyme or one of its coinfections, an LLMD will give him a trial therapy and see how he responds. It can be hard - my son's main symptom is ticcing & every time we find something that works, we know because the die off initially makes the tics get worse. We have to go slowly so it doesn't get too overwhelming. Check with the members at LymeNet Europe - they can probably help you find what help is closest to you.

Edited September 18, 2013 by GraceUnderPressure

[croatianmum]

well, You have convinced me to check for lyme and other coinfections.I wrote that there is no lyme here, because this is what the doc. here told us. The ticks are dangerous but in northwestern croatina, and not on the coast where we are..

 

Also, to mention, as soon as got home form a 2.nd ivig; he we all had a big cold in, we all had one.

 

can this little cold ruine IVIG treatment?

 

if so, how on earth am I gonna protect him from getting a cold; or some other virus...he has a little brother who get's sick like any other 2 year old boy; ; and he goes to school, meets other children. winters are cold here with typical winter deseases, flu ecc.

how do I keep him healthy? How do You keep Your children healthy?

[Hopeny]

Hi and I am sorry if I am always ringing the Lyme and coinfections bell but it's definitely worth exploring. There is a lab infectolab in Germany that you can send blood to that can do a better test for Lyme. What makes me suspicious about Lyme in your sons case us that it got worse with steroids. Steroids are known to exacerbate Lyme. I believe there are some Lyme literate doctors in Germany and maybe elsewhere in Europe if travel is an option. Ilads.org should be able to give you a list. Typically combo antibiotics are used for Lyme and co for example rifampin/Zithromax, cefdinir/Zithromax, augmentin/biaxin. I am not a doctor, this is only my experience. As everyone else has said if treatment is not working and onset was sudden it begs exploring other infections. Good luck .

Edited September 18, 2013 by Hopeny

[pr40]

if you cannot test for lyme, one way to deal with the situation is to start abx that treat lyme. If you have results, test will not matter.

[rowingmom]

if so, how on earth am I gonna protect him from getting a cold; or some other virus...he has a little brother who get's sick like any other 2 year old boy; ; and he goes to school, meets other children. winters are cold here with typical winter deseases, flu ecc.

how do I keep him healthy? How do You keep Your children healthy?

 

Paleo autoimmune diet

http://robbwolf.com/what-is-the-paleo-diet/

 

PerfectHealthDiet

http://perfecthealthdiet.com/

 

Vit C, zinc, low dose (once or twice a week) astragalus,

[T_Anna]

<<there are so many great stories about children gettng better only from abx>>

 

I heard one Radio Pandas show where the host said that everyone is different and if one antibiotic doesnt work try another and another until you find something that works.

 

I agree with what people here have said, Ominicef, Keflex and many other abx can work where other things have not.

 

Good luck,

T.Anna

[qannie47]

Did Dr. K administer 2nd IVIG? What does he say? Hold tight, the timeline is up to 12 weeks for improvement...Prayers for you....

[croatianmum]

Thank You for Your answers.

I will do the testings . I called the lebs here and they can do it. The question is if it's ok to do it so early after his 2.nd ivig (3 weeks ago).?

 

And about dr. K. he never mentioned any other possible virus/lyme ecc. he insists on augmentin, even when I asked him about some other solutions he never said anything abour adding /changing abx.he also never mention 23andme (I don't know what is is, but I sopose some lab test ).

he ordered some lab tests for ASO; andtiDnazeB; and some circulation immunokomplex; but they all came just fine.Only his ASO was 500. all other tests we have done are fine.

 

I feel so lost.I feel like I'm playing a doctor..thank God for You people here. You are all so helpful.Not to mention that there is NO dr. here who knows anything about pandas, so; it's a battle on every field, so Your help I highly appreciate.

[LNN]

When you do IVIG, the donor antibodies have a "half-life" of 3 weeks, meaning half of them are done after 3 weeks, then the rest start to fade week after week. I'd personally wait at least 8 weeks before lyme testing. You want to make sure you're testing your son's native antibodies and not those he got from donors. In the meantime, start looking for a lyme doctor thru the groups mentioned on the other posts. Sometimes there's a waiting list to get in and sometimes doctors will make a clinical diagnosis and be willing to try treatment while you're waiting to do lab tests or waiting for results.

 

In the US, some Pandas doctors have come to see lyme as a common trigger for PANS and others think it isn't an issue for our kids. From what I understand, your doctor does not investigate lyme. I personally think this is a big mistake and that if lyme isn't something he wants to treat (it's a specialty unto itself) then he should at least suggest that patients get tested by someone else. But - and this is just my opinion - if this doctor's treatments aren't helping and he's not willing to try other things, not even different antibiotics, then he's not listening to you. I'd consider getting another opinion from a doctor closer to you who does consider lyme. PANDAS is "strep-only" but PANS includes lyme and other infections and I think your son deserves to be evaluated by someone who'll look wider for what's making him so sick.

 

(23andMe is a lab that tests your genetics. Some of us use it to find genetic issues that get in the way of our kids full recovery. But in your case, I think finding a lyme-literate doctor would be a better first step.)

[croatianmum]

Just an update:

 

talking to bhenry mom here in another post; she mentioned bartonella rash. I wen tto google and so I found some pictures of bartonella rash which look the same as my son's rash. my son had it for 5 times in the last year, and no one couldn't tell us what it really is.So, on one hand; I'm hoping this is bartonella related; and it explains why the first IVIG was so ineffective. Offcourse, I'm not 100% shure; and we will run some tests; but, it would explain certaing things to me.