IVIG cold feet

[croatian mum]

we only had 1 IVIG, 4 month ago.

His symptoms started at the age of 6, so we were diagnosed very late.

I'm still not shure if it has been helpful. It definitly didn't help with ADHD and ADD; OCD is also worse than ever; and he still has a lot of different tics (motor and vocal); BUT; I would say that before IVIG his terrible screaming tic was lasting for 3 years and has never stoped whiteout Orap or Risperdone. Now, this horrible tic comes and goes, it's not that frequent as it used to be (he was screaminh every 2 seconds). In some points of life he was even unable to speak properly becuse of the scream. Now, he screams betweeen 10 -15 times a day - so, it is better. He still has other smaller tics, more privat and easier to tolerate. So, I would say that we are gonna need another IVIG.

 

We never checked for any other infection (Lyme; bartonella ecc.), because here are simply no doctors qualified to know something about pandas possible andconected infections.

 

And, yes, if necessary we will repeat the IVIG therapy.

[croatian mum]

My son had two IVIG's with Dr. K. Definately worth it, even though we hoped it would just be one. My son was 15 and 16, and had had Pandas for years, so I do think that younger ones have a better chance of just doing one. I agree with LLM that Dr. K doesn't necessarily look wider at all the other factors and possible infections that cause pandas symptoms, but at least he is treating. I think afterward parents often need to consult further with other docs - we ended up consulting with Dr. T and treating mycoplasma specifically, whereas Dr. k was just dealing with strep. But do the IVIG regardless.

 

so, Your son was 15 - and did IVIG helped him ?sometimes I'm worried that we have 'discovered' ivig treatment too late..my son is 12, allready in puberty and before IVIG he was having severe vocal and motor tics for 4 years..

 

 

Same here - my son had sever vocal and motor tics at various times over his life, the worst at age 11, which we treated successfully with antibiotics. But at 15 or so it cam back, different but definitely Pandas. IVIG definitely helped immediately - but not completely and he did backslide some. Did the second one six months later, again much better, not 100%. Today, he tics a bit but nothing debilitating. He'll be on prophylactic abx for a long time, and we test once in a while to see if anything new is on the radar. Did it help your son? I wish I'd known to do it back when he was little.

 

hope You'we raed my answer..

and I wish too I'd known to do it back when he was little..

[albmum]

Croatian mum I need your help.i am from a small counry in Europe ,Albania,next to Greece and Macedonia.He was never diagnosed with pandas because there is no specialized doctor in my country.I sent hum in Italy a year ago Milan,dr M.P diagnosed my son with pandas.and prescribed him iperico . My son is 9 years old and from 1 1/2 years he is having vocal and motor tics anxietiy,joit aches and ADD.we have read a lot and we think the only solution is Ivig.that's the reason i need your help croatian mum....did you do ivig in cratian or you went in America?if I bring my son in Croatia is there an possibility that I could find ivig and a specialised center to inject it? Your answer would be of great help.....

[croatian mum]

Croatian mum I need your help.i am from a small counry in Europe ,Albania,next to Greece and Macedonia.He was never diagnosed with pandas because there is no specialized doctor in my country.I sent hum in Italy a year ago Milan,dr M.P diagnosed my son with pandas.and prescribed him iperico . My son is 9 years old and from 1 1/2 years he is having vocal and motor tics anxietiy,joit aches and ADD.we have read a lot and we think the only solution is Ivig.that's the reason i need your help croatian mum....did you do ivig in cratian or you went in America?if I bring my son in Croatia is there an possibility that I could find ivig and a specialised center to inject it? Your answer would be of great help.....

 

 

Dear stivmommy,

 

offcourse, I know where Albania is,we are not so far ..

We didn't travel to America, we did IVIG here in Croatia, because in our country IVIG is prescribed as a standard medicine for some other clinical conditions. It it usualy prescribed in much, much smaller doses than the one we have recived, but we went to our capital city - Zagreb where the bigggest hospital centre is, and he recived the full dose there.

But, the thing is that we have recived a letter of recommendation from an american doctor; and than we gave this letter to our pediatrician and he approved the procedure.(it was absolutely not as simple as it seems now, we went true a lot of fighting and persuading..and finally got the approval!

 

I must tell You that I also belive that we are one of the firsts in our country who did IVIG for pandas, because in our country the problem is very simmilar - no one knows anything about it!

So,I don't know the procedure in Your country, but, I belive that the docotrs there have also IVIG; but,they are using it for some other conditions just like here. So, maybe You can try to ask in Your hospitals somewhere - maybe in the bigger hospital centers, and see if they have IVIG.In our country IVIG is used in treating some serious autoimmune diseases. The doctors at the hospital were pretty sceptical about it, but they didn't turn us off..

 

Also, I think it would be possible to do it here in Croatia, but I don't know how this works..it will probably need to be paid, but I can ask if You want if there even is a possibilitie for this.

I don't know again how is it in Albania, but in our country if You have a disease which can not be treated properly in our country, our medical insourance is taking some of the coasts if You are going to some other country. It's too complicated and You need like tons of documentations ecc.(we didn't recive their approval). This is very difficult to achieve, but some have used this allready in some sever cases when it was a matter of life and death.

 

And I would like to ask You one for us very important question. You mentioned dr. M.P. in Milano? Am I wright? Can You please send me to my pm full name of this docotr? Please, be so kind, because I think that we went to the same doctor inMilano, but he told us that he dosen't belive in PANDAS, and that my son has Tourette; so, I'm , a bit confused wright now..How did You come to this doctor? Would really appreciate Your answer.

 

Hope I was a little bit helpfull, and for all other questions do not hesitate to contact me..

looking forward to Your answer,

[kos_mom]

stiv mommy,

 

What kind of doctor was the physician you saw in Milan? I looked up Iperico and it is what we call St. John's Wort, an herb that is said to have anti-depressive properties. I can't imagine it has any use at all for PANDAS.

 

Before you pursue IVIG, which could be very difficult to obtain in your situation, I'd recommend you find a way to get your son antibiotics and see if there is an improvement in a month or six weeks. Is it possible to have your doctor test your child for strep, mycoplasma pneumonia, and ebstein barr virus, as well as lyme disease? For strep you need to do both the cultures and the titers as well as antiDnase B (I understand this latter test may not be so common outside the US, so you might not be able to get it).

 

If he has any of these infections, try to get your doctor to prescribe antibiotics.

 

Ko's Mom

[sosudden]

Jaal, our dd got ivig with Dr K 8 months ago. I would do it again. She was nonfunctioning, ticcing and compulsing all day long and doing strange writhing movements and falling to the floor, hadn't "talked" to us for weeks prior, and more.... The ivig with Dr K "brought her back". Immediately after ivig the writhing movements and headstanding and super intense startle response were gone. The tics were gone within a month. The OCD remains...but slowly and truly a saw-tooth pattern of healing.

So, Dr K does seem to use the same percentages for these kids - he told us the same numbers. It iz expensive - our insurance denied coverage. But in our case I am so grateful he listened to our story and helped our dd. Like all the others replied -- it is a journey of healing the body, supporting the immune system, possibly consulting other doctors (we aslo have Dr T on board), dealing with flares, etc.

So, ivig brought our dd back to us, made her able to function but it continues to be a journey. I truly don't think she will need it again but I would if we thought she did.

[albmum]

stiv mommy,

 

What kind of doctor was the physician you saw in Milan? I looked up Iperico and it is what we call St. John's Wort, an herb that is said to have anti-depressive properties. I can't imagine it has any use at all for PANDAS.

 

Before you pursue IVIG, which could be very difficult to obtain in your situation, I'd recommend you find a way to get your son antibiotics and see if there is an improvement in a month or six weeks. Is it possible to have your doctor test your child for strep, mycoplasma pneumonia, and ebstein barr virus, as well as lyme disease? For strep you need to do both the cultures and the titers as well as antiDnase B (I understand this latter test may not be so common outside the US, so you might not be able to get it).

 

If he has any of these infections, try to get your doctor to prescribe antibiotics.

 

Ko's Mom

Edited October 14, 2012 by stivmommy

[albmum]

Hi ko's mum

my son had never been diadnosed for lyme mycoplasma or other infections.Hehas hadseveral strep infections and since 4years old he has been diagnosed with dermatophagoid allergy for which he takes the vaccine regularely.

I started augmentin today.....hope he will improve his vocal tic.

The doctor in Milan is neurologist(Ithink its mis spelled)

best regards

stivmommy

[allboysmom]

I also heard the the more infections the child has had and the length of time you've been dealing with it, has to do with how many IVIG treatments are optimally needed but everyone is different. My son is 15 and has been dealing with this since he was about 4. However, we were just recently diagnosed (year and 1/2 ago after MANY misdiagnoses) and now see dr b and we're "awaiting" insurance approval for it...which most likely won't come so we'll have to figure it out. However my son also most likely has Lyme so we're going to see dr jones next wk (have had appt for 4 months) so pretty complicated and chronic case since so many years have past.

[lulu4]

ptcgirl, I'm sorry the latest ivig hasn't been effective. We might be looking at the treatment sometime soon. However, my dd12 is terrified of the thought of it(needles! and side effects). What is it about the treatment that your daughter kind of enjoys? Any positive thing about it could be a plus to pass along to my girl when the time comes to consider the treatment. Thanks! and Good luck.

[Kathy4Him]

I certainly hope 12 years old is not too late! My two kids 19 and 22 are awaiting IVIG now!

 

 

Have your kids done the ivig and has it helped?

My son is 23 and getting ready to do ivig this week.

[ptcgirl]

Sorry I didn't get back on here sooner, Lulu! My daughter enjoys the whole experience of it. We travel from out of state so we always make a "fun trip" the day before treatment (visiting NYC, Yale, etc). I also let her eat whichever foods she wants and limit rules. The BIG thing for my dd is unlimited computer access though. At home, she isn't allowed to just sit on the computer all day with headphones on, eating whatever her heart desires, not do school work, etc. The only stipulation I put on her is that she HAS to drink lots of water during IVIG (and take her meds). But otherwise I let her do what she wants (which is a big deal for my now 13 year old computer loving kid. She hasn't had much of side effects (slight nausea and headaches when she doesn't drink enough). She also isn't afraid of shots, bloodwork, etc so it makes it much easier in that regard. Thankfully they don't try to do a strep culture because then she would "freak out!"

 

ptcgirl, I'm sorry the latest ivig hasn't been effective. We might be looking at the treatment sometime soon. However, my dd12 is terrified of the thought of it(needles! and side effects). What is it about the treatment that your daughter kind of enjoys? Any positive thing about it could be a plus to pass along to my girl when the time comes to consider the treatment. Thanks! and Good luck.

[Kimiejoe]

My DS 7 at the time has 1 IVIG and is about 87 percent better. We caught it early and the majority of his PANDAS symptoms have disappeared. DS still has some OCD issues but it is manageable. IVIG is an option but its not an overnight cure all. We have benefitted from IVIG thankfully but don't know at this point if a second dose will be imminent.