vocalizations

[fuelforall]

Hi, I'm a newbie. My son is 9 and his PANDAS is getting more certain as a diagnosis and his outbursts, when they occur, worsen. Everything is in cycles of course. He has been in a down cycle ( meaning good) of late but we are starting to get a pick up in vocalizations. And my younger son just got sick so ugh, I don't want to think about son number one being exposed to this!

 

I saw this word used in another post and I really don't know what to say except that is THE MAJOR SYMPTOM in my son. Yes, he has the can't sleep alone problem. Yes, he has motor tics now, just popped up. His last anxiety attack in an UP cycle necessitated a trip to the emergency room. We thought he had lost his mind. He is on Abilify and lately Focalin- the Abilify seems to have helped some. The cycle swung in such a way that his summer school teachers almost think he is a different person now from earlier in the summer session.

 

Back to vocalizations. My son squeaks and annoys other people like nobody's business. How he manages to still have a social life and friends, I don't know (he does have personal magnetism, always has and I'm not just saying that because he is my son). But his noises and behavior are so infuriating and have gone on for so long (YEARS), his docs (Bock, Compain in Rhinebeck) thought it was mainly yeast- he did test for extra yeast and went on antifungals. Then he got high DNase etc numbers back on blood tests. Hmmm. But Zithromax did zip. And Omnicep made him seem worse. So we decided to look at other factors- I have my appt with Bock tomorrow by phone and he is going to look at the new tests we got. It is certain he will advise Pandas treatment and will recommend IVIG. I don't think he supports steroids. He is trying different ways to get insurance coverage for it.

 

What I want to know is what are some vocalizations. Beyond temper tantrums, beyond just getting mad. My son starts playing other characters, getting SILLY SILLY SILLY to the max and it has gotten to the point where it feels less like a tic and more like a habit- I'm sure it's a bit of both ultimately. PLEASE tell me if IVIG reduced vocal tics because it is really going to hurt my son in the long run if he continues to behave this way with other kids. He goes to an inclusion school so everyone is used to oddball behavior. But it can't go on. I'm hoping treating the PANDAS will do much for him. What say all of you?

 

THanks in advance and look forward to sharing with you.

 

Michael

 

PS WOULD LIKE TO HEAR FROM NANCY D- I BELIEVE BOCK IS YOUR DOCTOR?

[pandas2boys]

Hi, I'm a newbie. My son is 9 and his PANDAS is getting more certain as a diagnosis and his outbursts, when they occur, worsen. Everything is in cycles of course. He has been in a down cycle ( meaning good) of late but we are starting to get a pick up in vocalizations. And my younger son just got sick so ugh, I don't want to think about son number one being exposed to this!

 

I saw this word used in another post and I really don't know what to say except that is THE MAJOR SYMPTOM in my son. Yes, he has the can't sleep alone problem. Yes, he has motor tics now, just popped up. His last anxiety attack in an UP cycle necessitated a trip to the emergency room. We thought he had lost his mind. He is on Abilify and lately Focalin- the Abilify seems to have helped some. The cycle swung in such a way that his summer school teachers almost think he is a different person now from earlier in the summer session.

 

Back to vocalizations. My son squeaks and annoys other people like nobody's business. How he manages to still have a social life and friends, I don't know (he does have personal magnetism, always has and I'm not just saying that because he is my son). But his noises and behavior are so infuriating and have gone on for so long (YEARS), his docs (Bock, Compain in Rhinebeck) thought it was mainly yeast- he did test for extra yeast and went on antifungals. Then he got high DNase etc numbers back on blood tests. Hmmm. But Zithromax did zip. And Omnicep made him seem worse. So we decided to look at other factors- I have my appt with Bock tomorrow by phone and he is going to look at the new tests we got. It is certain he will advise Pandas treatment and will recommend IVIG. I don't think he supports steroids. He is trying different ways to get insurance coverage for it.

 

What I want to know is what are some vocalizations. Beyond temper tantrums, beyond just getting mad. My son starts playing other characters, getting SILLY SILLY SILLY to the max and it has gotten to the point where it feels less like a tic and more like a habit- I'm sure it's a bit of both ultimately. PLEASE tell me if IVIG reduced vocal tics because it is really going to hurt my son in the long run if he continues to behave this way with other kids. He goes to an inclusion school so everyone is used to oddball behavior. But it can't go on. I'm hoping treating the PANDAS will do much for him. What say all of you?

 

THanks in advance and look forward to sharing with you.

 

Michael

 

For years, my son used to talk very loud, up to the point that he was almost always shouting. Everytime he got into a discusion or argument with a sibling, the walls were shaking and it drove us nuts. He had plenty of tantrums too, and anytime someone took something from him or he didn't get what he wanted, he would lay on the floor facedown kicking and screaming. This went on from about age 3 -4 until age 6 1/2. We had no clue what PANDAS was and never heard of it. We tested his hearing which was fine. Then he developed the rolling eye tics, which our local pediatrician advised us to "just ignore it", and then after a few weeks, he starting the mouth tics - grimacing his jews etc We finaly got a break when we were referred to try a doctor who "dealt with similiar issues", who ultimately informed us about PANDAS. His results on the ASO were positive. We ended up keeping him on Zithromax for almost two years. To what I remember, we didn't see an instant relief on Zithromax, it did take some time, maybe 3 - 6 weeks until he started to become normal again. After two years, we finaly weaned him off it, and he was stable for about 2 months until he caught a virus and then it was party time all over again.

 

After our phone consult with Dr K, we tried the steroid burst - 30 mg of prednisone a day for 5 days, the first day was paradise. Our son was so calm and relaxed, it was unbelievable. But on day 2, he broke out with bad sinus symptoms - coughing, nasal drip etc and for the next few days he was miserable. Once the sinus cleared up, we saw some relief, but not as much as we hoped for. We are scheduled to meet Dr Latimer at the end of this month, and we hope to move ahead by doing IVIG.

[lss]

Michael,

 

We did IVIG back in the end of May and I can tell you that with our son who is now 10 and has vocal tics mostly with some motor tics, well the tics did go away for about 3 weeks, then we saw new tics we had never heard before.

 

Dr. K said this would happen, but I'm not sure. Some of the other symptoms also got better, but the separation anxiety has not gotten better. Because of the vocal tics, we are considering home schooling him. It was difficult last year, and his teachers and the rest of the kids were really great with him, but this year the tics are actually worse and I don't think its fair for the other kids.

 

We are currently looking into Plasma exchange with Dr. Latimer. We see her tomorrow.

 

Linda

[pandas2boys]

We also found it interesting that in his bad times, say like if god forbid someone shut the CD player, oh would he scream, yet, he still had a pretty good social life and friends. His teachers actually used to tell me that he was more on the quite end in school, but the minute he came home, BOOM!

[fuelforall]

Michael,

 

We did IVIG back in the end of May and I can tell you that with our son who is now 10 and has vocal tics mostly with some motor tics, well the tics did go away for about 3 weeks, then we saw new tics we had never heard before.

 

Dr. K said this would happen, but I'm not sure. Some of the other symptoms also got better, but the separation anxiety has not gotten better. Because of the vocal tics, we are considering home schooling him. It was difficult last year, and his teachers and the rest of the kids were really great with him, but this year the tics are actually worse and I don't think its fair for the other kids.

 

We are currently looking into Plasma exchange with Dr. Latimer. We see her tomorrow.

 

Linda

 

Hi, Linda, why would plasma be any better? When you did IVIG once, did you go back for repeat treatment? My son has bedtime stuff but not that much separation anxiety, although he likes to do things "as a family." Just curious

[NancyD]

Hi Michael,

 

Welcome to the forum!

 

Both motor tics and vocalizations are common to PANDAS. Vocalizations come in all types and sizes. For some children, they may be loud, while for other children, they may be much more subtle. A vocalization may be a spontaneous, involuntary grunt, squeal, scream, bark, or utterance of an inappropriate or offensive word or phrase.

 

Last year my daughter had an overnight onset of vocalizations after we took her off a new medication that we were trying for her OCD (she had her first PANDAS episode at the age of 3 though she was not diagnosed until age 7). She was grunting, squealing, and shouting all kinds of horrible and bizarre phrases. These were phrases I could never imagine my 12-year-old knew, much less would repeat in public. Needless to say, she was very embarassed and wanted to crawl under a rock. Prior to this she was very social and loved to spend time with friends. She isolated herself and became very depressed.

 

We also see Dr. Bock (Ken, not Steven) and he had been pushing IVIG for a few years, but I could not get insurance to cover it until last August. Within 3 months (after the third infusion) 100% of the vocalizations were gone and 90-95% of the motor tics were gone. My daughter began sleeping through the night for the first time, her moods were regulated, and the rages were gone completely. She is off Risperdal for the first time in 10 years and she is so much happier. It has not helped with the OCD/anxiety, but for us, it has been an amazing transformation. Ken Bock has never suggested steroid bursts to us, but he is very open minded. We have tried many different treatments over the years and many different antibiotics -- some work better than others (PenVK worked best for us without making the yeast much worse) and others made the symptoms a lot worse. Every child is different so the treatment must be individually tailored. But Ken has always pushed for IVIG and he is supportive of PEX. Ken considered my daughter's PANDAS to be one of the most complex cases he has seen.

 

Good luck with your appointment and keep us posted!

 

Nancy

 

 

Hi, I'm a newbie. My son is 9 and his PANDAS is getting more certain as a diagnosis and his outbursts, when they occur, worsen. Everything is in cycles of course. He has been in a down cycle ( meaning good) of late but we are starting to get a pick up in vocalizations. And my younger son just got sick so ugh, I don't want to think about son number one being exposed to this!

 

I saw this word used in another post and I really don't know what to say except that is THE MAJOR SYMPTOM in my son. Yes, he has the can't sleep alone problem. Yes, he has motor tics now, just popped up. His last anxiety attack in an UP cycle necessitated a trip to the emergency room. We thought he had lost his mind. He is on Abilify and lately Focalin- the Abilify seems to have helped some. The cycle swung in such a way that his summer school teachers almost think he is a different person now from earlier in the summer session.

 

Back to vocalizations. My son squeaks and annoys other people like nobody's business. How he manages to still have a social life and friends, I don't know (he does have personal magnetism, always has and I'm not just saying that because he is my son). But his noises and behavior are so infuriating and have gone on for so long (YEARS), his docs (Bock, Compain in Rhinebeck) thought it was mainly yeast- he did test for extra yeast and went on antifungals. Then he got high DNase etc numbers back on blood tests. Hmmm. But Zithromax did zip. And Omnicep made him seem worse. So we decided to look at other factors- I have my appt with Bock tomorrow by phone and he is going to look at the new tests we got. It is certain he will advise Pandas treatment and will recommend IVIG. I don't think he supports steroids. He is trying different ways to get insurance coverage for it.

 

What I want to know is what are some vocalizations. Beyond temper tantrums, beyond just getting mad. My son starts playing other characters, getting SILLY SILLY SILLY to the max and it has gotten to the point where it feels less like a tic and more like a habit- I'm sure it's a bit of both ultimately. PLEASE tell me if IVIG reduced vocal tics because it is really going to hurt my son in the long run if he continues to behave this way with other kids. He goes to an inclusion school so everyone is used to oddball behavior. But it can't go on. I'm hoping treating the PANDAS will do much for him. What say all of you?

 

THanks in advance and look forward to sharing with you.

 

Michael

[fuelforall]

Hi, Nancy,

Yes you are definitely the one Ken mentioned, tho not by name. he pushed IVIG on me last conversation and said, " I got a patient up in Massachusetts with severe PANDAS who is doing really well with it." I figured it was your child.

 

I'm kind of hoping IVIG will be successful because a lot of my son's condition is NOT as severe as many- I'm sure you read about the kid in Ken's book, the book that brought me to him. Lordy, don't think my family could make it through another attack. I'm thinking I'll go begging from Grandma if I have to to treat this thing, if the financials don't work out. Ken had me run an anti-blood endothelial antibody test to help get insurance, we'll see tomorrow how it came out. My son was still struggling some when we took his blood, oh, that was not a good day.

 

We'll have to get in touch somehow at some point outside the blog.

 

Best,

Michael

[NancyD]

Hi Michael,

 

Yes, that is my daughter Ken is talking about. He profiled her in his book and documentary (she's the one with PANDAS and ASD though he gave her a pseudonym). She was doing well when the book was written and then she went downhill.

 

With regards to insurance, can you switch to another plan that covers IVIG? In which state do you live? Be sure to check out the thread called "If your ped is on board with IVIG, how do you logistically make it hap". In one of the later posts EAMom suggests using "Unspecified Immune deficiency" or "autoimmune encephalitis".

 

You are welcome to contact me outside the forum.

 

Nancy

 

Hi, Nancy,

Yes you are definitely the one Ken mentioned, tho not by name. he pushed IVIG on me last conversation and said, " I got a patient up in Massachusetts with severe PANDAS who is doing really well with it." I figured it was your child.

 

I'm kind of hoping IVIG will be successful because a lot of my son's condition is NOT as severe as many- I'm sure you read about the kid in Ken's book, the book that brought me to him. Lordy, don't think my family could make it through another attack. I'm thinking I'll go begging from Grandma if I have to to treat this thing, if the financials don't work out. Ken had me run an anti-blood endothelial antibody test to help get insurance, we'll see tomorrow how it came out. My son was still struggling some when we took his blood, oh, that was not a good day.

 

We'll have to get in touch somehow at some point outside the blog.

 

Best,

Michael

[fuelforall]

UPDATE

 

My talk with Dr. Bock muddied the waters some. My son's Lyme test came back borderline positive. Dr. Bock has seen his share of Lyme and is unconvinced by what he sees so what to do? Take more tests, of course! (oh, swell) So we have to go back and do more Lyme testing to confirm or deny Lyme's existence here. I certainly don't blame him for wanting to be sure, he doesn't want to hand out a three-month course of antibiotics for something that isn't there. PANDAS DNase, etc numbers were down from before. The anti-blood endothelial antibody test was negative.

 

As NancyD knows, Dr. Bock is pro IVIG. He did not mince words about PEX plasmaresis, calling it too expensive and more of a research tool. (I guess that differs from what NancyD told me about him) He is not pro-steroid - apparently a patient had a bad experience - but says he would be open to a 5-day boost. Haven't decided what to do there but certainly want to wait until we have all the Lyme info.

 

Worst part is of course not getting insurance to cover anything. I have Aetna through work, no options. Nuff said, the insurance company that says no to everything and pays doctors as little as possible. We can throw every term- autoimmune encephalitis- at them and you know immediately they will tell you to take a hike. I may just splurge for one treatment to see what happens (any thoughts on this or should a steroid boost be tried first? , as his stimulant use seems to be provoking more vocal tics (we're taking him off the stimulant to test the hypothesis).

 

My son does not have much OCD, this accounts for why PANDAS diagnosis is so tricky. I do know when he was 3 every gate we walked by in our gate filled neighborhood he had to go and shut. Sort of a repetitive autism like thing. And he does obsess on subjects and activities. But he is so scattered that it limits his OC tendencies. I saw ColleenRN's post about the crossover of bipolar and PANDAS- many of those traits do fit my son.

 

Sigh, so much time passing, so little progress. I know others on this forum feel that way at times.

[NancyD]

Hi Michael,

 

I'm sorry you are feeling so frustrated by this new possible complication. Unfortunately, this is part of the process. For some of us, this can take years. Dr. Bock is thorough and he is methodical in his approach. It may take a little time, but rest assured, he will get to the bottom of it. He does treat a lot of Lyme patients and if your son's test came back borderline positive, then that is certainly an avenue to explore first. I'm sure, along the way, there will be other avenues to explore, as there is nothing simple about PANDAS. While he may not favor PEX as a first, second, or even third course of treatment, I feel certain that when it is time for us to explore options beyond IVIG, Dr. Bock will be supportive of PEX. But I agree that you should consider IVIG and other options before considering PEX.

 

Regarding insurance, can you get and pay for another insurance plan for your child that will cover IVIG (even if it's for a few months)? That would certainly be cheaper than having to pay 100% for the infusions. I know a parent that did this. Just a thought.

 

Nancy

 

UPDATE

 

My talk with Dr. Bock muddied the waters some. My son's Lyme test came back borderline positive. Dr. Bock has seen his share of Lyme and is unconvinced by what he sees so what to do? Take more tests, of course! (oh, swell) So we have to go back and do more Lyme testing to confirm or deny Lyme's existence here. I certainly don't blame him for wanting to be sure, he doesn't want to hand out a three-month course of antibiotics for something that isn't there. PANDAS DNase, etc numbers were down from before. The anti-blood endothelial antibody test was negative.

 

As NancyD knows, Dr. Bock is pro IVIG. He did not mince words about PEX plasmaresis, calling it too expensive and more of a research tool. (I guess that differs from what NancyD told me about him) He is not pro-steroid - apparently a patient had a bad experience - but says he would be open to a 5-day boost. Haven't decided what to do there but certainly want to wait until we have all the Lyme info.

 

Worst part is of course not getting insurance to cover anything. I have Aetna through work, no options. Nuff said, the insurance company that says no to everything and pays doctors as little as possible. We can throw every term- autoimmune encephalitis- at them and you know immediately they will tell you to take a hike. I may just splurge for one treatment to see what happens (any thoughts on this or should a steroid boost be tried first? , as his stimulant use seems to be provoking more vocal tics (we're taking him off the stimulant to test the hypothesis).

 

My son does not have much OCD, this accounts for why PANDAS diagnosis is so tricky. I do know when he was 3 every gate we walked by in our gate filled neighborhood he had to go and shut. Sort of a repetitive autism like thing. And he does obsess on subjects and activities. But he is so scattered that it limits his OC tendencies. I saw ColleenRN's post about the crossover of bipolar and PANDAS- many of those traits do fit my son.

 

Sigh, so much time passing, so little progress. I know others on this forum feel that way at times.