Just back from IVIG with Dr. K - great no tics !

[acdrobert]

I just got back from Chicago with my son after receiving IVIG over 2 days. We had such a postivie response to the steroid burst that it only made sense to follow through with the IVIG and the antibiotics. We went through a school year of almost constant ticking. In the summer when he was not in close indoor contact with other kids his tics dies down considerably. However 2 weeks after school started, BAM ! he was ticking once a second. Through our Ped Neuro we tried several neuro drugs including Orap and Abiify. These drugs did not cause any reduction in the tics. This winter we really had some social issues developing along with the separation anxiety. By day 2 of the steroid burst, Thomas stopped ticking and has continued that despite being exposed to multiple viruses that our family has had during the cold soggy month of March. Thomas has had a fever virus and a sinus infection with no tics. So I am fan of the steriods !

 

We had a very nice experience with Dr. K Like all of you I had my encounters with health professional who do not believe that PANDAS exists. I am grateful for having found an MD who can "think outsde the box" I was impressed beause he asked for things, no neuro had ever asked for. He wanted samples of handwriting, pictures that Thomas had drawn, and video. We will continue to provide these for a year.

 

Its not cheap, but so far the steriod burst and the IVIG have been life savers.

[EAMom]

Thanks for posting!!

 

Could you keep us updated on how your son continues to do in the coming months? I'd also be interested to know how he does next fall with a new school year/strep season.

 

How long are you staying on abs?

 

How old is your son?

 

Also, did your son have handwriting issues and did IVIG help?

[acdrobert]

Thanks for posting!!

 

Could you keep us updated on how your son continues to do in the coming months? I'd also be interested to know how he does next fall with a new school year/strep season.

 

How long are you staying on abs?

 

How old is your son?

 

Also, did your son have handwriting issues and did IVIG help?

 

 

I will do a better job of posting onthis board. At this point, we have a prescription for 3 months of Augmentin. I will ask Dr. K why he did not start us on Azith for the anti-inflammatory benefts. Maybe that comes later. Interesting to note that Thomas has had a postive response to several antibiotics. At first Amoxicillan would lessen his tics. he seems to have serial sinus infections and he always gets treated with Amox for those. Slowly the Amox did not lessen the tics as much. In February Thomas had some impetigo on his hands. He received Bactrim for that. Within 1 day he tics stopped with the Bactrim then after the 10 days ended his tics picked up again. The steroids provided the greatest amount of tic relief. It has been 5 weeks and counting post prednisone.

 

Thomas is 8 and started abruptly ticking on Jan 5 2008 when he was 7. Since the prednisone he has had some mild ADD symptoms. My older son has ADD so I know what "not so mild" symtoms look like. His handwriting went from typical first grade to big loopy letters. Now if I sit in the vicinity of his desk (not helping just sitting) then his handwrting greatly improves. To me this is typical of ADD. Whn my older son was in 3rd grade learning multiplication, his teacher discovered that if she sat on a stool with 10 feet of him that he tests scores would improves by 10 points or more. She actually did a little "research" on how far she could set her stool. Thomas is a social butterfly and has trouble sitting in his seat anyway. Recently he had to take his achievement tests. He has trouble staying withing the little answer bubble. He made a much bigger circle around the bubble.

From what I have read I am loathe to try him on any ADD meds. I just want to see if the IVIG and ABX help This school year is almost over anyway.

 

Thanks for being interested. I sincerely hope all of us and our children get some relief from this condition.

 

Anne

[EAMom]

For kids that have trouble sitting in their seats, this can help http://www.amazon.com/Isokinetics-Exercise...7349&sr=8-3 You may need to "adjust" the cushion by adding or letting out air. One 1st grade teacher in dd's school has almost her entire class using them.

 

Dr. K. doesn't seem to be a big user of Azithromycin. Personally, I am a big believer in Azith. since it is the only ab that really made a big difference in our pandas dd (other abs we tried....Augmentin, Amoxicillin, a cephalosporin). It also worked well to clear my strep carrier non-pandas dd. I know there is more Azith. resistance in certain parts of the country...I don't know if Illinois is one of those areas and that may be part of the reason Dr. K doesn't use it much.

[T_Mom]

Thank you so much for posting.

So good to hear your positive experience.

 

May I ask, did your son have OCD symptoms at any time with the tics?

 

Was he ever tested for strep (culture or titers)?

 

Thanks again, please do keep us updated.

All the best--

[bronxmom2]

Good luck!

Can I ask, how much did the IVIG with dr. K cost, all together?

 

Also, did you notice ADD symptoms only after the steroids? Or did the steroids just not improve them? Are the ADD symptoms improving with the IVIG?

 

I am wondering if any of you have considered homeschooling to minimize exposure to illnesses? I am considering homeschooling for many many reasons-- this among them-- though my son is just so moody and intense and stubborm, if don't know...

 

Anyway, good luck and do keep us posted.

[amy s]

I just got back from Chicago with my son after receiving IVIG over 2 days. We had such a postivie response to the steroid burst that it only made sense to follow through with the IVIG and the antibiotics. We went through a school year of almost constant ticking. In the summer when he was not in close indoor contact with other kids his tics dies down considerably. However 2 weeks after school started, BAM ! he was ticking once a second. Through our Ped Neuro we tried several neuro drugs including Orap and Abiify. These drugs did not cause any reduction in the tics. This winter we really had some social issues developing along with the separation anxiety. By day 2 of the steroid burst, Thomas stopped ticking and has continued that despite being exposed to multiple viruses that our family has had during the cold soggy month of March. Thomas has had a fever virus and a sinus infection with no tics. So I am fan of the steriods !

 

We had a very nice experience with Dr. K Like all of you I had my encounters with health professional who do not believe that PANDAS exists. I am grateful for having found an MD who can "think outsde the box" I was impressed beause he asked for things, no neuro had ever asked for. He wanted samples of handwriting, pictures that Thomas had drawn, and video. We will continue to provide these for a year.

 

Its not cheap, but so far the steriod burst and the IVIG have been life savers.

 

 

I am so happy to hear that your son is doing better after IVIg...and that you were able to get it done. My dd had IVIg in November and is doing great still. It is absolutely amazing. I would do it again in a heartbeat if she needed it. I agree, for us, it was a life saver.

[bmom]

That is wonderful to hear. We are 5 months post IVIG with Dr. K for tics as the main symptom, yet also some night time separation anxiety and frequent urination issues. My son is much better. It hasn't been 100% symptom free, but he also had an ear infection and was diagnosed with strep 3 1/2 months post IVIG. All in all, things are better. He is 10 so it is possibly taking longer too. Dr. K has had more success with augmentin and prefers that. He has talked about switching my son if the Augmentin continues to not keep the strep away. Thanks for posting!!

[acdrobert]

Thank you so much for posting.

So good to hear your positive experience.

 

May I ask, did your son have OCD symptoms at any time with the tics?

 

Was he ever tested for strep (culture or titers)?

 

Thanks again, please do keep us updated.

All the best--

 

 

When he started abruptly ticking on 1/5/2008 he did have a very high strep titier. He did not have any symptoms (sore throats, fever, etc) of a current strep infection so nothng was cultured. As far as OCD symptoms, nothing that was real obvious. I have been on the look out for those. In fact my husband thinks that I have developed OCD by looking for OCD symptoms. Dr. k told me that "sometimes weird things happen" the first few days after IVIG and not to be alarmed. So far, notthing earth shattering. He did have a few moments of separation anxiety when gettin on the bus today to go to school. In the past few months he defintely has regressed. he is very old for his grade anyway so this was a little hard to watch. He wants to play with kids much younger than he is. Drl in his intial exam of Thomas said that he acted more like a 5-6 year old. He is 8. I have always atrributed that to the fact that his first year was just a wash. I adopted Thomas from a very poor orphange in Russia. He was 10 months at the time but acted more like 5-6 months. My older son is like that, too. But it the last 6 months he has regressed furthur. Luckily he is physically very small. So no one ever guesses that he is 8 and in the frist grade. Developmentally he is perfect.

[acdrobert]

Good luck!

Can I ask, how much did the IVIG with dr. K cost, all together?

 

Also, did you notice ADD symptoms only after the steroids? Or did the steroids just not improve them? Are the ADD symptoms improving with the IVIG?

 

I am wondering if any of you have considered homeschooling to minimize exposure to illnesses? I am considering homeschooling for many many reasons-- this among them-- though my son is just so moody and intense and stubborm, if don't know...

 

Anyway, good luck and do keep us posted.

 

I have considered homeschooling. However Thomas is a very social kid and I think that he would be very lonely. Many people have told me that he wil grow up to be either a politician or a wall mart greater, (Its a toss up as to which I would prefer Thomas would probably feel like we were punishing him which of course I don't want him to feel. You know its intersting.....I have been keeping a log, but one thing I can't remember is whether or not he had ADD symptoms before the steroids. I remember him constatnly ticking and then showing some anxiety and then depression symptoms relating to the ticking. When he stopped ticking we were so relieved that he immediately returned to his sort of happy go lucky personality. It was then that we noticed the handwriting and the lack of focus problems.

 

$100 per gram/kg of IVIG so that worked out to be 35 gr of IVIG for Thomas. So 3500 for the IVIG, add another 2000 for the facility fee and 2400 for Dr. K. They are going to file for coverage with BC/BS but I am not holding my breath. Plus the flight and hotel bills !

[EAMom]

What dose did Dr. K. use on your son? I believe Dr. K's normal protocaol is 1.5gm/kg (divided over 2 days). (Is Thomas 35kgs...or less?)

 

We're hoping to get IVIG locally (northern CA) but may just end up going to Dr. K, we'll see how things go.