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My son has had PANDAS Help !


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On January 5th 2008 at 5;30 pm my 7 year old son started having tics.....double head nods coming about 1 every 15 seconds then to an almost constant ticking state. Since then he had undergone a CAT scan, ECG test and ruled all that out. We started seeing a PEds Neuro who diagnosed him with either a TIC Disorder or PANDAS. She has treated him with Orap and Abilify. Both neuro drugs seem to initially work by slowing the tics down for about a month, then they slowly don't work. The tics return. This summer he had very few tics and was weaned off of all drugs. Two weeks after school starts he starts ticking again. He almost has head bobs but sometimes has vocal tics and shoulder shruggs. Sometimes he does this little "dance" - hard to descirbe. My husband and I can't decide if this is a tic or if he does this to cover up the tics. He had a high strep titer when he satarted ticking. Since then has had multiple bots of URI and sinusitis but no positive test for strep. The first couple times he received Amoxicillan his tics subsided almost incredibly. This last time January 2009 the tics got worse. We are getting very frustrated. He has started to show signs of social anxiety. He has been asked about his tics and he responds well to other kids. "thats just something God wants me to do" but then falls apart in private. Our Peds neuro wants to start him on Zoloft. I have an appointment with a counselor who will hopefully lead us down a path to better acceptance and will help his self esteem. Thomas was a very outgoing child who loved to socialize. It is incredibly sad to see that part pf his personality being taken away from him. I have spoken to Dr. K in Chicago who has confirmed via email that he thinks Thomas has PANDAS. Has anyone gone to him ? How long does it take to get an appointment with him ? Has anyone tried IVIG ? What are your experiences. I am a homecare RN and I have given IVIG several times so I am not afraid of the drug. I wish my insurance compnay BC/BS would pay for it. If anyone has any advice for me I would love to hear it. right now we are at our wits end.

 

Yesterday he was dignosed with impetigo. Out peds told us that winter impetigo was often caused by MRSA. (now I am scared) and started him on Bactrim. I am curious to see what that does to his tics.

 

many thanks for your help.

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On January 5th 2008 at 5;30 pm my 7 year old son started having tics.....double head nods coming about 1 every 15 seconds then to an almost constant ticking state. Since then he had undergone a CAT scan, ECG test and ruled all that out. We started seeing a PEds Neuro who diagnosed him with either a TIC Disorder or PANDAS. She has treated him with Orap and Abilify. Both neuro drugs seem to initially work by slowing the tics down for about a month, then they slowly don't work. The tics return. This summer he had very few tics and was weaned off of all drugs. Two weeks after school starts he starts ticking again. He almost has head bobs but sometimes has vocal tics and shoulder shruggs. Sometimes he does this little "dance" - hard to descirbe. My husband and I can't decide if this is a tic or if he does this to cover up the tics. He had a high strep titer when he satarted ticking. Since then has had multiple bots of URI and sinusitis but no positive test for strep. The first couple times he received Amoxicillan his tics subsided almost incredibly. This last time January 2009 the tics got worse. We are getting very frustrated. He has started to show signs of social anxiety. He has been asked about his tics and he responds well to other kids. "thats just something God wants me to do" but then falls apart in private. Our Peds neuro wants to start him on Zoloft. I have an appointment with a counselor who will hopefully lead us down a path to better acceptance and will help his self esteem. Thomas was a very outgoing child who loved to socialize. It is incredibly sad to see that part pf his personality being taken away from him. I have spoken to Dr. K in Chicago who has confirmed via email that he thinks Thomas has PANDAS. Has anyone gone to him ? How long does it take to get an appointment with him ? Has anyone tried IVIG ? What are your experiences. I am a homecare RN and I have given IVIG several times so I am not afraid of the drug. I wish my insurance compnay BC/BS would pay for it. If anyone has any advice for me I would love to hear it. right now we are at our wits end.

 

Yesterday he was dignosed with impetigo. Out peds told us that winter impetigo was often caused by MRSA. (now I am scared) and started him on Bactrim. I am curious to see what that does to his tics.

 

many thanks for your help.

 

 

I don't have much time right now so I will write to you later...but I wanted to let you know that I have had a telephone consult, exchanged several emails and my child has used Dr. K's IVIg protocol (given by our private pediatrician) with great success. You are in good hands with Dr. K. There are many more that I am sure will get in touch with you regarding their experiences. Dr. K knows these pandas kids well. I will write more later.

regards,

amy

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We've been working with Dr. K since our son's symptoms exploded in August of 08 (much worse than original bout). Dr. K clearly understands this illness better than anyone else we've seen... and we've seen a lot of doctors! He's given us hope.

 

Here are a few threads on the forum that you might want to check out for more info on Dr. K (although he's mentioned on many more):

 

http://www.latitudes.org/forums/index.php?...;hl=Dr\.+K

 

http://www.latitudes.org/forums/index.php?...;hl=Dr\.+K

 

Good luck, and hang in there. Finding the right doctor is half the battle!

 

 

...I have spoken to Dr. K in Chicago who has confirmed via email that he thinks Thomas has PANDAS. Has anyone gone to him ? How long does it take to get an appointment with him ? Has anyone tried IVIG ? What are your experiences. I am a homecare RN and I have given IVIG several times so I am not afraid of the drug. I wish my insurance compnay BC/BS would pay for it. If anyone has any advice for me I would love to hear it. right now we are at our wits end...
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Hello & so glad you found this board! My sons tics were very mild but cleared up after IVIG. I sent you a PM too about the impetigo(my son has it too & it won't go away!)

 

THe problem with these docs is they want to treat the symptoms..my son was a wreck more on anti-depressants, he didn't need more serotonin..these kids need their immune system modulated! Right now we are starting him back on azith & acyclovair to regulate his immune system.

 

I understand your pain..my son has lost his outgoing, happy personality too. That is the hardest part for me to see his friends stop wanting to play etc. because he is so different now. He is very spacey now and has a hard time concentrating.

 

Like I said in your email, every kid is different and you just have to start trying....IVIG, azith or supplements, meds..there is no one protocal that works for everyone..Sarah

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On January 5th 2008 at 5;30 pm my 7 year old son started having tics.....double head nods coming about 1 every 15 seconds then to an almost constant ticking state. Since then he had undergone a CAT scan, ECG test and ruled all that out. We started seeing a PEds Neuro who diagnosed him with either a TIC Disorder or PANDAS. She has treated him with Orap and Abilify. Both neuro drugs seem to initially work by slowing the tics down for about a month, then they slowly don't work. The tics return. This summer he had very few tics and was weaned off of all drugs. Two weeks after school starts he starts ticking again. He almost has head bobs but sometimes has vocal tics and shoulder shruggs. Sometimes he does this little "dance" - hard to descirbe. My husband and I can't decide if this is a tic or if he does this to cover up the tics. He had a high strep titer when he satarted ticking. Since then has had multiple bots of URI and sinusitis but no positive test for strep. The first couple times he received Amoxicillan his tics subsided almost incredibly. This last time January 2009 the tics got worse. We are getting very frustrated. He has started to show signs of social anxiety. He has been asked about his tics and he responds well to other kids. "thats just something God wants me to do" but then falls apart in private. Our Peds neuro wants to start him on Zoloft. I have an appointment with a counselor who will hopefully lead us down a path to better acceptance and will help his self esteem. Thomas was a very outgoing child who loved to socialize. It is incredibly sad to see that part pf his personality being taken away from him. I have spoken to Dr. K in Chicago who has confirmed via email that he thinks Thomas has PANDAS. Has anyone gone to him ? How long does it take to get an appointment with him ? Has anyone tried IVIG ? What are your experiences. I am a homecare RN and I have given IVIG several times so I am not afraid of the drug. I wish my insurance compnay BC/BS would pay for it. If anyone has any advice for me I would love to hear it. right now we are at our wits end.

 

Yesterday he was dignosed with impetigo. Out peds told us that winter impetigo was often caused by MRSA. (now I am scared) and started him on Bactrim. I am curious to see what that does to his tics.

 

many thanks for your help.

 

So sad for you. I just said a prayer for all of our children on this forum. Our daughter did very well last summer too, like your son. I believe it could be that during that time there are less viruses out there to assault their immune system. After talking to many doctors, the one thing they seem to concur on is that this is not just about strep. I know that we focus on that here - the titers and the antibiotics and all, but it is almost anything that produces an inflammatory response which then will start the anti-self antibodies attacking the brain. That's why a lot of people on here will talk about how they're trying various antibiotics and it works for a while, then doesn't seem to help - it's most likely because with some flairs it has nothing to do with strep, but viruses - which don't respond to antibiotics.

 

We did IVIG with Dr. K in October and initially had a really good response. After a while, it seemed like we were slipping back to square one. Having talked to doctors and other parents (some using IVIG for PANDAS - some for autism) it seems that the IVIG always helps for a while, but the effects are not always permanent. Dr. K seems to think we could have benefited from a higher dose, although we were already at a high dose. He may be right though. Other parents have used lower doses more frequently and usually see some benefit after each infusion. Its probably the only treatment (outside of plasmaphoresis) that is working to try to correct the problem with the immune system. Some of the other things out there just help with the symptoms - and sometimes you have to just do that. The IVIG can be so expensive if you continue with it (especially since insurance companies aren't usually very cooperative).

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