Six year old son starting to show signs...

[mom md]

As many know, my son Carter (9) was diagnosed last year with PANDAS. We have been down the complete road...antibiotics, steroids, PEX, and IVIG. WE are now 95% but will not stop until we are at 100%. Unfortunately my younger son Spencer (6) has started showing signs. He began with transient tics (shirt chewing) at age 5 after a skin strep infection, and now has ADHD type behavior, impulse issues, oppositional defiant behavior, cognitive inflexibility, and sleep issues. I checked his ASO (384) and his antiDNase B (960). The child has not had a known strep infection since last spring. I was in denial for a while. Too exhausted to accept it but now I am ready to deal. I took him to the pediatrician (Margaret Siegel, MD) yesterday. She is my new pediatrician and I am already thrilled. I told her I know these things seem minor, but I know where I am headed. She called the neurologist (Tessita Nelson,MD who books out till December) and has agreed to see us later this summer. This neurologist has seen my other son. At Carter's visit she said she was fascinated with all this. She views it as an autoimmune basal ganglion syndrome that was probably started by a strep infection. She did say she was concerned that this could be more "chronic" than I had orgionally thought and he might need IVIG every 3-6 months to keep him at baseline. She also asked about my other two children. She said it often can affect a sibling. She said she had experiance with PANDAS from her training at Baylor.

She wants an MRI of Spencer to rule out any other causes and then will help us treat this. In the meantime she wants him on azith for 30 days to see if it can calm his immune system. I also have another neurologist here (Jean Corbier, MD) who believes in PANDAS and is willing to treat. He is hiring two new neurologist this summer so he can focus on autism and PANDAS. He said after July he will be much easier to get into see. YEAH!!!!!

[bgbarnes]

As many know, my son Carter (9) was diagnosed last year with PANDAS. We have been down the complete road...antibiotics, steroids, PEX, and IVIG. WE are now 95% but will not stop until we are at 100%. Unfortunately my younger son Spencer (6) has started showing signs. He began with transient tics (shirt chewing) at age 5 after a skin strep infection, and now has ADHD type behavior, impulse issues, oppositional defiant behavior, cognitive inflexibility, and sleep issues. I checked his ASO (384) and his antiDNase B (960). The child has not had a known strep infection since last spring. I was in denial for a while. Too exhausted to accept it but now I am ready to deal. I took him to the pediatrician (Margaret Siegel, MD) yesterday. She is my new pediatrician and I am already thrilled. I told her I know these things seem minor, but I know where I am headed. She called the neurologist (Tessita Nelson,MD who books out till December) and has agreed to see us later this summer. This neurologist has seen my other son. At Carter's visit she said she was fascinated with all this. She views it as an autoimmune basal ganglion syndrome that was probably started by a strep infection. She did say she was concerned that this could be more "chronic" than I had orgionally thought and he might need IVIG every 3-6 months to keep him at baseline. She also asked about my other two children. She said it often can affect a sibling. She said she had experiance with PANDAS from her training at Baylor.

She wants an MRI of Spencer to rule out any other causes and then will help us treat this. In the meantime she wants him on azith for 30 days to see if it can calm his immune system. I also have another neurologist here (Jean Corbier, MD) who believes in PANDAS and is willing to treat. He is hiring two new neurologist this summer so he can focus on autism and PANDAS. He said after July he will be much easier to get into see. YEAH!!!!!

Sorry to hear about your other son- but at least you know what to do and are taking action!

Sounds like you are getting a great little network of Doctors in NC! I have a sorority sister in Sparta (we went to UNC)- who is a Dr and I found out this week she has had a couple of patients with PANDAS. Because of my Facebook postings for the PEPSI voting she is going to look into and see if there are a couple of her patients that might be consideration for it. She did not know about the Cunningham test before this past week and wants me to keep her updated. She says she needs to learn more- who 2 cases were mild- but she is willing to look into it more! I spoke to her today that we need every doctor willing to help!

Brandy

[matis_mom]

Sorry to hear you have another one! At least you are catching it early and know how to work the ropes now!

Do you have any idea where your younger son's infection is coming from? I mean, with does titers, he must have something going.

We are waiting for bloodwork for our non-PANDAS (?) dd10, who has been a little basket case since the last round of strep...

[mom md]

I do not think it is an infection increasing his titers but an autoimmune response. He had pneumonia last fall and was on high dose IV antibiotics and oral antibiotics for weeks. I think...now this is just my opinion...that his T cells are making the antobodies anytime his immune system is challenged in any way. We see our immunologist June 16th so we will see what she says. When we fight this as an infection we tend to chase numbers and antibiotics. When we treat this as an autoimmune infection we tend to make great progress. After my son took azithromycin for 4-5 days his chorea reduced dramactically. We will see in a few days what it does to Spencer's moods/rages. I will keep you posted. He swallowed a pill today though so I am very proud of him! (We did it using ice cream.)

 

Sorry to hear you have another one! At least you are catching it early and know how to work the ropes now!

Do you have any idea where your younger son's infection is coming from? I mean, with does titers, he must have something going.

We are waiting for bloodwork for our non-PANDAS (?) dd10, who has been a little basket case since the last round of strep...

[bmom]

Is shirt chewing a tic? My daughter chews on sleeves and necks but not all the time. I am hoping she is not PANDAS. I do remember my son used to come home with his neck completely drenched from chewing. My daughter has not shown any other signs. My son by the age of 5 had some transient tics and other things that I look back on now. I have had her titers ran. She was 14 ASO and 170 Dnase. My son has not had high titers. His are always low. Daughters immune system is much stronger!

[EAMom]

Is shirt chewing a tic? My daughter chews on sleeves and necks but not all the time. I am hoping she is not PANDAS. I do remember my son used to come home with his neck completely drenched from chewing. My daughter has not shown any other signs. My son by the age of 5 had some transient tics and other things that I look back on now. I have had her titers ran. She was 14 ASO and 170 Dnase. My son has not had high titers. His are always low. Daughters immune system is much stronger!

 

I always thought of shirt chewing as a sensory thing (which could be tied to PANDAS, but not necessarily), or maybe some kind of a regression (also would be PANDAS)...I know a couple of non-PANDAS kids who are shirt chewers. Both were long term thumb suckers (up through kindergarten)...and the shirt chewing started after they gave up the thumb.

 

My PANDAS dd has had exacerbations where she's wanted to suck on things more (ice etc.).

[Stephanie2]

Just wanted to say that I am glad that I am not the only one who went into denial when the neuro suggested that my, then, 15 month old may have pandas. I had my hands so full with my 5 yo pandas son I couldn't even fathom it. I let it slide which I think may have been a big mistake, but you live and learn. Now my little one is pretty full-blown when not on tx dose abx (which causes all sorts of eczema, yeast and secondary bacterial infections, even with tons of probios and antifungals...sigh). Starting to line up the paperwork for insurance...

 

Stinks to go through it again, but at least we know the ropes, right? Best of luck!

Stephanie

As many know, my son Carter (9) was diagnosed last year with PANDAS. We have been down the complete road...antibiotics, steroids, PEX, and IVIG. WE are now 95% but will not stop until we are at 100%. Unfortunately my younger son Spencer (6) has started showing signs. He began with transient tics (shirt chewing) at age 5 after a skin strep infection, and now has ADHD type behavior, impulse issues, oppositional defiant behavior, cognitive inflexibility, and sleep issues. I checked his ASO (384) and his antiDNase B (960). The child has not had a known strep infection since last spring. I was in denial for a while. Too exhausted to accept it but now I am ready to deal. I took him to the pediatrician (Margaret Siegel, MD) yesterday. She is my new pediatrician and I am already thrilled. I told her I know these things seem minor, but I know where I am headed. She called the neurologist (Tessita Nelson,MD who books out till December) and has agreed to see us later this summer. This neurologist has seen my other son. At Carter's visit she said she was fascinated with all this. She views it as an autoimmune basal ganglion syndrome that was probably started by a strep infection. She did say she was concerned that this could be more "chronic" than I had orgionally thought and he might need IVIG every 3-6 months to keep him at baseline. She also asked about my other two children. She said it often can affect a sibling. She said she had experiance with PANDAS from her training at Baylor.

She wants an MRI of Spencer to rule out any other causes and then will help us treat this. In the meantime she wants him on azith for 30 days to see if it can calm his immune system. I also have another neurologist here (Jean Corbier, MD) who believes in PANDAS and is willing to treat. He is hiring two new neurologist this summer so he can focus on autism and PANDAS. He said after July he will be much easier to get into see. YEAH!!!!!

[FallingApart]

mommd-interesting designation: treating this as an autoimmune vs treating as an infection. I agree with you. But what is the course of action and how is it different for autoimmune vs infection?

[mom md]

I think shirt chewing can be considered a tic. Once again though, I am not a neurologist. I think of this now as a more PITANDS picture...the symptoms resurface when the immune system gets revved up. I am now trying to protect him from any virus, not just strep. I just know that antibiotics alone are not enough. I am now focusing on Vit D supplementation, glutathione, hand-washing, sleep, diet, etc to improve his immune system. We meet back with our immunologist in two weeks and we will see what else she has to add.