The OTHER PANDAS child

[Dedee]

So my middle son has had PANDAS / PITAND symptoms for several years. The symptoms have never been really bad or seemed to alter his life in a major way. But we have always known what it was and that it was there. With the older son being so bad in his younger years and then the younger one coming in with it just as bad or worse, we have really sort of had a "wait and see" attitude with the middle one. In fact, since he is my least symptomatic, he tends to get ignored sometimes. However, when we tested the entire family for Myco P after my daughter came up positive, he came back very positive also. So we took him to a doctor that we have recently found who is knowledgable in PANDAS /PITANDS / Lyme. He has started treating the Myco P. and also did some testing. When they ran the immune pannel it came back immune dificient. He had low IgG and low subclass three levels. He has always been a sickly child. Has asthma and allergies. Usually gets the flu every year even if he gets the flu shot. The doctor says that made sense because his immune system probably cant mount an immune response to the vaccine. He also did a Igenex Lyme test and the results were as follows:

IgG:

30 +

39 Ind

41 +++

 

IgM:

31 Ind

41 Ind

 

He has been on Zith for the Myco P. for about 6 weeks and he says he feels better and doesn't have as many scary thoughts. Although he still sleeps on the floor next to my bed and seems a bit irritable to me. His asthma and allergies are horrible. He is very small for his age, about a head shorter than most of his friends and very skinny. However, he is a very sweet boy who seems happy most of the time, but just catches most any illness that comes around.

 

So I am trying to decide how aggressive I should be with this child? Don't want to ignore him because he is the quiet one, but I don't want to over react either. It has gone on for a while, with some lingering issues, although not devestating. He has some OCD rituals, mostly at night. Night time anxiety. Absolute over achiever in school.....has never made anything but A's on his report cards. Carries it too far though..expects only perfection. Anything scary will make him have OCD thoughts about it for weeks. He recognizes it, and deals with it well, but still, it's there.

 

Uggg.....Sometimes I feel like I am a paranoid mother and I know my friends probably think I am too. The Doctor said he didn't think it was Lyme and mentioned IVIG for the PITANDS, but in the end we we decided on supplements with continuing antibiotics for another month. So, for any of you that have been down the Lyme road, can you look at the above results and tell me your thoughts please. I really don't want to make this Lyme if it isn't, but I don't want to ignore it either. Should I be considering IVIG for him? Help! Don't know if I can deal with this and dd both.

 

Dedee

[HT's Mom]

I don't think you are being paranoid. I haven't followed your story exactly, so I'm not sure what your other kids are experiencing, but they must have worse symptoms than this middle child, right? But it seems to me that if you didn't have the other two to compare to, making him seem mild, everything you've described about this child would have you treating him. I can't speak to the Lyme results, but all the OCD thoughts, anxieties, and behaviors and the other immune system issues seem to be significant enough to require treatment. If it's not Lyme, and you know he has PANDAS/Pitand, IVIG seems like your next step. Did your other kids have that treatment? How old are they and your middle one?

[Dedee]

Well my daughter is 7 and just finished her second IVIG which we had to pay out of pocket because she didn't show immune dificiency. She is big time OCD with anxiety and rages. My oldest son is 15 and is better now but was diagnosed when he was 6, had a rough few years and then stabilized around 11. Still has some issues though. My middle son is 12, and as I said is sort of coasts along. Most certainly has PITANDS with immune deficiency but neurologically not nearly as bad as my daughter who seems to take up all of our time right now. He has always been our easiest child. Even his body makes it easy enough to diagnose by providing the appropriate labs so insurance won't argue and deny like they did with my daughter. :-) I'm not sure how much of IVIG insurance would pay based on the immune deficiency diagnosis and we are certainly wiped out after paying out for two IVIG's for dd. But I would hate to make any medical decisions based on lack of finances. So, I am still torn. He goes back to the doctor in November. Think I will talk to him more about it then. Thanks.

 

Dedee

[HT's Mom]

Well my daughter is 7 and just finished her second IVIG which we had to pay out of pocket because she didn't show immune dificiency. She is big time OCD with anxiety and rages. My oldest son is 15 and is better now but was diagnosed when he was 6, had a rough few years and then stabilized around 11. Still has some issues though. My middle son is 12, and as I said is sort of coasts along. Most certainly has PITANDS with immune deficiency but neurologically not nearly as bad as my daughter who seems to take up all of our time right now. He has always been our easiest child. Even his body makes it easy enough to diagnose by providing the appropriate labs so insurance won't argue and deny like they did with my daughter. :-) I'm not sure how much of IVIG insurance would pay based on the immune deficiency diagnosis and we are certainly wiped out after paying out for two IVIG's for dd. But I would hate to make any medical decisions based on lack of finances. So, I am still torn. He goes back to the doctor in November. Think I will talk to him more about it then. Thanks.

 

Dedee

[HT's Mom]

I'm going to pm you.