Questions (Bits and Pieces)

[cobbiemommy]

1) What is Dr. B's position on tonsilectomy? Please PM this answer to me.

 

2) My son has horrible allergies, takes shots, meds, etc. His voice sounds kind of funny. Been this way for quite a while, but I just put it together tonight that it could be from the nasal discharge. It is kind of wet sounding, and the tone is sort of flat. Has anyone else noticed this? My allergies used to be horrible, but I can't remember if I sounded that bad.

 

3) How many of you have multiple kids with PANS? My son was first, now my 15 year old daughter has Bartonella that won't go away. Some memory issues and energy level changes that go along with that.

 

He and we are doing better the last two days!

 

Cobbie

[mar]

My son also has tons of allergies. I think if he is congested it could change the sound of his voice. I am wondering if his allergy shots are helping? I gave always wondered about going that route? My son has bad environmental allergies that were helped by watching what he eats. he has not been on any allergy meds in two years as long as he watches his diet he is not congested.

Mar

[airial95]

I can't answer 1 or 2 for you, but as to 3, I have 2 kids - both have PANDAS.

 

My son was a severe, sudden onset at 19/20 months old, with dx at 26 months. My daughter, more subtle onset (so we thought - turns out her OCD is more obsessive throughts with no outward compulsions) at around 4 1/2, with dx at 5.

 

I think it was Dr. M in one of her papers that made the connection of high incidence in siblings - particularly in families with a history of strep, rheumatic fever, or autoimmune disease. I think the correlation was even stronger if the history was through the mother.

 

I don't remember much else - I'm not one of the scientific types on here that follows the papers (sorry ) but I do remember the bit about the mother particularly because I had a history of chronic strep as a child (looking back - likely PANDAS), and have a autoimmune inflmatory condition (similar to arthritis, but not quite) that is genetic. That part of the study resonated with me because it jacked up my Mommy guilt - I'm the reason the kids are sick!!

[Dedee]

I have three kids. All have PANS. Oldest is triggered by strep only. The younger two will trigger with any infection but started with chronic myco p.

 

Dedee

[ptcgirl]

1. Good question. i would like to know his feelings about that too. It was personally very helpful for my dd.

 

2. DD allergies are SUPER bad. Allergic to just about everything except most foods (dust, dogs, cats, trees, grass, etc). Sinus infections definetly cause flares and we have difficulty getting them under control in the spring particularly. DD hasn't had a well spring for the last 5 years. Tried shots but just got tired of doing them every week. Will probably go back to them. Dr. B wants her to do these consistently. Meds (singulair, veramyst and mucinex) help.

 

3. Thank God only one DD has it. My other DD doesn't. I'm more thankful for this than just about anything else in our life. I worry that it may come happen to her too but she is 11 now and I feel like we are a little bit out of the woods.

[bulldog24]

I have 2 kids with PANDAS,

 

voice change CAN be a sign of LYME. It affects the nerves sometimes. it happened to me. One of my fist sx was hoarse voice.

 

My daughter is a mild PANDAS kid with allergies. Singulair really helped. She had her tonsils out and she still got strep 6 weeks later