worse after ivig

[Priscilla]

Hi, EAMOM, I am in Southern Ca. My husband and I are not + for strep. I feel like this is a PITAND situation because the only known strep she had was when she was not quite 1 year old. Since that strep infection, she has had mild waxing and waning symptoms (started around 18mos) of OCD, TICS, defiance. In retrospect, alot of our beviour, OCD problems happened after any kind of illness (usually respiratory, that is why I lean towards mycoplasma, she also had croup and asthma as a baby). The latest illness that I believed caused the severe episode (in which we knew something was REALLY wrong) was H1N1, this past Dec. Although her titers for ASO were elevated in April with no symptoms of strep. I am wondering if the initial strep assuault causes these misguided antibodies (ASO) to release even when there is not a specific strep infection, but another virus, infection....

 

To the other mom, It was actually influenza at 3yrs old that caused her tonsils to swell and never go down (strep neg at that time, influenza +) There may have been something hiding in there but we actually removed them because of severe obstructive sleep apnea.

[EAMom]

Hi, EAMOM, I am in Southern Ca. My husband and I are not + for strep. I feel like this is a PITAND situation because the only known strep she had was when she was not quite 1 year old. Since that strep infection, she has had mild waxing and waning symptoms (started around 18mos) of OCD, TICS, defiance. In retrospect, alot of our beviour, OCD problems happened after any kind of illness (usually respiratory, that is why I lean towards mycoplasma, she also had croup and asthma as a baby). The latest illness that I believed caused the severe episode (in which we knew something was REALLY wrong) was H1N1, this past Dec. Although her titers for ASO were elevated in April with no symptoms of strep. I am wondering if the initial strep assuault causes these misguided antibodies (ASO) to release even when there is not a specific strep infection, but another virus, infection....

 

To the other mom, It was actually influenza at 3yrs old that caused her tonsils to swell and never go down (strep neg at that time, influenza +) There may have been something hiding in there but we actually removed them because of severe obstructive sleep apnea.

 

Yup, it probably is Pitand by now.

 

Have you and your husband had strep titers done? Worried dad (and his family) always cultured neg. But when he had titers done they were high. So, that is something to consider. WD thinks he might be a source of strep since he's had a chronic sinus issue which he now wonders if it is strep.

[kmom]

I still would have done the T & A for sure but would have changed one very important thing. It pains me to type it b/c now Dr. E from CHOP, Dr. T and Dr. B have all told me my DD should have been on prophylactic abx before and after surgery. If I knew what I know now, I would have demanded it or gotten another ENT. DD had been on abx from Jan '10 thru end of March...actually just a few days b/f surgery. She didn't show any throat infection symptoms w/in those few days. I asked Dr. @ pre-op appt about abx and he said he didn't do that. The whole reason I wanted tonsils out was b/c I was tired of putting her on abx's (no PANDAS symptoms up till surgery) so I had no clue that it should be done. I was happy to have her finally off abx...how ironic! I trusted the ENT. I know better now and I tell every person I encounter having T & A to get prophylactic abx pre/post op. Just had first appt with Dr. B and he too said, "She should have been on abx before and after surgery." It always burns my ears but as the specialist have also said, we can't guarantee PANDAS wouldn't be present today, but one or two described it as a "strep explosion". You live and you learn. So yes to T & A b/c I have learned that tonsils are good at helping to fight infections until they are diseased. After that they aren't helping. In my DD's case and for myself years ago, chronically infected tonsils do way more harm than good. I remember getting mine out senior year of HS and my ENT said they are like a very porous sponge. Once bacteria gets imbedded in there, it's hard to clear the infection. For me it was a fantastic fix. I had hoped the same for DD but 4 wks. post surgery the PANDAS symptoms popped up overnight and our life has been very different ever since. But without surgery, would we have ever cleared the infection??? Doubt it. She's immuno deficient for strep antibody production.