Feel like I lost him for the 2nd time

[EAMom]

(and maybe what was diagnosed as autism was really pandas?).

 

I was thinking the same thing.

[EAMom]

edit double post

Edited September 19, 2011 by EAMom

[EAMom]

I would recommend getting throat cultures on everyone in the familiy to make sure nobody is carrying strep.

 

re neg throat cultures:

could be a bad swab (uncooperative child), strep in a non-throat location (sinuses, skin), or a non-strep illness that has triggered this exacerbation.

 

Many PANDAS kids react to non-strep illnesses as well as strep. Once the wheels of PANDAS are set in motion, it doesn't take much to trigger an exacerbation. My PANDAS dd has reacted (even while on antibiotics herself) to family members with strep (sister has been an assymptomatic carrier), Pandas dd getting sick with viruses (fifth's, H1N1, anything which produces a fever), and most recently is currently reacting to her *sister* being sick (with a virus)

 

Azithromycin has been our antibiotic of choice. My dd takes 250mg/day (has since she was 7 and 45 pounds, now is 11). Azith. also "gets" mycoplasma, another trigger and is immune modulating. Some of the east coast docs prefer not to use it however, since there are some strains of strep in the East that are resistant to Azith.

Edited September 19, 2011 by EAMom

[MomtoJake]

Thank you everyone for your insights-@ airial95- when my son was very young right after his regression he seemed worse on ABX-- in the last couple of years I have noticed that he is completely normal on ABX. My son still has some quirks other wise, but he is pretty typical. Now I am noticing increased autism-like symptoms that had diminished before-- more toe walking, difficulties with narrative language. He told me yesterday that he just "couldn't say the words". He also had his first tic and is still doing it today but only occasionally. He is turning one side of his mouth down and doing strange gyrations. It seems that new things are popping up everyday, but sometimes he only does that particular "thing" once. For example, this AM he refused to touch anything in the bathroom with his palms and fingers. He bent his hands so that he could turn off the water without using those parts of his hands and then used my hand to turn off the light. But tonight it is ok to use his hands normally in that same bathroom. Anybody have a similar experience??

 

On the upside, my ped is giving him Augmentin- don't know how much or for how long- she has not called it in yet, but its a start. Labs are not back yet. Hopefully we will have abx in the AM. I also mentioned the article that someone posted here earlier from the IOCDF and she wanted me to fax it to her so I did. Also, I have an appointment with Dr. Murphy in November. Quite a wait, but I also asked to be put on the list to call if there is a cancellation.

 

It has been a rough week and a half. My stomach has been in knots, I can't sleep and I have a low grade headache that won't go away. Somehow though tonight I feel better having accomplished a couple of things today. Thanks for being there guys!!! It helps to have you all to talk to!!

[MomtoJake]

I would recommend getting throat cultures on everyone in the familiy to make sure nobody is carrying strep.

 

re neg throat cultures:

could be a bad swab (uncooperative child), strep in a non-throat location (sinuses, skin), or a non-strep illness that has triggered this exacerbation.

 

Thank you EAMom- and I agree. I had strep this summer and DH has 5ths. And I know that the current swab DS had was bad. He resisted and was gagging even before it came near him. The nurse barely got it to his cheek.