New diagnosis and starting treatment... Is this normal?

[Mollyfox]

My Daughter has suspected PANDAS. She also has autism which has made it difficult to convince her primary care pediatrician that PANDAS might be the cause of her sudden out of control, extremely aggressive behavior and OCD. In Jan 2014 she had a positive strep test. She barely slept the month of February and by April she was sleeping better but became so aggressive the the pediatrician put my previously sweet 4.5 year old DD on risperdal. It work for 1 month but it all came back and then some. By January of this year she had out of control OCD asking the same question hundreds of times a day and wanting me to repeat things back to her until it sounded just right. She became very violent attacking me during rage episodes. She would let me leave her side even to go to the bathroom or she would rage. The Ped kept telling us it was all related to autism. However, we went from being able to go places to being confined to the house. This was a dramatic change in personality. We just saw Dr Baig about 6 days ago so DD has about 5.5 days of treatment down. He prescribed augmenten and prednisone. We had 4 days straight of screaming and intense anxiety but she is actually sleeping through the night! Today she was very quiet and calm and took a nap which is very unusual and all afternoon she has been very quiet and subdued. Has anyone expierenced their kids getting very agitated or very sleepy when beginning treatment? I'm just not sure what to expect. TIA!

[pr40]

you need more time to figure out what her state is. it seems obvious that prednisone and augm are having an effect. for us, it took about three months to figure out that we have cycles that repeat. calm, agitated was the usual than the difference btw calm and agitated states got smaller and smaller. now, it sometimes disappers for weeks, months when we are lucky. then comes back for a week or so.

great that you were able to see a dr willing to treat pandas.

good luck.

[4Nikki]

If the doc is not willing to look at the symptoms, the "relation to Autism" is a typical traditional Physician answer, when they have no clue about what is happening. It doesn't really matter what they want to call it, its a dismissal of the symptoms and basically says there is nothing "you" can do. I'm not a doctor but sounds like it could be a Pandas/Pans reaction to me and that Antibiotics seemed to be working. A Dans/Pandas doctor, if you can find one, will be more open minded toward investigating the symptoms. You shouldn't have to convince any doctor of symptoms mean something, they should be able to look at the symptoms, and then do some analysis before they give you an opinion.

[WorriedDADNMOM]

Depending on location, i know a very good DAN/Pandas doc in Ohio that I recommend. He can be found on the pandas resource website.

 

http://pandasnetwork.org/researchandresources/find-help/usproviders/

[Mollyfox]

Our primary care pediatrician is the one we were not happy with and have since left. So far we are very happy with dr B. Update: DD OCD symptoms have greatly reduced but we are still dealing with some heavy duty anxiety. (Almost 2 weeks into treatment). Oppositional Defiant has reduced as well. She will still get frustrated and scratch or bite but is more easily redirected and it doesn't go into a rage.