2 PANS kids fighting lyme and coinfections, our journey to healing

If I knew then what I know now!

What would I have done then if I knew what I know now?

Firstly I would have followed the advice of the Developmental Pediatrician regarding the genetic testing, not sure how that got side-tracked but I do know that for a long time it was really difficult to draw blood from him. I think that scared me off.

Then I would have gotten a referral to a Pediatric Neurologist and I would have ensured there were no structural issues in his brain.

Occupational Therapy and Speech therapy. His gains have been immeasurable from those two therapies.

I am glad we kept him GF/CF and I am glad the whole family enjoys the Feingold lifestyle.

I would have found a family counselor or at least a therapist who was interested in working with us together to build bonds and to monitor his and the families progress on a stress/emotional level.

I would and still do utilize the experience of our Homeopath.

I would have still tried neurofeedback.

Lastly I would have made sure I either stayed with a good D.A.N. doctor OR I would have looked for a better pediatrician. Your child’s doctor should make referrals to the right specialists until you have some answers.

I ended up ‘winging’ it much of the time. We should have been referred to an Allergy specialist when it was evident he was having serious issues with allergies. Instead he ended up hospitalized while we were on vacation at age 5.5, and the doctors at the time looking at me like I was crazy. They felt it was obvious that he had asthma and they were really astonished we had had no education on how to manage that. He was been hospitalized for asthma and pneumonia at the time, but this was his 3rd round of pneumonia and his history included multiple treatments for bronchitis. I was actually grateful that we were in a strange town when he got sick, otherwise I would have done my usual ER run at 2 am to get him an additional breathing treatment (over and above what his nebulizer did, there were many times even when we were giving him Budesonide (Pulmicort) and Xopenex he would have breathing difficulties without fever). I didn’t know what else to do differently, I do now though, and we manage his asthma so much better. He very rarely has to have asthma treatments anymore, and there are multiple ideas as to why.

I also think we should have been urged to go for both a neurological and a developmental evaluation, both referrals I feel should have been something our child’s doctor should have championed. If that had all been ‘typical’ then we could have started looking ‘outside the box’ for answers.

Hindsight being what it is, and the reason I decided to start this site is that:  I personally wouldn’t have worried about most of the other modalities we tried.

© Loving the Spectrum