Pands /Lyme patient and mom

[hzmom]

My 7 yr old and I have both been diagnosed with lyme and pandas

I am surrounded by sceptics including my husband. help?

[peglem]

My 7 yr old and I have both been diagnosed with lyme and pandas

I am surrounded by sceptics including my husband. help?

 

You might want to look at some of the info on the Helpful Threads thread, pinned to the top of the forum. There is a lot of info there, and Buster especially has his info backed up with references and links to the science literature behind PANDAS. I don't know enough about Lyme to help out there!

[LNN]

There are three web sites you can show your husband re: Pandas:

www.webpediatrics.com

www.pandasnetwork.org

www.pandasresourcenetwork.org

 

All three contain helpful information explaining the disease. The webpediatrics site is the site of one of the doctors who aggressively treats Pandas and has case studies that illustrate how the disease effects kids.

 

On the lyme forum, there's a section at the top for "helpful threads" similar to the one on this forum that Peglem mentions, tho it's not as robust.

 

These are both hard diseases to get your head around. Give people time to process. The best thing you can do is proceed with treatment. Often, the proof is in the pudding and people find it easier to believe you if they see a positive response to treatments.

[lyme_mom]

I agree. Perhaps your husband could go with you and meet the doctor. That could help. My husband didnt doubt the diagnosis (my sons case was very clear cut-diagnosed in emergency room and had very positive elisa and western blots). However, accepting a lyme diagnosis and agreeing to long term antibiotic treatment for lyme are two differnt things. So i asked him to come with me to conn to meet dr jones because I knew treatment would be a long haul and wanted him to meet the doctor who would be prescribing treatment and be "on board" with his instructions. We needed to b united in order to sell our son on what he needed to do so I figured he should meet the guru too. He is not easily impressed and he loved dr j. He told our son that dr j was an old fashioned doctor, a rarity today, who spends lots of time with the patient. He also has great respect for our local llmd. This is Important because when your child complains about taking meds or is having bad herxes u need to b united about what needs to b done or else ur child might not want to take the medsAteLier r smart and canonic up on these things. He didn't go with me on subsequent trips to conn because it wasn't necessary-just the first trip. There r ups and downs w treatment so having a doctor you respect and trust is very important. It was very helpful to have two llmds who agreed on the treatment. I certainly had other family members who doubted The long lyme Treatment so i how how hard that is. I certainly got advice from people who had no idea what they were talking about or had heard that antibiotics are overprescrined for Lyme. It is easy to believe this misinformation if your child doesn't have bells palsy or some other horrible condition that is being treated by the drugs. I did my research and did not want him treated by a doctor who was mot a member of ilads. He could watch under our skin that would help. It's pretty intense and professionally done and would not take a long time. My favorite Lyme book is cure unknown by pamela weintraub. This book thoroughly explains the controversy over Lyme disease and the insidious ways it can manifest itself in patients and in whole families. It is very convincing because weintraub is an investigative reporter.Good luck.