10 YO DD worse on Antibiotics and steroids--is this permanent?

[rainingrebecca]

We are waiting for all sorts of tests to completely diagnose my daughter.  In the meantime, the doctor gave her Azithromyicin and Prednisone.  Her OCD, anorexia, aggression, depression etc0 worsened along with the other symptoms she has.  

She is being tested for Lyme and right now, I think that is a possibility as I was infected while I was pregnant with her.  However, we have had a lot of tests since she was born and she has always tested negative, I am not sure why this would be causing a problem 10 years later.  She has also had two really bad cases of strep in the past three years, so I am hoping that this is PANDAS not Lyme and Pandas.  She also has Hashimoto's and it appears some kind of auto immune disorder.  

It has been 1.5 weeks since we stopped the steroids, does anyone have any experience with their child worsening on the steroids and abx and then getting better once they flush it out of their system?  If so, how long did it take?  Or, was this permanent for your child?  

Any experience and feedback is really helpful at this point because we are just waiting and I really need a glimmer of hope or a dose of reality. 

 

Thanks

 

 

Edited January 30, 2019 by rainingrebecca

[sf_mom]

We have 3 children with gestational lyme.  Our oldest son presented with PANDAS like symptoms after MMR booster, virus and strep related illness at 5 years old.  He is now 14 years old, living a very full life, away at boarding school with no OCD or PANDAS symptoms.  

He too was worse after a steroid burst and often when starting a new antibiotic protocol.  The die off of infection can cause a Herxheimer reaction causing a temporary increase in symptoms including psychiatric.  Worse before better was a constant in our household over the years.  BUT, the temporary increase in symptoms did eventually resolve once the die-off toxins cleared.

For our family, treating the Lyme et al resolved PANDAS systems.  Kids with Gestational Lyme often do not make antibodies to Lyme because their body does not recognize the infection as foreign.  Most Lyme tests are looking for antibodies.  If you feel Lyme is an issue I would see an LLMD that can provide the Dot Blot Test via Igenex which looks for the antigen in their urine verses antibodies.  

Only one of children tested positive for Lyme via traditional antibody testing.  He just had the strongest immune response.  The other two children do not make antibodies to Lyme and also were extremely immune compromised.  They both tested positive via the Dot Blot.

Do you have Lyme symptoms?

Please look at Dot Blot Testing. 

https://igenex.com/disease/borrelia/

 

 

 

[rainingrebecca]

I got Lyme either late first trimester or second trimester of my pregnancy.  I figured out I had Lyme when she was 3 months old.  I was extremely lucky to have figured it out so early.  I was on Doxycyclin for almost a year.  After 6 months on the antibiotics and almost feeling normal again, I started doing heat therapy and echinacea.  Whether or not that helped me fully recover, I will never know, but I personally do think that is what finally kicked it out of my system.

She has Hashimoto's and I believe a broader auto immune disorder.  I had a thought in the middle of the night that maybe this caused permanent brain damage.  I was hoping someone could tell me if the steroid burst caused a similar problem in their children and if it did, how long it lasted.  I did see a tiny glimmer of my old daughter this morning on our way to school, so I am hopeful she will revert back to her quasi normal self after she gets the steroids and antibiotics out of her system.  Then we can hope for a remission after we do a true treatment, possible IVIG.  

After the steroids, how long did it take for them to get better?

 

Thanks for responding so quickly, this is really scary and I am kind of out of my head with worry.  

BTW, we are waiting for the IGX Lyme tests to come back, which hopefully will be back in the next 2-3 weeks.

Edited January 30, 2019 by rainingrebecca