New member from Cols, OH

[MAJ]

I write this with tears I'm sure you can all understand. I need some advise. Here's the shortest version of the story I can give. Last August my healthly six year old girl started having difficulty falling asleep and horrific looking skin rashes all over her body. She was treated with steriod creams for a couple months. She also began 1st grade and seemed to be losing academic skills daily. I'm a school teacher and kept up drills all summer. This is info I knew she knew! I started her gluten-free at that time. She then woke up with oozing wounds on her outer labia. After being drilled by her pediatrician and then turned away, we brought her to Children's Hospital. They diagnosed her with yeast and secondary staph infections. After weeks went by and many, many returns to urgent care (because the staph was antibiotic resistent), her skin was better. She also began complaining of stomach pains and repeating the same sentences word for word before eating. She also feels like she has to urinate all the time. Sometimes it is diffucult to leave the house. Her eye sight also changed dramatically within the same few months. So by January, my health girl who had only been on antibiotics once in her life, was now seeing a dermatologist, urologist, counselor and GI. In January, we began a new pediatrician who asked if she had a strep infection resently. She had just that previous May. She diagnosed her with PANDAS. She tested her anti-DnaseB, which I believe the high range was 170. My daughter's was 470. We have done several rounds of antibiotics. I think I see improvement on the Omnicef. Once she is off, within a week we are right back at the same place. We have seen 2 ENTs who refuse to remove her tonsils since she has had only 1 positive strep test. Now, besides difficulty falling asleep, stomach pains, she leaks urine and her skin rashes are always a battle. She has very little control of her emotions. She can't start or finish a thought without saying sorry for interupting and asking for forgiveness for everything. Most the time she doesn't even know what to ask for forgiveness for. She was yelling at me from bed tonight to please tell her I forgive her 3 different times. I don't know what else to do. Especially when some doctors are telling me there is no such diagnois as PANDAS or she just has ADHD. Please share any thoughts or ideas you may have. Thank you.

 

[Chemar]

Hi and welcome

 

I would suggest you repost this on our PANDAS?PANS forum as I am sure the members there will have some input for you. Not many look in this new intro section yet.

Here is the link to the PANDAS/PANS forum http://www.latitudes.org/forums/index.php?showforum=17

[Doras_Mom]

Hi MAJ,

 

I am also in Columbus and have a wonderful pediatrician helping my daughter with PANDAS here. We were having the same issues of back to back episodes as antibiotic rounds were finished. Her Dr. then decided to test everyone in the household to identify one of us as a strep carrier....which ended up being me. Once I started to be treated the same time as my daughter we saw great improvement. If you would like the contact information for her pediatrician in our area please let me know.

 

Thanks and good luck!

[WorriedDADNMOM]

Hi all!!!! We are from Toledo. We traveled to Dr. Allen Lewis in Gahanna,OH near Columbus. I recommend him highly. Let us know if you need anything else or questions answered.