MamaOnAMission

ok, my girl is on her antibiotics and prozac for the debilitating ocd. she is a bit better but is still stuck in her own world. i am starting to think she is on the spectrum.once in awhile she has a friend,but its more like the friend is an obsession. if she has no friends, it does not phase her. she will sit front of the tv o rputer and just get stuck. if u take it away, she is confused ad agitated and wants to bolt out of the house 24/7. you can't be with her unless u want to die of heart attack. anyway i was wondering about the link between autism and lyme and if anyone has looked into it?? any info. is appreciated. thanks!

Im having a really hard time communication with our LLMD. He is tops in the lyme feild, I am a bit frustrated. Super nice person though. I need to move on, but I spent a small fortune with this person. He thought her severe symptoms were bartonella, but she was not getting better on the bactrim and mino. At the first meeting he said that is wasn't PANDAS. Now, he wonders if it IS PANDAS. The bactim and mino, helped a bit with SEVERE sleep issues (a little), but mades her mean and it never lets up. We had to get some kind of relief for OCD. It was super super bad. She is on prozac along with bactrim and mino. Not sure if Abx. are hleping at all but I don't want to take her off just yet, in case this really is bartonella causing all of those wierd psychiatric symptoms. It's just crazy. This beautiful child can't eat, dress or play, because of this stupid sickness. She looks so normal on the outside, but her brain is one big mess.

When she is on the bactrim and minocycline for bartonella, she is so much more locked in her own little world. Just stuck on one TV show all day long. The one thing she's able to do is shower and brush her teeth though. When i back down on these antibiotics...she is not able to get herself dressed or brush teeth. She said when she tries....her brain just turns off (her words.) This turning off of the brain happens with any kind of school work too. Anyway....she is on prozac, and it helps with severe OCD, but she is not able to brush her teeth or shower, until I up the antibiotics. I think she has two things going on here. I think the OCD looks a bit better on the prozac, but she needs something else to help with the confusion and not being able to shower, brush teeth or do any kind of learning. I know this is a very scrambled letter. Just tired. Please give me any advice you can give. She is also very mean on Abx. and it never gets better. She is on them for 5 month now.

When she is on the bactrim and minocycline for bartonella, she is so much more locked in her own little world. Just stuck on one TV show all day long. The one thing she's able to do is shower and brush her teeth though. When i back down on these antibiotics...she is not able to get herself dressed or brush teeth. She said when she tries....her brain just turns off (her words.) This turning off of the brain happens with any kind of school work too. Anyway....she is on prozac, and it helps with severe OCD, but she is not able to brush her teeth or shower, until I up the antibiotics. I think she has two things going on here. I think the OCD looks a bit better on the prozac, but she needs something else to help with the confusion and not being able to shower, brush teeth or do any kind of learning. I know this is a very scrambled letter. Just tired. Please give me any advice you can give. She is also very mean on Abx. and it never gets better. She is on them for 5 month now.

Not sure what is constipating her, but does a probiotic usually help with this?

does anyone attend a support group? just to learn from other families with similiar situations? wondering if you know of any in north jersey?

everytime we start or increase an abx. my child gets flu-like symptoms. i thought it was conincidence, but it happened for the 5th time. any idea why this happens, or has it happened with anyone elses child???

Thanks. How much melatonin do you give?

...I forgot to add that she just got her period too.

RN MOM. Thanks so much. We started with the PANDAS, because of her Cam kinase score of 166. We tried the bialxin, azith and rafampkin. Dr. B. who was treating her for PANDAS, sent us to a lyme specialist when he discovered she had bartonella and lyme. I think he was perplexed by her weird symptoms. He thought it sounded more like bartonella was her problem. Anyway, how do you know for sure a child has PANDAS? I am going in circles. I am treating her for the bartonella and lyme, since there is a blood test that said she was positive. There was no blood test saying she was positive for PANDAS. She is such a mess right now. We started with the prozac and she looked pretty good, then added the trazadone and she is wild, and her OCD is horrible. I am not sure if its the trazadone or the prozac at too high a dose. But at a lower dose, it does nothing for her OCD. Ugh!!! It is crazy. What doctor do you go to that deals with your child'S PANDAS AND LYME AT THE SAME TIME. I am going to supposedly the best lyme doctor in the country and he seems to be totally lost with my child and her symptoms. Sorry if this letter seems scattered. It's just how life is over here at the moment.

Does the prozac seem to be activation and keep him up at night?

my 12 y.o. is being treated for bartonella. we have her on bactrim and mino. we did not see much improvement. actually she looked a bit worse during the day on the stuff. the psychiatrist put her on prozac, that seemed to be helping but now her OCD is spiraling out of control. we added trazadone in for sleep. has anyone had any experience with this making their child's OCD worse? thanks so much.

No tired mama...she does not sleep. Even with 50mg tranzadone. Her OCD is just too strong. Calling psychiatrist tomorrow.

Thanks for the helpful reply!

I am not possitive that her OCD is due to Lyme/PANDAS. I put my feelers out and ask questions on many boards, in hopes I can get some relief from this severe anxieity/OCD that she suffers from, and that medications, thus far have not helped. We are desperate and see no harm in the questions we are asking. Please let us know if you see things differently. Perhaps we are missing something. :0)

Can you please tell me how many mg. your giving your child? and their weight. Thanks for you help? I meant mg. of trazadone, which was in the title part of this message. Sorry for confusion.

Thanks so much. It's the only thing that has worked for her after trying so many things!

Can u tell me how much Prozac u give ur child and what age they are. Just wondering what works for most. Thanks for any info.

My child tests positive for bartonella/Lyme and to be honest... I can't get an answe out of LLMD as to wether we are treating the Lyme. She's on o clime & Bactrian. On one visit he said this combination will target Bart. And Lyme , then on next visit he said this combination does not treat Lyme. Can't get straight answers from him.

I am still a bit confused. Her first test said she was "positive" for bartonella, and I hear that there is not question, when it comes back positive. She is DEFINITELY positive for bartonella. Well if it comes back negative, is the child POSSITIVEo7 negative, or can it be false negative? Her symptoms are so weird. Not just OCD, but very odd psychotic thoughts, hallucinations, etc. There has to be something more than OCD, but now I don't even have a bartonella diagnosis. Not sure what our doctor will do, I still have to talk to him. He is an LLMD and tops in his field. I am hoping Monday, that he has some direction for us.

she was on antibiotic for bartonella/lyme for approximately 6 monts. not the full dose, because she was too aggressive and mean. dr. j. retested for bartonella and said she tests negative right now. seems odd to me, since she is/was so so mentally ill, and she was not on antibiotics for long, and not on full dose. i am really wondering about these tests. i also did not see much improvement with antibiotics with her symptoms. i am really looking for some feed back. i thought the bartonella tests were pretty accurate. i hear there on "no" false positives. any thoughts are REALLY appreciated!!!!

I wish, but ain't happening here! Anxiety, OCD, hallucinations and aggression too big over here. Hopefully new medications will help.

Dentist recommends fluoride on my girls teeth. She has white spots all over and he thinks it's from not brushing, which she never does, but I'm sure it's from antibiotics. My question is...do u feel fluoride is too risky for our kids? She never ever brushes her teeth and I'm thinking it may not be a bad idea.

Thanks so much. Actually things are much better. Tried another SRII and it's helping this very sick child! Also got s prescription for trazadone but have not needed it since she started sleeping with OCD medicine. Thank God!!!

Thanks tired mama. Does the trazadone HAVE to be given EVERY night or can it be given as needed?