Jump to content
ACN Latitudes Forums

Recommended Posts

I would concur with what everyone is saying. I also sent you a PM from your PM to me.

 

I noticed you said pasta and rice as preferred foods. In our world what our kiddos like is most likely what is hurting them. That much starch and I would consider candida or at the very least a little bit of dysbiosis.

 

The standard of care is treating the symptoms with SSRI or therapy......etc................Most good docs with any pandas success will be more integrative and or homeopathic to treat ACTUAL bio-medical issues that are going on physiologically that are contributing to behavior, appetite, growth and muscle tone, temperament, attitude, happiness........virtually every way shape and form we improved.

 

Let me know if you need any thing else.

Link to post
Share on other sites

You had mentioned a UTI in your first post, and the positive response to amoxicillin. I wanted to point out something from the study that I linked in last post about antibiotics/GAS
.

 

Previous studies in animals have shown that introduction of specific bacteria or elimination of others can lead to behavioral and neural changes, including among others, changes in depressive- and anxiety-like behaviors and alterations in the production, release and metabolism of neurotransmitters and the expression of receptors (for review see: [50]). Interestingly, a recent study has demonstrated that introduction of the gram negative bacteria B. fragilis to a mice model of autism spectrum disorders ameliorated deficits in communicative, stereotypic, sensorimotor, and anxiety-like behaviors, including a reduction in marble burying [51]

 

 

It seems that this bacterial balance is gaining more and more attention.

Link to post
Share on other sites

I want to second what Worrieddadnmom said,

"I noticed you said pasta and rice as preferred foods. In our world what our kiddos like is most likely what is hurting them. That much starch and I would consider candida or at the very least a little bit of dysbiosis."

carbo-hydrates are also bad for bacterial balance. It seems that our kids do better on very low carb diet -- there is some research on autisiam and low carbs, you may want to take a look at it.

Link to post
Share on other sites

OK. Maybe I shouldn't say this, but I absolutely disagree with using amoxicillin for a UTI. Grrr. Augmentin would be my preference. In addition making sure that a sensitivity was done to make sure the antibiotic was the correct one, and after that a test of cure culture to make sure it is clear.

 

It seems like another possible step would be the steroid burst? Also some docs are using a steroid taper?

Link to post
Share on other sites

Your story is exactly my story!!! The good news is you will get help fast and won't be waiting for years and get wrong diagnoses that will hurt your dd! Rages (I mean the attacking and hurting others out of the blue) are usually associated with lyme I think. Get to a PANS specialist and a Lyme specialist. Can you travel to St. Louis? If so, Dr. Tracy Fritz is the whole ball of wax! One stop for food, allergy, stool, infections, lyme, etc! If you want the Michigan Doctors just ask to join the private Facebook page for pandas support. Pm me if you can't get to it. Kristen the moderator is wonderful. Dr. Williams at Childrens will do IViG but criteria is different then a "pans" specialist. I was very surprised at how much he can help us though.. these docs to keep evolving. You will get your daughter help fast! In the meantime, you can consider gluten free, casein free (Feingold diet- no food additives), probiotics, fish oil, vitamin D (need to check levels - hope your doc checked that) don't worry if strep is negative! Lots of other triggers involved in PANS! Dr. Trifeleti will get you a phone appointment quickly and will order lots of testing. That may get you started before your October appointment! Meletonin and benedryl with Advil will help w/ rage. She doesn't mean it.. She truly can't help it! Hang in there! Don't give her anti psychotics /mood stabilizers/ it will get worse. Epsom salt baths.. Tell her she will get better! Let her do what she wants if safe.. This is when you need to walk on eggshells. She needs you too! :) tell her a tiny part of her brain is swelling and causing the rages.. They are like siezures and they will go away when treated properly. You didn't waste your time at your unknowing doc.. Just keep on going. Call home when she is all better. He can help others when he learns from you! Of course I can't know for sure the cause of your Dd rages but boy it sounds like our story. Except our story happened three times right in front of our eyes for three daughters. If I can make it.. So can you! Keep praying!! Find a pans mom friend. Other moms/ relatives will not cut it right now! Go to a support meeting - even if the house is falling down!

Link to post
Share on other sites

Another update from daughterincrisis. I received a call from ID doctor the day after our appointment and he offically diagnosed her with PANDAS. Her strep blood tests were (AS0) 940 and B-Nasal ( can't remember what second test was called) 600. He started her on 250 mg twice a day on Keflex for only 10 days and then for the last four days on Rifampin. This is day four and I am totally seeing signs of my old daughter back. My new worry is to find a PANDAS doc that will keep the Keflex going because I know if we stop after 10 days the symptoms will come back. I have a couple of leads to get into a PANDAS doctor this week hopefully. Has anyone had their child on Rifampin in addition to Keflex? Thanks again for everyones support. You have all been so helpful!

Link to post
Share on other sites

DD13 took biaxin/rifampin (along with other things) for a year during her treatment for bartonella. There were some herx symptoms (bone pain, headache, motor ticcing) as bartonella bacteria were lysed and released endotoxins. If your child, by chance has this infection, she could experience some of these symptoms as well.

Link to post
Share on other sites
  • 4 weeks later...

I have been there too. Here is what I did. Call the PANDAS doctor's office frequently and ask if they have any cancellations. This really has worked for me on several occasions. People do cancel and they may even remember you and call you when someone does.

In the meantime, can you get your pediatrician or anyone to give you antibiotics while you wait. I managed to get my pediatrician to do that after much pleading. I even consulted with others to give him the recommended dose of Augmentin. If they won't then maybe the PANDAS specialist will call one in in advance of the consult.

 

Don't give up and trust yourself.

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...