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New Member feeling so alone


thirteen
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Hi I live in WV and my daughter started having tics, anxiety and OCD about a year ago and I need help. This has been the hardest thing I have ever been through. The OCD came on overnight in full force. She has been going to a Psychologist for almost a year. I started researching this and when I ran across P.A.N.D.A.S, I said "That's it, that’s my daughter." I have felt so alone in this battle and can only imagine how much more it affects her. My heart breaks for her. I took her to her Dr. with printed out papers in hand and requested blood work for pandas. Her Dr. said that not many Dr.'s are willing to acknowledge it but he however, thinks it could be possible. The blood work came back and her strep antibodies were indeed high. He started her on Amoxicillin for 10 days and when I took her back and told him that I had noticed a slight improvement his story changed. He then said that he did not feel comfortable giving long term antibiotics and that I would have a hard time finding a Dr. who would. He said I could take her to Ohio but I am unable to do that as I am a single mother of 2 with no help. I greatly welcome help in knowing which step to take next. My daughter has this I know and I think it's a shame that these Dr.'s only want to mask this disease instead of treating it. I need help, I need believers.

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You can look for providers in your area(if there are any) on www.pandasnetwork.org. Many of us have to travel for help. That's the reality. I would try to work to convince your doctor first. We just had a PANDAS/PANS conference in Rhode Island last weekend that I attended. Google for the NEPandas conference. The slides from most of the experts presentations are there. Load them onto a flash drive and give it to your doctor and ask him to contact Dr Swedo at the NIMH. At the website you can copy the individual information and qualifications and give it to your doctor so he knows their credentials.

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Hi. I am so sorry for your experience. Unfortunately, it is not uncommon. Don't give up!!! We see Dr. K, out of Hinsdale, (you can look up his full name in above threads at top of forum). I heard that he will do phone consults, and I know he treats long distance. I am just not sure what that means....I would call him. Everybody has a favorite doc on this forum, but I think the ones listed here all bring something important to the table and it will put you on the right track. Best of luck. If you have any other questions, PM me. I will talk to you on phone if you would like....

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There are studies proving that Amox is no longer effective in many people. Does someone have the study handy? I know my ID doc told me that many people now make an enzyme that counteracts the Amox and that is why it may work in a petri dish but not in the body. There are also many known resistant strains to Amox.

IF you could come up with the studies perhaps your doc would be willing to trail your child on a different abx and for a longer period of time.

 

Before we realized my DD had PANDAS and an active strep infection (her behaviors were out of control but we chalked it up to toddlerhood) she incidentally had a few ear infections. She was given a 10 days course of Amox but nothing much changed. 10 days later her other ear became infected and she was given a longer course of Azith. Magically, her behavioral symptoms greatly improved, however we credited a psychologist for the miraculous improvement. We realized several months later that both of our kids had PANDAS and have been on abx ever since. But it was hindsight that we realized it was that second round of abx that helped and that the Amox was not effective.

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Thirteen,

 

You are definitely not alone! There are many parents talking about this over on the PANDAS/PANS (including Lyme) forum. I would post a request for names of good docs in your area on that forum and people in your area will help you find someone. Your doctor is misinformed. Parents are now finding help all over the country. Some here see one of the well-known PANDAS docs, some see Lyme doctors, and some see integrative doctors who understand PANS - there are a number of options. The important thing is to get a recommendation (or several), so you know you're not wasting your time and money.

 

PANDAS/PANS is a complex illness, and involves more than just a simple strep infection, but read and ask questions over on the PANDAS/PANS (including Lyme) board, and you will find help and answers.

 

Hang in there - you will get her better!

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So glad you found this forum and that the lightbulb went off. I was reading an article in the paper one day and there was an article about another pandas child and that was my lightbulb moment. I felt like I could have written that article myself. I was lucky. My pediatrician was hesitant and had never treated pandas before but was willing to consult with another doctor who had and we began antibiotic treatment immediately. After infection was treated we got prophylactic treatment until we were able to see our neurologist. My son now has long term abx treatment and is doing well. First of all you should request augmentin instead of amox. I am not sure why it is so much more effective but it really is. Also Zithromax is another good one but definitely more than just a five day z pack. I don't know your child's age but just be very cautious in giving vaccines. It is a tough decision but in some children it can make pandas worse. We now stay away from all vaccines. I will only give a vaccine if it is absolutely necessary like tetnus or something if my child were to get cut. If you are from west Virginia be sure to check out the laws in your state regarding vaccine exemptions. I think WV is like Mississippi (where I am from) in that the only school exemptions given are medical exemptions by doctors. I also have eliminated caffeine in my sons diet as that can sometimes elevate his tics. There are plenty of lists out there about pandas friendly doctors. Try to get into see one of them as soon as you can. Wishing you the best of luck and welcome to the forum.

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  • 2 weeks later...

Thank you all so much for your support and wonderful advice. I am so relieved to find others to talk to about all of this. Being alone in this, is so hard. I have seen the conference that was held in RI last week and I will put it onto a flash drive. Great advice, thank you nicklemama. EAMom, I will post under PANS/PANDAS (Lyme) I only posted here because I wanted to introduce myself as a new member. Wasn't sure exactly how to get started. Qannie47, thank you and I will never give up on my little girl. We are all they have, it's our job :) JoyBop, Amoxicillin never even worked for my daughters ear infections so I didn't even want to try it. I am in search of a new Dr. who who listen and have asked for a referral to a Rheumatologist. I spoke to his nurse and was told that he treats for PANDAS and has a couple children coming there for it. I really hope I can get somewhere with this one. Mama2alex, I sure hope so, I will not stop trying that's for sure. You are right about wasting time and money, I have nearly lost my job due to Dr.'s, pyschologists appointments, etc..I need answers and I will search until I have all that I need. Then I will help you all and all the others out there spread the word across the world. Missmom, I am so glad your son is doing well and I will look into vaccinations. My daughter is 13, so as far as I know the only one they will be wanting to give her is the Guardasil or however it's spelled, I will probably choose to steer clear of that.

Thank you all so much. I am not feeling alone anymore!

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Keep fighting. Our pediatrition was useless initially and the jury is still out about long term. We went to a psychiatrist who agreeed with us about PANDAS and PANS. We have kept video's of her behaviors and involuntary motor movements and a diary which I beleive helped. We managed to get in touch with Dr. Swedo's team at the National Institute of Mental Health. After our pediatritian spoke with a doctor at the NIMH she immediately prescribed antibiotics with a very high dosage for 10 days; 2000 mg per day! Message me and I will point you in any direction I can.

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