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kferricks

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Posts posted by kferricks

  1. After sudden onset last September of extreem OCD, repeating words/phrases forwards / backwards, sensory issues, piano fingers, rages etc. etc. OCD clinic for months (with worsening of symptoms), receiving diagnosis of Pandas in Dec. and immediate improvement during Dec, and Jan. Worsening of symptoms in Febuary with prednisone (after the prednisone helped in Dec) to a Lyme dianosis in mid April, new meds in May. For the first time this kid is starting to let go of some of the horrid OCD. She plans on going swimming tomarro to a place that is "contaminated", moreover; for once she has agreed and wants her best friend to see her and come to our house!!!! Much of her magical thinking has been gone but the contamination ocd has affected every aspect of her life. It was just a short time ago that she would completely freak at even the thought of the kids even seeing her let alone her see them. I know without a doubt that without the new meds that she would not even be able to contemplate the thought. The Pandas treatment has helped with rages, piano fingers, magical thinking and most of the backwards/forward talk, and dialated eyes. But the Lyme treatment (first doses of Tindamax was last Mon/Tue)is bringing new healing and I'm so excited that I have not been able to sleep.

     

    Just wanted to share.

  2. I will be following your post. I'm sorry that I do not have any help for you but I do have a questions. How much does your son weigh and how much Flag does he take? How long has he been treating for lyme and what other meds is he on? I had the opposite experience. I thought it would be physical and it turned out to be stronger ocd etc.

  3. Have you tried epsom salt baths? They really calm my daughter. 2 cups (sometimes a little more) in a bath, and probiotics? Culterelle? Even if she does not swollow pills, I just open the capsulle and mix it in her drink. I do believe what you are describing with the meds are probably herxing reactions which is actually a good thing.. The medicine was this prescribes by Dr.J? Or one of the other docs? What kind of doctor is Dr. Beal?

  4. A National and State Profile of Leading Health Problems and Health Care Quality for US Children: Key Insurance Disparities and Across-State Variations

     

    Christina D. Bethell PhD, MBA, MPH, a, , Michael D. Kogan PhDa, Bonnie B. Strickland PhDa, Edward L. Schor MDa, Julie Robertsona and Paul W. Newacheck DrPHa

     

    My link

     

    http://www.sciencedirect.com/science/article/pii/S1876285910002500

    Thanks for posting this. I'm off to read :)

  5. The pharmacy gave her the large pills instead of the little ones. She was not happy. I cut the half in half/ and she almost completely lost the second half spitting it back out in the water....think she swollowed most of it.

     

    Have my fingers and toes crossed and terrified at the same time. Hope I can get the second half in her.

  6. I'm just wondering what your school experiences are for your kids. When dd11 started this last episode we pulled her to start homeschooling. I can't imagine her being in school right now. Please share your school experiences and whether or not your kids are public, private, have an IEP, etc. I'm wondering what are best choice should be for next school year.

     

    Our school has provided home bound schooling since the third week of school. I'm praying that she is in a much better place for the next grade and can go back. If not, we are considering our churches school. If that will not work, we will do on-line education. But, I'm really hoping to be able to go back to work next fall. I'm broke! lol

  7. OH my gosh! She actually just pulled out a couple items that she got for Christmas that had to be placed behind the couch because some how or other they got contaminated (at Christmas time). Not playing with them but at least looking... If nothing else, the meds are making her a lil more braver. I am so glad I found this web site. So gratefull for the internet. Last October I was so numb and lost. I looked up OCD and found this site and was pretty put off when I read the ocd part of this site. Then I saw the cute little word Pandas and was curious so I clicked on it and read for a couple days. I was sure that was what my child had. In between I would click on the lyme board because I realized that the kids with lyme were suffering with the same symptoms often. When my child flew backwards on the Prednison, I knew from reading this board that she probably had it. All of our kids suffering the same. Antibiotics are helping both sets.

    I'm pretty sure my family would have little hope left if it were not for the internet and ppl getting together and discussing what they are going though. and BRAVE doctors with hearts of gold who give of thierselves everyday to help all of our children.

     

    Ok I'm just rambling, sorry. Thanks for all of your support, I pray for all of the children everyday. (and the parents)

  8. She was on Biaxin for a lil over a month and the amox was added last week. Now on Biaxin alone, her mood improved and while we were at the Pandas doctor, she actually sat down in the chair...I did'nt look because she always stood up anywhere that was not at home or my sisters. The doc pointed out! lol Then last week Lyme doc added the amox. Usually my daughter has the age regression at different times, she is 11 but the only other child she has interacted with since last Sept was my grandbabie almost 3yr...The other day I went and bought DD a couple comic books and picked up my grandbabie and pack of Barbie Cats. Then I saw the same thing with Dogs and picked it up for my DD, because i knew later that night she would be wishing she had one to play with. When I brought them home my DD said "mom, can you put this somewhere till I'm better?" I said but they are brand new and no one touched them. Then she said I know, but they remind me of my friends so they are kind of germy. But then she said, besides I'm getting older and kind of Barbied out. I have a whole box upstairs that I'm going to give Elli when she turns 4. Then I said well then Y don't you just go give her the dogs then? and SHE DID! This is hugh because she is a hoarder! :) This is a first all year!

    Then yesterday, she opened the fridge with a paper towel! Before when it was suggested, well she just had too much fear to even consider it.

    Then today she informed me that her homebound teacher at the library always eats crackers for thier break, and she shared them with her! Where as before that would've been a no go!

    Also, becaue of two weeks traveling to and from CT and RI, her teacher has decided to add an extra day and a half hour to each day to make up for it, well all 3 days this week she has seen at least two busses from our district and while she has hidden and ws not happy, she did NOT NEED a shower!

    To my family or outsiders this might not seem like much but I knew you guys would understand how hugh this is for us. While I"m excited and starting to get a lil more hope, I must say I have not started the Tindamax just yet. Waiting till after Saturday because we promised her she could go to a concert and help her dad set up stage and the sound system and she has been really looking forward to it. I was afraid that she would go backwards and not be in any shape to do it. I think I will start on Sunday night.

    Oh, I forgot to add, she also wanted to brush her teeth and used the foam soap on her own!

    Her contamination fears have ruled every part of her life including any thing to do with school. Many objects that were in her life before her sudden onset of symptoms are considered contaminated.

     

    One more ? about the Tindamax and then I'll get off that subject. Do you guys give it a bedtime or early evening?

     

    Jodi

  9. My kid has been on Biaxin only for over a month. Given by her Pandas doc. She started with her lyme doc this past Wed. and Amox/ K Clav was added in on Friday. Unfortunately we realized the kid was in a Pandas flare late Thursday night. I have been hoping the Amox would help take care of that but have not seen improvement. I am afraid to start her on the Tindamax while she is already not in a good place. I emailed the Pandas doc and got the reply we are to follow the new docs direction. Should I call the lyme doc and ask for another type of antibiotic? or just go ahead and bite the bullet and give her the tindamax. I know the answer...just call the lyme doc. I hate being the type of person who can get intimidated, which is why I'm posting here. lol Has this ever happened to anyone else here who have a pandas/lyme diagnosis?

  10. Ok...that's good. I don't recall too many children being on it daily. We started with Sat/Sun, but now do it Friday evening - Sun morning.

    3 days? how long did you do 2 days?

    Still do it 2 days (4 doses of 250mg). Friday pm, Saturday am & pm, Sunday am.

    Has that helped with the herxing? Or so that he is in better shape for school on Monday? Just curious, I'll probably be asking questions till the end of time.

  11. I'd get a second opinion from someone that truly understands TBI. Band 23 is a very specific Lyme band and low CD57 both indicate that Chronic Lyme might be an issue.

     

    My girlfriend's son had similar CD57 and came back IND for Lyme but positive for Bartonella and Ehrlichiosis. He is being successfully treated and no longer has OCD or TICs. AND, on the road to recovery with the rest of his remaining Lyme symptoms after almost one year treatment.

    How long did he have OCD & Tics before starting treatment?

  12. I did'nt know they were large until we got home. I just assumed because that is what the doc said they would be. I called the office and at first they just said that the pharmacy already called them to get the info on how to take it. I told them that was not the problem but the size of the pills and was worried if the dosage was correct. She sounded like I was an alien and pretty dumb. But she did call the pharmacy and told them that from now on they had to be the little ones. So, no one had answered my ? of whether or not we had the right dosaged.

     

    She will only take it two days a week. I'm still debating which two days.

    She will be on that, biaxin and amox/clav

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