kferricks

I'm sorry you are having such a hard time. Has any doctor told you that it takes 6-8 weeks for an SSRI to fully take effect? I am just thinking that perhaps you could get by with a supplement that helps to boost serotonin, such as L-tryptophan or 5HTP...I'm pretty sure (but not positive) that you will see results with those within days...at least my husband did when he started to take L-tryptophan. DO NOT combine these supplements with an SSRI, you would have to stop the zoloft first. How long would we have to stop the zolof before we try the L-tryptophan? We took her off the zolof hoping to see a bigger improvement while taking the keflex. We did see a bit more improvement but in other areas it seems to have regressed. which is why we were thinking about putting her back on the zolof. thanks for the info.

should i give her 1 ibuprofen a day? I don't know enough about the ibuprofen I guess,.

My DD 10 is on Keflex twice daily 500mg. While I have seen improvement, the OCD and crying at night are still here. Last night we decided that maybe it is not strong enough or she needs another kind of abx. So we gave her the zolof untill we see Dr. B in Dec. Still going to keep her on the Keflex because I'm scared to death that things will get even worse....

Thank you so much for posting this! I needed to read something like this today. You give us hope.

Tuesday after clinic, she came home and cried for a little over 2hours. Tonight, she cried/practically screamed and stressed all the way home and for awhile after. Somedays it seems like she is getting a little better and other days; I just wish she was back. My family doc did say that he would go ahead and prescribe her keflex till her appointment with Dr. B, but would not up the dose or change the type. December can't come soon enough.

Oh it was definately apraxia. The kid was trying to talk at a very young age, but never got passed the babble? She started Head Start and speech therapy at 3, 2 x's a week there and at the same time was going to an outbranch of Childrens Hospital 3 days a week. When she started Kindergarten she continued at the hospital plus had speech at school 2 days week till the begining of 4th grade. So that was about 6yrs of intense therapy. Nobody could understand her except her immediate family and my mom. So, I decided to get a job as an assistant at Head Start so I could translate for her. lol After a little more than a month the kids and teacher were able to at least get the jist of what she was saying and then she was able to make friends there. Best thing I ever did for her. After reading so many posts here, it made me wonder if maybe there was a connection. Probably not, but I figured it could'nt hurt to ask.

I'm looking into the same thing, except we don't have United Healthcare. Did you call and ask Dr. B office if that particular insurance covered the IVIG?

My DD had a severe case when younger. I had her in speech therapy by the time she was 3yrs. Her speech is perfect now, but I'm just wondering if any others had experienced this. just curious as usual....

Everytime I read your posts, I sit here in awe of you. You are truly an inspiration and I have no doubt that you are heading towards a great future. Do you keep a journal? Maybe someday you can write a book about your struggles as an actual Pandas teen.

Oh yes, I am hoping it is PANDAS, and not PANDAS plus Lyme, or PANDAS plus some other nasty bug. We have a consult with Dr. T on Tuesday and I'm hoping we will start the correct treatment for PANDAS. (He's been on and off a range of different antibiotics since August.)I'm not sure what that correct treatment is though. Is it antibiotics - high dose, low dose, which one(s)? Steroids? IVIG? PEX? I wish more people stayed around on the forums to share their success stories. It seems the people still on here are mostly the ones still looking for answers and still struggling through treatment options. Is it possible to have a post pinned at the top of success stories so we can see how many get better and how they got there? Yes, step by step success stories would be wonderfull! For the ppl like me who are constantly questioning thierselves "am I doing the right thing?" "am I going to make it worse if I try this?"

Yes the therapy is helping. I love this place! They are wonderfull and impressed with how hard she is trying. I think it is good for her to be with a bunch of kids who understand and are all at different levels. She goes 4 days a week for 2 1/2 hours. Others go 3, 2 or 1 day. There is one kid who "graduates" next Tuesday. I believe it is helpfull to her knowing that either way she will get through this. It is still hard, but since we quit giving her the zolof, (while on antibiotics) she seems more able to work with the exposures. I do believe she has Pandas, but we already had her in this clinic by the end of the first month of onset. My thoughts were if it is OCD then she is in the best place, if its Pandas, we will get her to the best place and at least the clinic can help her cope till she is healed. Did that make sense? The clinic has been my saving grace for the time being because that was the only time I was not completely stressed and walking on egg shells around her, waiting for the next ritual or next thing that was going to set her off, or the sobbing because she hates her life and its not fair that it happened to her. It is also helpfull sitting there with parents who understand.... much like this place Sometimes I think one of Gods greatest gifts was providing us with the internet to be able to find support, information, or just a place to escape the realities of life with faceless friends who understand or have been there.

They are sending the list in the mail! Just praying my doc does it... still waiting for his response. will let you know. be back later off to ocd therapy at the clinic.

Ok. Wish me luck here. The appointment is Dec 6th. My insurance does not cover so I will be paying $300 cash... but I called my insurance and they gave me the information for filing a request for authorization based on medical need. I also email my doctor and gave him the info along with the phone and fax#'s to do this. I also asked if he would be will to work with Dr.B and if he could either order more Keflex or if he would be willing Zithromax or Augmentin. I also listed all the improvements that we have noticed, along with a note that we took her off the zolof and that was when we saw the greatest improvement. The OCD is still full force but she is so much more relaxed and better mood. My sister will also start investigating if she can get us another insurance to have at the same time up in CT that may cover her. Thanks for giving me the strength to do this. I tend to freeze with this kind of stuff. I don't know why, just always have... Will take any prayers that good thing happen with our insurance and that my doc comes through! TIA

This is wonderfull! What uplifting news! Thanks for posting this, gives us hope.

I just wanted to agree with this email. About a week ago I scheduled our first appointment with Dr. B and his office sent a very thorough list of tests that he suggested we run. That was a big relief to me. It looked like a very complete list. How far away is your appointment? Do I just call and say that I believe my child has PANDAS and that I want an appointment?

Thanks! Am printing this out now.

Thanks all. I am gratefull to have this place to come. LOL! I will put my big girl panties on! I'm sorry, I'm just frustrated and feel so dumb. The first 13 days that my DD was on Keflex, I also kept her on the Zolof 25mg. I was afraid to take her off of them after all we been through. (that is not to say that I've noticed any difference being on it)I finally took her off of it and her last dose will be Friday. While I have notices some improvement, I'm hoping to see a bigger one. I'm terrified of what is to come on Saturday. Monday, I am applying for extra insurance. I am also planning on calling Dr. B in Conneticut and making a regular appointment. My own doctor had said that after this round of Keflex that I needed to find someone else who specializes in PANDAS. Where can I get a list of all the tests that I should ask him for? Maybe if he does these tests, it will convince him to put her on an antibiotic till I can get her in Conneticut. Plus, I have her in an OCD clinic 4 days a week. I don't think the psychiatrist there believes in pandas and wanted me to up her zolof last week to 50mg. So, I'm worried about what they will say... I have no diagnosis for PANDAS. But, I just can't see ocd comming on that strong out of the clear blue just because. So, I talked my doc into putting her on the antibiotic for 20days. Because I wanted to see a difference. I wanted to know if maybe she has PANDAS. The only main difference that I can see is that she sounds more like herself and most of her movements are not so stiff. I worry that I took matters into my own hands and what if I'm making something worse? All I do is worry anymore. I think my DDs' OCD is making me OCD! (jk) Honestly though, next week is comming too soon and I'm not making progress quick enough. Thanks for being a shoulder to cry on and a warm place to come. Jodi

I feel so lost, scared and confused. I wish there was someone who could hold my hand and guide me step by step. It is so hard watching her terrified eyes. If people went to school to become doctors, then at one point they must have had a love of learning. They must have had that WHAT IF factor in thier brains. At what point do they stop wanting to learn so that they are better able to help the general population? Ok, I will not put my big girl panties back on and get on with life; wherever that may lead.

I will be following this!

While none of my kids have ever been tested, they all excelled in school. My oldest is a mathamatical genius, my oldest DD was 8yrs old correcting everyones grammer... did'nt help in the friend department. (I do suspect that she may have also had PANDAS, she was a rager; but she did most of that quietly.) My 10yr DD who I'm almost positive has PANDAS had mostly A s' and an occasional B. She also excells in math and science.

In our school district, as long as you have medical excuses from your doctor, they can not count that toward your absences. (probably why your counselor put in that magic code)

Thank you for your reponses. Maybe I am on the right track. My daughter has severe separation anxiety. I also forgot she does the piano playing fingers (not all the time anymore), and does like a pupet stance, expecially if we are in public. I am so glad I found this place. I can honestly say that I learned more in one day here reading than any professional has conveyed to me.

I'm curious. My daughter does not have tics all though for the first couple weeks she did seem to have one whenever we went somewhere. That was grimancing and turning her head to the left. Was not constant though, and her therapist at the clinic think that her repeating herself constantly could be a possible tic. She said that sometimes there is a fine line between OCD and tics. Most of the tics I've read about are much different. Truthfully, I don't know if she has PANDAS but I need to fully investigate the possiblity as a parent who is so tired of watching her suffer. We did do the blood strep test and her titers we 264 after 7weeks of the onset of server OCD. I'm waiting for the psychiatrist to sign this other paper to get a secondary insurance to help cover the medical costs of her ocd clinic, perscriptions etc. Anyway, I just read SAVING SAMMY. Gives me hope for so many people, and made me wonder about the tics.

I'm curious. My daughter does not have tics all though for the first couple weeks she did seem to have one whenever we went somewhere. That was grimancing and turning her head to the left. Was not constant though, and her therapist at the clinic think that her repeating herself constantly could be a possible tic. She said that sometimes there is a fine line between OCD and tics. Most of the tics I've read about are much different. Truthfully, I don't know if she has PANDAS but I need to fully investigate the possiblity as a parent who is so tired of watching her suffer. We did do the blood strep test and her titers we 264 after 7weeks of the onset of server OCD. I'm waiting for the psychiatrist to sign this other paper to get a secondary insurance to help cover the medical costs of her ocd clinic, perscriptions etc. Anyway, I just read SAVING SAMMY. Gives me hope for so many people, and made me wonder about the tics.

WOW! You did a great job! I am very happy and excited for you.