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Hi Everyone,

 

I'm a newbie but have been reading the Tourettes and PANDAS forums for quite a while. I am writing this to say thank you from the bottom of my heart to all of you. You were there for me during the darkest moments of my life and never knew it. My dd(6) was diagnosed with Tourettes about 18 months ago. I was devastated and quickly starting looking for anything I could do to help her. Nothing, and I mean NOTHING I tried made a difference. Some of the things I have tried include: Natural Calm, probiotics, multivitamins, NAC, taurine, NAET for 1 year, Nystatin, Topamax, a chiropractic neurologist, and a corn free, dairy free, yeast free, gluten free diet that has left me making all the food my daughter eats from scratch (I HATE to cook!!). Despite all my efforts, I never saw any long-term improvement in her tics. She actually seemed to be getting worse. Our main issue is a vocal tic (a cross between a hiccup and a cough). When she's waxing I hear it all day long (every 3-5 seconds). I started out on the Tourettes board but somehow found myself curious about what PANDAS was. I read the forum like crazy and thanks to all your posts I began to see that my daughter may indeed have something else going on. When she started ticcing it was right around the same time she had a sinus infection. She wound up having 3 sinus infections in an 8 month period. She received antibiotics each time and the tics went away after the first two infections but not after the third. I saw two neurologists who both diagnosed her with Tourettes based on her tics and the fact that my sister's son was diagnosed with Tourettes (he is the poster child for PANDAS but that will have to be a different post). Both neurologists flat out told me there is no such thing as PANDAS. I didn't care because your stories were always there in the back of my mind and I knew the doctors were wrong. I thought a lot about making an appointment to see Dr. K or Dr. L but the truth is my daughter didn't/doesn't seem to fit the PANDAS profile. I went over Dr. K's checklist of PANDAS symptoms about 20 times. She doesn't meet the criteria. Her only major issue is a vocal tic and a mild sensory issue with clothing. No OCD (I love the list you created), no rages, no changes in handwriting, no separation anxiety, no sleep issues, etc. I was afraid of being laughed out of Dr. K's office and spending thousands in the process (I live in CA). However, one day Phasmid posted about seeing a doctor in Irvine named Dr. Lin. I figured he's practically in my backyard so what do I have to lose? I almost fell off my seat when he said he thought there was a 75% chance that she had PANDAS. After ordering some blood work and a urine test we found out that her Anti-DNASE B strep antibodies were elevated (not her ASO) and she had extremely high levels of yeast (despite the anti yeast diet we have her on) and clostridium. Dr. Lin diagnosed her with PANDAS based on her lab work and history and started her on a treatment plan. She is currently on 5ml of Azith 2x/day (200mg strength), Flagyl (we just finished 2 weeks on it) and Fluconazole for 2 months. The improvement I have seen is TREMENDOUS! In the back of my mind I am terrified of losing the gains we've made but for now I'm breathing again for the first time in 18 months. I still have doubts sometimes that she really does have PANDAS but at this point I don't care what she has. She's responding wonderfully to treatment and that's all that counts. The bottom line is, without all of you she would never have been diagnosed. You have made such difference in her life and in mine. Thank you all for being so brave and for sharing your heartache, pain, knowledge and especially your moments of triumph. You have given me back something priceless that I never thought I would ever feel again...you have given me back hope. May god bless all of you!!

 

Caring Mom

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Hi Everyone,

 

I'm a newbie but have been reading the Tourettes and PANDAS forums for quite a while. I am writing this to say thank you from the bottom of my heart to all of you. You were there for me during the darkest moments of my life and never knew it. My dd(6) was diagnosed with Tourettes about 18 months ago. I was devastated and quickly starting looking for anything I could do to help her. Nothing, and I mean NOTHING I tried made a difference. Some of the things I have tried include: Natural Calm, probiotics, multivitamins, NAC, taurine, NAET for 1 year, Nystatin, Topamax, a chiropractic neurologist, and a corn free, dairy free, yeast free, gluten free diet that has left me making all the food my daughter eats from scratch (I HATE to cook!!). Despite all my efforts, I never saw any long-term improvement in her tics. She actually seemed to be getting worse. Our main issue is a vocal tic (a cross between a hiccup and a cough). When she's waxing I hear it all day long (every 3-5 seconds). I started out on the Tourettes board but somehow found myself curious about what PANDAS was. I read the forum like crazy and thanks to all your posts I began to see that my daughter may indeed have something else going on. When she started ticcing it was right around the same time she had a sinus infection. She wound up having 3 sinus infections in an 8 month period. She received antibiotics each time and the tics went away after the first two infections but not after the third. I saw two neurologists who both diagnosed her with Tourettes based on her tics and the fact that my sister's son was diagnosed with Tourettes (he is the poster child for PANDAS but that will have to be a different post). Both neurologists flat out told me there is no such thing as PANDAS. I didn't care because your stories were always there in the back of my mind and I knew the doctors were wrong. I thought a lot about making an appointment to see Dr. K or Dr. L but the truth is my daughter didn't/doesn't seem to fit the PANDAS profile. I went over Dr. K's checklist of PANDAS symptoms about 20 times. She doesn't meet the criteria. Her only major issue is a vocal tic and a mild sensory issue with clothing. No OCD (I love the list you created), no rages, no changes in handwriting, no separation anxiety, no sleep issues, etc. I was afraid of being laughed out of Dr. K's office and spending thousands in the process (I live in CA). However, one day Phasmid posted about seeing a doctor in Irvine named Dr. Lin. I figured he's practically in my backyard so what do I have to lose? I almost fell off my seat when he said he thought there was a 75% chance that she had PANDAS. After ordering some blood work and a urine test we found out that her Anti-DNASE B strep antibodies were elevated (not her ASO) and she had extremely high levels of yeast (despite the anti yeast diet we have her on) and clostridium. Dr. Lin diagnosed her with PANDAS based on her lab work and history and started her on a treatment plan. She is currently on 5ml of Azith 2x/day (200mg strength), Flagyl (we just finished 2 weeks on it) and Fluconazole for 2 months. The improvement I have seen is TREMENDOUS! In the back of my mind I am terrified of losing the gains we've made but for now I'm breathing again for the first time in 18 months. I still have doubts sometimes that she really does have PANDAS but at this point I don't care what she has. She's responding wonderfully to treatment and that's all that counts. The bottom line is, without all of you she would never have been diagnosed. You have made such difference in her life and in mine. Thank you all for being so brave and for sharing your heartache, pain, knowledge and especially your moments of triumph. You have given me back something priceless that I never thought I would ever feel again...you have given me back hope. May god bless all of you!!

 

Caring Mom

 

Dr. Lin is great. We are from NM and drove to California to see him. We could not afford to fly to see Dr. K and the drive would have been double the time it is took us to get to Cali. This website is amazing and I wold not have known where to begin had it not been for others on this forum. I am glad you are seeing improvements.

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Wow, that's quite a drive! Are you still seeing him or did you wind up going to see another doctor? I feel so fortunate to have him on my side as he doesn't kid around with this disorder. His approach to treating PANDAS seems to be very aggressive and he escalates things quickly when needed.

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It's sounds like you are finally finding your way to answers. I am so happy for you. Never give up hope. If any of us fully gave it up, our kids would be forever lost. They need us to fight for them just like you did for your daughter.

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Thank you for posting! I am sure that you have helped some others that will see themselves in your story. all the kids are different and the defination and diagnosis criteria are still evolving. Its important that stories like yours get out there. Thats why I satarted post after serval months of reading. Then I got hooked! Welcome and best of luck for continued success!

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That's wonderful news. Congrats.

 

We are also in Southern Cailfornia, in Pasadena.

 

Would you mind sharing what the urine tests were that he ordered? And congrats again.

 

Thanks so much.

 

Hi Everyone,

 

I'm a newbie but have been reading the Tourettes and PANDAS forums for quite a while. I am writing this to say thank you from the bottom of my heart to all of you. You were there for me during the darkest moments of my life and never knew it. My dd(6) was diagnosed with Tourettes about 18 months ago. I was devastated and quickly starting looking for anything I could do to help her. Nothing, and I mean NOTHING I tried made a difference. Some of the things I have tried include: Natural Calm, probiotics, multivitamins, NAC, taurine, NAET for 1 year, Nystatin, Topamax, a chiropractic neurologist, and a corn free, dairy free, yeast free, gluten free diet that has left me making all the food my daughter eats from scratch (I HATE to cook!!). Despite all my efforts, I never saw any long-term improvement in her tics. She actually seemed to be getting worse. Our main issue is a vocal tic (a cross between a hiccup and a cough). When she's waxing I hear it all day long (every 3-5 seconds). I started out on the Tourettes board but somehow found myself curious about what PANDAS was. I read the forum like crazy and thanks to all your posts I began to see that my daughter may indeed have something else going on. When she started ticcing it was right around the same time she had a sinus infection. She wound up having 3 sinus infections in an 8 month period. She received antibiotics each time and the tics went away after the first two infections but not after the third. I saw two neurologists who both diagnosed her with Tourettes based on her tics and the fact that my sister's son was diagnosed with Tourettes (he is the poster child for PANDAS but that will have to be a different post). Both neurologists flat out told me there is no such thing as PANDAS. I didn't care because your stories were always there in the back of my mind and I knew the doctors were wrong. I thought a lot about making an appointment to see Dr. K or Dr. L but the truth is my daughter didn't/doesn't seem to fit the PANDAS profile. I went over Dr. K's checklist of PANDAS symptoms about 20 times. She doesn't meet the criteria. Her only major issue is a vocal tic and a mild sensory issue with clothing. No OCD (I love the list you created), no rages, no changes in handwriting, no separation anxiety, no sleep issues, etc. I was afraid of being laughed out of Dr. K's office and spending thousands in the process (I live in CA). However, one day Phasmid posted about seeing a doctor in Irvine named Dr. Lin. I figured he's practically in my backyard so what do I have to lose? I almost fell off my seat when he said he thought there was a 75% chance that she had PANDAS. After ordering some blood work and a urine test we found out that her Anti-DNASE B strep antibodies were elevated (not her ASO) and she had extremely high levels of yeast (despite the anti yeast diet we have her on) and clostridium. Dr. Lin diagnosed her with PANDAS based on her lab work and history and started her on a treatment plan. She is currently on 5ml of Azith 2x/day (200mg strength), Flagyl (we just finished 2 weeks on it) and Fluconazole for 2 months. The improvement I have seen is TREMENDOUS! In the back of my mind I am terrified of losing the gains we've made but for now I'm breathing again for the first time in 18 months. I still have doubts sometimes that she really does have PANDAS but at this point I don't care what she has. She's responding wonderfully to treatment and that's all that counts. The bottom line is, without all of you she would never have been diagnosed. You have made such difference in her life and in mine. Thank you all for being so brave and for sharing your heartache, pain, knowledge and especially your moments of triumph. You have given me back something priceless that I never thought I would ever feel again...you have given me back hope. May god bless all of you!!

 

Caring Mom

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We owe it all to the parents on this forum!---my daughter has a diagnosis and has received treatment from 2 excellent PANDAS docs. due to info and recommendations I have gotten from here. My pediatrician will even ask me what the "moms" on the forum think (he doesn't realize some Dads are just as involved on here)-he knows I always ask here first. We will always be eternally greatful to the wonderful and knowledgeable parents on this forum, who have and continue to help guide our way through the PANDAS maze.

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Thank you everyone for your wonderful welcome and for your good wishes. Kimballot, I certainly do plan on "paying it forward" in any way that I can. I would be glad to answer any and all questions that anyone has for me and will continue to keep everyone posted on our journey. Lfran, the urine test Dr. Lin ordered is from Great Plains Lab and is called the Microbial Organic Acids Test (MOAT). Normally Dr. Lin orders a stool test, but my husband and I are having to pay for everything out of pocket so Dr. Lin said this test would be a cheaper way for us to go. It measures among other things something called HPHPA (which are clostridia markers). My daughter's number came out at more than 5x the normal amount. I had no idea she had any issues with clostridium as she never had diarrhea or complained of stomach pain. I believe the MOAT test cost us $145.00.

 

Caring Mom

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Thank you everyone for your wonderful welcome and for your good wishes. Kimballot, I certainly do plan on "paying it forward" in any way that I can. I would be glad to answer any and all questions that anyone has for me and will continue to keep everyone posted on our journey. Lfran, the urine test Dr. Lin ordered is from Great Plains Lab and is called the Microbial Organic Acids Test (MOAT). Normally Dr. Lin orders a stool test, but my husband and I are having to pay for everything out of pocket so Dr. Lin said this test would be a cheaper way for us to go. It measures among other things something called HPHPA (which are clostridia markers). My daughter's number came out at more than 5x the normal amount. I had no idea she had any issues with clostridium as she never had diarrhea or complained of stomach pain. I believe the MOAT test cost us $145.00.

 

Caring Mom

 

Thank you for this information. I am going to ask my daughter's ped to order it. Can she fax them over a prescription or do I need to call first to order the test?

 

Thank you for posting your daughter's story. I wish you the best!

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Philamom,

 

The doctor actually gave me a kit. In the box was a container for her to pee in and it included a form from Great Plains Lab that he filled out ahead of time making which test he wanted her to have. I was to have her pee in the cup and then send it via Fed Ex to Great Plains Lab. The Fed Ex envelope was included and it was for an overnight delivery - I payed for nothing. Here is the telephone number for Great Plains Lab (913)341-6207. I'm sure they can give you instructions on how to get the kit. Sorry I can't be of more help.

 

Caring Mom

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Philamom,

 

The doctor actually gave me a kit. In the box was a container for her to pee in and it included a form from Great Plains Lab that he filled out ahead of time making which test he wanted her to have. I was to have her pee in the cup and then send it via Fed Ex to Great Plains Lab. The Fed Ex envelope was included and it was for an overnight delivery - I payed for nothing. Here is the telephone number for Great Plains Lab (913)341-6207. I'm sure they can give you instructions on how to get the kit. Sorry I can't be of more help.

 

Caring Mom

 

Thank you!

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Wow, that's quite a drive! Are you still seeing him or did you wind up going to see another doctor? I feel so fortunate to have him on my side as he doesn't kid around with this disorder. His approach to treating PANDAS seems to be very aggressive and he escalates things quickly when needed.

 

I still see him. We actualy have phone consults. I have one with him tomorrow. We had IVIG a few weeks ago and now I am not sure what I am suppose to be doing.

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