Comments for Joshua's Missing Peace http://joshuasmissingpeace.com/blog A Mother's True Story Sun, 09 Jun 2013 23:41:34 +0000 hourly 1 http://wordpress.org/?v=3.4.1 Comment on Antibiotic with PANS/PANDAS by Twins mum http://joshuasmissingpeace.com/blog/antibiotic-with-panspandas/#comment-58 Twins mum Sun, 09 Jun 2013 23:41:34 +0000 http://joshuasmissingpeace.com/blog/?p=239#comment-58 Have you done blood tests to see if your son has elevated strep levels? Dr Kovacevic in Chicago who you can google search him and then email him will be able to help you to confirm his diagnosis so you can get the right treatment for your son. Unfortunately there is very little knowledge in Australia and my paediatrician who is in Sydney and helped us no longer practices and has moved to America. Have you done blood tests to see if your son has elevated strep levels? Dr Kovacevic in Chicago who you can google search him and then email him will be able to help you to confirm his diagnosis so you can get the right treatment for your son. Unfortunately there is very little knowledge in Australia and my paediatrician who is in Sydney and helped us no longer practices and has moved to America.

]]> Comment on Antibiotic with PANS/PANDAS by mummaduck http://joshuasmissingpeace.com/blog/antibiotic-with-panspandas/#comment-57 mummaduck Mon, 20 May 2013 17:00:26 +0000 http://joshuasmissingpeace.com/blog/?p=239#comment-57 We are desperate to find PANS literate Drs in Australia (preferably Western Australia) -can any body help with details? Our 10yr old boy has been living with this for 18 months now, has missed 6 months of school, has lost all social contact and has seen a million "experts" all of whom know nothing about PANS. PLEASE HELP US! We are desperate to find PANS literate Drs in Australia (preferably Western Australia) -can any body help with details? Our 10yr old boy has been living with this for 18 months now, has missed 6 months of school, has lost all social contact and has seen a million “experts” all of whom know nothing about PANS. PLEASE HELP US!

]]> Comment on Talking in Public by Theresa J http://joshuasmissingpeace.com/blog/talking-in-public/#comment-55 Theresa J Fri, 08 Mar 2013 14:38:38 +0000 http://joshuasmissingpeace.com/blog/?p=305#comment-55 Hi, I find that March thru September timing off for us. Usually we get strep in the spring -Feb., March or April and summer is hell-ish. Our steroid burst was a wonderful normal couple of weeks, but back to pandas/ pans normal now. I hope that this disease can become non-controversial so the doctors will get on with the treatments to help these kids. Hi,
I find that March thru September timing off for us. Usually we get strep in the spring -Feb., March or April and summer is hell-ish.
Our steroid burst was a wonderful normal couple of weeks, but
back to pandas/ pans normal now.
I hope that this disease can become non-controversial so the doctors will get on with the treatments to help these kids.

]]> Comment on PANDAS, PANS, and IVIG treatment by admin-JMP http://joshuasmissingpeace.com/blog/pandas-pans-and-ivig-treatment/#comment-52 admin-JMP Thu, 03 Jan 2013 22:31:03 +0000 http://joshuasmissingpeace.com/blog/?p=205#comment-52 I know it's scary when you feel like you're calling the shots, but be so thankful that you have doctors that will work with you....that is so rare with this diagnosis I just gave him 1/2 juice and 1/2 water to drink the day before and reminded him to drink every 15 minutes or so. They had a slushie machine and juice boxes there so I kept feeding him those. I have heard of people asking their doctors to run a bag of fluid a after the ivig..we never did that though. I hope all goes well. Remember, it gets a little crazier before it gets better, hang in there. I know it’s scary when you feel like you’re calling the shots, but be so thankful that you have doctors that will work with you….that is so rare with this diagnosis
I just gave him 1/2 juice and 1/2 water to drink the day before and reminded him to drink every 15 minutes or so. They had a slushie machine and juice boxes there so I kept feeding him those. I have heard of people asking their doctors to run a bag of fluid a after the ivig..we never did that though.
I hope all goes well. Remember, it gets a little crazier before it gets better, hang in there.

]]> Comment on PANDAS, PANS, and IVIG treatment by Susan Bourne http://joshuasmissingpeace.com/blog/pandas-pans-and-ivig-treatment/#comment-51 Susan Bourne Thu, 03 Jan 2013 21:34:35 +0000 http://joshuasmissingpeace.com/blog/?p=205#comment-51 We are about to embark on our first round of IVIg with a pediatrician and an immunologist, neither of whom has ever done this for PANDAS before. *sigh* Thankfully, we are being guided by Dr. Tanya Murphy (who we briefly saw a couple of months ago once), but, I feel like I am the quarterback here... since she is 4.5 hours away so cannot be our lead MD. Can you tell me when and how much/many fluids I should start pushing into my 7 year old daughter before/after the IVIg? Thank you so much for any information and help. We are about to embark on our first round of IVIg with a pediatrician and an immunologist, neither of whom has ever done this for PANDAS before. *sigh*

Thankfully, we are being guided by Dr. Tanya Murphy (who we briefly saw a couple of months ago once), but, I feel like I am the quarterback here… since she is 4.5 hours away so cannot be our lead MD.

Can you tell me when and how much/many fluids I should start pushing into my 7 year old daughter before/after the IVIg?
Thank you so much for any information and help.

]]> Comment on PANDAS, PANS, and IVIG treatment by admin-JMP http://joshuasmissingpeace.com/blog/pandas-pans-and-ivig-treatment/#comment-50 admin-JMP Thu, 03 Jan 2013 20:24:51 +0000 http://joshuasmissingpeace.com/blog/?p=205#comment-50 Even though he wasn't a very "symptomatic" allergy child, I had him tested for foods and inhalant allergies and "wow". Removing his food allergies made lso had some other stuff cme up in his bloodwork that the doctor recommended, eliminating gluten from his diet...made huge changes. I think underlying allergies add to the inflammation problem for these kids. Even though he wasn’t a very “symptomatic” allergy child, I had him tested for foods and inhalant allergies and “wow”. Removing his food allergies made lso had some other stuff cme up in his bloodwork that the doctor recommended, eliminating gluten from his diet…made huge changes. I think underlying allergies add to the inflammation problem for these kids.

]]> Comment on PANDAS, PANS, and IVIG treatment by jody http://joshuasmissingpeace.com/blog/pandas-pans-and-ivig-treatment/#comment-49 jody Thu, 03 Jan 2013 19:55:48 +0000 http://joshuasmissingpeace.com/blog/?p=205#comment-49 Thank you for the response! I am hoping that is the case and we will see improvement with each infusion. Can you tell me what you did as far as the allergies/ or mean as far as they were important in treatment? Diet? Allergy meds? interactions? Thanks!!!!! Im a little scared to put him back on his Advair and Singulair again- as I just dont want anything contributing to another downward spiral!!!! He did SO good the first 4 months of onset as far as allergies completely disappearing! Has me quite puzzled that they are now back Post IVIg ( Im sure as you all have been puzzled a time or two with this Monster :) Thank you for the response! I am hoping that is the case and we will see improvement with each infusion. Can you tell me what you did as far as the allergies/ or mean as far as they were important in treatment? Diet? Allergy meds? interactions? Thanks!!!!! Im a little scared to put him back on his Advair and Singulair again- as I just dont want anything contributing to another downward spiral!!!! He did SO good the first 4 months of onset as far as allergies completely disappearing! Has me quite puzzled that they are now back Post IVIg ( Im sure as you all have been puzzled a time or two with this Monster :)

]]> Comment on PANDAS, PANS, and IVIG treatment by admin-JMP http://joshuasmissingpeace.com/blog/pandas-pans-and-ivig-treatment/#comment-48 admin-JMP Thu, 03 Jan 2013 18:43:19 +0000 http://joshuasmissingpeace.com/blog/?p=205#comment-48 Yes...we had a great week, then an off the wall week. The tics would morph into different tics and vary in intensity. We had turning back the pages as well, but it would be days at a time instead of hours. It should level off by 3 months. Our ivigs were further apart. Hang in there. Check into those allergies though..they ended up playing am important role in treatment. Yes…we had a great week, then an off the wall week. The tics would morph into different tics and vary in intensity. We had turning back the pages as well, but it would be days at a time instead of hours. It should level off by 3 months. Our ivigs were further apart. Hang in there. Check into those allergies though..they ended up playing am important role in treatment.

]]> Comment on PANDAS, PANS, and IVIG treatment by Jody http://joshuasmissingpeace.com/blog/pandas-pans-and-ivig-treatment/#comment-47 Jody Thu, 03 Jan 2013 18:01:21 +0000 http://joshuasmissingpeace.com/blog/?p=205#comment-47 We are going on two weeks Post IVIG. Had the massive headache (still has head pain when he coughs or sneezes) and vomiting in first 24 hours. I was actually thankful for the headache as i had heard it was a good sign. Within 32 hours tics were completely gone. Sunday his handwriting came back better than before onset four months ago. His personality seems to be coming back like the fog in his brain is lifting! BUT the last two days weve noticed mild facial and vocal tics coming back....not nearly as severe but they are back. :( Im so frustrated and sad, even though i realize this can be normal! I'm praying this is a normal up and down Post IVIg. We have been approved for two more rounds and doc wants to do 6 weeks apart! Have you all seen more improvement after each infusion? Have you all seen the "turning back of pages" of the symptoms like this where it was marked improvement from day one and then symptoms return? Please tell me there's hope they are temporary and we are just experiencing a few bad days here! Oh... And anyone else see allergy symptoms return Post IVIg? I've heard this is a good sign also? We are going on two weeks Post IVIG. Had the massive headache (still has head pain when he coughs or sneezes) and vomiting in first 24 hours. I was actually thankful for the headache as i had heard it was a good sign. Within 32 hours tics were completely gone. Sunday his handwriting came back better than before onset four months ago. His personality seems to be coming back like the fog in his brain is lifting! BUT the last two days weve noticed mild facial and vocal tics coming back….not nearly as severe but they are back. :( Im so frustrated and sad, even though i realize this can be normal! I’m praying this is a normal up and down Post IVIg. We have been approved for two more rounds and doc wants to do 6 weeks apart! Have you all seen more improvement after each infusion? Have you all seen the “turning back of pages” of the symptoms like this where it was marked improvement from day one and then symptoms return? Please tell me there’s hope they are temporary and we are just experiencing a few bad days here! Oh… And anyone else see allergy symptoms return Post IVIg? I’ve heard this is a good sign also?

]]> Comment on After the IVIG to treat PANDAS by admin-JMP http://joshuasmissingpeace.com/blog/after-the-ivig-to-treat-pandas/#comment-46 admin-JMP Sun, 16 Dec 2012 18:32:17 +0000 http://joshuasmissingpeace.com/blog/?p=230#comment-46 St John's Mercy Medical under a recommendation from Dr.K and a psychiatrist in STL. St John’s Mercy Medical under a recommendation from Dr.K and a psychiatrist in STL.

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