merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Hi everyone. I hope this message find you all having a good day.
I am asking that if you can to say a prayer or 2 for my son. He has been Diagnosed with PANDAS. Basically a rare disease caused by group A strep (strep throat) its an autoimmune disease that happens because of strep. His own brain is being attacked by his immune system.
Its not really life threatening that we know of. But it sure is disabling and terrible.
We have been invited to the NIH to aprticipate in a study by the NIH and Yale to see if IVIG will help kids who have new cases of PANDAS.
its a unique opportunity. Its been a hard decision, but I am taking him. It will not cost a cent, and he will have lots of testing,treatment and the best doctors there including the docs that discovered PANDAS.That would be like getting treated by Willy Burgdorfer (sp?)
I could never afford IVIG for my son, and PANDAS is controversial like chronic Lyme is (maybe in different ways)some doctors dont think it exists etc. I have been battling doctors for months telling them that this is PANDAS
So in 6 days my son and I are flying to maryland. I am also not feeling too well with my Lyme and I am scared to death about flying.
I will do what it takes to get him well.
Yes he is going to be tested for Lyme, But it really looks like he has the PANDAS stuff.
So please wish us well and keep him in your thoughts. Its going to be a hard few days but in the long run, it will be worth it. I am scared to death.
I started a blog to document the experience. if anyone wants the link let me know. There is place to write to us and I think my son would get a kick out of seeing all the support.
Thank you and God bless
Posts: 3905 | From USA | Registered: May 2007
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posted
Best of luck. Hope everything goes well with the travel and treatment. We will be thinking about you.
Posts: 8430 | From Not available | Registered: Oct 2000
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Pandas is controversial too? I'm so sorry to go through this stuff. Be careful, good Luke, God bless.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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James1979
Unregistered
posted
merrygirl - this is so sad to hear! Hopefully he'll get a lot of help from the trials.
You don't need any new problems right now!! May God help you.
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daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
So very sorry, can't imagine what you're going through.
Praying God goes before you and your precious son and makes the path straight, working out the details, best doctors, best treatment with great results. May he respond very well to the treatment. May everyone deal kindly and compassionately with him...and you.
God's healing touch for you both.
Peace!
Posts: 2188 | From Oklahoma | Registered: May 2008
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posted
Merrygirl...there are many moms here whose children have gone thru the PANDAS and PANS diagnoses. You may want to ask for feedback over in Medical Questions.
God Bless.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Praying for you and your son, merrygirl!
Big hugs!!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Thanks everyone. I am worn out. I cant even imagine what next week will bring.
I appreciate all the good vibes and prayers.
Posts: 3905 | From USA | Registered: May 2007
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Praying for you. My daughter had it after a bout of strep; it pretty much cleared up on it's own. Her doctor actually believed in it. Many do not.
She still has some OCD tendencies, but nothing major.
Take care and God bless.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Praying for you. My daughter had it after a bout of strep; it pretty much cleared up on it's own. Her doctor actually believed in it. Many do not.
She still has some OCD tendencies, but nothing major.
Take care and God bless.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
Prayers for you, I'm so sorry to hear this!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
Prayers from me too. May God bless him !
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Oh, so, so sorry.. Breaks my heart for children to be sick. Many Prayers..
Posts: 1058 | From VA | Registered: Oct 2010
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
are you sure there's nothing i can do? i don't know anything about kids but maybe a care package or card would cheer him up.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
certainly a card would be appreciated! He would get a kick out of that!
I am so nervous that something is going to happen that will disqualify him from being able to participate in the study. It something as minor as a cold will keep us home. I wish we were leaving right now, so I dont have to worry about this stuff anymore!
I have to keep telling myself that whatever happens is meant to be. I do have a back up plan. But I hate this waiting.
Posts: 3905 | From USA | Registered: May 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
send me you address again. sorry i lost it. i'm going to the eye doctor today and will be out and about.
are you sure maybe he wouldn't like a toy or something??
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I will send you a PM.
Posts: 3905 | From USA | Registered: May 2007
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
We have struggled with this as well. I will send you a PM.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
God bless you, Mama. I pray for his complete recovery and acceptance into the program. I wish rest and peace for you and your family.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
I am so sorry to hear about this Merrygirl. I will pray for you.
How's that little baby doing?
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Thanks to all my friends here. I really appreciate knowing I can come here and get the support I need. Thank you a million times.
The baby is doing fantastic! 3 months old today! I can' t believe it. She is so strong and beautiful. Its going to be sad to leave her for 6 days. Hopefully she wont forget me.
Please let it be Sunday already.........
Posts: 3905 | From USA | Registered: May 2007
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
I didn't know you had a baby too. Wow, you must be exhausted. I remember those days.
Maybe you can skype with the baby?
Good luck. I hope the weather is good for your trip.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
yes she just turned 3 months! I am beyond exhausted, and in pain. Not going to be able to see llmd til january due to finances.
might be able to scrape up some meds until then but feels like the "stuff" is hitting the fan!
Posts: 3905 | From USA | Registered: May 2007
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posted
I bet you're nervous! This does sound exciting and promising, though. My prayers are out for you.
My son's Lyme looks EXACTLY like the PANDAS stuff.
He has every single symptom on the list, no strep, and plenty of WB bands.
-------------------- Never doubt in darkness what the daylight proves to you. Posts: 418 | From Utah | Registered: Apr 2009
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Its my understanding that a lot of kids with PANDAS also have Lyme and co's. PITAND is another term that is used.
I am so nervous my stomach is hurting, I cant believe we leave the day after tomorrow.
Posts: 3905 | From USA | Registered: May 2007
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Hang in there merrygirl...we are praying for you. Will ask the Lord to send you his peace...worry never, ever changes the outcome...it just makes it hard on you...can you ever remember a time that a bushel full of worry ever changed anything?
Worry doesn't do anything but make you stressed and sick...just tell yourself you are doing the best you can and leave the rest up to the Lord.
And that is the Truth.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Update: we are on our way home.. things went very smoothly. He is officially diagnosed by the nih (put that in your pipe and smoke it pedi) it is also pretty clear he got the ivig and not placebo. He had headache, nausea and vomiting. Saline doesnt do that.
The doc agreed. they said the next 2 weeks willbe up and down but if he did get ivig, this should cure him as long as he doesnt get strep. He will be on long term abx.
I am so happy i did this and it didnt cost a penny.
Posts: 3905 | From USA | Registered: May 2007
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
That is awesome news mg. Yes, it is a long term treatment.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Glad you survived it all too. Take extra care of you and yours the next few days.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Oh, Merrygirl...the Lord is working mightly in your life!
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
Praying Merrygirl !! Trust in God, you are such a good mommy !!
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Merrygirl, what a relief it must be to finally have your son properly diagnosed and receiving the treatments that he needs to get well!
Will he continue the IVIG treatments along with the antibiotics for awhile? If he has to have another IVIG infusion ask the doc to add orders for extra IV fluids pre and post infusion to help prevent the headaches, nausea, and vomiting. This really helped me so I thought it might be worth mentioning.
Take care Merrygirl. Hope you can get some rest and enjoy being back home Posts: 5237 | From here | Registered: Nov 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Thank you all. He may get ivig in 6 weeks again if he isnt well. But if he did get ivig, this one dose would be considered a cure and he SHOULDNT need more, but its not ruled out. Again it was a blind study so we are not 100% that he got it, BUT saline doesnt make you sick. i am so greatful. This was a difficult decision, but the best one i prob have ever made.
My poor buddy endured so much this week.
I know i am about to crash and burn myself especially since i xant get to llmd til after january. but at least he has what he needs.
It looks like my daughter has strep so i made hubby take her to.urgent care. I broke town in hysterics went i looked in her mouth. i had been home 1 hour. Sheesh.
She gets her tonsils out in 2 weeks thank goodness.
Pleaae continue to pray for us.
Posts: 3905 | From USA | Registered: May 2007
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
You have so much on your plate. God bless you.
I am so proud of you for going after what you felt led to do
God bless you and your whole family - WITH GOOD HEALTH!
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Many blessings to you and family!
Posts: 9834 | From Washington State | Registered: Oct 2000
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Good luck to you and your son. this must be the hardest on him. I can't imagine having diseases such as these in one's childhood.
It sounds like you are moving forward, for sure, so keep up the good, albeit difficult work; it sounds like your boy is lucky to have you as a mom. :-)
jedidano
Posts: 116 | From North Carolina | Registered: Apr 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Sending good thoughts for recovery-
I have a child that was dx'd with pandas.
Turned out to be Lyme and co-infections (I think Bart looks like pandas in children) This was how I found out I had Lyme and co.
I has passed it while pregnant and breastfeeding- Never in a million years did I think Lyme.
We had 2 IVIG's for child with pandas before we knew about Lyme, about 6 weeks apart. First one was one big herx- 2nd one did bring wonderful relief, but it only lasted for 4 weeks. That was when we looked into Lyme. Wishing you the best-
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I just sent him to school 1/2 day kindergarten. Breaks my heart. I worry about him He is physically fine no restrictions etc. But that place is a germ factory
Posts: 3905 | From USA | Registered: May 2007
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
That would be hard....but maybe makes him feel better to be in school....
You have had a a rough couple of weeks.
May you be blessed with rest, peace and health!!
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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