Help Emma get this treatment

$7,220 of $20,000 goal

Raised by 70 people in 31 months
Jennell Keller
on behalf of Jen Haines
 HANOVER, PA
This is Emma Haines.   On 4/27/16 Emma and her family received devastating news about her health. She was diagnosed with Pediatric Autoimmune Neuropsychiatric
Disorder Associated with Streptococcal Infections also known as PANDAS.  PANDAS
occurs when strep triggers a misdirected immune response resulting in inflammation
of a child’s brain.  Some symptoms can be anxiety, OCD, fatigue, loss of different cognitive abilities, fear of choking while eating, weight loss, emotional distress, tics, personality changes, decline in math and handwriting abilities, etc.  These are
just a handful of symptoms that are life changing, debilitating and deteriorating.

The treatment path that would help Emma best is heavy antibiotics to prep her body for IVIG.  IVIG is an intravenous blood product (the immunoglobulin element of
donors blood) that is regularly given to children and adults alike who have certain  immune deficiencies. The hope is that the donor antibodies may “retrain” the abnormal  antibodies in the patient or the large amounts administered may simply overwhelm
the harmful antibodies – thereby removing them from the PANDAS patient. It is a process done over a few days. Results vary from a few days to months to a year for severe cases. In seeking  treatment as soon as possible we are hoping to steer clear of having her in the severe catagory.

Unfortunately, the best path for Emma does come at a cost. It will be at least $10,000. 00 for each IVIG
treatment. Insurance will not cover this treatment.  As a community, we are a family and we need to take
care of each other. Our goal is to support the Haines family in every way that we can and we need to
raise this money so we can get our Emma back.  She has too much to do in this world!

Emma is a triplet (2 girls, 1 boy) who is in 5th grade.  She likes to do things 11 year olds do like riding bikes, playing outside, swimming,  joking with friends and family. She is very artistic and wants to grow up to be a
veterinarian.

Any donation will be greatly appreciated! Every penny counts. Thank you for supporting the Haines family.  Keep them in your prayers and thoughts.
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Emma is a fighter! Two years from her original diagnosis she has made some improvements and fights hard every day. We are now traveling to New Jersey every week for Emma to have an IV infusion. We see glimpses of our Emma returning. She is still having headaches daily, has extreme anxiety, and sensory issues. We are grateful to report that she is able to eat again which has been the biggest blessing so far. Unfortunately, the weekly infusions and out of state travel are overwhelmingly expensive. Insurance continues to refuse to pay and so we as a family are in need of some help from our community of friends and family. Please know there are no words to express the deep gratitude our family has for everyone who has and continues to support and pray for Emma. God bless each and every one of you!
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Emma's treatment went well last week. She had lots of nasty side effects but they seem to be getting better. Now we just wait and pray for her brain to start to heal.
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Emma is scheduled for IVIG on 6/7 & 6/8. Please keep her in your prayers.
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We would like to thank everyone for their love and support. The generosity is truly amazing.
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Read a Previous Update
Jolie Swyrtek
29 months ago
1
1

Our Campaign is Help Joshua get that smile back. You can read his story on his Go fund me page. God please heal these children......

+ Read More
Jolie Swyrtek
29 months ago
1
1

My heart goes out to your family. Our son was diagnosed with PANDAS in March 2016, his symptoms started just before his 6th birthday. I truly hope things get better for all of these kids. Please feel free to contact me. I have found some AMAZING support groups. Caring for a child with PANDAS is physically, emotionally and financially draining. Your family is in my prayers.

+ Read More
Tori Vandervest
20 months ago

Hey, I saw the donation jar for Emma at Baughers farm and I wanted to reach out to you. I had a very severe case of PANDAS when I was younger and I was involved in a case study by NIH to test different treatments for PANDAS. I was prescribed a daily dose of penicillin for a couple of years until I hit puberty and the more serious symptoms of PANDAS went away. I know I don't know everything about Emma's case but I do know that this treatment is not the only one that works and that there is alot of controversy around prescribing antibiotics on a regular basis ESPECIALLY for PANDASbut it was painless, more cost efficient and it helped me and my brother. Its been 9 years since I stopped taking the medicine for it and while I do still have some anxiety, my OCD has almost completely subsided, I no longer have tics, my motor control is completely restored and I've had no noticeable impact from taking antibiotics. I just wanted to reach out and say there is another treatment. Regardless if you take my advice or not, I wish emma and your family good luck.

+ Read More
Dolores Claesson
28 months ago

Many with PANDAS have tick borne pathogens. Please get Emma tested for all of the known ones. A full western blot for lyme disease would be one of the tests. Igenix labs in California can do it or Quest or Lab Corp. Bartonella infection can also be associated. IVIG can be covered by insurance if Emma's IgG sub classes 1 through 4 are low and if she makes scant antibody production to strep pneumonia. CVS pharmacy has been giving IVIG to kids that have PANDAS and your pharmacy arm may cover it with your insurance. In other words, the pharmacy section of your insurance may cover it but not your actual insurance company. Contact the human resources officer if you obtain your insurance through your employer and explain to them the situation.

+ Read More
Deborah Gould Marcus
28 months ago

Please consider a second opinion on treatment. My daughter has PANS and has gotten much better without IV treatment under Dr. Bouboulis in Darien, CT. Praying for your daughter.

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$7,220 of $20,000 goal

Raised by 70 people in 31 months
Created May 6, 2016
Jennell Keller
on behalf of Jen Haines
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$300
Anonymous
3 months ago
NC
$100
Nicole Wilson Matt Cunningham
3 months ago
1
1

Happy to help !!!!! Stay strong kido!!!

KW
$50
Kristi Waybright
9 months ago
1
1

Love you guys - get better Emma!!!

WM
$100
Werner and Kerry Mueller
28 months ago

You're in our prayers.

Jolie Swyrtek
29 months ago
1
1

Our Campaign is Help Joshua get that smile back. You can read his story on his Go fund me page. God please heal these children......

+ Read More
Jolie Swyrtek
29 months ago
1
1

My heart goes out to your family. Our son was diagnosed with PANDAS in March 2016, his symptoms started just before his 6th birthday. I truly hope things get better for all of these kids. Please feel free to contact me. I have found some AMAZING support groups. Caring for a child with PANDAS is physically, emotionally and financially draining. Your family is in my prayers.

+ Read More
Tori Vandervest
20 months ago

Hey, I saw the donation jar for Emma at Baughers farm and I wanted to reach out to you. I had a very severe case of PANDAS when I was younger and I was involved in a case study by NIH to test different treatments for PANDAS. I was prescribed a daily dose of penicillin for a couple of years until I hit puberty and the more serious symptoms of PANDAS went away. I know I don't know everything about Emma's case but I do know that this treatment is not the only one that works and that there is alot of controversy around prescribing antibiotics on a regular basis ESPECIALLY for PANDASbut it was painless, more cost efficient and it helped me and my brother. Its been 9 years since I stopped taking the medicine for it and while I do still have some anxiety, my OCD has almost completely subsided, I no longer have tics, my motor control is completely restored and I've had no noticeable impact from taking antibiotics. I just wanted to reach out and say there is another treatment. Regardless if you take my advice or not, I wish emma and your family good luck.

+ Read More
Dolores Claesson
28 months ago

Many with PANDAS have tick borne pathogens. Please get Emma tested for all of the known ones. A full western blot for lyme disease would be one of the tests. Igenix labs in California can do it or Quest or Lab Corp. Bartonella infection can also be associated. IVIG can be covered by insurance if Emma's IgG sub classes 1 through 4 are low and if she makes scant antibody production to strep pneumonia. CVS pharmacy has been giving IVIG to kids that have PANDAS and your pharmacy arm may cover it with your insurance. In other words, the pharmacy section of your insurance may cover it but not your actual insurance company. Contact the human resources officer if you obtain your insurance through your employer and explain to them the situation.

+ Read More
Deborah Gould Marcus
28 months ago

Please consider a second opinion on treatment. My daughter has PANS and has gotten much better without IV treatment under Dr. Bouboulis in Darien, CT. Praying for your daughter.

+ Read More
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