Several months ago we opened a GoFundMe for our son. By some miracle, there was an instant flow of kind words and generous donations and we met our budget of 10k in less than 24 hours. We used every penny towards doctors and medication. We were so careful where every penny went. Our son had a transfusion and for a month there was a huge improvement, and then it was gone. The doctors had told us this was a possibility because his strep numbers were so high. He would need another treatment. Sadly it was out of our budget. We had closed the page because I was entrusted with all of your hard earned money and wanted to know where it was all going. I did not realize how expensive this journey was.
We are going the route of private doctors now. Because after all these month of false promises and unsuccessful medication routes, we finally found someone who has been making instant changes in our son. I wish we can bring my older son, who is suffering greatly, but this child is a priority. He was admitted to a psychiatric hospital for 2 weeks. The other is stable in his status, even though not great.
We have been putting these bills on credit cards, not wanted to ask again, but it is now too much. So here we are asking for any help. We aren't going to share it on every forum like we did last time, we are just going to keep it open. So if you know anyone who can help, please pass it on. We know how things are not easy out there for everyone and I hate asking... Thank you for reading.
How It Began:
We have five children and money is tight. Several health bills, surgeries, endless therapy, and ER visits, but a health insurance that kicked in every time. Until it didn't. So here I am... Begging you to give my page another glance. Hoping that you can even give just a dollar. Praying that you know a lot of other people who can find that kindness in their hearts to help a complete stranger. I also want you to know, I am here to update you and share with you our progress, to the best of my abilities. All this I hesitantly write, as I am generally paranoid about putting our life or personal pictures in the big world of internet. But this time, we are desperate.
September of 2016, our middle, 7-year-old child went from being the sweetest, happy-go-lucky kid, to someone I did not recognize. To say that I handled it with grace, would be a lie. We were all in such shock and had no idea that his behavior control was so far out of his reach. We tried all the typical consequences for severe defiance and nothing helped. It was worse than I could ever imagine. Objects were being thrown or broken. There were dents in the walls. There were loud shrieks that left everyone crying with their fingers shoved deep in their ears. He began hiding all over. I would find him in tiny spaces under the beds, or inside 18 gallon storage buckets way up on the dressers. He exploded with verbal and motor tics. You could not stand next to him without getting constantly tapped and touched. He was snapping so much he couldn't play sports. I would hide in my bedroom bathroom, closed behind two doors. I honestly don't know how he did not kick down my main door. It is a miracle how it still stands.
He started hoarding candy and ice cream. I was locking doors and freezers. Still, I found hundreds of wrappers in his bed, or in his pockets. I found melted ice cream mounds in my basement closet. He stopped eating normal food, only found sweets and cheese. Even when mine was hidden or locked, he found from different places. He was caught on school cameras. He stopped writing in school and was so defiant, the teacher was not sure what to do. OCD kicked in. He was creating the same pictures over and over, singing the same songs over and over. He was missing in school daily, for 20 minutes at a time. He called me like clockwork from the nurses office, twice a day. It took 20 minutes to drag him out of the car each morning for school. The change was terrifying. He started hearing voices and was petrified. I had no idea what to do. My own husband was scared to come home.
I quickly brought him to a pediatrician who said kids sometimes change like this and I should give it time. I couldn't. I signed up to parenting courses and immediately made appointments by anyone who would see us. The trips to many doctors and travels all over until I found someone who heard us, is too lengthy to share. A complete stranger on Facebook changed everything. She said I should look into PANDAS. Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections . He met almost every symptom in the text. Finally, we had reached our hope. It was a real thing, not a figment of our imagination. Not poor parenting skills. But yeah, a strange name. Not sure what the cute furry animal did to deserve it :)
I am finally hearing more and more people acknowledging this disorder. We have October 9th as an awareness day. Parents are fighting and their voices are slowly being heard. This is my turn. The strep range in the blood is supposed to be 0-200 and his numbers were at 1,390. The inflammation it must be causing in his head, makes me want to cry. The reality that he has no control, is so painful. The physical and emotional pain that he is feeling, makes my chest hurt. But to move on, we must.
And the biggest shock was that my 9-year-old son tested positive as well. We had been struggling with him for more years than I can remember. He has been through all kinds of therapy and testing and was titled with several big names from the books, but no medicine brought him relief. He had severe phobias of being poisoned from cleaning supplies, and crippling anxiety. The doctor seeing my other son had noticed him and told us to have him tested. Thankfully after several antibiotics, and a large daily pill box, we have finally gotten him somewhat stable.
Sadly, however, for my 7-year-old, after several rounds of 4-5 long term antibiotics and steroids, there was no change. The debilitating stomach cramps and headaches and body pains were too much for him to handle. Too much for all of us to handle. The stress level in our home was beyond coping levels. We were directed to Dr. Beth Latimer, a well known PANDAS specialist and pediatric neurologist, in Washington D.C. Due to his frail body and low food intake, she recommended immediate removal of his large, red, blistery tonsils. Following that she wanted him to come in for a procedure called IVIG . This is the immunoglobulin plasma transfer of donor blood, through intravenous. The procedure is not covered and the costs are high. For his body weight it will be $8,500.00 or so just for the procedure. This is not including the travel, parking, follow up appointments, or any extra IV meds/steroids that he may need. Just to meet her for a consultation was $1,200.00 that we had to borrow.
I understand how the economy is not great and everyone is struggling to get by, but every dollar will help. Every dollar will go towards his treatment and towards the expenses for supplements and medications that we pay out of pocket. If by some miracle I get even a penny more, it will go towards treating my older son. But for now, this money is critical for my younger son's survival and quality of life.
I am so grateful for every cent given. Even if you can't, please share in the hopes there will be someone who can. Thank you so much for your support and time reading this. Please look into the links on PANDAS and spread the word of this debilitating condition. We need to get insurance to recognize it as it is. All the best, and G-d bless.
PANDAS card source
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