Letter to grandparents of a child with PANS/PANDAS
Dear Grandma and Grandpa,
If you’re like most grandparents, you truly care about your grandchild. Maybe you’re wondering what’s going on with the kid? Is it behavioral? Is it the fault of your child-in-law? Could this be some genetic defect from the OTHER side of the family?
And why aren’t your kids doing more to help their child? They tell you he has some unusual disease–PANDAS or PANS. But you wonder if their child is acting up for attention. He seems OK to you, most of the time, especially if you’re watching him. It’s when his parents come home that he starts acting up.
You have good questions and you deserve explanations. You play such an important role in the lives of your children and grandchildren. They have never needed you more. So it’s integral that you know the difference between fact and fiction.
Myths and Realities:
1. The child acts up only for her own parents.
Actually, you are lucky if the child can hold it all together when she’s with you. These children are medically ill. They have a disregulated immune system. When exposed to germs, their body makes antibodies that then attack their brains. They often have tics, OCD, separation anxiety. If they seem OK with you, they are either in a healthy place or expending energy to make it seem that way. The safer they feel with you, the more they will allow you into their medically ill world.
2. It’s just strep throat.
Actually, PANS (Pediatric Neuropsychiatric Acute-onset Syndrome) can also be triggered by Coxsackie virus, flu, pneumonia, and more. Lyme disease seems to play a large role. Lyme disease is often accompanied by other tick-borne infections like Bartonella and Babesia. Some of our children are now immune-deficient and any tiny germ can set off a flare.
3. The kid had his tonsils out. How can he still be sick?
Read the above. Also, strep can hide out in other parts of the body. That’s why more and more parents are giving their child supplements to help treat the gut.
4. This kid isn’t getting better.
Unfortunately, there are very few doctors who understand PANDAS/PANS and treat it. Every child is different; there is no one cookie-cutter way of treating PANDAS. There are so many factors involved. Some children can be healed completely, some immediately, and others can take years. There are adults walking around with PANDAS. But children ARE getting better. Perhaps they will never be completely rid of this disease. Perhaps they will. It’s too soon to know.
5. The parents let the child get away with a lot. In fact, the child is back in the parents’ bed!
Ahhh. This is part of the separation anxiety. I’ve read of 16 year olds who are sleeping on mattresses in their parents’ rooms. It’s almost non-negotiable. If the family wants to sleep, it must take care of the very ill child who experiences increased anxiety at night. Stress exacerbates symptoms. Parents have to learn to choose their battles. These kids might not be able to handle chores. Or showers. They often have sensation issues that they never before had.
6. The child needs to go to a hospital.
I wish! Unfortunately, almost no hospitals treat PANDAS/PANS. There are no hospitals to my knowledge that treat chronic Lyme disease. In most cases, children who are acting in a way deemed to be psychiatric are placed into psychiatric wards. Some of these children are removed from their parents’ custody. For more information, google Elizabeth Wray. Her parents and grandparents supported her fully, moving her from one hospital to another in search of a wonderful doctor who could help her. Alas, they ended up at the renowned Boston Children’s Hospital and then their nightmare began. BCH removed custody from her parents. A gag order was placed over the family. I attended a rally to support the Wrays.
7. There’s nothing I can do.
Yes, there is! If possible, watch the children for a couple of hours so that the parents can get out together. It’s hard to keep a marriage together when there is so much trauma. Help financially. Many of the best doctors don’t take insurance. Medicines, supplements and IVIGs cost a great deal of money. Often, one parent must stay home to care for the sick child. Families suffer financially. Offer hugs. Offer emotional support. Listen. Don’t minimize what your child and in-law are experiencing with their own kid. Assume you don’t see the worst. They do, and they’re keeping their family together. It takes a lot of strength to do this. Show your respect.
8. My doctor said PANDAS is over-diagnosed.
Doctors can be wrong. They’re people just like you and me, and if they haven’t experienced anything like this before, they just don’t know. Furthermore, the American Pediatric Association is just starting to recognize PANDAS. There is not enough awareness yet. Not enough research. Help to educate your doctors. You might save the life of another child.
9. My grandchild is on way too much medicine.
This hurts, doesn’t it? Looking at all those pills. Visiting when the little guy goes for a plasma infusion. No parent would do this unless absolutely necessary. Have faith in your children’s decisions. It is breaking their hearts to do all this. They have probably already been to at least a dozen doctors.
10. The child doesn’t eat/is a picky eater. The parents insist on a dairy-free, gluten-free, sugar and soy-free diet. It’s ridiculous.
Many of our children are on gluten-free diets. Gluten can be inflammatory. Some of these kids have shown sensitivities to different foods: gluten, yeast, dairy, sugar. It’s important that we support the parents in keeping to these strict diets. Why? Because when the child is overloaded with stressors, including food, the medical symptoms increase.
My own son had OCD-induced anorexia. Ironically, now that he is on a strict diet that eliminates the foods that can result in more antibodies, he is eating better. If you’re able to cook foods that he enjoys while keeping to his restrictions, you’ll be a hero. Believe me. My mother-in-law came to the house with gluten-free, yeast-free, dairy-free, peanut-free brownies. My son was in heaven.
Want to know more? You can read about PANDAS here: http://www.panslife.com/whats-pandas/. Also, PANDAS Network has an excellent site.
We need you on our team. It’s a nightmare for many of our families. The things is…if this disease is caught really early, it can be treated much more effectively and possibly eliminated. Someday, the medical community will know as much as you do. That’s right. If you’re a grandparent of a child with PANS or PANDAS, you know more than many doctors.
Thanks for being here,
Lisa Kilion created the PANS Life blog to offer support and education to families grappling with this difficult condition. She moderates several PANS/PANDAS support groups on Facebook, has participated in educational conferences, and has started an in-person support group in New York.