This has not been easy. She is feeling very tired, more migraines, wants to sleep all the time. She has an MRI today to see if there are physical causes for the migraines and scrolling vision, but I am taking her back to the family doctor today to ask for blood work to rule out anemia and mono. Got to cover all the bases. Maybe liver and kidney panels too. Her thyroid biopsy is on Monday. When I called the recommended pediatric neurologist they said they could see her at the end of February. Yeah, I don't think so. So now I have to start the referral process over again to find a different practice.
In the meantime, I have been feeling completely exhausted myself, wanting to sleep all the time too. I have had a virus, but I hope this fatigue goes away. I have a complete household to unpack and I have made very little progress between Caroline's many phone calls from school and meetings with staff, etc. I think I have spent as much time at the high school because of her issues as she has been absent from the high school. I seriously do wonder if homeschooling her would be easier. This is getting old fast. We need answers soon or we might pull the plug just to keep her grade point average from going so low that getting into college would be seriously jeopardized. I don't know if her meds need a big change or if all of these issues are being caused by something else. Frustration is the mood here and deep concern. She really wants to succeed in going to school and getting good grades. This isn't avoidance. Lord, please show us what is going on!
My dear friend.
ReplyDeleteI love you.
Rayanne
I have mentioned it before, but please take another look at PANDAS/PANS. Your daughter reminds me of mine. Bipolar symptoms are a symptom of the PANS/PANDAS. So many children including my daughter get diagnosed with Bipolar when the issues originate from an infectious cause. We treat with antibiotics and Amantadine and have gotten further than any Bipolar med (which we have tried). You mention having a virus and I read through the blog and so many instances when you are talking about your daughter, there is a kidney infection or sickness involved. Just want to throw this at you one last time. Feel free to ignore. I know you know best. I just know what we have been through and what has helped. There are some good PANDAS/PANS docs out there.
ReplyDeleteI agree with the PANDAS. Many children on the autism spectrum have this too. I would also recommend a DAN doctor and look at a biomedical approach as well.
ReplyDeleteAlso consider gluten or other food sensitivities- I know it sounds far out. Really, I do.. but it has helped my daughter with stomach, headaches and hoping it will help with fatigue and at least partially with moods. I know it won't help everyone but worth a try!
ReplyDeletepraying things get better for you soon.
ReplyDeleteI know it's a Catch 22 situation but she seems to be on SO many meds these side effects seem to cumulate and get worse over time.
ReplyDeleteI suggest going to a doctor who understands some biomedical intervention which maybe can be paired with the meds she must take. It seems the meds may help but the side effects just make other matters worse.
Look to the biomed information on the autism websites (Age of Autism is one) as there are a lot of parents having success with DAN! protocol. Also, just my opinion, but continuing to vaccinate and putting more of those ingedients into her system (aluminum for one) is making her worse, trust me. Research vaccine effects on autism, bipolar, J diabetes, childhood cancer and it will astound you. Doctors do nothing but brain wash parents into thinking they need every vaccine under the sun. The sheer number of vaccines used today are truly destroying the health of kids everywhere.