New Here - just an intro

[MommyX3]

Hello. My husband and I have come upon several posts from this forum regarding PANDAS. Our DD8 has had rages for some time now, perhaps a couple years even. She has a creative, bright, loving personality, but has always been very sensitive as well. However, in September, she started having severe separation anxiety at night. Even as a toddler she never had it like that. At first, I saw many kids start around 8 with this type of anxiety. However, it came along with a never ending stomach ache. Part was constipation, part was reflux which were ongoing problems at times for her, but after those were tended to again, she still had pains and an obsessive fear of throwing up, mostly at night. Everything is at its worst at night. We have had issues getting her to school, despite her loving school and making wonderful grades. She is acutely aware of every ache and pain in her body, as comes with anxiety issues. So, when the stomach issues would start, she would get nervous she would throw up in front of classmates and would ask to go to the nurse. I would need to pick her up. She has missed 14 days and over 22 part days this year. She never missed like this before. Her brother and sister (triplets - all in the same class) have not missed one day this year thank goodness.

 

She is rather obsessive about making sure food is not spoiled. She worries about it being bad. Despite that, we are lucky she loves food and tries to eat what she feels won't upset her stomach. She has no tics. She worries about health issues and dying. Her brain quickly gets away with her. During homework this year she would go "crazy" if I pushed for her to do it. They were crosses between the brain fire/possession/rage I see mentioned on here. It has been terrible to watch her deal with this all. Then, in addition, she lost 6 pounds during the fall and had dark circles under her eyes frequently. She has begun having pains in her upper back, first shoulder blades and now her spine as well. We are also now dealing with her hearing noises in her brain at night - first a beeping sound and now screaming in her head. It is very alarming and worrisome. I wish I could just hug her tightly enough to make it all go away. It's been emotionally and physically draining for me, because I am sick as well and unable to care for her as I would have otherwise.

 

I am a mother who has had ME(CFS)/FIBRO/Hashi/high RA factor for 17 years. I have at times been housebound with the disease and bed bound for short periods of time. So, I do know the autoimmune world well at this point and have advocated for ME/CFS issues. Our family medical history has 2 people with epilepsy (my husband and my sister), my mother with ME/CFS, my MIL with ME/CFS/Dysautonomia, and brother with Diabetes1 and his wife and 2 daughters with Sjogren's/Fibro. My daughter is unfortunately set up perfectly for this sort of issue. Her anti D-nase B Strep is 273, but most of her immunoglobulin and IgG subclasses are looking ok right now. We are fortunate that we have a pediatrician who knows what this is. We found Dr. Azam Baig on the PANDAS network as a provider and lucked out that he had just opened an office nearby. I am hoping I can talk him into running further tests that a friend whose son is a patient of Dr. T told me about. There are a few I want to add as well that my specialist performs on me. I think hormones at this age are greatly overlooked as a way of understanding the entire picture. My specialist is seeing insulin resistance in girls as young as 11-14. This will increase all inflammatory factors for anyone. I can only imagine what it would do to a child near puberty. Viruses and bacteria feed on inflammation. I know from experience.

 

Our plan is to keep getting a clearer picture of her immune profile. Try neurofeedback for some possible relief from the nighttime anxiety. Make sure there is nothing else neurologically incorrect in her make up. Call Dr. T for a consult if I cannot get the right labs run from these other doctors. And then think about another round of ABs if we must. She is still dealing with a yeast infection from the first round. And we will never try clindamycin again. Terrible stomach pains and diarrhea.

 

I look forward to more help and support here. It is good to know what we are dealing with finally. I am hoping if we can arrest any immunological/viral/bacterial insults to her system now, we might prevent her from going down the road I have had to deal with with ME/CFS. Thank you to anyone awake enough after a long day who read this. :-)

 

 

 

We have an appointment with a neurologist who does neurofeedback and is my husband's doctor as well. He is a kind man, but I do not know what he knows about PANDAS per se. His nurse said they are seeing a growing number of patients and they made a big gesture to kick a patient out for tomorrow's 11am appt instead of making us wait until August 16. At least he sees it as important.

[Ozimum]

Hi there and welcome. It's brilliant you are onto this and getting some testing done. I'm thinking that there's a really good chance there's an infection trigger at play here. Good luck! and keep us posted.

[gunillafromsweden]

I cant really se in your post if she is actually throwing up (or just fears doing it). But since my son (dxd with PANDAS) is now considered possibly having an autoimmune encephalitis (there are several forms of those), I just read a report on these conditions, they all may look like PANDAS in symptoms, but one of them is associated with vomiting, it's called "CNS anti-AQP4 autoimmunity", I just thought you might want to check for that one too, when taking tests.

[3boysmom]

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