MaryAngela

My son sees Donald Raden MD in Highwood, Illinois. He also just opened an office in Skokie. He does not take insurance, but has been successful getting my son’s monthly IVIG covered for 3 1/2 years.

@worriedmom123 We only used the Synapsin for 1 month. My son said he would feel a “sudden jolt of happiness” immediately, but we were hoping for more help with his focus during school. I didn’t refill the prescription, because DS had a sinus infection and I didn’t want to use it then. We will probably try this again in the future.

@BeeRae22 What treatments are you currently using? I may be able to offer some suggestions.

@kimballot Thanks for the encouraging post. Do you mind sharing what the treatment is for mitochondrial disorder?

It is my understanding that Inositol dose must be really high to be effective. When we tried it years ago for my son, it caused gastrointestinal issues. Bowel movements the texture of peanut butter. We use 5-HTP for anxiety. Be careful, not to use if your daughter is on an SSRI, though.

@veronika47 In 2016 a rheumatologist prescribed a high dose Augmentin for my DS based on severe OCD/tics. We started the abx before his labs were back. His strep titers came back normal, but she said ok to continue abx. After 10 days, his symptoms began to rapidly disappear. Could it be that he was still reacting to strep exposure too long ago to show up on titers? Also, she did not test his Mycoplasma titers.

@bws1565 My DS now 15 had PANS symptoms since he was an infant. He didn’t have MMR until he was 9 or 10 years old. I believe he had a reaction to DTaP at 6 months old, though.

@Robinhubb It’s common for insurance to deny first IVIG request. Is the doctor sending an appeal letter? My DS’s IVIG was approved after peer-to-peer call with insurance physician. It was submitted under Autoimmune Encephalitis code. Also our MD uses Briova (infusion service) for IVIG. They handle the appeal. DS has been getting monthly IVIG for over 2 years. It saved his life.

@Ashly My DS’s strep titers were normal in Spring of 2016, but Rheumatologist said to try antibiotics anyway. 6 or 7 of his tics went away completely. The 7th went away with IVIG. She said that the abx may have an anti inflammatory property or although there was no recent strep exposure, the misdirected immune response (attacking the brain) never shut off from the last strep exposure.

When we first used this in 2015, I think we worked up to the 900mg 3x daily over 3 weeks. Try doing a Google search of the Yale clinical trial. We probably followed the dosing from that, as far as what to start at. My advice if you go the medication route, is that less is more. The first time we tried Prozac it was a disaster, but had some success years later on a very low dose. Most of the antipsychotics cause aggression if the dose is too high. Be sure to document behaviors and doses. Your son’s symptoms sound like PANDAS/PANS. Have you gotten strep and mycoplasma titers done?

At the time we had the most success with NAC, DS had just been weaned completely from all meds due to side effects. He had been on prescription meds for 2 1/2 years, which helped OCD a bit, but not tics. The meds made him aggressive, negative, hateful, revengeful, etc. Although doctors told me it was coincidental and not from meds. He developed priapism from the meds, and finally we were told to wean him off everything. That is when he started the NAC. Within 3 weeks we had our happy, good-natured child back, after 2 1/2 years of misery. This lasted for 7 glorious months, until he experienced his most severe onset of PANS. Current MD linked this to Miralax use. If your DS has ever used Miralax, I will share the details.

@Ashly We had huge success with NAC for my DS a few years ago. We used a high dose (900mg 3x a day). This was the dose from the Yale clinical trial. It may have taken 3 weeks before we saw improvement with OCD and tics. Current MD says it’s important to use magnesium along with NAC. DS 15 is currently getting HD IVIG, but recently asked if he could start the NAC again (which we resumed last week).

@xh1688 My DS now 15 had very similar symptoms about 2-3 years ago. When his OCD was triggered, he would need to get completely undressed (even in public). This was the only thing that would cleanse his intrusive thought. He said that the compulsion was so strong, it didn’t compare to the embarrassment of being naked in public. He was triggered so often that he stayed naked at home 90% of the day. He also had tried to get out of a moving car when his OCD was triggered. Antibiotics had worked beautifully for a month, but MD wouldn’t prescribe that dose for any longer, and he regressed on lower dose. Ultimately a PANS specialist determined DS was experiencing encephalopathy which was triggered by Miralax. He has been receiving monthly HD IVIG for almost 2 years. His OCD is 80% gone.

It is prescription. It’s made at a compounding pharmacy. I was hoping my DS would start last Saturday, but it wasn’t shipped when I thought. Should arrive tomorrow. I’ll keep you posted.

I saw one positive post on Synapsin nasal spray. My DS 15 will be starting it today. He was a severe PANS case. OCD and tics 80% gone from almost 2 years of monthly HD IVIG. He still has focus, anxiety and executive functioning issues. I’m wondering if anyone else has tried it, and how it worked out.