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.

@mamafour What dose of Azithromycin for your child’s flares and for how many days? How old is your child?

I don’t recall the dose because it was the liquid form. He took it 3x a day for 30 days. I believe it was the equivalent of 500mg 3x a day. DS was 11 at the time. When it was lowered to 2x a day, it stopped working.

My DS responded very well to Clarithromycin after showing high Mycoplasma titers. It’s common for kids to get yeast issues from antibiotics even while taking probiotics, so it’s important they have the probiotic 2 or 3 times a day. Be sure to space the probiotic at least 2 hours away from antibiotic. I’ve used Gutpro (expensive) and Jarrow (reasonable). I wouldn’t skimp and use a generic grocery store or drug store brand. Yeast can cause issues itself. I also give my DS a yeast control supplement, especially while on abx, and for a few weeks after. We’ve used Candicid Forte and OrthoFlora yeast support (Protocol for Life Balance). I’m sure Whole Foods also sells yeast control supplements. I prayer that your daughter finally gets some relief from the abx. Keep us posted.

My nephew is currently experiencing eye pain after HD IVIG. Does anyone know if this is temporary?

difficulty "motor planning"; i.e. conceptualizing and figuring out what each part of his body needs to do in order to move a certain way or complete a task (what is an unconscious sense to us, becomes an active, conscious, frustrating sense to them)

Could this be a motor planning issue? If so, I suspect it could be due to a flare.

We found 3 doctors in Illinois that immediately (after seeing bloodwork) recognized this as PANDAS and/or Autoimmune Encephalitis). Unfortunately none accepted DS medical coverage. The first said that if we could not get insurance to pay for IVIG, we needed to “beg, borrow or steal” to get it, or he would be institutionalized. By this time we had already gone through our savings (including retirement savings) due to unpaid time off and unpaid medical expenses. We used crowd funding to pay for first IVIG. We saw immediate improvement, but it was not lasting. We stopped seeing first two PANDAS MDs, mostly due to location, cost and accessibility. Third MD ordered Cunningham Panel and was able to get IVIG covered under AE. Although this doctor does not take DS insurance, IVIG is considered a prescription and it is covered. I sometimes see on these posts that a child may only need 1 or 2 IVIGs. This was not the case for my DS (possibly because the illness went untreated for so many years). For your daughter, 1 or 2 may work. Read the book “Saving Sammy”. Beth Maloney’s son was cured with antibiotics alone, but again his illness went untreated for maybe a year or so. I think that’s what makes the difference. I believe it’s important to find a doctor experienced in PANDAS/PANS, not just someone who is open to the possibility and willing to give you antibiotics for a period of time.

I’m sorry your daughter is still suffering and hasn’t seen much relief from the supplements. Her symptoms sound like autoimmune encephalitis (AE). This is the diagnosis that was used to get IVIG approved for my son from late 2017 thru present. In 2016, a rheumatologist (who had limited experience treating PANDAS kids) prescribed a high dose of Augmentin for 30 days, which worked like magic. Unfortunately his symptoms returned when she lowered the dose. IVIG was not covered for PANDAS, and she refused to order under AE, because he was not experiencing seizures. From what I read about Susannah Calahan (Brain on Fire book/movie), she was lucky to experience seizures, because that’s what led her to the doctor that diagnosed her with encephalitis. Apparently, some people (including my DS) have encephalitis without experiencing seizures. So his rheumatologist was wrong.

Maybe the MAPS doc can order the Cunningham Panel (bloodwork). That’s how my DS got approval for IVIG. Also, be sure that Jonah doesn’t take Miralax. For my DS it was the tipping point to put him in full blown encephalopathy. I’m trying to get the word out because pediatricians prescribe it like water.

Especially with the seizures, they should consider encephalitis!