nicklemama

Before I tried Abiify, which is an atypical antipsychotic, I would consider something with less potential for side effects, if you havent already. My son was on Lamictal for a year with good results. Lamictal is an anti seizure medication with a wide margin of safety and tolerance. It also has antianxiety properties and regulates brain glutamate, which can cause some symptoms in our kids.
 
Lamictal has to be titrated up slowly to avoid a potential allergic reaction.

I came to this board in 2010, after my son had been suffering for a year without treatment. I was encouraged to seek treatment, even though my son never had strep and his titers were normal. I traveled out of state and treatment started helping but he never got really well. All during this time, any suggestion of looking for Lyme was met with strong opinions and objections by many and people got quite nasty about the mere suggestion of looking for Lyme, so I stayed the course with PANDAS and the board spun the Lyme group off separately.
 
In two years, I spent tens of thousands of dollars on IVIG and expensive PANDAS providers out of state. My son got marginally better then relapsed after each IVIG.
 
I found a local doctor who was beginning to treat PANDAS. She was also treating kids with ASD and quite a few Lyme patients unbeknownst to me at the time. She suggested to me my son needed to be tested for Lyme and coinfections. Surprisingly, he came up positive. It really bothers me, nearly five years later, to see others so easily discount and discourage a look into Lyme. I waisted valuable time and money by not looking into all infections before pigeon holing my son and taking even more time to achieve wellness.
 
I sincerely hope this board is not going to go down the no Lyme road again. It's a disservice to every child.
 
I don't know how long Sirena has been at this. She doesn't say in her signature. What I meant above is, if PANDAS treatment is not working or your child is relapsing and not achieving a good and lasting wellness, it's time to look at other things. Treating PANDAS does not treat Lyme, of that I can tell you absolutely and for certain.

Glad to hear @nicklemama 's experience w/Lamictal, in same class as Trileptal and Topamax. We were going to go to Lamictal if Trileptal didn't work for ds15. Gradual increase is needed with most of these meds, but unlike the SSRIs and antispychotics needing to be uber-low doses (per Dr. Swedo), the anti-seizure meds can be dosed higher, at least w/our PANS child.

Another "yes" vote for Lamictal here, as well. Very effective. And now it is available in an XR version. On top of being an anti-seizure and mood stabilizer, it is also thought to be a glutamate modulator, which many suspect is directly tied to psychological behaviors sets of many types.

I am so sorry you've reached this point. My son has similar snps. Before we knew about PANS, we tried Celexa and it was a disaster. He was then placed on lamictal. It tamped down the anger,irritability and rage. I recommend asking him to be placed on lamictal. It takes many weeks to slowly titer up lamictal because it has an adverse reaction when you go too fast. Lamictal is a seizure med that has anti anxiety properties and its frequently used in the bipolar. You could use risperdol tpn until you get where you need to be on lamictal.
 
My son has Lyme, too.

I am so sorry you've reached this point. My son has similar snps. Before we knew about PANS, we tried Celexa and it was a disaster. He was then placed on lamictal. It tamped down the anger,irritability and rage. I recommend asking him to be placed on lamictal. It takes many weeks to slowly titer up lamictal because it has an adverse reaction when you go too fast. Lamictal is a seizure med that has anti anxiety properties and its frequently used in the bipolar. You could use risperdol tpn until you get where you need to be on lamictal.
 
My son has Lyme, too.

I am so sorry you've reached this point. My son has similar snps. Before we knew about PANS, we tried Celexa and it was a disaster. He was then placed on lamictal. It tamped down the anger,irritability and rage. I recommend asking him to be placed on lamictal. It takes many weeks to slowly titer up lamictal because it has an adverse reaction when you go too fast. Lamictal is a seizure med that has anti anxiety properties and its frequently used in the bipolar. You could use risperdol tpn until you get where you need to be on lamictal.
 
My son has Lyme, too.

but strep is not the cause of pandas. pandas is an autoimmune condition. getting rid of infection is only one thing you need to do. many kids here are triggered by various triggers, hence PANS which is beginning to replace PANDAS diagnosis.
for your theory to work, your kid would have to have only strep as a trigger.

if she was diagnosed with pandas, she should have been put on abx. that's standard protocol. ask why she wasn't.
ask also, why dr thinks pandas will go away after tonsilectomy? (She may be in for a Nobel prize, if she knows what she is talking about)
Melmix gives an example of improvement BUT in the example how can we tell if it is tonsilectomy or abx?

I don't know specifically what a high anti tubulin means but my sons was high as well. It was the highest of the 4. I was interested to read what was posted from the Cunningham website. I've never read that before. My son was in the research study and had the panel in 2010, just after starting treatment.
 
You can google anti tubulin. There are several papers on it. It's thought to be linked to movement disorders. My son had chorea like movements rather than severe tics. He was primarily OCD, anger and emotional lability before treatment.

I suspect your son has OCD in ways you do not realize are OCD. I didn't realize my son had OCD. He also has never had strep titers. Turns out it's because he has Lyme disease. If your child does not have strep, look for another infection that is causing PANDAS. It is actually called PANS.
 
Tamar Chansky has an excellent book called Freeing Your Child From Obsessive Compulsive Disorder. That book lead to my realization of exactly what was OCD in my son.

I am in a parenting board and there is a mom on there who is militantly pro vaccination and I've had words with her more than once. Yesterday, she said she was against the Calif bill. I have asked her if she would mind sharing why. We will see if I get an answer.

If you have been pushing for a year with this doctor, you need to move on. If I had waited for my pediatrician to test my son 5.5 years ago, I'd still be here waiting. Find a doctor that understands and treats PANS. You don't have to jump to IVIG without testing. Test for lyme too.

I feel like David trying to slay Goliath. I only hope the little man can actually win this battle.

I wish I'd been smarter about vaccines when DS was a baby.

Unfortunately, too many doctors fulfill an ethical responsibility to "treat" by "treating" with the wrong responses, such as multiple psych drugs, recommendations that the parent switch up their "parenting techniques" and the like. Drives me nuts.

If you have been pushing for a year with this doctor, you need to move on. If I had waited for my pediatrician to test my son 5.5 years ago, I'd still be here waiting. Find a doctor that understands and treats PANS. You don't have to jump to IVIG without testing. Test for lyme too.

The system was broken well before Obama. He's not responsible for the training of the current batch of doctors. He does not hold sway over the AAP. Any problems lies solely with the medical profession itself. They don't get to escape responsibility by throwing blame on a politician.

I wish I'd been smarter about vaccines when DS was a baby.

Its time for Igenex, I agree. My son was treated by Dr. K twice with IVIG. The protocol did not work because we found lyme disease in my son. The proper lyme treatment has my son functioning very well with only minor flares.

Its time for Igenex, I agree. My son was treated by Dr. K twice with IVIG. The protocol did not work because we found lyme disease in my son. The proper lyme treatment has my son functioning very well with only minor flares.

The system was broken well before Obama. He's not responsible for the training of the current batch of doctors. He does not hold sway over the AAP. Any problems lies solely with the medical profession itself. They don't get to escape responsibility by throwing blame on a politician.

Yes, thank you for posting. I noticed this study didnt originate in vaccimerica.

If you are seeing Dr Bock, you are in great hands.

Steroids are contra indicated when a person has Lyme. They diminish immune function and make symptoms worse.
 
Lyme treatment can take quite a while. If you are seeing Dr. Bock, you are in good hands. He is a LLMD. If it were me, I would follow his protocol. Dr. Trifiletti is not Lyme literate.