Going to do a 3-D brain scan/still have PANDAS..

[Pudgeo]

Hi, I want to thank everyone for their continued help & support..I finally decided to do the brain scan and we have it next week. I feel after numerous supplements/ azithromycin/IVIG my son is just not getting better....I feel he will have to be on meds to function.

I had a good consult with a Dr there who totally understood PANDAS and brain inflammation/encephalitis. He said they had seen this before..huge regression in kids after a virus/bacterial infection. He has a son on the spectrum so he understood immune system dysfunction..and now my son is being pushed on the spectrum too because of this.

 

Also when I discussed meds with him he told me ativan & abilify were not a good combination and they did opposite things. SO I can already see their speciality is to look at the brain and then figure out what meds you need..instead of guessing like all the other Dr do....I've already played that game..try a med for a month and see if it works. Also my son was worse on anti-depressants and he said that was a big clue too...

 

If you go to the Amen Clinics website they have a section on ring of fire which is OCD in the brain and it describes why anti-depressants usually don't work....

If anyone has any experience with all this let me know!

Sarah

[EAMom]

Hi Sarah,

wow...i had not heard of this place. I glanced at the website...interesting stuff. I'm curious to know what your son's brain scan will reveal.

[kim]

Sarah,

 

I had to wonder how many parents brains would light up when they read this statement

 

7. In dealing with kids, employees, even spouses – NO YELLING! Many people with ADD are conflict or excitement seeking, as a means of stimulation. They can be masters at making other people mad or angry. Do not lose your tempers with them. If they get you to explode their unconscious, low energy prefrontal cortex lights up and likes it. Never let you anger be their medication. They can get addicted to it.

 

Since dopamine is the suspected culprit especially in tic type movement disorders, I have always found it ironic that so many kids seem to exhibit symptoms of too little dopamine concurrently. I have always thought that it must be different areas of the brain that have a high/low problem. It seems that I have read that the neurotransmitters have a modulating effect also. Again, is there a compensating factor? Seems that glutamate is getting more attention now too, which is where I suspect the main problem lies with my boys. If you have an area of glutamate that is off (low), could dopamine try to compensate?

 

Anyway, I thought the supplements that were recommended here (L-tyrosine /DL-phenylalanine) were interesting. Tyrosine being a precursor to dopamine, is not something that ticcy people would normally be anxious to try, but again it may be helpful in some circumstances too. If dopamine were the "end all" it seems that the current drug arsenal would do the trick. I did see GABA there too.

 

Thanks for sharing the site, and I hope they are able to provide useful info to help your son.

 

I also wanted to tell you that I had read a parent talking about her PANDAS daughter having 9 IVIG's and doing wonderful. The group recently shut down. I was sorry that I wasn't able to get you in contact with her before that happened. I do know of another group that has a couple of parents that have done IVIG (don't know how often they post) but I'll send you the link, if you'd like. I know one said they were seeing Dr. Gupta.

[Joan Pandas Mom]

Hi Sarah,

i am new to this. My son has had PANDAS for the last 6 years. Up until 2 months ago, we didn't know for sure. I know this is an old posting but what happened with the scan? How is your child doing now?

Best Wishes,

Joan

 

Hi, I want to thank everyone for their continued help & support..I finally decided to do the brain scan and we have it next week. I feel after numerous supplements/ azithromycin/IVIG my son is just not getting better....I feel he will have to be on meds to function.

I had a good consult with a Dr there who totally understood PANDAS and brain inflammation/encephalitis. He said they had seen this before..huge regression in kids after a virus/bacterial infection. He has a son on the spectrum so he understood immune system dysfunction..and now my son is being pushed on the spectrum too because of this.

 

Also when I discussed meds with him he told me ativan & abilify were not a good combination and they did opposite things. SO I can already see their speciality is to look at the brain and then figure out what meds you need..instead of guessing like all the other Dr do....I've already played that game..try a med for a month and see if it works. Also my son was worse on anti-depressants and he said that was a big clue too...

 

If you go to the Amen Clinics website they have a section on ring of fire which is OCD in the brain and it describes why anti-depressants usually don't work....

If anyone has any experience with all this let me know!

Sarah