Another Pandas question re:severity

[blake]

I have read a lot of the Pandas posts, but I have a question about the severity and if it is also Pandas.

 

Last Jan. 11 (2007), my son had sudden onset of Pandas/Sydenham's chorea. He started stuttering, having trouble walking, involuntary movements, bizarre behaviors, and severe OCD. It took two months to diagnose, but his antidnase b was off the charts at above 2720. Antibiotics did not help him at all, but he went on prophylactic (sp?) penicillin from Mar until Dec. A steroid burst in April cured him temporarily so the next step was IVIG which did nothing, and then IV steroids which did nothing. He was severe - ended up unable to even stand, had a feeding tube, and was in diapers (he's 10). The physical problems were more (I guess)from the Sydenham's due to muscle incoordination.

 

Last month, he no longer needed a wheelchair, he began eating and drinking, still in diapers, still has significant OCD, the only tics are vocal tics. He was not recovered yet. Then on Jan. 24, he had another sudden onset of ocd severity. He didn't have strep but his brother did so he was exposed. His aso has been normal for months, but the antidnase b is 463. It has slowly been going back down and has never made it back to the normal range since last year.

 

His DAN said Pandas cycles (I thought there needed to be an active strep to have another cycle) and that he needs IVIG once a week for 12 weeks to build up his immune system to knock Pandas out, which we are working on getting approved from insurance.

 

His pediatrician mentioned ordering an MRI (he already had two normal ones last year and 3 normal EEGs).

 

My question is: He now has severe OCD with licking everything (walls, pictures, windows, etc) and repetitive rituals usually involving licking. He cries out "help" and "my brain is mixed up" so I know he can't help it and wants to stop. He has autism but is verbal, but can't explain to me what he means by "my brain is backwards", and why he cries "I need to go to the doctor". He also cries out "my muscles are moving"which they aren't which he did last year a lot. I assume he feels some sensations, such as pins and needles. Is that Pandas?

 

I haven't read about any other licking problems. He appears to be going crazy, yet he still demonstrates he has cognitivie skills and receptive language the same as before these past 14 months. He is a different boy except after the steroid burst for a week or so. Is this consistent with his Pandas or might an MRI reveal something else that could be wrong? The Pandas is not in question (it seems pretty classic pandas). Does it make crazy bizarre behavior such as this? What does he feel in his brain? Just wondered if other kids who can communicate explain what they feel.

 

I miss my son and can't wait for the IVIG plan to begin. At least he is walking, eating, drinking, and no motor tics currently. But mentally he is a mess.

 

Thank you for any help at all.

[Caryn]

Have you ever tried the GFCF (gluten-free casein-free) diet?

[blake]

Yes, he has been gfcf for 8 months.

[faith]

Hello Blake,

My son is not PANDAS and I don't think I have enough knowledge to give you any answers regarding that, but one thing that stood out for me is some of the symptoms you described. Is there any possibility of your son having a B12 deficiency? I don't know very much about it, but I think that losing coordination and having difficulty balancing and walking could be a sign. Maybe you could ask your DAN doctor about that? Maybe you could do a search and see if some of the things you read could possibly correlate? I do know that B12 shots are part of the DAN protocol for autism.

 

Blessings

Faith

[Caryn]

Have you done a candida test? Some parents find success with a more restrictive diet. (For example we went gluten, corn, low sugar, and casein reduced). For us that was not quite as restrictive as the Specific Carbohydrate Diet.

Have you tried digestive enzymes?

Our son presented with mild OCD and had no elevated strep titers, although his bloodwork showed he was fighting off an infection.

Do you think the symptoms are related to a vaccine?

[Caryn]

Excellent point, Faith.

[blake]

His DAN dr. suggested b12 shots later for methyl support, but it wasn't an immediate concern. His OAT did show yeast, and he has been on 2 30 day runs of diflucan (just finished) since Oct. and he has been on probiotics since Sept. Dan! is the one saying the IVIG for 12 weeks will knock out the PANDAS. I highly trust him, but I wondered if others had seen the severity similar to my son's. I'm worried it might be something more, but I always worry. I don't want to repeat last year (3 hospital stays, one included psychiatric institute). I don't know what is from Pandas vs. Sydenham's, which his doctor said they are pretty much the same thing.

 

Thanks so much!

[michele]

I am so sorry for all you have been dealing with. Another person has posted on here whose child had a severe reaction to PANDAS in the past. I believe her child had the psychiatic severity also and had to be hospitalized in the mental hospital with restraints. I am happy you have a diagnosis. That is half the battle. My son also has PANDAS but is younger, six. He has regressed in his fine motor coordination but never lost bladder control or couldn't walk. He had his first episode at one and has had a couple episodes a year since. His does wax as your Dr. has suggested. We also have given Nystatin an anti yeast drug. Also have done the antibiotic therapy but never had to do steroids or IVIG yet. Have you considered Dr. K at web pediatrics yet? Also Dr. Murphy is an expert on Pandas and you can contact her. My son was also diagnosed with sydenhams chorea because it is a more accepted disorder. He had tics and involuntary movements to his eyes, fingers and hands and feet. However at this point we have never had to deal with the ordeal you are. My son does have bladder issues during episodes where he feels urgency to go too often. He is emotional and ADD and has behavior issues at times. He does seem to get better inbetween episodes though it never goes completely away. We give him daily antibiotic Omnisef and probiotics. He used to say it felt like something was inside his hands when he used to crack his knuckles and joints repeatively. He does get fixated on things. At one point he was licking things too. He would lick walls, doors, knobs, toys etc. Behaviors seem to change all the time though. His symptoms seem to always change. He talks about odd things like China, death, bald heads, arm pits , killing myself, etc. He gets weird ideas in his head and brings them up at odd times. I feel for you. If you need to vent this is a good place to do it. You can send me a private message if you'd like. You say your child has autism? When was that diagnosed? Take care and God bless.

 

Michele

His DAN dr. suggested b12 shots later for methyl support, but it wasn't an immediate concern. His OAT did show yeast, and he has been on 2 30 day runs of diflucan (just finished) since Oct. and he has been on probiotics since Sept. Dan! is the one saying the IVIG for 12 weeks will knock out the PANDAS. I highly trust him, but I wondered if others had seen the severity similar to my son's. I'm worried it might be something more, but I always worry. I don't want to repeat last year (3 hospital stays, one included psychiatric institute). I don't know what is from Pandas vs. Sydenham's, which his doctor said they are pretty much the same thing.

 

Thanks so much!

[CSP]

blake,

 

Welcome, and may I add I'm so sorry you all are going through this.

 

I was wondering if your Dr. has him on high doses of omega 3's.

 

I have heard some good stories about fish oil helping with Asperger kids in as little as 3 days.

 

Just wondering what your Dr. has said about the omega 3.

 

God Bless, and I really hope you start to see tiny miracles very soon.

C.P.

[blake]

My son is allergic to fish, but the doctor did mention he wouldn't be allergic to salmon oil. But he didn't say he needed it when I asked. I'm sure he got that off of one of the many many tests run. I've looked for salmon oil anyway but it wasn't at my local healthfood store.

 

I really appreciate everyone's responses. I'm sure everyone knows the sheer desperation when going through this and any info is greatly appreciated. Thanks all!

[lurker]

Trader Joe's has it. Vitamin section. Next to fish, flax, borage, etc. White bottle/orange label.

[blake]

Trader Joe's has it. Vitamin section. Next to fish, flax, borage, etc. White bottle/orange label.

 

 

Thanks. We don't have a Trader Joe's but you inspired me to find it elsewhere - Amazon! And it was marked down! My other son takes 1 1/2 tsp fish oil so I assume the dose is the same for salmon oil. (He can't take the soft gels). I will try it - and anything else suggested. Thanks so much.

[CSP]

blake,

 

www.vitalchoice.com has salmon oil. this should be a very pure oil, we buy the salmon, as my son's Dr said it was a great co. free of mercury, PCBs, ect.

 

I have read and heard that fish oil can increase the gray matter in the brain, so it is never to late to start.

 

good luck,

C.P.

[CSP]

All,

 

I was reminded by this thread to order more fish, being Lent and all we have eaten our stock pile. Anyway, I checked out the salmon oil and found this out while reading about it. Vitalchoice says, "Astaxanthin- from zooplankton they eat."

 

"The naturally occurring astaxanthin in our salmon oil eliminates any need for the weaker tocopherol antioxidents added to standard fish oil."

 

I have said in the past I could never figure out if it was the tocopherols added (no company could guarantee it was not from soy oil.) caused the increase in tics. I will get some of this salmon oil and try my son on it.

 

Just wanted to put that out there if anyone else was ever wondering if it was the additaves in the fish oil and not the fish oil itself that caused our kids the trouble.

 

C.P.