Road to Recovery for PANDAS son

[Sunshine]

Here's our story of a three year rollercoaster ride with PANDAS. It is a long story, but it documents all of our trials with different treatments. It really shows how tailored treatment plans need to be. I truly believe that if you have found a treatment that works, STICK WITH IT! Nothing, including antibiotic therapy, was working for my son, so we pursued every possible avenue and thread until we found something helpful. It is a relief to know that he is healing, and we are incredibly thankful for his gains.

 

Our son was born a healthy, happy baby. He reached all of his milestones on time or ahead of schedule. We ran him through all vaccinations that were recommended. There is no family history of tics, TS, OCD, ADHD etc...

 

He was put under a general anesthetic and had eye surgery at the age of 1 for a genetic problem called strabismus. At age 2 1/2 he had a benign tumor removed from his wrist (which required 2 different anesthetics). His eyes continued to get worse, but we were assured that another surgery would fix the problem. We still believed that he was a healthy boy. However, he did seem to be in a fog, and seemed to have slight auditory processing issues.

 

At the age of 4 1/2 he got a severe case of Strep which ping ponged through family members and neighbours. Most kids required two doses of antibiotics, but my son only took one round at that time. Shortly after that our happy son became a cranky boy who suddenly developed separation anxiety, clothing sensitivity, disturbed sleep patterns, and emotional lability. He had another bout of strep just before his 5th birthday and within two weeks exploded overnight with several motor tics and frequent urination. His fine motor skills took a dive, and he became hyperactive at times. We pulled him out of preschool, reduced his stress, and his symptoms cleared. He had another positive strep test 3 months later, with the same symptomatic response. He then got his Kindergarten shot, and within 2 weeks developed a 'permenant' vocal tic. He had dark circles under his eyes and his color had been reduced to a whitish grey. He ticced every second of every day; there was no clear waxing or waning. So, he started school with 'permanent' motor tics, vocal tics, ADHD, slight OCD, and all the emotional baggage as described above.

 

He has seen several pediatricians, two allergists, one neurologist, a naturopath, a homeopath, an infectious disease specialist, and he was cared for by BC Children's Hospital.

 

Just before he turned 6 I found this forum. Here's what we have done:

 

1. We started him on a daily multivitamin, vitamin C, Cod Liver Oil, digestive enzymes and a Cal/Mag combo. He seemed a bit better.

 

2. He went to an allergist and had traditional needle testing done. He showed allergies to cats, dust, and grass (no big news).

 

3. We pulled all artificial colours and flavours from his diet. He showed some more improvements.

 

4. We had VEGA testing done for delayed food sensitivities. He showed sensitivities to soy, milk, wheat, chocolate, tomatoes, plums, mushrooms and sulfites. We pulled these from his diet and saw some wonderful improvements.

 

5. We tried Epsom Salt baths. He got itchy. They didn't seem to help.

 

6. We put him on several different antibiotics. We tried amoxicillin, Zithromax, Clyndamyacin and others. They seemed to make him emotionally more stable, but none had a dramatic affect on his tics. We were careful to use probiotics as well.

 

7. We changed all the fluorescent lighting in the house to regular bulbs. We all felt better.

 

8. We removed all screens (tv and computer) for almost 1 year. We all felt better!

 

9. We put a HEPA filter in his room. We noticed little change, but we continue to use it.

 

10. We started him on Threelac. He had terrible die off and got worse for 1 month. Then he seemed much better, although he still ticced constantly.

 

11. We tried DMSA heavy metal testing. It made him worse, but he tested positive for 10/14 heavy metals. Yikes!

 

12. We continued to experiment with vitamins. We tried Taurine, Vitamin A, Echinacea, UNDA drops, herbs, B6, zinc, homeopathic remedies, copper, and many others. It was so hard to gauge what was helping, and I didn't like the subjectivity of experimenting.

 

13. We had his adenoids removed. There was no change in tics, but his body seemed less taxed.

 

14. We began the YASKO protocol. He got worse initially, but we were told to expect that as it is considered detox. He has been following this protocol for 6 months now and his gains are remarkable. We continually test levels of everything so that there is no guess work in what he needs. His supplements are tailored to fit his genetics, and to support/bypass his genetic mutations.

 

 

He is now 7 1/2, almost 8. Here are his gains:

 

* His dark circles have disappeared from under his eyes.

 

* His colour is better (rosy cheeks all the time now!)... good-bye pasty white!

 

* His eyes are straighter (no surgery needed now!!).

 

* His language has exploded.

 

* His auditory processing is amazing, and he responds quickly when asked a question.

 

* The fog has lifted!

 

* He has gained 12 pounds and grown 2 1/2 inches in 6 months.

 

* He is once again a happy, cheerful boy with no ADHD, OCD or any of the aforementioned emotional symptoms of PANDAS.

 

* His tics are so minimal that no one notices (not even my husband). At times, they are completely gone.

 

* His printing is beautiful, and he's doing very well in school.

 

* He is sleeping well, although he has some nightmares.

 

*** When detoxing, he will regress and show some symptoms, but we know before adding a supplement that detox is probable. Afterward, the gains are always exciting to see!

 

That's our story. I believe that he will continue to get better and stronger. I am thankful for this form, and I have found such useful information from people here. I am also thankful for Dr. Amy and her protocol... it was our final puzzle piece!

 

I can empathize with everyone who is on this journey of recovery. It is a true rollercoaster, and it can be draining and frustrating. However, I once posted "It is amazing to watch your children grow, but it is magnificent to watch a child who was so sick finally blossom. That is absolutely magical. I am constantly amazed at my son's strength during his healing process. I am so thankful for him and all of the other children who have lead us parents on the voyage of discovery and healing."

 

Best wishes to everyone!

Sunshine

[kim]

Sunshine,

 

Thanks so much for taking the time to post your son's progress. Amazing that no further surgery was required for the eye problem.

 

I was reading an old PM from another Mom who followed the Yasko protocol for her son. She mentioned that surgery can cause damage if you are deficient in B12? I don't know the source of that information, but thought it was interesting. My son was so sick after his tonsil removal. I thought he was never going to recover.

 

I'm wondering if you can answer just a couple of quick questions.

 

Is a trip to Calif. required for an initial consultation, or is there a possibility that we could do appts by phone?

 

Do you feel aluminum removal was key in eradicating the strep and autoimmune issues?

[kim]

Sunshine,

 

Thanks so much for taking the time to post your son's progress. Amazing that no further surgery was required for the eye problem.

 

I was reading an old PM from another Mom who followed the Yasko protocol for her son. She mentioned that surgery can cause damage if you are deficient in B12? I don't know the source of that information, but thought it was interesting. My son was so sick after his tonsil removal. I thought he was never going to recover.

 

I'm wondering if you can answer just a couple of quick questions.

 

Is a trip to Calif. required for an initial consultation, or is there a possibility that we could do appts by phone?

 

Do you feel aluminum removal was key in eradicating the strep and autoimmune issues?

[Sunshine]

Kim,

 

FYI, the doctor thinks that the measles part of the MMR vaccine is what exacerbated my son's strabismus.

 

Our doctor takes many international patients, via phone consult... no trip necessary. We mail all blood work, stool and urine samples to the US, and she interprets the results and tells us her recommendations.

 

Definitely aluminum plays a role with strep. Here's a quote from Dr. Amy:

 

"While chronic viral infection appears to be associated with heavy metal retention, chronic bacterial infection (ie strep) appears to be associated with aluminum toxicity. We have found that the use of CCK along with stomach pH, EDTA, malic acid and horsetail grass helps to aid in the aluminum excretion as well as balancing the gut pH so it is a less favorable environment for non ideal gut bugs. In addition the use of normal flora and a number of specific herbs (as indicated by sensitivity testing on the CDSA) help to get the gut in better balance. The use of IP6 and benfotiamine may be helpful for some of the OCD symptoms."

 

Unfortunately my son is also loaded with other heavy metals, viruses, and toxins. However, he continues to dump at a slow, steady rate. Yeah!

 

Cheers,

Sunshine

[bmom]

Sunshine- What a caring mom you must be. I sent you an instant message, but I do have another question. I looked at the Yasko approach online, are you doing all of the supplements. Does he do the bath detox? What about the gum? Was there one part of it that you found especially helpful? Thank you for taking the time to do all of this.