You should all feel very hopeful about healing

[Tamistwins]

My son, previously healthy and happy and totally normal, became sick at age 5. It was overnight and dramatic. It started with a severe headache. He had a rash all over his back. He had spots in front of his eyes. He developed severe chorea. He hallucinated both auditory and visual. He said there were lines in front of his eyes. He asked me why everything seemed so big and so small (Alice and Wonderland effect). He asked me why a guy was whispering in his ear. He asked me when this dream was going to be over. He said his throat hurt. He said his knees and feet hurt. He said that there was a video going through his head. He lost his language. It started that he just would not talk much. Then, he couldn't remember the words for things, "What's the word Mommy." He became autistic with a twist. He knew what was happening. "I have a terrible sickness Mommy." "Fix my brain" His words then started to stutter. Then gibberish. He got severe OCD and tics.

 

My son was one of the most severe pandas cases his neurologist has seen. It went untreated for 2.9 years. He was on antibiotics for three months before IVIG. He has had 5 IVIGs (2gr/kg), the last one March 15-16.

 

I want you all to know that IVIG WORKS. Multiple IVIGs WORK. My son is getting so much better. It is so exciting to watch. It has been almost 10 months since his first IVIG. Progress happened after each one but it was slow. After the 4th and especially the 5th IVIG he seems to be taking off. Don't despair people! This is a long road but your children will get better! Believe it!

 

This morning my son woke up with a smile on his face and said, "I want to go to school". How about that! The boy who became mute now talks!

It is so wonderful to hear that that your son has improved so much after ivig treatment. How often has he had treatment? how looking in between? was strep your sons only issue? my children have strep, mycoplasma and now lyme or bartonella. So ivig didn't seem to work for us. Although ivig is still recommended as treatment. We had 2 treatments. Its good to hear that u see improvement with multiple ivig treatments.

So happy for your family!

[Joan Pandas Mom]

THANK YOU SO MUCH FOR THIS. We just had our 4th IVIG. The 4th was at 2g/kg. The first 3 were at 1.5g/kg. We are scheduled for the 5th in a few weeks. We went 5 years untreated. My son is now 16. I am hoping the more frequent IVIG's (every 4 weeks), 2g instead of 1.5/k work.

[Johnsmom]

So happy for you! We are moving on to number three. You give us lots of hope! Thank you for sharing and please dont stop!

 

johnsmom

[P_Mom]

BELIEVE IT!!

[hawks]

What great news! So glad for your family. It's so good to hear about the successes. Praise God!

[PhillyPA]

Tamistwins - my son had treatment May, July, August 2010. He was steadily improving. However, my other son got mycolplasma pneumonia in November and it caused a rapid collapse of progress. He then got ivig in January 2011 and March 2011. He is scheduled for two more. One in April and one in June. Progress is sawtooth but upwards.

 

According to all lab work, my son is in perfect health. But I do believe that strep caused all of this. We have so much rheumatic fever and scarlet fever in my family. During all of this my younger son also got PANDAS. My younger son, DS6, got pandas last summer. After his 11th bout with strep throat, he started to not feel clean enough after he went to the bathroom. He changed his clothes all of the time because they were "dirty". He started to spit out all of his food because he felt like he was choking. He didn't eat solid food for one month and was in a state of crisis. He was treated quickly because I knew what it was. Antibiotics and a month long steroid taper put that son in remission.

 

AFter my older son (DS8) got sick, it was immediately suggested that it was PANDAS. However, his titers were low so the doctor's said that it could not be pandas. My first thought was Lyme disease. I had them check for it when they did a lumbar puncture. He had many tests by different doctors for Lyme, one being a Lyme specialist. The tests were always negative. I had him treated for Lyme disease anyway with IV antibiotics. He did not have Lyme. Honestly, I was very disappointed. I thought we had our answer. I was always a bit crazy checking for ticks. Everytime my kids went outside, when they came in I came them a full tick check followed by a bath. I when I say full tick check I mean that they got naked and I checked their groin, ears, scalp with a special comb. I never found an embedded tick.

 

When my DS6 got Pandas, that really put my Lyme fears to bed. I literally said a prayer to God the week before my younger son got pandas. My prayer was to give me a sign that I am on the right path for treatment with my older son(DS8). The next week my younger son got clear cut pandas. He was "cured" with treatment. I was actually at the OCD conference in Washington D.C. when my parents called me and told me that my younger son is spitting out all of his food. I had just heard a speaker talk about spitting out all of your food as a sign of pandas. Sometimes things happen that are just to much of a coincidence to be a coincidence.

[sf_mom]

It warms my heart to hear your positive update. You've fought very hard to get your son well. Congratulations on the progress.

[norcalmom]

Philly - what antibiotics has your son been on since you found the mycoplasma? (I think you told me, but I forgot).

 

I'm wondering, with kids that get mycoP repeatedly, if on going low does ivig might be helpful once they stabilize (since, the antibiotics don's seem to act prophylactically?). Please let me know if your doc has discussed with you.

[Doug]

I totaly agree

My dd is doing great (knock on wood)

after ivig # 2 and I would do it again in a heart beat

we are going on a road trip tomorrow and she is super excited to go

that is very nice

[Doug]

I totaly agree

My dd is doing great (knock on wood)

after ivig # 2 and I would do it again in a heart beat

we are going on a road trip tomorrow and she is super excited to go

that is very nice ...

Tracie

[Doug]

I totaly agree

My dd is doing great (knock on wood)

after ivig # 2 and I would do it again in a heart beat

we are going on a road trip tomorrow and she is super excited to go

that is very nice ...

Tracie

[PhillyPA]

norcalmom - my younger son got the mycoplasma not my older one. My older one just reacted to it. His behavior got crazy. So, I switched his antibiotic from augmentin to azithromax. So both of my kids switched to azith when my little one got myco.

 

Currently,my DS6 is on augmentin. However, if he gets sick and develops pandas symptoms I put him on azith for a couple of weeks. The azith totally takes care of symptoms. When pandas symptoms are gone, I put him back on the augmentin.

 

My DS8, the kiddo that I talk about in this post who had all of the ivigs, is currently on azith. I have decided to keep him on azith for a while. He just does so much better on the azith. I worried about the east coast resistant strains but I really feel like I have no choice - the azith is so much better for my child's pandas symptoms.

[JAG10]

I would agree. My girls have done better on Zithro also.

 

This disease is so sneaky!!! Is it any wonder we (parents) get treated like we are as nutty as our children appear?

 

So many of our children do not present with symptoms that are "known" to be associated with strep. Whoever heard of a lone cough associated with strep? Yet winter 2007 (exact same geographical area), my dd had the exact same lone cough symptom before her WHAM! Perhaps it was some nasty strep/strep pneumonae/myco-p trifecta.

 

I also wonder this.... my dd has had the simple cough turn into the behavioral "cough tic", just to thoroughly confuse matters. So who knows where that fits in the picture, especially trying to put the puzzle together in hindsight

[philamom]

I would agree. My girls have done better on Zithro also.

 

This disease is so sneaky!!! Is it any wonder we (parents) get treated like we are as nutty as our children appear?

 

So many of our children do not present with symptoms that are "known" to be associated with strep. Whoever heard of a lone cough associated with strep? Yet winter 2007 (exact same geographical area), my dd had the exact same lone cough symptom before her WHAM! Perhaps it was some nasty strep/strep pneumonae/myco-p trifecta.

 

I also wonder this.... my dd has had the simple cough turn into the behavioral "cough tic", just to thoroughly confuse matters. So who knows where that fits in the picture, especially trying to put the puzzle together in hindsight

My daughter's first notable MAJOR episode took place in March 2007 (also in same geographical area!?!). She was seen for Tourettes at CHOP in April.

Many only have a minor stomach ache with strep. You know, the little complaint of just eating too much ice cream. You wouldn't go to the doctors for that. Yikes.

btw- a friend who knows about my dd's situation with pandas/lyme just told me about a child (mom's a client of hers) who was all of a sudden extremely clingy. Nothing else. The child's grandmother insisted that the mother take the child to the doctor (family did not know about pandas) since it was so out of character. The pediatrician suggested a strep culture...it was positive. This was two weeks ago. It's nice to know the info. is spreading!

[JAG10]

I wonder if 20 years from now, we'll look back to realize the persistent reluctance and strict application of narrow criteria of our pediatricians to prescribe abx resulted in a generation of cognitive disturbance.