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20 days post HD IVIG and doing well


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I was afraid of posting this as it might be too early to pop a champaign bottle yet (only 20 days since last IVIG) but could not contain my happiness any longer so here I am reporting to you guys that my ds17 is doing very well. His OCD is almost gone ( I am still learning to distinguish between OCD behavior vs his basic personal preference ) He yelled at his brother for putting his computer on the floor several times but did not go into 2hrs of demanding apology and making us promise that we would not do it ever again for another 3hrs. Yes he gets mad and things bother him but he moves on in 5 minutes. I cannot begin to tell you how nice it is to have a life without his OCD thoughts. As I am typing this, my son is studying for his upcoming Nov SAT test. I am not going to dwell on how we could have been aiming for top schools if it weren't for his PAN/PIT and be happy that he is taking positive steps and embracing his future in a way that was not possible before we took him through PANDAS journey 9 months ago. We are scheduled to get 2nd HD IVIG in 10 days but am not sure if we will do it yet because he is doing so well as it is but we will see.

To be fair, I have to say he has been improving steadily since starting Augmentin 4 months ago so his improvement could have come from Augmentin not from IVIG alone but I believe(hope) IVIG will play its role in the future. I was very discouraged when Dr. K told me that teens have lower chance of recovering from PANDAS but as it turned out my son is doing really really well. I am redecorating my house and doing things I couldn't or didn't want to do due to my son's condition. I hope my son will continue to do well but whatever comes our way, we are ready to tackle it because now we know my son's OCD has beginning and ending compare to being permanent fixture in his brain. Thank you for reading

Pathfinder on Diamond Bar, Ca

Edited by pathfinder
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I was afraid of posting this as it might be too early to pop a champaign bottle yet (only 20 days since last IVIG) but could not contain my happiness any longer so here I am reporting to you guys that my ds17 is doing very well. His OCD is almost gone ( I am still learning to distinguish between OCD behavior vs his basic personal preference ) He yelled at his brother for putting his computer on the floor several times but did not go into 2hrs of demanding apology and making us promise that we would not do it ever again for another 3hrs. Yes he gets mad and things bother him but he moves on in 5 minutes. I cannot begin to tell you how nice it is to have a life without his OCD thoughts. As I am typing this, my son is studying for his upcoming Nov SAT test. I am not going to dwell on how we could have been aiming for top schools if it weren't for his PAN/PIT and be happy that he is taking positive steps and embracing his future in a way that was not possible before we took him through PANDAS journey 9 months ago. We are scheduled to get 2nd HD IVIG in 10 days but am not sure if we will do it yet because he is doing so well as it is but we will see.

To be fair, I have to say he has been improving steadily since starting Augmentin 4 months ago so his improvement could have come from Augmentin not from IVIG alone but I believe(hope) IVIG will play its role in the future. I was very discouraged when Dr. K told me that teens have lower chance of recovering from PANDAS but as it turned out my son is doing really really well. I am redecorating my house and doing things I couldn't or didn't want to do due to my son's condition. I hope my son will continue to do well but whatever comes our way, we are ready to tackle it because now we know my son's OCD has beginning and ending compare to being permanent fixture in his brain. Thank you for reading

Pathfinder on Diamond Bar, Ca

 

I am so happy for you!!!!!! truly!!!

please update on your ds' continuing progress

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That's great! keep us updated! I love to see the teens doing well - I don't think many have really dug into to look at how they do vs the under 10 crowd. What were you on prior to augmentin?

 

 

He had been on combination of numerous medications since 10 yrs old. His last medications were Zoloft, Concerta, and Abilify but they were not working so we were at a point where we either change meds or try something different altogether. It has been 10 months since we started to ween him off meds and 7 months since coming off some meds completely. (we are still on 25mg zoloft as he gets headaches when we discontinue completely--no differences in his OCD whether he is on this or not)

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My son is 13 days post his first IVIG. Symptoms are not as bad as 6 weeks ago. Some symptoms are 90% better but I don't know if this was due to ABX since I haven't seen any improvement since the IVIG. Never could sit still since around 3 1/2 since a high fever and red rash (which we believe now was scarelt fever), this started improving within 72 hours of his first dose of Zithro.

 

I know every one has a different story about experiences with IVIG. But could you share with me your story? DId you see gradual progress, no progress and then overnight improvement? Did you see a relapse in behavior? Again, my story could be different than yours but just need some words of incouragment. Since Friday night my son came home from school with a very severe headache. He gets headaches almost every day since about 5 weeks ago. Severe headaches the first 4 days after IVIG. Since friday he is starting the snake like movements and mouth opening that he hasn't done since the explosion of OCD 6 1/2 weeks ago. I have been told this is normal. I just don't see much more improvement since the IVIG. He hasn't been able to sleep alone since this all started. I'm just hoping that we are on the right path. Thinking of changing from Zithro to Augmentin.

 

I'm all over the place, maybe I too have Pandas. Just wanted to know your story since the IVIG.

 

Thank you in advance!

 

My son slept almost 24 hrs straight after his IVIG. He was very tired and sluggish for almost 2 weeks. ( actually he was complaining today that he is too sleepy and tire at school) He has not had any relapse in his OCD but I noticed that his tic has come back since IVIG which is very odd because he has not have tic for a long time.( more than 5yrs )I think my son's tic is same kind of reaction as your son's staring to IVIG ?

We had a pandas Dr visit about a week ago and he told me that HD IVIG usually takes several weeks before you see some effect so let's be patient and stay positive. I do think you are on the right path because you are believing in curing your child and exploring options in treatment and to me, that is the right path.

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