steriod burst questions

[T_Mom]

Our son just complete IVIG with Dr. K 12 days ago. He is 5 1/2 and we think he was originally exposed to Scarlet Fever a year and half ago with his first mild presentation one year ago (cough/clearing of throat), 2nd episode started June 24th with a strep infection (mostly tics, mild OCD). My son was only on antibiotics at time of 5 day steroid burst in August. Dr. K had him draw a picture prior to burst and 14 days post burst to determine fine motor skill improvement 'it was dramatic'. We did see a temporary improvement in our son but once the steroids wore off symptoms increase. Currently, we do not notice any OCD behavior and only minor tics 'blowing on the back of his hand and a total of three cough yesterday' when he is tired. He had a complete melt down yesterday when he dropped one of his Leggo Cars and it broke into pieces.... he was tired. So far, we are very hopeful.

 

As for Dr. K being published.... He is in the process of publishing his finding after 10 years of treating/studying along with Mayo and John Hopkins. I he has also been consulting with Susan Swedo regarding the findings. He said it should be out sometime this fall or early next year.

 

I'm sure with whatever Dr. you consult 'Dr. K or Latimer' they have a plan of action regarding current medications.

 

 

YEY SFMOM!!! This is good news indeed--

TMom

[michele]

My son got a three week dose of prednisone from Dr. Latimer this summer 30 mg, 20mg, 10mg. He had been having symptoms on and off for 7 years some tics, anxiety and compulsions and moods after strep and ear infections and shots and flu. Well the steroids actually made him angry. I mean enraged. He was throwing chairs at the pool and tables and just irritable and mean. I am not sure what this means and if we were the only ones who did not respond well to steroids. Dr. Latimer said his is more of an anxiety disorder which we now think is Aspergers. Initially it was brought on by strep and then the tics and OCD and moods. I still wonder what Dr. K would do in this instance. Has anyone asked Dr. K what if the steroids don't work? My son is on anti psych meds risperdal now. It helps a little but is probably a low dose and needs adjusted. 1mg twice a day. However he good part he is getting along well at school and saves he anger for us at home! Everything here sets him off and nothing there.

 

Our son just complete IVIG with Dr. K 12 days ago. He is 5 1/2 and we think he was originally exposed to Scarlet Fever a year and half ago with his first mild presentation one year ago (cough/clearing of throat), 2nd episode started June 24th with a strep infection (mostly tics, mild OCD). My son was only on antibiotics at time of 5 day steroid burst in August. Dr. K had him draw a picture prior to burst and 14 days post burst to determine fine motor skill improvement 'it was dramatic'. We did see a temporary improvement in our son but once the steroids wore off symptoms increase. Currently, we do not notice any OCD behavior and only minor tics 'blowing on the back of his hand and a total of three cough yesterday' when he is tired. He had a complete melt down yesterday when he dropped one of his Leggo Cars and it broke into pieces.... he was tired. So far, we are very hopeful.

 

As for Dr. K being published.... He is in the process of publishing his finding after 10 years of treating/studying along with Mayo and John Hopkins. I he has also been consulting with Susan Swedo regarding the findings. He said it should be out sometime this fall or early next year.

 

I'm sure with whatever Dr. you consult 'Dr. K or Latimer' they have a plan of action regarding current medications.

 

 

YEY SFMOM!!! This is good news indeed--

TMom

[sf_mom]

During our time with Dr. K..... one of the nurses was telling me about a boy who came in month, after month, after month for IVIG. He was considered in the Autism perspective, his OCD was so bad he wouldn't wear a hospital gown and thought the chairs in the surgery center were too contaminated to sit down. So, he would get IVIG and just pace back and fourth for the 7 hours. After about 12 months of IVIG one of the nurses walked in and he was sitting in a chair. The nurse asked, what are you doing?.................... his response was, WHAT, DID YOU THINK I WAS GOING TO STAND ALL MORNING! I guess everyone cried tears of joy that day. I suspect, some children need more treatments than others and after reading 'Saving Sammy' and just started 'Against Medical Advice' none of the SSRI helped. AND, its very common, some of them actually increase tics.

 

It seems like you got the rage response from the encephalitis in his brain. This is very common response, a friend of mine had cancer of his sinuses. After they treated him for the cancer and removed tumor, he was extremely sensitive to light, noise and had rage behavior to the point his wife almost divorced him. It turned out it was an infection from the surgery, once they resolved the infection he was back to his normal self.

 

Hang in there and keep pressing for help.

 

 

My son got a three week dose of prednisone from Dr. Latimer this summer 30 mg, 20mg, 10mg. He had been having symptoms on and off for 7 years some tics, anxiety and compulsions and moods after strep and ear infections and shots and flu. Well the steroids actually made him angry. I mean enraged. He was throwing chairs at the pool and tables and just irritable and mean. I am not sure what this means and if we were the only ones who did not respond well to steroids. Dr. Latimer said his is more of an anxiety disorder which we now think is Aspergers. Initially it was brought on by strep and then the tics and OCD and moods. I still wonder what Dr. K would do in this instance. Has anyone asked Dr. K what if the steroids don't work? My son is on anti psych meds risperdal now. It helps a little but is probably a low dose and needs adjusted. 1mg twice a day. However he good part he is getting along well at school and saves he anger for us at home! Everything here sets him off and nothing there.

 

Our son just complete IVIG with Dr. K 12 days ago. He is 5 1/2 and we think he was originally exposed to Scarlet Fever a year and half ago with his first mild presentation one year ago (cough/clearing of throat), 2nd episode started June 24th with a strep infection (mostly tics, mild OCD). My son was only on antibiotics at time of 5 day steroid burst in August. Dr. K had him draw a picture prior to burst and 14 days post burst to determine fine motor skill improvement 'it was dramatic'. We did see a temporary improvement in our son but once the steroids wore off symptoms increase. Currently, we do not notice any OCD behavior and only minor tics 'blowing on the back of his hand and a total of three cough yesterday' when he is tired. He had a complete melt down yesterday when he dropped one of his Leggo Cars and it broke into pieces.... he was tired. So far, we are very hopeful.

 

As for Dr. K being published.... He is in the process of publishing his finding after 10 years of treating/studying along with Mayo and John Hopkins. I he has also been consulting with Susan Swedo regarding the findings. He said it should be out sometime this fall or early next year.

 

I'm sure with whatever Dr. you consult 'Dr. K or Latimer' they have a plan of action regarding current medications.

 

 

YEY SFMOM!!! This is good news indeed--

TMom

[EAMom]

Michelle...who about trying a high dose of Augmentin (like Sammy)? Nobody will give you Azith...maybe they will give you Augmentin. I think it's worth a try if at least some of the problem is PANDAS.

[Worried_Dad]

Wow - that's fascinating, and hits home. I don't think this is my son - he's only had 3 rounds of IVIG with Dr. K - but the OCD behaviors are the same. My son was unable to wear a gown or hat or booties as well and would not sit or lay down, stood due to contamination fears. When he had to use the restroom, they had to remove the IV completely, because he had to spray his arms with Lysol afterward (extensively) to decontaminate. It really freaked the surgical nurses out and perplexed Dr. K as well.

 

But - God love the folks at OBSC - they remained patient with us and got our son through the procedure all 3 times. This is what makes me wonder if we need more than 3 rounds of IVIG... but we can't afford to pay up-front again. Sigh....

 

Still waiting on immuno workup from new local doc. If that shows any deficiency, maybe we'll be able to get our insurance to pay for it.

 

Thanks for this story, SF Mom. Between that and Saving Sammy, I'm feeling renewed hope!!!

 

P.S.: EAMom, we're begging our local doc to prescribe "Sam Maloney style" mega-doses of augmentin, too. Dr. K said he's willing to try that, although still isn't comfortable with zithro. Hey, it's worth a shot!

 

 

During our time with Dr. K..... one of the nurses was telling me about a boy who came in month, after month, after month for IVIG. He was considered in the Autism perspective, his OCD was so bad he wouldn't wear a hospital gown and thought the chairs in the surgery center were too contaminated to sit down. So, he would get IVIG and just pace back and fourth for the 7 hours. After about 12 months of IVIG one of the nurses walked in and he was sitting in a chair. The nurse asked, what are you doing?.................... his response was, WHAT, DID YOU THINK I WAS GOING TO STAND ALL MORNING! I guess everyone cried tears of joy that day. I suspect, some children need more treatments than others and after reading 'Saving Sammy' and just started 'Against Medical Advice' none of the SSRI helped. AND, its very common, some of them actually increase tics.

 

It seems like you got the rage response from the encephalitis in his brain. This is very common response, a friend of mine had cancer of his sinuses. After they treated him for the cancer and removed tumor, he was extremely sensitive to light, noise and had rage behavior to the point his wife almost divorced him. It turned out it was an infection from the surgery, once they resolved the infection he was back to his normal self.

 

Hang in there and keep pressing for help.

[ShaesMom]

Still waiting on immuno workup from new local doc. If that shows any deficiency, maybe we'll be able to get our insurance to pay for it.

 

Worried Dad-

 

Have they already done the blood work and you are just waiting on the results? I'm glad you decided to give this route a try--I hate to say this but I hope the results come back showing something so you can move forward with additional treatments for your son.

 

Shae had her fourth round of IVIG today. Can't wait to see if anymore of the behaviors disappear after this round.

[sf_mom]

You are welcome..... keep on keeping and never give up. I say go for the 'Sammy Style'. AND its weird but I'm praying there is an immune deficiency so he can get the care he needs.

 

 

 

Wow - that's fascinating, and hits home. I don't think this is my son - he's only had 3 rounds of IVIG with Dr. K - but the OCD behaviors are the same. My son was unable to wear a gown or hat or booties as well and would not sit or lay down, stood due to contamination fears. When he had to use the restroom, they had to remove the IV completely, because he had to spray his arms with Lysol afterward (extensively) to decontaminate. It really freaked the surgical nurses out and perplexed Dr. K as well.

 

But - God love the folks at OBSC - they remained patient with us and got our son through the procedure all 3 times. This is what makes me wonder if we need more than 3 rounds of IVIG... but we can't afford to pay up-front again. Sigh....

 

Still waiting on immuno workup from new local doc. If that shows any deficiency, maybe we'll be able to get our insurance to pay for it.

 

Thanks for this story, SF Mom. Between that and Saving Sammy, I'm feeling renewed hope!!!

 

P.S.: EAMom, we're begging our local doc to prescribe "Sam Maloney style" mega-doses of augmentin, too. Dr. K said he's willing to try that, although still isn't comfortable with zithro. Hey, it's worth a shot!

 

 

During our time with Dr. K..... one of the nurses was telling me about a boy who came in month, after month, after month for IVIG. He was considered in the Autism perspective, his OCD was so bad he wouldn't wear a hospital gown and thought the chairs in the surgery center were too contaminated to sit down. So, he would get IVIG and just pace back and fourth for the 7 hours. After about 12 months of IVIG one of the nurses walked in and he was sitting in a chair. The nurse asked, what are you doing?.................... his response was, WHAT, DID YOU THINK I WAS GOING TO STAND ALL MORNING! I guess everyone cried tears of joy that day. I suspect, some children need more treatments than others and after reading 'Saving Sammy' and just started 'Against Medical Advice' none of the SSRI helped. AND, its very common, some of them actually increase tics.

 

It seems like you got the rage response from the encephalitis in his brain. This is very common response, a friend of mine had cancer of his sinuses. After they treated him for the cancer and removed tumor, he was extremely sensitive to light, noise and had rage behavior to the point his wife almost divorced him. It turned out it was an infection from the surgery, once they resolved the infection he was back to his normal self.

 

Hang in there and keep pressing for help.

[EAMom]

Go Sammy-style!

[Stephanie2]

Is your child taking Singulair for pandas?? Singulair caused major behavioral issues with my son...

 

Stephanie

 

We were able to get off all psych meds once we started the clarithromycin. Singulair has helped tremendously, almost to the point of the prednisone, at least for part of the day. She still has "break through" days though where the PANDAS symptoms come through and it's awful. But not any different than how she was on risperdal, which did nothing to help her except slow her down.