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steroid burst when symptoms not that bad


dabel

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In some cases steroids are used as a diagnostic tool. A very short course of steroids and the responsiveness of the child is indicative of the type of recovery or improvement a child might see after IVIG. We did this with Dr. Kovacevic prior to IVIG.

 

Others who have used longer courses of steroid can better respond to that type of treatment.

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The first steroid burst we did...my son was doing well...not showing many symptoms. We did not see a response....Dr.K told us that the lack of response was due to lack of symptoms. He was more symptomatic when we tried it again...and saw great improvement. Be careful to use this as diagnostic if your son is doing well.

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I do wonder (just a weird theory) if using steroids b-4 IVIG enables the IVIG be more effective....getting the b-cell activation down etc.

 

But, if your son's symptoms aren't severe...it would be harder to see a change, so that does limit it's value as a diagnostic tool, when your son has minimal symptoms.

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dabel,

would you mind giving some more details about your child's history? Is he currently on antibiotics and that's why his symptoms are mild now? what are they btw and how long? why have you and doctor decided on IVIG?

 

thanks so much, this helps some of us who are still figuring things out.

 

 

Faith

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Dear DeAnn,

 

I am so glad that you are here. You will get so much information from this forum. It has saved me. These Mom's and Dad's are so full of knowledge about PANDAS. Some of the parents continue to post long after their kids are recovered, how amazing is that. I think part of the reason is that we as parents suffer so much to see our kids suffer and no parent wants another child or parent to go through what they have.

 

Sorry I had to hang up today, my son Ryan had a melt down because the alarm testing for the local power plant went off again!

 

Talk to soon,

 

Judy...

 

I have a quick question. My son's dr wants him to do a steroid burst before we do IVIG. We started it today but his symptoms are not that bad right now so what information will this really give us.
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dabel,

would you mind giving some more details about your child's history? Is he currently on antibiotics and that's why his symptoms are mild now? what are they btw and how long? why have you and doctor decided on IVIG?

 

thanks so much, this helps some of us who are still figuring things out.

 

 

Faith

 

Faith,

 

My son was just diagnosed last week. We went to see Dr.K in Chicago. My son has had this for a long time. He is twelve years old and crashed at 5 but doctors kept missing it. I believe he has had this condition since he was 2. He does not have TICS but has the OCD. When he was 5 he became like a rabid animal virtually overnight after a rectal strep infection and 5 year vaccinations. He has been inpatient twice. Once at 8 for being suicidal and once at 11 for being homicidal. When he was in a year ago they missed this. The doctor had never seen a child like mine before and the psychologist suggested it minght be PANDAS. They checked his ASO and it was 400. The doc thought it was elevated but not extreme so it warranted checking again if we ran in to another problem. He was medically excused for the entire school year last year and is still recovering from this bout. He made some homicidal comments again and I thought what the heck I'll have the strep levels checked. His ASO is 400 and his Dnase B is 1590. This prompted me to take him to Dr.K. Dr.K feels we are up against the clock because of my sons age, the fact that he has had this so long without treatment, and that he hit puberty a couple of years ago. The doc doesn't want to spend the time trying long term antibiotics as he feels it won't work and wants to head straight to IVIG. I feel bad because I kind of looked into PANDAS last year and dropped the ball. I didn't fully understand what OCD was - I thought it was people who wash their hands 100 times a day etc. which is not the case with my child. He has the intrusive thoughts etc. There have been times that things have been relatively normal around here and we have thought that we had it licked and then BAM it's back! Now I understand why. I'm really concerned that he is too old but I'm praying for the best.

 

DeAnn

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DeAnn,

 

Welcome. I wanted you to know my daughter is even older than your son (17) and though her presentation may not be quite as frightening, she has gone undiagnosed for much longer. I haven't yet done IVIG but have had dramatic improvement with ridding her system of strep (it was her tonsils that we took out that were abscessed), and now antibiotics and steroids. We aren't yet to 100%, but know with all my heart we are on the right track with responses we never saw with CBT/ERP and SSRI's. Once you start seeing his personality changing as the OCD abates, it will fill your heart with hope. Expect 2 steps forward, 1.5 steps back in the recovery. The setback days are difficult to ride through if you don't have the hope and belief you are on the right track for true treatment.

 

I know others will say this, please consider starting full strength. long term antibiotics before IVIG and after to make sure he has no hidden strep that would lessen the long term benefits of the IVIG.

 

Please keep us updated, we all hang on the journey of others while our kids are sick.

 

Ellie

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Hi DeAnn - are the homicidal comments things that he "worries that he might do" (OCD) or actual actions or threats that he is making? Intrusive thoughts are one of the hardest OCD symptoms to have, just because most people are too worried to seek help to deal with them, and other people worry that you may be serious. I am so sorry that he is dealing with this and hope that the IVIG is very helpful. There is a great book called "Imp of the Mind" that you may want to read and then decide if your son is old enough to read this as well. It is very helpful for understanding how often this happens, and why, and that it does not mean that you are going to do any of the things that you are obsessing about. You might also want to go to A&E online & watch some of the old shows about Intrusive Violent Thought OCD. It might help in understanding. In the meantime, I am so glad that you found Dr. K. If the IVIG does not work, or it leaves a "little" behind, there is therapy for this that does help. And I am sure we will all tell you that we firmly believe in anti-biotics after the IVIG. All my best -

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dabel,

would you mind giving some more details about your child's history? Is he currently on antibiotics and that's why his symptoms are mild now? what are they btw and how long? why have you and doctor decided on IVIG?

 

thanks so much, this helps some of us who are still figuring things out.

 

 

Faith

 

Faith,

 

My son was just diagnosed last week. We went to see Dr.K in Chicago. My son has had this for a long time. He is twelve years old and crashed at 5 but doctors kept missing it. I believe he has had this condition since he was 2. He does not have TICS but has the OCD. When he was 5 he became like a rabid animal virtually overnight after a rectal strep infection and 5 year vaccinations. He has been inpatient twice. Once at 8 for being suicidal and once at 11 for being homicidal. When he was in a year ago they missed this. The doctor had never seen a child like mine before and the psychologist suggested it minght be PANDAS. They checked his ASO and it was 400. The doc thought it was elevated but not extreme so it warranted checking again if we ran in to another problem. He was medically excused for the entire school year last year and is still recovering from this bout. He made some homicidal comments again and I thought what the heck I'll have the strep levels checked. His ASO is 400 and his Dnase B is 1590. This prompted me to take him to Dr.K. Dr.K feels we are up against the clock because of my sons age, the fact that he has had this so long without treatment, and that he hit puberty a couple of years ago. The doc doesn't want to spend the time trying long term antibiotics as he feels it won't work and wants to head straight to IVIG. I feel bad because I kind of looked into PANDAS last year and dropped the ball. I didn't fully understand what OCD was - I thought it was people who wash their hands 100 times a day etc. which is not the case with my child. He has the intrusive thoughts etc. There have been times that things have been relatively normal around here and we have thought that we had it licked and then BAM it's back! Now I understand why. I'm really concerned that he is too old but I'm praying for the best.

 

DeAnn

DeAnn-

 

Dawn here. There shouldn't be any reason you can't get going on abx and move fwd with IVIG. Dr. K bumped Evan's abx to 875mg 2x/day.(Augmentin) post IVIG after I inquired. I'd email him and ask if you could just pull out all the stops: high dose abx and get scheduled for IVIG. Or is Dr. K the one suggesting the steroid burst? I'd try to get abx while you're trying to get everything in place. He is good about emailing back. Give me a call tonight if you want. This is all frustrating--I know! There have been other older kids helped with the abx. Dr. K has just started to get a bit more comfortable prescribing high dose abx. Give him a try. Dawn

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DeAnn,

 

Welcome. I wanted you to know my daughter is even older than your son (17) and though her presentation may not be quite as frightening, she has gone undiagnosed for much longer. I haven't yet done IVIG but have had dramatic improvement with ridding her system of strep (it was her tonsils that we took out that were abscessed), and now antibiotics and steroids. We aren't yet to 100%, but know with all my heart we are on the right track with responses we never saw with CBT/ERP and SSRI's. Once you start seeing his personality changing as the OCD abates, it will fill your heart with hope. Expect 2 steps forward, 1.5 steps back in the recovery. The setback days are difficult to ride through if you don't have the hope and belief you are on the right track for true treatment.

 

I know others will say this, please consider starting full strength. long term antibiotics before IVIG and after to make sure he has no hidden strep that would lessen the long term benefits of the IVIG.

 

Please keep us updated, we all hang on the journey of others while our kids are sick.

 

Ellie

 

I hope things continue to improve for your daughter! One thing that perplexes me is that the only strep infection that I am aware of for my son was when he was five. I have since figured out that when he gets sick he slips backwards.

This could be from a virus or bacteria. The episode his still recovering from that occured over a year ago started with a bad staph infection on his feet. It is my understanding that the immune system just gets messed up and many things can trigger the problem. Your story gives me hope!

 

DeAnn

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Hi DeAnn - are the homicidal comments things that he "worries that he might do" (OCD) or actual actions or threats that he is making? Intrusive thoughts are one of the hardest OCD symptoms to have, just because most people are too worried to seek help to deal with them, and other people worry that you may be serious. I am so sorry that he is dealing with this and hope that the IVIG is very helpful. There is a great book called "Imp of the Mind" that you may want to read and then decide if your son is old enough to read this as well. It is very helpful for understanding how often this happens, and why, and that it does not mean that you are going to do any of the things that you are obsessing about. You might also want to go to A&E online & watch some of the old shows about Intrusive Violent Thought OCD. It might help in understanding. In the meantime, I am so glad that you found Dr. K. If the IVIG does not work, or it leaves a "little" behind, there is therapy for this that does help. And I am sure we will all tell you that we firmly believe in anti-biotics after the IVIG. All my best -

Thank you for the info. Unfortunately I have no doubt in my mind that my son would do these things! It is only a matter of time. He had a psychological profile done when he was inpatient and they came to that conclusion also. We almost had to get a CHPS order! That is were the court gets involved because there is such a danger. As it turned out he came home and did not do well here. The psychiatrist felt it was too dangerous for him to be in our home and he spent almost the last year at my mothers. He has been home now for about two months. Things have been bumpy but he is on an uphill swing. I know this is temporary but I am going to enjoy it while I can. I just want the IVIG soon and pray that it will work!! Dr.K did not mention putting him on antibiotics before or after the treatment yet.

 

DeAnn

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This might help with understanding why you only have one documented strep infection. Taken from a recent article with comments from Susan Swedo.....

 

 

How Does Strep Lead to Psychiatric Symptoms?

 

The discovery of PANDAS came through observing the reactions of patients. Initially, Swedo's team noticed a group of patients who were ill with infections and then suddenly developed dramatic psychiatric symptoms. At first, they were not sure streptococcus was the culprit but research soon isolated the strep antibodies as an important focus of interest.

 

PANDAS is controversial in medical circles with some physicians questioning whether such extreme psychiatric symptoms can be triggered by strep antibodies. However, according to Dr. Swedo, there is little doubt that the body's efforts to fight the strep bacteria set off a chain of events leading to PANDAS symptoms. "The science is clear now," Swedo asserts. "We not only have a direct relationship between the anti-strep antibodies and the anti-neuronal antibodies, but also have demonstrated that the antibodies interact with receptors in the brain that could produce the symptoms observed."

 

Normally when the strep bacteria enter the body, they defend themselves by mimicking healthy cells and elude detection by the immune system. Using the stealth strategy, the strep bacteria create an infection. In response, the body naturally creates antibodies - cellular components designed to find the bacteria, bind with them and direct the immune system to destroy the bacteria. When this happens as designed, the antibodies find the strep bacteria and the immune system wins the battle.

 

However, antibodies are not terribly discriminating and sometimes cannot tell a streptococcus bacterium apart from a healthy cell. In some children, these antibodies pass into the brain and look for something to connect with. In PANDAS, the strep antibodies are unable to discriminate between strep and healthy brain cells. However, the union of strep antibody and neural tissue is not a match made in heaven. Recent research, reported last fall by University of Oklahoma researcher, Madeleine Cunningham, suggests that the antibodies connect with parts of the brain which regulate repetitive behaviors and movement, such as compulsions and tics. According to Dr. Swedo, such autoimmune actions may have the direct result of producing obsessions, compulsions and tics; and in addition, they might indirectly offset the critical balance of brain chemistry which regulates mood and emotion.

 

Compounding the problem is the durability of strep antibodies. They can remain on the prowl for a hook up weeks after the strep is gone. Subsequent infections or even colds can stimulate the immune system to produce more of the same kind of antibodies which the triggered the original symptoms. PANDAS children can then abruptly re-experience the same symptoms after a symptom-free span of time. Dr. Swedo explained, "We see a saw-toothed pattern of symptoms, extreme outbursts of behaviors for a brief period in response to the infections and then the child may be relatively symptom-free for a period of time."

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In an OCD group I sometimes frequent, one person posted that his OCD is homicidal thoughts. He said he wouldn't act on them, but out of nowhere, the thought would enter his head "you're going to kill the neighbor kid". He actually said one of the worst things someone could ask him was if he was going to act on those thoughts because it would make them worse. I think it reinforced the thoughts and empowered the OCD.But I can totally see why someone would feel the need to ask him that.

He made some homicidal comments

 

DeAnn

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DeAna,

I, like you, can also only document one strep infection at 7 yrs old (my son is 10 1/2 now), however he did have tics prior to this one. I can definitely say there have been viruses of the 24 hr. kind for him once or twice per year after that, and maybe it is what could be going on in my son too, subsequent illness triggering or stimulating the immune system to produce those same antibodies that will run amok and attack the brain? just don't know.

 

my son's main symptoms are tics, vocal and head, with some ocd here and there.

 

Could I ask what Dr. K's take on it was? did you discuss this?

 

Wendy, thanks for the above, I'm going to add this to my ever thickening file... :blink:

Faith

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