3 month IVIG update

[kimballot]

I thought I'd post an update on my 14 year old son's progress after IVIG. I previously posted a 4-week and 8-week update (http://www.latitudes.org/forums/index.php?showtopic=13259&st=0&p=109926&fromsearch=1entry109926). Basically, my son did well for the first 2 weeks after IVIG but then began sudden-onset depression with rages and defiance, which necessitated 2 inpatient admissions in 3 weeks time.

 

Week 9 - DS underwent IVIG #2. He was resistant to another IVIG, but agreed to give it a try as we explained to him that his sinuses were finally clear and if the antibodies decrease he may get another sinus infection and then we would be back to the starting point and we may have to go through all of this gain. He was still having waves of anxiety, OCD, depression and rages, but in between I saw my son - sometimes for a couple of hours at a time. The week ended with a destructive rage at home, necessitating intervention from a crisis worker. However, he calmed after talking with the worker for an hour and he did not need to be readmitted to the hospital.

 

Week 10 began with another destructive rage at home. This time, I called the police as he was not calming down and I could not wait for a crisis worker. Four police officers responded - two spoke to my son while two spoke to my husband and me. We went through the PANDAS story again and thanked them for their help.

 

The officers who spoke to my son came downstairs shaking their heads. They informed my son that it is against the law to destroy property - even in his own home - if the homeowner tells him to stop (my son actually seemed surprised by this). The officers were shaking their heads and said "You need help. When a 14 year old speaks to a police officer with such defiance he is headed for trouble... if it were my kid I'd get the juvenile justice system involved and get a judge to set some limitations". We explained (again) that we have only had a defiant child for a couple of months and we are really new to this.

 

The next day I received a phone call from an officer in the juvenile unit to discuss the situation. I opened my mouth and he listened for the next 3-4 minutes as I rattled off my speech about how my son has PANDAS, sinusitis, IVIG, and the most current situation. Then I said "does that make sense?". He said it did and then went on to ask me "what can we do to help you?" It was so sincere and so kind that I just wanted to cry. I said "just somehow flag him so that if you get a call again the officers will know what we are going through and will know we are not crazy parents". He said he would and he told me to call if my son does anything defiant without stopping after a warning... if he leaves the house without permission, call.... if he swears at you without stopping, call... if he goes into a rage and throws things, call.... we can come out and deescalate the situation. I think just knowing that I had my own police officer and that they would be part of this team has been helpful. I have not had to call - probably because my son knows I will and all I have to say is "are you really going to do that again and make me call the police?"... then he stops.

 

Week 11- DS did better at home and followed most of the basic rules we set for him. We still had some problems with school (getting there in the morning), and he did not know what he was supposed to do for homework each night. It seemed he was spending much of his time in school being pulled from classes for all the work he missed - then he couldn't do his homework at night because he had missed class. I was too exhausted from trying to minimize rages at home and contact all the doctors and therapists to really deal with homework much. If he did one piece of homework a night I was happy.

 

At the end of the week he went to an LLMD. In the past, his igenex test was indeterminate for a couple of bands and I wanted to have an LLMD look at him. I have to say that this LLMD was very thorough. She read over all the information I sent beforehand, and came in with a good understanding of DS situation. It was very nice to talk with a doctor who "speaks PANDAS", and she really understood that my son's main PANDAS trigger was sinusitis. She was very supportive of the IVIG in our case and encouraged me to continue with IVIG treatments. She also pointed out that singulair could be triggering depression symptoms, and I did take him off singulair after the visit. Regarding lyme, she agreed that on the surface my son's lyme tests should be interpreted as negative. However, given the post-IVIG problems, we really should rule out infections carefully. He had already been tested for strep and mycoplasma the previous week. She spent some time talking with me about the different stages of the lyme spirochete and the need to attack it with a variety of antibiotics before testing again. In the end, we decided to do an antibiotic challenge followed by another Igenex test just before the next IVIG.

 

Week 12-we are continuing to have periods of defiance (especially around homework and school), with periods of school refusal. However, DS is beginning to show an interest in previous activities. He came home from school on Friday with friends and then went to a friend's house for a few hours. He is back to playing video games for the first time in 2 months, and has a sense of humor. I am still concerned about rages, but I am more concerned about executive functions as he has lost ground in that area with each exacerbation.

 

I've contacted Dr. M's office in Florida and am exploring the intensive CBT program they have. I am also hoping she can evaluate him for possible medication - though I am not sure for what (Attention? OCD? Anxiety? Depression?). We have a local psychiatrist but he is being very cautious and would like input from Dr. M if we can get it.

 

So - overall, this last month has been a month of recovery - though we are not at baseline yet.

 

Thank you, again, to everyone who has offered help and prayers and good thoughts... and also thank you to everyone who has posted their story in the past. Your stories have help me to find my way through this maze!

Edited June 18, 2011 by kimballot

[SSS]

Thank you so much for typing this out- it helped me personally.

You are an amazing Mother-

God bless, sending you good thoughts----

[lynn]

Hi Kim--

 

I'm so sorry it's been such a rough road! We had a similar experience with tanking after IVIG. DS started hitting me and things were getting very dangerous, as well as DS deeply depressed that he was hitting his mother. The extreme rages on DS's part were very much modulated by intensive CBT, so I'm a proponent of that. Our problem is that we have had a bit of backsliding, but I do see DS using his new tools in ways I hadn't anticipated.

 

Haven't gotten Lyme test results back yet. Can you let me know who you are using as LLMD?

 

Lynn

[wornoutmom]

Wow Kim. Reading that update was like reading my own story from a year ago with my 14 year old son. Like - down to almost every last detail except we hadn't gotten IVIG yet. It's eerily similar. Almost creepy. Can I ask if you have tried Biaxin as an antibiotic yet? The start of that drug began the tapering off of the rage and defiance for my son.

[kimballot]

Wow Kim. Reading that update was like reading my own story from a year ago with my 14 year old son. Like - down to almost every last detail except we hadn't gotten IVIG yet. It's eerily similar. Almost creepy. Can I ask if you have tried Biaxin as an antibiotic yet? The start of that drug began the tapering off of the rage and defiance for my son.

 

Worn out Mom - That is SO funny because you are one of the people I followed the closest last year because of the striking similarities with my son. Yes - I learned a great deal from you, so that may be why they look so similar!

 

My son has never done well with biaxin. From the time he was a preschooler he had bad behavior on biaxin (though at the time no one could tell me how it was related). Last year he had lots of tics at the end of a 10-day course (and lots of stomach pain during the course). I don't know if it is the herxing or if there is some undrlying lyme.

 

I am waiting for this lyme regimen and testing... But you are right... we probably should re examine the antibiotic. Thanks!

[sf_mom]

I just wanted to add a little about my knowledge of Biaxin and why it may or may not work.

 

In the Lyme world they know two specific infections cross into the brain: Lyme and Bartonella. This was proved through biopsy. It is those antibiotics that cross into the brain and kill infection in all forms (L, cyst, active) and the combo of antibiotics that are extremely effective for chronic infections in the brain. Biaxin is one of those drugs that gets into the brain along with Cedax and a few others. In contrast, Azithro will cross into the brain but only in small amounts and will only kill Lyme in its active form.... so, 'less effective'. Biaxin is often used in combo with another antibiotic to treat Bartonella. Bartonella is known to specifically cause rage behavior and neuropsych symptoms of all types but mostly OCD, panic attacks, anxiety and rage.

 

I've attached a symptom list below for reference. Unfortunately, its hard to determine 'what is what' in terms of Lyme, Bartonella, PANDAS as the symptoms list often overlap. Oftentimes an individual with Lyme/Bartonella is presenting with 'only' neuropsych symptoms and no physical symptoms making diagnoses difficult. Another common theme... is once the individual is on combo'd antibiotics for some time they will break out with typical Bartonella rashes as a herx response. Associated rashes can be viewed http://www.drjoneskids.com/, double click on any image to enlarge and you'll find 82 photos of different rashes. Specifically my twins suffer for severe Livedo Reticularis..... over their entire bodies up to cheeks. I do wish I had seen these photos much earlier and its relationship to Lyme/Bartonella.

 

Our experience with some of the combo antibiotics produced a huge herxheimer response..... appearing to make our children temporarily worse. My older DS is going on 20 weeks of new symptoms cropping up in direct response to Cedax that are finally starting to resolve. He is also on Biaxin and again it is the combo of the two that work together to really get at the infection in the brain. My younger DS who is also confirmed positive for Bartonella had an awful response to a rotation to rifampin for almost 6 weeks now with the return of rages, OCD, total potty training regression and is back to wearing a diaper at almost 4. We are slowly pulling out of this particular herx response with an over night improvement in social anxiety in the last two weeks.

 

Anyway, I'm outlining all of the above because I do believe the effectiveness of Biaxin with rages is very telling along with initial negative response. Because there is so much cross over with symptoms and an inability for clear cut test results. Sometimes it is response or initial negative response along with 'eventual' improvement that could be the clue to diagnoses.

 

I think you are taking all the necessary steps to get your son well and I wish you continued improvement. I commend you on your efforts. I need to add that many/not all children with chronic infection had a severe 'herx.. or negative response with hdIVIG, not sure what is going on'. BUT, we do know that once the repeat hdIVIG treatments were stopped and combo'd antibiotics used the child improve tremendously within the next 6 months to a year. With chronic infection it is long hard battle and no easy road to recovery with average recovery being two years.

 

Wishing you all the best.

 

Aggression

Agitation

All Psychiatric disorders

Bartonella Causes over 200 Body Problems and Can Harm Any Organ

But Some Patients Have No Clear Symptoms

Confusion and Cognitive Troubles

Depression and Anxiety

Dizziness

Dozens of Types of Rashes

Drowsiness

Eye Disorders, e.g., Blurred Vision, Depth Perception, and Retinal Damage

Fainting

Fatigue

Headaches

Impulsivity

Irritability

Joint Pain

Kidney, Bladder, and Urogenital Disorders

Lumps in the Skin

Memory Problems

Migraines

Muscle Spasms and/or Weakness

Numbness or Loss of Sensation

Oxygen Deprivation

Panic Attacks

Physically or Verbally Violent behavior

Polyps in or on Major Organs

Profound Sensitivity to Medications

Sleep Disorders

Treatment Resistant Addictions and Compulsions

Tremors

Upper and Lower G.I. Tract Disorders

Edited May 19, 2011 by SF Mom

[tpotter]

I am so glad to hear that your son is doing better, and even more excited that you have such an understanding police force. I was always afraid to call in the police, even though things were terribly scary at times, because I was sure it would be misunderstood, particularly since I was having so much trouble even getting local doctors on board.

 

That being said, I highly urge everyone who has their children on several abx to regularly check their liver functions. One of my DSs is ok, but the other has had to be pulled off EVERYTHING, because his liver function has been going up for the past 4 months, and this past month took a very large rise. Right now, we are heading over to get an abdominal US to find out why his abdomen is so painful, and we have aso and antidnaseB testing, plus a bunch more going on. But, the bottom line is that he can't take oral abx now, even if it is strep (which certainly looks like to me). Keep an eye on it.

[sf_mom]

Liver function should be check regularly regardless of combo'd antibiotics or not. Some antibiotics can be more toxic to liver than others. Sometimes a rotation to 'other' antibiotics less toxic to liver function is fine/appropriate. A skilled LLMD should be aware of which antibiotics are less so or more so toxic to liver and when closer monitoring is required.

 

Edit: Plus there are numerous methods to help support liver function while on long term antibiotics such as a bile binder or liver detox's... Helps to eliminate toxins from so it isn't in over drive.

 

 

-Wendy

Edited May 17, 2011 by SF Mom