FASD, rages, round 3 of antibiotics for strep

[needcoffee]

We adopted our now 12 year old son from the foster care system. He had been prenatally exposed to alcohol and has been diagnosed with Alcohol Related Neurodevelopmental Disorder (a FASD- Fetal Alcohol Spectrum Disorder). His FASD is permanent brain impairment that manifests in behaviors and these include rages, OCD type behaviors, anxiety, difficulty regulating mood, etc... but he is a great kid who is loving and sweet despite it all.

 

When he was 6 years old we saw a sudden and significant spike in his OCD and anxiety behaviors. Our pediatrician had worked with one other child who had this kind of reaction to strep so he suggested that we run a strep culture. It was positive even though there were no physical symptoms of the illness. Our pediatrician did not know what to call it but he had the wisdom to run the culture and I have always been thankful for that. We had a standing strep culture order after that so we could catch and treat any infections early. Antibiotics worked every time. Until this year.

 

Our son has been in special education and has received behavior support since he started school. Rages were not uncommon but from late April 2010 to mid-May 2010 there were three severe raging episodes at school that required the school staff to call police in order to keep everyone safe. This was not his typical reaction to strep, but I had the mom-sense to ask our pediatrician about the possibility. He doubted it but he ran a culture to appease me. It was positive.

 

Round one of penicillin began at the end of May. It ended in mid-June and on June 22 there was another very violent rage. I asked for a culture to be sure the strep had cleared. It was positive.

 

Round two of penicillin (two 250mg tablets twice a day for 10 days) started on June 26.

 

On July 8 our son raged so violently that we had to take him to the emergency room. He was calm by the time we got there and I asked them to run a strep culture. They ran both a rapid screen and a regular culture and both came back positive. Our pediatrician decided to try another antibiotic and he started Doxycycline Hyclate 100mg for 20 days. Our son took his last dose yesterday and last night he raged for 45 minutes, throwing things, tipping over heavy furniture and charging at people. We did foster care for 16 years and we have parented our two adopted children with FASD for more than a decade so we are used to dealing with behavior issues and raging, but this was scary.

 

We are having him cultured again tomorrow so by Friday we'll know if we were able to clear it this time.

 

My son's cognitive abilities decrease significantly when he escalates. He can't be "reasoned with" and we often just need to ride out the rage and try to keep everyone safe in the process. I view it like I view a seizure. He doesn't want to act like this and he is extremely remorseful and teary-eyed afterwards. We have learned over the years how to co-regulate him and to employ strategies to keep his environment from overwhelming him but what we are dealing with now is almost beyond what we can manage.

 

The basal ganglia in the brain are already affected by his prenatal exposure to alcohol and according to what I've read about PANDAS that area is now under additional attack by his body's immune system. He is on several psychotropic medications to help with the FASD and we are now having to face adding to those. It breaks my heart because all of these problems seem to be medically based.

 

We are in southern Minnesota. Is there anyone in this area that specializes in the treatment PANDAS? We are desperate. My son's life could be at stake. (He has gone out second floor windows and run into traffic during rages.) Thank you in advance for any advice you can offer.

 

~Needcoffee

[colleenrn]

If he cultures positive, you may want to think about trying azithromycin (zithromax). The penicillin 250mg 2x/day is a really low dose of antibiotics, so that may be why he was still positive for strep. I am not sure why your doctor would use such a low dose. Sometimes giving ibuprofen can help b/c it decreaeses brain inflammation. Have he ever been on a steroid burst or more extneded course of steroids (one month) to also aid in decreasing inflammation? That may help.

 

I know with my children that they decline whenever they are not on antibiotics, so keeping your son on antibiotics may be needed.

 

Colleen

[sf_mom]

From MN myself and attended Mankato State University back in the day. I recommend you consult Dr. Kovacevic out of Chicago http://www.webpediatrics.com/pandasclinicalcases.html a.s.a.p.

 

Because you are from a Lyme intense state I would also test for Lyme/co-infections in via Igenex (800.832.3200 for test kit) in advance of a consultation with Dr. K. It is very possible he has multiple infections and Lyme has similar symptom presentation. My friend, who is from Pepin, WI grew up on a dairy farm with at least 20 farrow cats at any given time is looking into the possibility she gave him Lyme while pregnant. Her son was classic Pandas and reactive to strep that elevated to the level of RF..... after two IVIGs with Dr. K in Chicago her son still had anxiety, panic attacks, rages and OCD and was then tested for Lyme. He came back positive for Bartonella and Ehrlicia, co-infections to Lyme and is now being treated for those infections. The strep titers and TICS resolved after first IVIG treatment.

 

I am positive there are some Lyme Literate Dr.'s in your area that would also be happy to help immediately. You can contact ILADS for a referral.

 

Good Luck.

 

 

 

 

We adopted our now 12 year old son from the foster care system. He had been prenatally exposed to alcohol and has been diagnosed with Alcohol Related Neurodevelopmental Disorder (a FASD- Fetal Alcohol Spectrum Disorder). His FASD is permanent brain impairment that manifests in behaviors and these include rages, OCD type behaviors, anxiety, difficulty regulating mood, etc... but he is a great kid who is loving and sweet despite it all.

 

When he was 6 years old we saw a sudden and significant spike in his OCD and anxiety behaviors. Our pediatrician had worked with one other child who had this kind of reaction to strep so he suggested that we run a strep culture. It was positive even though there were no physical symptoms of the illness. Our pediatrician did not know what to call it but he had the wisdom to run the culture and I have always been thankful for that. We had a standing strep culture order after that so we could catch and treat any infections early. Antibiotics worked every time. Until this year.

 

Our son has been in special education and has received behavior support since he started school. Rages were not uncommon but from late April 2010 to mid-May 2010 there were three severe raging episodes at school that required the school staff to call police in order to keep everyone safe. This was not his typical reaction to strep, but I had the mom-sense to ask our pediatrician about the possibility. He doubted it but he ran a culture to appease me. It was positive.

 

Round one of penicillin began at the end of May. It ended in mid-June and on June 22 there was another very violent rage. I asked for a culture to be sure the strep had cleared. It was positive.

 

Round two of penicillin (two 250mg tablets twice a day for 10 days) started on June 26.

 

On July 8 our son raged so violently that we had to take him to the emergency room. He was calm by the time we got there and I asked them to run a strep culture. They ran both a rapid screen and a regular culture and both came back positive. Our pediatrician decided to try another antibiotic and he started Doxycycline Hyclate 100mg for 20 days. Our son took his last dose yesterday and last night he raged for 45 minutes, throwing things, tipping over heavy furniture and charging at people. We did foster care for 16 years and we have parented our two adopted children with FASD for more than a decade so we are used to dealing with behavior issues and raging, but this was scary.

 

We are having him cultured again tomorrow so by Friday we'll know if we were able to clear it this time.

 

My son's cognitive abilities decrease significantly when he escalates. He can't be "reasoned with" and we often just need to ride out the rage and try to keep everyone safe in the process. I view it like I view a seizure. He doesn't want to act like this and he is extremely remorseful and teary-eyed afterwards. We have learned over the years how to co-regulate him and to employ strategies to keep his environment from overwhelming him but what we are dealing with now is almost beyond what we can manage.

 

The basal ganglia in the brain are already affected by his prenatal exposure to alcohol and according to what I've read about PANDAS that area is now under additional attack by his body's immune system. He is on several psychotropic medications to help with the FASD and we are now having to face adding to those. It breaks my heart because all of these problems seem to be medically based.

 

We are in southern Minnesota. Is there anyone in this area that specializes in the treatment PANDAS? We are desperate. My son's life could be at stake. (He has gone out second floor windows and run into traffic during rages.) Thank you in advance for any advice you can offer.

 

~Needcoffee

[needcoffee]

If he cultures positive, you may want to think about trying azithromycin (zithromax). The penicillin 250mg 2x/day is a really low dose of antibiotics, so that may be why he was still positive for strep. I am not sure why your doctor would use such a low dose. Sometimes giving ibuprofen can help b/c it decreaeses brain inflammation. Have he ever been on a steroid burst or more extneded course of steroids (one month) to also aid in decreasing inflammation? That may help.

 

I know with my children that they decline whenever they are not on antibiotics, so keeping your son on antibiotics may be needed.

 

Colleen

 

 

Thanks for the reply, Colleen. I should have been more clear in saying that the dose was 2 tablets of 250mg each so it was actually 500mg 2x a day. I hadn't heard anything about ibuprofen before so thank you for that information! We haven't tried steroids yet and I am a little leery of doing so because his sister (also adopted into our family, same birth mom but different birth dads) has had steroid psychosis when we've used them for her multiple pneumonias. (I am not a doctor, just a worn out mom so I'll check into this.) Thanks again for the wisdom!

~Needcoffee

[kimballot]

I agree with the Lyme consult - I was thinking "co infection" while reading your other post. Has your son be tested for mycoplasma? Mycoplasma can cause sudden psychiatric symptoms also. Also agree with getting him to a PANDAS Doc.

 

Best wishes - and please keep us posted on your progress.

 

 

From MN myself and attended Mankato State University back in the day. I recommend you consult Dr. Kovacevic out of Chicago http://www.webpediatrics.com/pandasclinicalcases.html a.s.a.p.

 

Because you are from a Lyme intense state I would also test for Lyme/co-infections in via Igenex (800.832.3200 for test kit) in advance of a consultation with Dr. K. It is very possible he has multiple infections and Lyme has similar symptom presentation. My friend, who is from Pepin, WI grew up on a dairy farm with at least 20 farrow cats at any given time is looking into the possibility she gave him Lyme while pregnant. Her son was classic Pandas and reactive to strep that elevated to the level of RF..... after two IVIGs with Dr. K in Chicago her son still had anxiety, panic attacks, rages and OCD and was then tested for Lyme. He came back positive for Bartonella and Ehrlicia, co-infections to Lyme and is now being treated for those infections. The strep titers and TICS resolved after first IVIG treatment.

 

I am positive there are some Lyme Literate Dr.'s in your area that would also be happy to help immediately. You can contact ILADS for a referral.

 

Good Luck.

 

 

 

 

We adopted our now 12 year old son from the foster care system. He had been prenatally exposed to alcohol and has been diagnosed with Alcohol Related Neurodevelopmental Disorder (a FASD- Fetal Alcohol Spectrum Disorder). His FASD is permanent brain impairment that manifests in behaviors and these include rages, OCD type behaviors, anxiety, difficulty regulating mood, etc... but he is a great kid who is loving and sweet despite it all.

 

When he was 6 years old we saw a sudden and significant spike in his OCD and anxiety behaviors. Our pediatrician had worked with one other child who had this kind of reaction to strep so he suggested that we run a strep culture. It was positive even though there were no physical symptoms of the illness. Our pediatrician did not know what to call it but he had the wisdom to run the culture and I have always been thankful for that. We had a standing strep culture order after that so we could catch and treat any infections early. Antibiotics worked every time. Until this year.

 

Our son has been in special education and has received behavior support since he started school. Rages were not uncommon but from late April 2010 to mid-May 2010 there were three severe raging episodes at school that required the school staff to call police in order to keep everyone safe. This was not his typical reaction to strep, but I had the mom-sense to ask our pediatrician about the possibility. He doubted it but he ran a culture to appease me. It was positive.

 

Round one of penicillin began at the end of May. It ended in mid-June and on June 22 there was another very violent rage. I asked for a culture to be sure the strep had cleared. It was positive.

 

Round two of penicillin (two 250mg tablets twice a day for 10 days) started on June 26.

 

On July 8 our son raged so violently that we had to take him to the emergency room. He was calm by the time we got there and I asked them to run a strep culture. They ran both a rapid screen and a regular culture and both came back positive. Our pediatrician decided to try another antibiotic and he started Doxycycline Hyclate 100mg for 20 days. Our son took his last dose yesterday and last night he raged for 45 minutes, throwing things, tipping over heavy furniture and charging at people. We did foster care for 16 years and we have parented our two adopted children with FASD for more than a decade so we are used to dealing with behavior issues and raging, but this was scary.

 

We are having him cultured again tomorrow so by Friday we'll know if we were able to clear it this time.

 

My son's cognitive abilities decrease significantly when he escalates. He can't be "reasoned with" and we often just need to ride out the rage and try to keep everyone safe in the process. I view it like I view a seizure. He doesn't want to act like this and he is extremely remorseful and teary-eyed afterwards. We have learned over the years how to co-regulate him and to employ strategies to keep his environment from overwhelming him but what we are dealing with now is almost beyond what we can manage.

 

The basal ganglia in the brain are already affected by his prenatal exposure to alcohol and according to what I've read about PANDAS that area is now under additional attack by his body's immune system. He is on several psychotropic medications to help with the FASD and we are now having to face adding to those. It breaks my heart because all of these problems seem to be medically based.

 

We are in southern Minnesota. Is there anyone in this area that specializes in the treatment PANDAS? We are desperate. My son's life could be at stake. (He has gone out second floor windows and run into traffic during rages.) Thank you in advance for any advice you can offer.

 

~Needcoffee

[dcmom]

Needcoffee- You are an awesome person, and a wonderful mom. You have been through it all.

 

I am going to be direct- since your son has a pattern of behavoirs clearly associated with strep, you can be somewhat confident in your pandas diagnosis. I agree with SF mom, it is very important to rule out co infections (especially lyme).

 

 

There are only a handful of doctors that will help you with pandas. If it is at all financially possible, I would get both of your children to either Dr K (chicago) or Dr L (maryland) as fast as you can. I, and many on this forum, have wasted money seeing other docs regarding pandas. Your son (and possibly daughter- I thing almost half of us have multiple kids affected) needs to be on daily antibiotics, very long term. He needs to be considered for a steroid burst, and he most likely will need IVIG or plasma pheresis.

 

Prior to seeing one of these doctors- you should have the pandas research test (blood test) done by Dr Madeleine Cunningham.

 

Pandas is exhausting (and I can't imagine having this on top of everything else)- but the good news is, with a lot of work and (unfortunately) money, it is treatable. I don't know anything about FASD- but I wouldn't be shocked if some things you attributed to that, could be pandas. Pandas is an insidious, crippling disorder that affects absolutely every part of a child's personality, behavoir, etc.

[sf_mom]

With you daughter having multiple pneumonia's (potentially mycoplasma/co-infection to Lyme) and a horrible reaction to steroids.... I would investigate the possibility for Lyme in your daughter as well. Having a negative response to steroids is extremely common with Lyme. It suppresses the immune system allowing the bacteria to take off creating a worse response. Again, very possible the birth mother gave it to them while pregnant.

 

-Wendy

[kimballot]

Thanks for the reply, Colleen. I should have been more clear in saying that the dose was 2 tablets of 250mg each so it was actually 500mg 2x a day. I hadn't heard anything about ibuprofen before so thank you for that information! We haven't tried steroids yet and I am a little leery of doing so because his sister (also adopted into our family, same birth mom but different birth dads) has had steroid psychosis when we've used them for her multiple pneumonias. (I am not a doctor, just a worn out mom so I'll check into this.) Thanks again for the wisdom!

~Needcoffee

 

When was your daughter's pneumonia? Was it mycoplasma? Mcyoplasma in kids with PANDAS often results in acute exacerbations. Please check out LYME and mycoplasma and try to see a PANDAS doc.

Edited July 28, 2010 by kimballot

[needcoffee]

Thank you all so very much for this information. I am making notes and I emailed Dr. K. He replied almost immediately and referred us to the University of MN because of my son's co-morbid FASD.

 

FASD is very complex (see this chart for a look at the overlap between FASD and autism, ODD, RAD, sensory processing, ADHD, Bi-Polar, etc... http://come-over.to/FAS/PDF/OverlappingCharacteristics.pdf). Alcohol is among the most devastating of teratogens as far as brain development is concerned and my two adopted children were exposed to regular binge episodes during their prenatal development. There is also a significant history of mental illness, as well as early life trauma and attachment disruptions. My daughter was exposed to prescription drug abuse and to cocaine and marijuana along with the alcohol. We suspect this with our son as well but we only have confirmation of alcohol and marijuana with him. (Alcohol is actually more damaging than cocaine and marijuana - see Institute of Medicine 1996 report to congress.)

 

I am not sure if my daughter's pneumonias have been mycoplasma but I will look into that. I will also ask about a test for Lyme disease. I never would have considered that possibility, so thank you!

 

I have had to be a strong advocate over the years for my children and I can see that it will continue to be the case. I feel somewhat encouraged by the information and support I have found here, but also discouraged in the fact that my son has TWO conditions that few medical professionals understand. You would be amazed at how much we have had to educate those who have worked with us over the years on the FASD (doctors are massively under-educated and unaware of this spectrum of disorders) and now we add PANDAS to the mix. I had a good old fashioned meltdown this morning but I'm done crying for now and ready to find help for my son. He is a great kid and well worth the effort.

 

Thanks again for the information and support.

~Needcoffee

[thereishope]

Welcome. I should start by saying I am not familiar with FASD nor the psychotropic meds that are give to children to help regulate the effects. Would you mind sharing what psychotropic meds he is on? If your doctor is wishing to change them, increase, or add any new ones to the mix in an attempt to regulate the PANDAS symptoms do so with caution. Some PANDAS kids do react negatively to them. Since he was okay on them previously that's one thing, but to change them now with something added to the mix (PANDAS), just be careful. If you add/change meds, do it slowly.

 

You mentioned hesitation with steroids, but can he take Ibuprofen? Some kids get some relief with that.

Edited July 28, 2010 by Vickie

[needcoffee]

Welcome. I should start by saying I am not familiar with FASD nor the psychotropic meds that are give to children to help regulate the effects. Would you mind sharing what psychotropic meds he is on? If your doctor is wishing to change them, increase, or add any new ones to the mix in an attempt to regulate the PANDAS symptoms do so with caution. Some PANDAS kids do react negatively to them. Since he was okay on them previously that's one thing, but to change them now with something added to the mix (PANDAS), just be careful. If you add/change meds, do it slowly.

 

You mentioned hesitation with steroids, but can he take Ibuprofen? Some kids get some relief with that.

 

He is on Risperdal for mood regulation, clonidine for sleep issues, and Lamictal for aggression. This combination has worked well to manage some of the symptoms of his FASD. The psychiatrist increased his prescribed dose of Risperdal yesterday. My concern in all of this is that we need to address what is causing the problem, not just cover the symptoms with psychiatric medications. There is very little we can do about the FASD but the PANDAS seems to be another story if we could just find someone to treat him.

 

The psychiatrist suggested cognitive therapy yesterday and I broke down in tears (probably confirming the recommendation in her mind). We've been down the "let's talk about what's going on at home" road before with the FASD so at least it's a familiar one. Sigh. I learned everything I could about FASD in order to advocate for my son and now I'll just have to do the same with PANDAS. Thank you all for your help in this.

 

I did give him Ibuprofen based on what I read here. He tolerates it but it's hard to tell if there is a benefit yet.

 

Again, thank you all.

~Needcoffee

[mkur]

QUOTE:

"He is on Risperdal for mood regulation, clonidine for sleep issues, and Lamictal for aggression."

 

I think you meant to say: Lamictal for mood regulation. I know Lamictal and Depakote are used as mood stabilizer. Some people have unstable mood - they cannot take some meds like zoloft, adderdal or ritalin because they make them manic. Risperdal is used for impulse control, tics and aggression. It also helps with mental tics, compulsions and what I call a sticky brain - lack of flexibility (ocd?). Risperdal helps with dopamine and seratonin. My son was on it for impulse control and tics. It really helps my son with quirky behavior (picking and chewing on things)which may be tics or lack of impulse control.

 

The side effect of Risperdal is weight gain. This was never an issue for my son (he is always the exception). In fact, we took him off Risperdal to try Abilify. The doctor said that Abilify was better at regulating dopamine than Risperdal. It did not work for my son - big mistake. He also lost weight fast and we work hard to fatten this kid up and keep him healthy.

 

I can really feel for you and hope you find some help. DS got sick when he was 7 and we found out about PANDAS when he was 8. The only treatment 12 years ago was meds and meds. When DS first became sick, I had him tested for allergies (brother with severe wheat allergy) but the doctors at TCH told me he had minor mold and tree pollen allergies. His nose had started running and he was spitting(tic). They explained to me that allergies don't cause behavior problems and that sometimes children just change (for the worst - like a teenager). We have done the neuro and pys route and he is not getting better or growing out of it. Everytime he gets sicks, things get bad so now we are trying Dr B - a PANDAS immulogist and he takes insurance - so tired of paying out-of-pocket. I have my fingers crossed and have not given up hope. All I can say is keep trying.

Edited July 29, 2010 by mkur

[thereishope]

Some kids do well with CBT. With my son, it didn't work since he wasn't cooperative and didn't even realize his OCD was an issue. To him, it was "just him". He was 5. We did our own form of ERP and that worked well for him. Interview any therapists ahead of time to see if they will be a good fit for your son. I ruled out a lot based on the inital phone interview I gave them.

 

 

Welcome. I should start by saying I am not familiar with FASD nor the psychotropic meds that are give to children to help regulate the effects. Would you mind sharing what psychotropic meds he is on? If your doctor is wishing to change them, increase, or add any new ones to the mix in an attempt to regulate the PANDAS symptoms do so with caution. Some PANDAS kids do react negatively to them. Since he was okay on them previously that's one thing, but to change them now with something added to the mix (PANDAS), just be careful. If you add/change meds, do it slowly.

 

You mentioned hesitation with steroids, but can he take Ibuprofen? Some kids get some relief with that.

 

He is on Risperdal for mood regulation, clonidine for sleep issues, and Lamictal for aggression. This combination has worked well to manage some of the symptoms of his FASD. The psychiatrist increased his prescribed dose of Risperdal yesterday. My concern in all of this is that we need to address what is causing the problem, not just cover the symptoms with psychiatric medications. There is very little we can do about the FASD but the PANDAS seems to be another story if we could just find someone to treat him.

 

The psychiatrist suggested cognitive therapy yesterday and I broke down in tears (probably confirming the recommendation in her mind). We've been down the "let's talk about what's going on at home" road before with the FASD so at least it's a familiar one. Sigh. I learned everything I could about FASD in order to advocate for my son and now I'll just have to do the same with PANDAS. Thank you all for your help in this.

 

I did give him Ibuprofen based on what I read here. He tolerates it but it's hard to tell if there is a benefit yet.

 

Again, thank you all.

~Needcoffee

[tpotter]

first, I want to give you huge kudos for being so incredibly understanding. My boys have rage attacks, and they are horribly scary, but we never had to follow through on calling the police. Please check, like everyone else has suggested on mycoplasma pneumonia and lyme. Also, the abx that many children are using are Augmentin XR 1000 mg BID and zithromycin 500 mg. That being said, maybe your dr. would be willing to speak with Dr. Latimer, Dr. Bouboulis and/or Dr. K for more direction (just remember they all have slightly different directions they take with everything, but they all really, really know what they are doing.

 

Additionally, is it possible that some or all of the psych meds may be causing increased aggression? Read the attached article. I know this is what happened in older son with risperadol and concerta/adderal, and he no longer takes any psych meds. On the other hand, my younger son takes Lamictal (for seizures,) and it does calm him down overall, but when he goes into a PANDAS rage, it does nothing for it.

 

http://www.primarypsychiatry.com/aspx/articledetail.aspx?articleid=561

 

 

Good luck. I really hope you get to the bottom of this...for his sake as well as yours.