Extreme exacerbation

[forjpj]

I'm so sorry!! We've had that horrible day where you end up at the hospital!! Can officially say probably the worst day of my life!! My heart just goes out to you!! Have you tried Benadryl? Sometimes I think that would help my son. At the time I didn't know about all these other possible solutions, and my son would refuse to take motrin...said it gave him a headache.

I will keep praying for you!!

Sarah

[Mary M]

I emailed Dr K just now thanks to all of your support to do so. I know he is out of the country in Croatia so I honestly didn't want to bother him but I appreciate that several of you here on the forum recommended contacting him. I believe my ped would do anything Dr K suggests. Our ped is so supportive of this diagnosis and was so appalled by our treatment in the ER at the world reknowned Children's Hospital of MI. During our 15 hour stay our daughter wasn't even offered food. I had to go to the cafeteria and buy her something to eat. Later, when they figured out I bought her food in the cafe they said she would get a menu to order food. That only happened when after 10 hours we requested a menu. Thankfully that was 45 minutes before the food service closed.

 

I'm pretty sure it was Nancy who had a horrible ER hospital experience. How many of us are trying so hard to help our chidlren and then have to suffer at the hands of the medical community? The food thing was just the tip of the iceburg for us.

[forjpj]

Our ER experience was horrible also!! And when you are so desperate for help it is all the more worse. We went there by ambulance around 7-8 pm after a day much like you described. When we called I was holding him and he couldn't even breathe without being obsessive. I couldn't get him to eat, benadryl wasn't helping, constant screaming, etc. He calmed down for the ambulance so when we got there we were placed in the waiting room. The longer we waited in the waiting room the more agitated he became. We were all so tired and all my 55 lb 10yr old wanted me to do was hold him upright, sitting, balanced on my hips so he could stay "even" in his mind. Anytime my husband would say something he would yell at him. I finally warned the front desk that he was getting more and more agitated. After a couple attempts at asking they finally put us in an unused room, but not for treatment. So the agitation continued to grow, my son kept yelling at my husband. He started begging me to go home saying he would eat now. It was almost 10 pm so I figured at this point I could feed him, give him some Benadryl and he might get relaxed enough to sleep. I sent my husband out to ask how much longer they thought it would be and guess what he heard? The nurses at the nearby nurses station seemed to be having a good chuckle over my son's behavior. He came back in and told me, but he couldn't give me specifics. I went out there asked nicely at the nurse's station how much longer, not because I'm upset about the wait, but because I think I can soothe him at home now. Couldn't tell me anything, and then I lost it. Started crying, stated they seem to think this was funny, and that this was all caused by strep, and we had a horrible day. So there I stood, crying, in my pjs from the last night, and they all stared at me, one looking like she might cry herself, with all the jaws on the floor. Obviously they had been caught...not one person said sorry, you misunderstood...so I know my husband heard right. I walked back into the room, said we were going, wrote the entire pandas name down on a piece of paper, picked up by 10 yr old just like you would a baby (he couldn't walk at the time), and handed that piece of paper to the nurses who were still standing at the station because they were too stupid to have scattered!! I told them to go look it up and I hope it doesn't affect anyone in their family. After that, I sent out 6 letters to the big wigs at our magnet of nursing excellence hospital...mostly to inform them about pandas. I explained the night and introduced them to pandas with the pandas info cards I had just gotten. It was well worth it, I think....because I got 2 apologies, one from the medical director of the hospital who also thanked me for informing him about something he had never heard of, and they promised to educate the staff. I used this as example to my son as making lemonade out of lemons. Boy that was a horrible night!! Sorry to late out such a long story, but it helps everyone once in awhile to get it out of my system!! We shouldn't have to go through this and it seems like we all have!!

Sarah

[EAMom]

Obviously they had been caught...not one person said sorry, you misunderstood...so I know my husband heard right. I walked back into the room, said we were going, wrote the entire pandas name down on a piece of paper, picked up by 10 yr old just like you would a baby (he couldn't walk at the time), and handed that piece of paper to the nurses who were still standing at the station because they were too stupid to have scattered!! I told them to go look it up and I hope it doesn't affect anyone in their family. After that, I sent out 6 letters to the big wigs at our magnet of nursing excellence hospital...mostly to inform them about pandas. I explained the night and introduced them to pandas with the pandas info cards I had just gotten. It was well worth it, I think....because I got 2 apologies, one from the medical director of the hospital who also thanked me for informing him about something he had never heard of, and they promised to educate the staff. I used this as example to my son as making lemonade out of lemons. Boy that was a horrible night!! Sorry to late out such a long story, but it helps everyone once in awhile to get it out of my system!! We shouldn't have to go through this and it seems like we all have!!

Sarah

 

good for you!

[kimballot]

Our ER experience was horrible also!! And when you are so desperate for help it is all the more worse. We went there by ambulance around 7-8 pm after a day much like you described. When we called I was holding him and he couldn't even breathe without being obsessive. I couldn't get him to eat, benadryl wasn't helping, constant screaming, etc. He calmed down for the ambulance so when we got there we were placed in the waiting room. The longer we waited in the waiting room the more agitated he became. We were all so tired and all my 55 lb 10yr old wanted me to do was hold him upright, sitting, balanced on my hips so he could stay "even" in his mind. Anytime my husband would say something he would yell at him. I finally warned the front desk that he was getting more and more agitated. After a couple attempts at asking they finally put us in an unused room, but not for treatment. So the agitation continued to grow, my son kept yelling at my husband. He started begging me to go home saying he would eat now. It was almost 10 pm so I figured at this point I could feed him, give him some Benadryl and he might get relaxed enough to sleep. I sent my husband out to ask how much longer they thought it would be and guess what he heard? The nurses at the nearby nurses station seemed to be having a good chuckle over my son's behavior. He came back in and told me, but he couldn't give me specifics. I went out there asked nicely at the nurse's station how much longer, not because I'm upset about the wait, but because I think I can soothe him at home now. Couldn't tell me anything, and then I lost it. Started crying, stated they seem to think this was funny, and that this was all caused by strep, and we had a horrible day. So there I stood, crying, in my pjs from the last night, and they all stared at me, one looking like she might cry herself, with all the jaws on the floor. Obviously they had been caught...not one person said sorry, you misunderstood...so I know my husband heard right. I walked back into the room, said we were going, wrote the entire pandas name down on a piece of paper, picked up by 10 yr old just like you would a baby (he couldn't walk at the time), and handed that piece of paper to the nurses who were still standing at the station because they were too stupid to have scattered!! I told them to go look it up and I hope it doesn't affect anyone in their family. After that, I sent out 6 letters to the big wigs at our magnet of nursing excellence hospital...mostly to inform them about pandas. I explained the night and introduced them to pandas with the pandas info cards I had just gotten. It was well worth it, I think....because I got 2 apologies, one from the medical director of the hospital who also thanked me for informing him about something he had never heard of, and they promised to educate the staff. I used this as example to my son as making lemonade out of lemons. Boy that was a horrible night!! Sorry to late out such a long story, but it helps everyone once in awhile to get it out of my system!! We shouldn't have to go through this and it seems like we all have!!

Sarah

 

All I can say is WOW and THANK YOU. I hope your son is doing better now. We have so much work ahead of us.

[bgbarnes]

Our ER experience was horrible also!! And when you are so desperate for help it is all the more worse. We went there by ambulance around 7-8 pm after a day much like you described. When we called I was holding him and he couldn't even breathe without being obsessive. I couldn't get him to eat, benadryl wasn't helping, constant screaming, etc. He calmed down for the ambulance so when we got there we were placed in the waiting room. The longer we waited in the waiting room the more agitated he became. We were all so tired and all my 55 lb 10yr old wanted me to do was hold him upright, sitting, balanced on my hips so he could stay "even" in his mind. Anytime my husband would say something he would yell at him. I finally warned the front desk that he was getting more and more agitated. After a couple attempts at asking they finally put us in an unused room, but not for treatment. So the agitation continued to grow, my son kept yelling at my husband. He started begging me to go home saying he would eat now. It was almost 10 pm so I figured at this point I could feed him, give him some Benadryl and he might get relaxed enough to sleep. I sent my husband out to ask how much longer they thought it would be and guess what he heard? The nurses at the nearby nurses station seemed to be having a good chuckle over my son's behavior. He came back in and told me, but he couldn't give me specifics. I went out there asked nicely at the nurse's station how much longer, not because I'm upset about the wait, but because I think I can soothe him at home now. Couldn't tell me anything, and then I lost it. Started crying, stated they seem to think this was funny, and that this was all caused by strep, and we had a horrible day. So there I stood, crying, in my pjs from the last night, and they all stared at me, one looking like she might cry herself, with all the jaws on the floor. Obviously they had been caught...not one person said sorry, you misunderstood...so I know my husband heard right. I walked back into the room, said we were going, wrote the entire pandas name down on a piece of paper, picked up by 10 yr old just like you would a baby (he couldn't walk at the time), and handed that piece of paper to the nurses who were still standing at the station because they were too stupid to have scattered!! I told them to go look it up and I hope it doesn't affect anyone in their family. After that, I sent out 6 letters to the big wigs at our magnet of nursing excellence hospital...mostly to inform them about pandas. I explained the night and introduced them to pandas with the pandas info cards I had just gotten. It was well worth it, I think....because I got 2 apologies, one from the medical director of the hospital who also thanked me for informing him about something he had never heard of, and they promised to educate the staff. I used this as example to my son as making lemonade out of lemons. Boy that was a horrible night!! Sorry to late out such a long story, but it helps everyone once in awhile to get it out of my system!! We shouldn't have to go through this and it seems like we all have!!

Sarah

Wow! I am so sorry you and your son had to go through that- I started crying reading your story! Bravo for educating everyone! You are awesome!

Brandy

[parents4eyes]

x

Edited July 17, 2010 by parents4eyes

[NancyD]

Mary,

 

I just read your post about your DD's recent exacerbation and your ER experience. My heart goes out to you and I am sending you lots of strength and courage to weather your way through this ordeal. As you know, we recently experienced a two-week nightmare at the hospital...including two days/nights in the ER psyche lockup where they had little experience with children and showed no kindness or compassion. And once she was transferred to Children's Hospital there was nothing they did that I couldn't have done at home. Although we did experience some compassionate doctors and nurses at the second hospital we certainly could have done without some of the stupid comments and "all-too-knowing" looks from the other nurses and doctors. Clearly, educating ER and other healthcare professionals is a priority! Kudos to you, Sarah, for doing what you did! If it's not a clear-cut medical or psychiatric condition very few healthcare professionals know what to do.

 

While the rages were really bad for many years I find that puberty makes them so much worse. Our recent experience has forced me to be better prepared and have a plan in place when the next exacerbation hits because I don't EVER EVER want to find ourselves back at the ER!

 

For starters, I have found that no amount of behavior modification, ERP, or CBT works in the heat of a rage. The best I can do is to isolate myself (since her anger is usually directed at me and she's too big for me to try and contain) and not engage with her at all. That is the only way she will de-escalate. Next, I discovered there are 24/7 psychiatric crisis teams in MA that will come to your home in this type of crisis and help you deal with the situation and try to avoid going to the ER. You may want to check and see if there is anything similar in your state.

 

Now that we have tried a steroid burst and had success with it I will keep a script on hold at the local pharmacy at all times. My daughter is already on 1000 mg Augmentin xr bid so we are set with antibiotics (I have found the increased dosage makes a big difference) and for now she will remain on Diflucan as long as her liver function is within normal range. I am also keeping Risperdal on hand at all times in case she goes into another severe exacerbation -- I know I can give her 1 mg as needed to calm her down and that seems to be the only psychiatric med that helps her...at least in the short-term. Understandably so since she has extremely high dopamine levels.

 

I know you are planning to do IVIG and I hope you have great success with it! We had one whole year with very few symptoms -- just some anxiety and OCD. I think we may be back on track because of the recent high-dose IVIG in mid March. I find it takes my daughter exactly 2 1/2 months for the high-dose infusions to kick in. The other things I find helpful are probiotics, omega 3, NAC, quercetin, transfer factor, and eliminating all dyes and additives from her diet. She takes other supplements but these are the ones that I notice make a big difference. Whenever she eats anything with red or blue dye in it she gets very dysregulated. I even have it written into her IEP that she is not allowed to eat anything at school with dyes or additives, but at age 14 she will find a way if she wants. And if she ingests it right before getting her period, watch out...there is no living with her! If you haven't already you may want to consider having your daughter's hormone levels checked.

 

These are just a few things that work for us. Keep us posted, Mary, and let us know how you and your daughter are doing.

 

Nancy

[T_Mom]

Mary--

I do hope things are better now--We suffered through a long severe exacerbation (carrying our child, who was no longer speaking, eyes shut, holding painful positions, etc, etc...I know the ER seems like they should be able to help--we never went though, as she was seeing doctors day after day--and they could not help in the days either...) Steroids finally helped + antibiotics, thanks to a doctor with sense.

 

Augmentin XR 1000 mg twice a day made a huge difference --and seemed to have a much better effect than the "regular" Augmentin.

 

The level of Clavulanic Acid (sp?) is different with the Extended Release (XR) Augmentin. see:

http://www.medicinenet.com/amoxicillin_and...cid/article.htm

 

Thanks to Beth Maloney's book we learned about Augmentin XR use long term, high dose as a possible option. Dr Nicolaides too (who treated Sammy)--as Nicolaides was willing to treat off-label and has ended up helping many as a ripple effect.

 

I hope and pray that things are much better soon--Hopefully with the scheduled IVIG--all the best to you.

Edited June 6, 2010 by T.Mom

[forjpj]

Thanks everyone! And Mary I hope your day is going better, and I hope Dr. K can help you and get you in earlier. And thanks for all the suggestions Nancy! I'm going to look into those!!

[Mary M]

Have you tried valerian root? It has a calming effect similar to valium. It may at least take the edge off. It does help to calm my daughters rages. I'm sorry to hear things are so rough...and so sad to hear that your daughter is so desperate for help.

 

She took a valerian root pill tonight. She didn't like the smell/taste but I told her she must take it for a wile to see if there is an effect.

[peglem]

Have you tried valerian root? It has a calming effect similar to valium. It may at least take the edge off. It does help to calm my daughters rages. I'm sorry to hear things are so rough...and so sad to hear that your daughter is so desperate for help.

 

She took a valerian root pill tonight. She didn't like the smell/taste but I told her she must take it for a wile to see if there is an effect.

If you don't have much of an effect with one capsule, try 2. My 100 lb daughter does well with 2 450mg capsules. If it works for her, I'll bet she'll take them voluntarily. The relief from symptoms can be pretty dramatic.

Edited June 7, 2010 by peglem

[Mary M]

Hi Mary,

I assume things have calmed down by now. What did you do that helped? I want to be prepared in case this happens to us. Previously, when it happened we didn't have a diagnosis yet... that was a nightmare. Also, don't be afraid to call your doctor when things get this bad. We were given our doctor's cell phone number just for these types of things. Though, I wonder if anyone would answer in the middle of the night.

May

 

Calmed down? Well, some better moments, still challenges but our flu bug has disappeared and so I am hopeful that we'll continue to see improvement. Dd is taking ibuprofen, her antibiotic and we started valerian root tonight. She also now knows that Dr K has responded and has her scheduled for IVIg so perhaps that will help too.

 

Our ped is awesome...and I truly mean that. We did not call her before we went to the ER Friday night. We did call her before we went Sat morning...and dd was in such exacerbation that the ped heard it all through the phone. She called us twice while in the ER..of course, there was no cell service where we were so we didn't know she called. At the 14.5 hour mark (11:30 PM) I called her for advice. I left my # with the nite answering service and our ped called within minutes. She believesin PANDAS and is trying so hard to help us. She advised us to be sure that we were d/c formally, not AMA as the staff of the hospital was suggesting repeatedly. Our ped called again this morning just to check on us...and is now in email contact with Dr K who is working hard for us even though he is not in the country. How amazing is that man!!! She just sent me an email...we are in good hands with her but she doesn't know how to do what Dr K does. Thank goodness for both of them and all of you one this forum.

[Mary M]

Also, we found...purely by chance, that 1-2 T of peanut butter (a small handful of peanuts works, too), stops my son from raging within minutes!

 

I bought her peanuts a week or so ago when I read an earlier post in which you recommended peanuts and peanut butter. She likes peanuts so it shoul be a good fit. She was eating them when I bought them originally but wouldn't eat any today. But I'm going to have peanuts everywhere...in bowls on tables, in the car...I am willing to try anything. Thanks for the suggestion!

[Mary M]

Have you tried valerian root? It has a calming effect similar to valium. It may at least take the edge off. It does help to calm my daughters rages. I'm sorry to hear things are so rough...and so sad to hear that your daughter is so desperate for help.

 

She took a valerian root pill tonight. She didn't like the smell/taste but I told her she must take it for a wile to see if there is an effect.

If you don't have much of an effect with one capsule, try 2. My 100 lb daughter does well with 2 450mg capsules. If it works for her, I'll bet she'll take them voluntarily. The relief from symptoms can be pretty dramatic.

 

Thank you, I was wondering about the dosing. We'll jump to 2 if needed. I hope she gets some relief soon. She did have some balanced times today so we are grateful for those moments.