Should have known better - so painful!

[beeskneesmommy]

WHAT I WROTE JUNE 18TH:

 

We love our children. We would do anything for them. I make bargains all of the time with the powers that be. No rhyme or reason, Brooks just started hitting the skids again and the Cefdinir that was so successful (low levels or absence of PANDAS symptomology for almost 2 months) seemed to have stopped working. We were seeing OCD, vocal/facial tics, adventitious upper body movements, excessive irritability, extreme separation anxiety, regression, hyperactivity, etc. He just went down hill fast starting in May - we had not seen these symptoms quite so extreme since his acute episode last Fall. Last Sun., he was a mess and I was frantic. I started a loading dose of Azith on top of the Cefdinir that evening. By the next morning, hyperactivity was almost gone and this is always the first to go. over the next 2 days he looked better, but was a little up and down in OCD symptoms and some others. By Wed. he was completely normal, healthy and all PANDAS symptoms were gone. The run of Azith ended Thurs. Still looking great and when I give him direction, he says "OK Mommy". That's it. No arguments, screaming, etc. Just "OK Mommy", and he smiles. Sadly, I have a hard time remembering what my healthy child looks like after a tough run like we have had....but I will take it. Now, to make it stick. I send all of my thoughts and prayers to you and your children.

 

AND NOW:

 

My son was doing so well - he was completely normal with total absence of PANDAS symptoms from 6/15 through 7/1. He awakened on 7/2 and I could see that he was less solid. He started to get hyperactive throughout the day. By 7/2 he was starting to have vocal tics and involuntary movement, as well as some regression and that familiar "spaced out" ot "out there" behavior. he has wavered but held his own until tonight. Starting this resurgence a week ago, he also started a cold with a stuffy and sometimes snotty, sneezy nose, but no other symptoms. I assumed that it was a resurgence of allergies. Whatever it is, has tamed a little but not left him, and seems to be causing all of this. He has been very active with Little Gym Camp and school all week, rarely stopping for the day except for lunch. I thought it was good for him and he seemed so happy. I picked him up from camp this afternoon and he was OK, tired. He fell asleep for 20 mins around 5PM and I woke him up because I didn't want him to go to bed too early, thus missing his meds. Within a 1/2 hour he was thru the roof, hyper, tics, chorea form, inability to concentrate or even hold a conversation as his listening skills were nil. I had to lay my leg over his little ones to get him to be still enough to finally sleep. he was clearly exhausted but couldn't be still enough to fall asleep. I couldn't help crying as I held him in my arms after he went to sleep. I am so bitterly disappointed! He had been improving so much since the start of this year with months of health and normalcy from Jan - April. I had hoped that the downhill stuff in May/June was a bump in the road.

 

It is so clear that the Azith simply knocks it out and does the trick, but it doesn't last! I am thinking that we should just cut to the chase and go for IVig as soon as he turns 5 in the Fall. I am afraid, however, that he doesn't present as sick enough for a doc to give it to him. I have entertained the thought of taking him off of his daily Cefdinir when the time comes and presenting him to a doc 1 week later, so he CAN be seen as baseline. This kid really responds to meds but it never sticks.

 

Sorry for venting. Any suggestions?

 

SO sad; another of many broken hearts for me...

[Lynn777]

I'm not a PANDAS expert, but I understand the broken heart. I almost cried reading this, I am so sorry for the setback & for your pain. I think one of the hardest parts of all this is the getting better & then getting worse - it's such an emotional roller coaster...

 

None of our kids or us should have to go through this. I hope & pray tomorrow is a better day for you & your son.

 

Your in my thoughts & prayers.

 

~Lynn

[beeskneesmommy]

Thank you so much! When he had his acute episode last Sept., just after his 4th b'day, I maintained and I still maintain, that he will fully recover. He has classic Strep PANDAS that went untreated for a long time, but no codiagnosis and is a healthy normal child in between flare-ups. I will never give up but it is hard not to waver and lose hope during these times. I also call it the emotional roller coaster and it is very hard not to get my hopes up (I do it every time) despite my knowledge that it may not stick. Your kind words have bolstered me into action again and I will look forward to seeing him in the morning a little more refreshed and solid. Positive thoughts to you and yours!

[ziva]

I remember reading your original post and feeling so happy for you . Such a great feeling to see our little ones happy and enjoying life like they should!

 

I agree with Lynn....NONE of our kids should have to go through this

 

Sending you lots of happy thoughs and prayers for a better day tomorrow.

Hugs~

[LNN]

I'm so sorry he's having to battle this again. I know IVIG is a huge decision, especially for little ones. Before you go there, I'd only ask you to closely look at anything - anything - that might have changed since last year. You say he's been stuffy and you thought it might be allergies. Have you had any issues in the house with humidity, water leaks, anything that could have kicked up mold or allergens (changing a carpet, remodeling?). Have he had a nasal swab to check for infection? Have you checked blood work recently for strep titers, immune complexes (specifically C3d, C3a and C4a)? I think you son's behaviors show there's still something at work but how you treat it should be guided by knowing what's happening in the body. It may be worth getting a look under the hood before mapping out next steps.

 

In the meantime, you may want to do some reading on cognitive behavior therapy and ERP techniques for young kids. Or search on old posts on the topic. CBT is an amazing tool for coping with meltdowns. It's a life saver in my family. (you might also want to keep some liquid motrin in your purse - it's a big help for my kids)

 

Wishing you better days ahead.

[mom md]

First of all, I am so sorry your family is going through this but please know your son will be better. I think the fact that he I improved on the azith and then relapsed just helps support the thought that this is autoimmune. We had a very similar story although my son had it for much longer before we connected the dots. We did plasmaphoresis with a phenomenal response and then relapsed 4 months later when his immune system was challenged. He then had IVIg and he was brought back to normal. He relapsed 8 months later and had another IVIg. Each relapse has been less acute and each treatment he has responded quicker.he was diagnosed in January of 2009 and he is now thriving. He may relapse again but I now no longer fear it like I did because his response to IVIg has been so dramatic.

Azith is a immune modulator which is why they improve on it, but IVIg is a sledgehammer to the immune system. I would consider steroids also if you want to see if he will respond to the IVIg. We did steroids for a period until we could arrange the IVIg. It was a bandaid but kept us able to function until we could move forward with the IVIg. The waxing and waning on azith just supports the diagnosis. Please do jot see it as a failure.

[beeskneesmommy]

Thank you for all of your suggestions. We are going to see Dr. B in CT on the 25th of this month and I will bring all of this up with him. I hear he is amazing and we are really hopeful that we will start moving forward again. My son's current doc will not consider ongoing Azith, but is willing to judiciously allow for the 5 day run occasionally. He continues to be on Cefdinir. I was very suspicious that he had Strep at the start of May (fever, sore throat) but we were out of town at the time and he was not tested until 8 days after the onset (he was mostly better by that time). Test was neg. Titers in late May were way down from the usual over the previous year, which was always quite high. Myco showed up but was "old" and apparently of no concern (he had pneumonia last october). Lyme was neg. No new stuff in the house and he has always battled this stuffy "allergy" nose. It comes and goes with no rhyme or reason, but recently has been pretty bad. Actually, ever since that sore throat and fever in May he has had trouble. None of us have been tested for Strep/Myco, although I mentioned it to his current PANDAS specialist, she did not seem to feel that it was necessary. He has not had a nose swab, just throat. I do not know what C3d, C3a and C4a are, but will bring it up with Dr. B. I am concerned about steroids because he is only 4 and I was told that they can axacerbate tics and cause psychotic symptoms sometimes in little ones? As for buffered Vit C, does it come in a kids form? He cannot swallow pills yet. Also, he cannot take Benedryl as well as several other OTC meds because they seem to cause PANDAS symptoms to worsen. He only take abx, Ibuprfen (which I am careful about because his PANDAS doc says she is worried about liver damage if used a lot in conjunction with abx), and a cold remedies from Whole Foods. Sorry about the hodge podge of answers - just trying to address it all!

 

Thank you - you have helped me to start my engines again (stalled out last night for a bit and rev up for further battle!

 

Bless you all and your beautiful children!