The Higher Dose Of Augmentin is Working!

[momtocole1]

I am so happy to write a positive post instead of my usual panic posts. We started my son Ryan on what I and many of you are calling the Saving Sammy dose of 1000 mg. of Augmentin twice per day. He had an overnight improvement in his symptoms. He went from the fastest most intense backslide I have ever seen to going to school yesterday. I don't want to be unrealistic, we still have a road ahead, but what it did was to calm down his whole system, his whole body. On Wednesday (at old dose of 600 mg. 2 times per day) he had started to panic over his food too. He was refusing to eat because it was too exhausting for him to do all of his retracing of putting the food back and forth from the plate to his mouth. I was trying to get him to eat ANYTHING just so that I could get the Augmentin into him. He stuffed an entire blueberry waffle in his mouth so that he did not have to take bites. He became unwilling and incapable of doing the smallest tasks because it would set off an explosion of retracing and retouching compulsions.

 

He went to school yesterday and for the very first time since he started there in September he did not retrace back to the car. He got out of the car and walked in the door. The afternoon before, this was only 1 day after higher dose he went on a hike with his sister and a behaviorist that helps us. He has not been able to easily go outside since the beginning of summer. They walked about a 1/2 mile from the house and were picking oranges and he ate one. I know this seems so minor, but it was huge. I was in tears. About two weeks ago Ryan and I were driving home and he said Mom do you remember when I went on that long walk outside at the beginning of summer with Joseph(behaviorist). I said yes and he said, I will never be able to do that again without retracing. I told him that we are going to get help for him. We are going to figure this out and you will go on walks again without retracing. He did retrace a little bit, but not very much at all.

 

He is on his way, I have to believe that. He still looks very pale, does not have much of an appetite and is very hyperfocused on the computer right now but he is not raging, he is not crying very often. He is working his way back. I have seen him smile and laugh!

 

We are seeing immunologist on November 4th and are in line for a phone consult with Dr K.

 

I will keep every one posted, I was almost afraid to write this but I felt I have to post good news when I have it to give us all hope. This is a devastating illness for our children and our families. We are close to total exhaustion after this most recent episode. It is like we all have post traumatic stress disorder, but we are fighting our way back.

 

For the first time I feel like there is hope. His blood is at Dr. Cunningham's lab.

 

I know I have said this before, I am so grateful for this forum and all of you parents that continue to post, good or bad. I turned away from this forum for awhile because I was scared, discouraged, in denial, you name it. When I turned back to it and continued to tell me story and search for help it came flooding toward me.

 

I'll keep you all posted.

Thanks, Judy...

[KeithandElizabeth]

Judy:

 

What fantastic news!!!!! I am so happy for your son and your whole family.

 

Keep us posted!!!

 

Elizabeth

[faith]

Judy

So the doc that gave you the Augment agreed to up the dose? did you have to twist his arm, just curious?, lol.........will he let you stay on it indefinitely? so glad to hear that news.

 

 

Faith

[Megs_Mom]

Hi - what an amazing story. I am so happy for your son. When you told about how he told you that he'd never take a walk again, I cried. I remember how our house was robbed of natural joy and how we feared that we had lost our child. The first time she laughed again, I finally started to cry and could not stop. It was like I had forgotten that she could be happy again, and seeing a small glimpse of it was almost too much. My prayer was that I would never lose sight of who she really is and never lose faith in our belief that she could be healed. We have been so fortunate to find help, at least for now. My heart breaks for all of the children that are misdiagnosed, sometimes for years.

[momtocole1]

Dear Meg's Mom,

Thank you for the kind note. My son is one of those kids that has been misdiagnosed for years. His first strep infection was April 13, 2003. I believe he has had PANDAS for 6 1/2 years and no doctors would believe me until now. He has had every diagnosis under the son.

 

I am so happy for you that your daughter is doing better. I know what you mean about the fear that you have lost your child. For our son it has happened in such an up and down cycle that over time we just have gotten used to a "new normal" for him. I read or heard something somewhere in one of my books about positive visualization to make copies of all the pictures that I can find of my son smiling and happy and put them all around and focus on them.

 

I was only able to find two pictures! I am going to copy those so that if I start to lose faith again I can look at them and know that more smiles are ahead.

 

I am going to look for your prior posts so I can read about your Meg!

 

Have a great day and thanks again for your words of encouragement.

 

Judy...

 

 

Hi - what an amazing story. I am so happy for your son. When you told about how he told you that he'd never take a walk again, I cried. I remember how our house was robbed of natural joy and how we feared that we had lost our child. The first time she laughed again, I finally started to cry and could not stop. It was like I had forgotten that she could be happy again, and seeing a small glimpse of it was almost too much. My prayer was that I would never lose sight of who she really is and never lose faith in our belief that she could be healed. We have been so fortunate to find help, at least for now. My heart breaks for all of the children that are misdiagnosed, sometimes for years.

[momtocole1]

Judy

So the doc that gave you the Augment agreed to up the dose? did you have to twist his arm, just curious?, lol.........will he let you stay on it indefinitely? so glad to hear that news.

 

 

Faith

 

Hi Faith, I got the doc to up the dose for about a week because I told him that we are going to do a consult with a PANDAS specialist (Dr. K) in Chicago. Nothing indefinite yet! I am hoping Dr. K will call this pediatrician for me and give him what's what on the protocol! Luckily I did not have to twist his arm...

Thanks for the note, I'll keep you posted.

 

Judy...

[T_Mom]

Judy-- Your post brought tears to my eyes -- All the very best to you there--

YYYEEEEYYYY!!!!!!!! May it all continue--

[Megs_Mom]

I am so hopeful that this will be your answer. I found that journaling (and then blogging) was my answer to keeping Meg's picture clear in front of us. I would reread frequently to try to remember what she could do & who she could be. We also would take pictures of the good times & the bad, so that we could always look and visually she her. We would also use those with her to show her why we were working so hard with so many doctors. Now we are photographing her like mad! Until we joined this forum, our perspective was that we had lived through the worst. Now we know that we were lucky in many ways - but that does not diminish the horror of her experience.

 

But frankly, 6 years is a long time. I am so sorry, but so hopeful for you. I really hope that the next generation of children will not have experiences like your son & so many others on this forum.

 

Dear Meg's Mom,

Thank you for the kind note. My son is one of those kids that has been misdiagnosed for years. His first strep infection was April 13, 2003. I believe he has had PANDAS for 6 1/2 years and no doctors would believe me until now. He has had every diagnosis under the son.

 

I am so happy for you that your daughter is doing better. I know what you mean about the fear that you have lost your child. For our son it has happened in such an up and down cycle that over time we just have gotten used to a "new normal" for him. I read or heard something somewhere in one of my books about positive visualization to make copies of all the pictures that I can find of my son smiling and happy and put them all around and focus on them.

 

I was only able to find two pictures! I am going to copy those so that if I start to lose faith again I can look at them and know that more smiles are ahead.

 

I am going to look for your prior posts so I can read about your Meg!

 

Have a great day and thanks again for your words of encouragement.

 

Judy...

[Worried_Dad]

YA-HOO! THAT ROCKS!!!

 

I pray that Ryan's progress continues, Judy. And I can totally relate to being afraid to post successful news because that might "jinx things." Been feeling that paranoia myself!

 

FYI, my son's progress continues. He's been on the Saving Sammy dose of augmentin for about 3 weeks now, and every day he sheds some more OCD behaviors. He's much calmer, much happier. Very encouraging!

 

On the poignancy / break-a-parent's-heart side: the other day he told me he can't really remember what life was like before he got sick. He said it pretty matter-of-fact - no anxiety, no obvious sadness - but it sure put a lump in my throat. I told him now that he's getting better, those old memories will return... and we'll make more of them.

 

Man, I hope I'm not making false promises. But the recent success stories give me so much hope!!!

[momtocole1]

Dear Worried Dad,

 

Thank you for responding to my post. That is so wonderful about your son. With all the reading that I have done and questions I have asked there is still so much I don't understand about PANDAS. It feels like a miracle that a higher dose of this medicine could have such profound effects on our children so quickly. It's like this strep is "super bug" that just has to be destroyed. What your son told you makes me sad too but just the fact that he is thinking like that is a huge step too. What I mean is, when my son has been in the middle of an exacerbation of these OCD thoughts and rituals his brain doesn't even have the capability to think in these terms. It was only when I started to give him the Augmentin (even at the smaller dose) that he started to think of things more in the abstract.

 

Before he was on the Augmentin he was so "all consumed" with the OCD that he would not talk in that way. Does what I'm saying make sense? I hope I'm explaining it right.

 

Do you feel comfortable posting about what OCD behaviors your son has started to shed? It gives me so much hope to hear about it.

 

For my son, one of his biggest fears is seeing anything with an X on it. He thinks that means that whatever bad thought is in his head at that time will actually happen if he sees an X. We have 3 kitchen chairs with a fabric on them that has X's on them. The other two have different fabric. He sat on one the other day that had the X pattern on it. I could not believe it. Also, I posted about this a while back... he ate a Quaker granola bar. He has always loved those and he did not eat them for months because he finally told me that he couldn't because they were made by Quaker and that would mean an earth quake would happen if he ate one. He just went in the cabinet and got one and came over to me and showed me with a big smile on his face.

 

I already wrote about him walking into school without retracing and the long walk he took outside which are the biggest milestones so far. I have to document all of this so that I won't forget.

 

Find pictures of your son when he was happy and smiling and enjoying life and place them all around where you both can see them. I know that probably sounds strange, but I really believe that can help, along with many, many prayers, and Augmentin and IVIG and...

 

There is something so amazing for me when I look at those pictures of my son smiling, it helps me remember when he felt that joy and to give me the strength to keep going and fight for his healing and recovery.

 

So we both posted good news about our son's. Yahoo!

 

My prayers are with your family as he makes his way back to you!

 

 

 

 

 

 

 

 

 

 

YA-HOO! THAT ROCKS!!!

 

I pray that Ryan's progress continues, Judy. And I can totally relate to being afraid to post successful news because that might "jinx things." Been feeling that paranoia myself!

 

FYI, my son's progress continues. He's been on the Saving Sammy dose of augmentin for about 3 weeks now, and every day he sheds some more OCD behaviors. He's much calmer, much happier. Very encouraging!

 

On the poignancy / break-a-parent's-heart side: the other day he told me he can't really remember what life was like before he got sick. He said it pretty matter-of-fact - no anxiety, no obvious sadness - but it sure put a lump in my throat. I told him now that he's getting better, those old memories will return... and we'll make more of them.

 

Man, I hope I'm not making false promises. But the recent success stories give me so much hope!!!

[T_Mom]

Hi All--

I want to add again a smile and thankful sigh -- what wonderful news to hear!!!

 

I want to add that a steroid burst (see webpediatrics.com or a neuro. doc.) really helped our daughter when she "plateaued" on antibiotics.

 

When our daughter "recovered" with full strength long-term antibiotics (amoxicillan in our case, at the time) after about 3 months she did come to a point of plateau in her recovery where she essentially "rested" at about 90% herself. She was SO much better than she had been that after 3 months of improvement (we could see improvement week to week) that it was tempting to "leave" her at 90%.

 

(Her earlier exacerbation symptoms included severe OCD circling things, OCD step-stepping, arranging things, not speaking compulsively--10 days over last Christmas, and general non-functioning, mild facial tics infrequently.)

 

ANYWAY-- after 3 months of antibiotics, when she plateaued at about 90% herself-- Then we tried a steroid burst and she came back 110%. NO OCD, no tics, calls from the teacher that she was seeing a "different child" than she had seen all year--

 

She continues on full strength amox. and though we saw whispers of 2 to 4 compulsion incidents a day during the summer from time to time, right now...after 10 months of full strength antibiotics and a steroid burst along the way, she now thankfully reports NO OCD, seemingly doing very well.

All the best--

[smartyjones]

she did come to a point of plateau in her recovery where she essentially "rested" at about 90% herself. She was SO much better than she had been that after 3 months of improvement (we could see improvement week to week) that it was tempting to "leave" her at 90%.

Wow - T mom - so interesting! She got to 90% by abx, correct? How long did you see her at that plateau? Do you think it was a reduction in brain inflammation from the steroids that saw the futher improvement? Do you think she would have gotten there eventually but steriods sped it up? - maybe that's too hard to know?

 

I say I believe my son is about 90%. We're doing a different protocol than most - a homeopathic system that is similar in concept to abx but a different substance than tradional abx. He is 10 days into the final ramp up. I was thinking over the weekend he may be making improvements - last year, 3:00 to go get my older son from school was horrendous to get out the door - who knows what the daily trigger might be; friday, it was raining and he wanted to bring a book, he asked for an umbrella, we were a little late and I didn't want to deal with an umbrella to run the 2 secs to the car. I said I didn't know where it was and we didn't have time. He made a thoughtful face and tucked the book under his coat and walked out the door. I stood there for a minute thinking, 'did he just calmly solve a problem all by himself? And at this time that had been so difficult?'. But then sometimes second guess myself or he has a step backwards after a step forwards. Like later that same night, he had a usual tantrum started by delaying going to the potty before bed.

 

If you're comfortable, can you talk a little more about your thoughts on that final 10% and your decision to try something new vs wait for more improvements?

 

Thanks!

Kathy

[KeithandElizabeth]

Hi Kathy:

 

Can you tell us a little bit about what you are doing with homeopathy? After we finish our one year of antibiotics, I am considering trying some different preventative approaches instead of antibiotics until puberty. I have the more natural healers on my one side telling me about the long term damage these antibiotics will do and then I have this forum with experiences of relapse without antibiotics. I am so conflicted!! So, I would just love to hear about what you are doing instead of antibiotics.

 

Elizabeth

[T_Mom]

Wow - T mom - so interesting! She got to 90% by abx, correct? How long did you see her at that plateau? Do you think it was a reduction in brain inflammation from the steroids that saw the futher improvement? Do you think she would have gotten there eventually but steriods sped it up? - maybe that's too hard to know?

 

Thanks!

Kathy

 

 

hi Kathy-- Yes, we believe the antibiotics brought her to 90% herself--absolutely.

 

She plateaued about a month or so. After 3 months of full strength antibiotics we tried a steroid burst to see if it would bring her to 100%.

 

This was the second time we had tried steroids. Both times they have had a sudden and obvious effect on her. (Just like Dr K had told us they would if it was Pandas--He told us that the first time and he was so right.)

We did the steroids when she plateaued on antibiotics because the first time we had used them she reacted very well. We decided it was worth the try. Glad we did.

[Megs_Mom]

Hi All--

I want to add again a smile and thankful sigh -- what wonderful news to hear!!!

 

I want to add that a steroid burst (see webpediatrics.com or a neuro. doc.) really helped our daughter when she "plateaued" on antibiotics.

 

When our daughter "recovered" with full strength long-term antibiotics (amoxicillan in our case, at the time) after about 3 months she did come to a point of plateau in her recovery where she essentially "rested" at about 90% herself. She was SO much better than she had been that after 3 months of improvement (we could see improvement week to week) that it was tempting to "leave" her at 90%.

 

(Her earlier exacerbation symptoms included severe OCD circling things, OCD step-stepping, arranging things, not speaking compulsively--10 days over last Christmas, and general non-functioning, mild facial tics infrequently.)

 

ANYWAY-- after 3 months of antibiotics, when she plateaued at about 90% herself-- Then we tried a steroid burst and she came back 110%. NO OCD, no tics, calls from the teacher that she was seeing a "different child" than she had seen all year--

 

She continues on full strength amox. and though we saw whispers of 2 to 4 compulsion incidents a day during the summer from time to time, right now...after 10 months of full strength antibiotics and a steroid burst along the way, she now thankfully reports NO OCD, seemingly doing very well.

All the best--

 

I am so interested in this post - thanks so much for writing it. We have that same challenge for Meg - she is at 95-98% - but on a bad day, still has 4-5 compulsions - on a good day, maybe only 1. She is so good, that we are not ready to think about IVIG or PEX - we are completely open to doing this (likely IVIG for OCD) in the future, but where she is now, this seems too much. But I am very open to increasing anti-biotics or prednisone in the meantime. I meet with our Neuro this week (before he moves to Nebraska ) and Dr Latimer next week - and will discuss options with both of them. Meg also did extremely well on the Prednisone during the 5 day test. Thanks again!