need help, advice, insight

[colleenrn]

I can barely type this b/c I am so upset.

 

My 14 yo old daughter has been on zithromax for over two years. During a big flareup last month, we added Augmentin XR 1000mg/twice a day and did a month long steroid burst. That got her from an 8 down to a 4 (scale of 1-10 with 10 the worst). Now she is a TEN.

 

I don't know where to go from here. She takes zithromax 250mg/day, Augmentin xr 2000 mg/day, ibuprofen 2-3 times/day, zyflamend and tumeric, Omega 3's, probiotics.

 

Every night for the past 2 1/2 years I have had to stay with her until she falls asleep. Last night was the worst ever. We layed down at 9:45 and she was not asleep until 12:45 and that was with 25mg of benadryl and 5 mg of melatonin. Within those 3 hours she had multiple panic attacks. He heart would race and she would feel really scared and shaky, even though I was next to her and holding her hand. During the day she is a very independent young lady, does great in school, just made lacrosse team, lots of friends, for which I am so thankful. It broke my heart to see her that way and knowing she is on 2 antibiotics and can't do steroids again for a while.

 

I am looking for any advice, insight, anything.

TIA.

Colleen

[dcmom]

Colleen-

 

you have been at this a long time, so I will leave out any thoughts on searching for underlying infection....which IMHO is sometimes (not all the time) a factor.

 

For my kids, once the autoimmunity gets rolling- it can take a lot to stop. In some cases the month long steroid rx has done it, other times it did not. I have seen it look like it's doing nothing- but when it's done symptoms get even worse, like you describe.

 

I suggest giving it a few days, dosing with advil- and maybe it will resolve. If things do not resolve, or start getting worse, I would consider high dose IV steroids. ( done for kids with asthma). I think this should be considered as a serious intervention- yet a step prior to ivig or pex. I have spoken with 3 neurologists about this- and they all agree.

 

You and your daughter will be in my thoughts.

 

Eileen

[peglem]

Benedril does that to my daughter. I'm finding as she heals her reaction to medication is changing and I'm often at a loss what to do.

[NancyD]

Colleen,

 

Have you ruled out Lyme disease and other co-infections via IGeneX? If not, I recommend your doing that. And if you have ruled out Lyme and other co-infections, have you considered IVIg? Also, have you eliminated all dyes and additives from your daughter's diet? That can really help.

 

Since clearing most of my DD15's PANDAS symptoms the anxiety and intrusive thoughts have gotten much worse. IVIg helped with EVERYTHING BUT that. Then I discovered she had Lyme disease (and high IgG for MyoP). We are only 5 months into LD treatment and we are now considering doing provocation for bartonella. For us, the anxiety and intrusive thoughts are the most difficult to treat. We have tried everything, but now I feel we are on the right path. Time will tell how long before we can reduce these last two symptoms.

 

I hope you find your answers soon!

 

Nancy

 

I can barely type this b/c I am so upset.

 

My 14 yo old daughter has been on zithromax for over two years. During a big flareup last month, we added Augmentin XR 1000mg/twice a day and did a month long steroid burst. That got her from an 8 down to a 4 (scale of 1-10 with 10 the worst). Now she is a TEN.

 

I don't know where to go from here. She takes zithromax 250mg/day, Augmentin xr 2000 mg/day, ibuprofen 2-3 times/day, zyflamend and tumeric, Omega 3's, probiotics.

 

Every night for the past 2 1/2 years I have had to stay with her until she falls asleep. Last night was the worst ever. We layed down at 9:45 and she was not asleep until 12:45 and that was with 25mg of benadryl and 5 mg of melatonin. Within those 3 hours she had multiple panic attacks. He heart would race and she would feel really scared and shaky, even though I was next to her and holding her hand. During the day she is a very independent young lady, does great in school, just made lacrosse team, lots of friends, for which I am so thankful. It broke my heart to see her that way and knowing she is on 2 antibiotics and can't do steroids again for a while.

 

I am looking for any advice, insight, anything.

TIA.

Colleen

[Kayanne]

I can barely type this b/c I am so upset.

 

My 14 yo old daughter has been on zithromax for over two years. During a big flareup last month, we added Augmentin XR 1000mg/twice a day and did a month long steroid burst. That got her from an 8 down to a 4 (scale of 1-10 with 10 the worst). Now she is a TEN.

 

I don't know where to go from here. She takes zithromax 250mg/day, Augmentin xr 2000 mg/day, ibuprofen 2-3 times/day, zyflamend and tumeric, Omega 3's, probiotics.

 

Every night for the past 2 1/2 years I have had to stay with her until she falls asleep. Last night was the worst ever. We layed down at 9:45 and she was not asleep until 12:45 and that was with 25mg of benadryl and 5 mg of melatonin. Within those 3 hours she had multiple panic attacks. He heart would race and she would feel really scared and shaky, even though I was next to her and holding her hand. During the day she is a very independent young lady, does great in school, just made lacrosse team, lots of friends, for which I am so thankful. It broke my heart to see her that way and knowing she is on 2 antibiotics and can't do steroids again for a while.

 

I am looking for any advice, insight, anything.

TIA.

Colleen

 

I know this sounds really obvious, but does she take a good multi-vitamin and mineral supplement? Also, what about b vitamins? I read in a book that some antibioitcs can deplete b vitamins...they are so essential to keeping things on track, and in converting amino acids to neurotransmitters--particularrly B6 in the form of P-5-P. Most vitimins only have it in the form of Pyridoxine HCI.

 

http://ods.od.nih.gov/factsheets/vitaminb6/

 

My husband gets panic attacks, and he has said that he read that read somewhere that too many Omega 3's can cause a manic feeling...

 

I'm also going to pm you.

Edited March 3, 2011 by Kayanne

[T_Mom]

I am so sorry Colleen--We have been in the midst of a similar over-the-top exacerbation with our youngest daughter since late summer.

 

We too did the steroid burst, but symptoms got worse. It has been raging OCD, very bad--now seeking more as far as treatment.After a year of great relief (with Augmentin XR 2000) our d's exacerbation has been truly horrible.

 

I don't have any words of wisdom but wanted to let you know you are not alone--Hold steady, do the "next thing" -- You have been a rock for so many of us on here, I know she WILL get through this.

[Kayanne]

I can barely type this b/c I am so upset.

 

My 14 yo old daughter has been on zithromax for over two years. During a big flareup last month, we added Augmentin XR 1000mg/twice a day and did a month long steroid burst. That got her from an 8 down to a 4 (scale of 1-10 with 10 the worst). Now she is a TEN.

 

I don't know where to go from here. She takes zithromax 250mg/day, Augmentin xr 2000 mg/day, ibuprofen 2-3 times/day, zyflamend and tumeric, Omega 3's, probiotics.

 

Every night for the past 2 1/2 years I have had to stay with her until she falls asleep. Last night was the worst ever. We layed down at 9:45 and she was not asleep until 12:45 and that was with 25mg of benadryl and 5 mg of melatonin. Within those 3 hours she had multiple panic attacks. He heart would race and she would feel really scared and shaky, even though I was next to her and holding her hand. During the day she is a very independent young lady, does great in school, just made lacrosse team, lots of friends, for which I am so thankful. It broke my heart to see her that way and knowing she is on 2 antibiotics and can't do steroids again for a while.

 

I am looking for any advice, insight, anything.

TIA.

Colleen

 

I know this sounds really obvious, but does she take a good multi-vitamin and mineral supplement? Also, what about b vitamins? I read in a book that some antibioitcs can deplete b vitamins...they are so essential to keeping things on track, and in converting amino acids to neurotransmitters--particularrly B6 in the form of P-5-P. Most vitimins only have it in the form of Pyridoxine HCI.

 

http://ods.od.nih.gov/factsheets/vitaminb6/

 

My husband gets panic attacks, and he has said that he read that read somewhere that too many Omega 3's can cause a manic feeling...

 

I'm also going to pm you.

I tried to pm you, it wouldn't go through.

[EAMom]

I can barely type this b/c I am so upset.

 

My 14 yo old daughter has been on zithromax for over two years. During a big flareup last month, we added Augmentin XR 1000mg/twice a day and did a month long steroid burst. That got her from an 8 down to a 4 (scale of 1-10 with 10 the worst). Now she is a TEN.

 

I don't know where to go from here. She takes zithromax 250mg/day, Augmentin xr 2000 mg/day, ibuprofen 2-3 times/day, zyflamend and tumeric, Omega 3's, probiotics.

 

Every night for the past 2 1/2 years I have had to stay with her until she falls asleep. Last night was the worst ever. We layed down at 9:45 and she was not asleep until 12:45 and that was with 25mg of benadryl and 5 mg of melatonin. Within those 3 hours she had multiple panic attacks. He heart would race and she would feel really scared and shaky, even though I was next to her and holding her hand. During the day she is a very independent young lady, does great in school, just made lacrosse team, lots of friends, for which I am so thankful. It broke my heart to see her that way and knowing she is on 2 antibiotics and can't do steroids again for a while.

 

I am looking for any advice, insight, anything.

TIA.

Colleen

 

I would encourage you to try HD IVIG. While not a cure, it really helped us get "back on track" when we'd already maxed out on antibiotics/ tried steroids (very temporary improvement). (PEX would be good too...but I know that is less available.)

 

I think it makes sense to check for Lyme too, esp. being on the East Coast.

 

I wonder if puberty (at least for a while) makes things worse too...hormones going crazy. I remeber some posts about certain types of birth control pills helping/others hurting. So, that is something (birth control pills) I would consider for my dd in a few years if things aren't going well.

 

Are all your kids already on antibiotics? Maybe there is a carrier in the household?

 

Hugs!!

Edited March 3, 2011 by EAMom

[thereishope]

I'm sorry you're going through this. All I can think of asking is what probiotics is she on? Those are strong antibiotics taken together and I can see it taking a toll on her gut. I also agree with EAMom in making sure no one else is sick in the house. I hope things get better soon.

[colleenrn]

Thank you for all your replies. Last night was a little better. I had stopped giving her the multi-vitamin and B complex for about a week (b/c she takes so many meds/supplements) it was so hard to get everything in her, so I added that back in yesterday.

 

We have not ruled out any TBI, only did the western blot through quest labs (worst one apparently) when we did a bunch of lab work thro Dr T last summer. I read on the Lyme board daily and we do live on the east coast and we have had multiple embedded ticks and our neighbor has Lytmes and his dog just died from what they think are complications of Lyme... So looks like maybe I should be posting on the Lyme board as well as the PANDAS. I know TBI are prevalent. I am just so incredibly worn down and worn out with 4 kids and 10 years of this... I honestly do not know where or how to begin the Igenex, nor how to convince my husband b/c of the $$$. We have had thousands of dollars on medical expenses just in the past year.

 

I also know I should pursue IVIG for her. Not sure where to start there either.

 

Colleen

[butterflymom]

=

Edited February 3, 2016 by butterflymom

[colleenrn]

If the basic western blot Igenex test comes back negative, does that say for sure that the child does not have Lyme? Can I order the test myself or does a dr have to order it?

Colleen

[LNN]

I am just so incredibly worn down and worn out with 4 kids and 10 years of this... I honestly do not know where or how to begin the Igenex, nor how to convince my husband b/c of the $$$. We have had thousands of dollars on medical expenses just in the past year.

 

I also know I should pursue IVIG for her. Not sure where to start there either.

 

Colleen

Wow, seems we've been on this road together for years. You were one of the moms who helped me find this forum. Your comments today just really resonated with me. Last fall, I came as close to the brink of a genuine nervous breakdown as I ever hope to come. People were seriously telling me to get help. After the post-IVIG summer from h**l, after finally begrudgingly doing the treatment I always wanted to avoid, DS didn't follow the script and didn't get well. I was totally defeated. Out of desperation, we did an Igenex test, even tho his standard western blot had been completely negative. It came back indeterminate on the bands that the standard western blot doesn't test for (31, 34) plus a few others. I lost it. Locked myself in the bathroom and cried like a blithering idiot. My husband had never seen me in such bad shape. He kept saying "tell me what to do to help" and all I wanted to scream was "I'm freaking tired of being the one who has to figure this all out and tell you what to do!! You do it for awhile. I quit!"

 

So I wallowed for a few days. Then we made an appt with an LLMD and started down the rabbit hole into the bizarre world of lyme/bartonella. Happily, it got better from there on out. It hasn't been all sunshine. DS is currently regressing a bit, but he's still in a far better place than he had been. So my advice is to let yourself lose it. You deserve a good cry and to let your guard down. It is exhausting and anyone who pretends otherwise is delusional. You cannot be strong all the time. When my mom died last fall, the best gift my dad gave me was allowing me to hug him while he cried. The man is 87 and I've seen him cry twice in my life. But I will cherish that gift for the rest of my life. So know that it's ok to let your family see you cry, to know that you suffer and need to be supported sometimes. They may consider it a gift.

 

Then, after a good wallow in the mud, go to the Igenex website and order a test kit. The doctor who's helping you with abx will likely be willing to sign the requisition. Also know that Igenex gives a 15% discount if you test more than one family member at the same time. And some insurance carriers will reimburse a decent portion of the expense (Igenex will send you the info you need to submit along with your claim form - they just won't submit for you - you have to deal directly with your carrier). Since some lyme articles say that elevated immune complexes can give you a false negative, you might want to ask your doctor to also order a C3a, C4a and/or C3d immune complex test. Very often, if you have blood tests done by a commercial lab (e.g. Quest or Labcorp), they'll do the Igenex test for you at the same time, without any additional phlebotomy charge. (and elevated C3a and C4a are implicated in lyme)

 

You'll get varying opinions on which tests to order. We went with the basic panel mostly due to money. Since we knew we'd end up with an LLMD if there were any positive or ind. bands, we knew the LLMD might use different labs for co-infections, and in fact, ours uses one that accepts insurance. So our Igenex was more of a way to see if it was even worth looking into. But there are reasons to do other Igenex tests and you may want to post on the lyme board for input. (oh, and don't drive yourself crazy wondering if they have Pandas, lyme, both, which came first...very possible it was a layering thing that just slowly built up - focus on peeling the onion, not chasing your tail trying to figure out how it all happened)

 

Try not to let the expense and fear of four kids having lyme overwhelm you. Like you, we've spent about $$$$$ out of pocket for the past few years (pex, IVIG, abx, travel to distant specialists). Oh - and the augmentin XR + zith combo didn't make a bit of difference for DS (tho it may help some). But a different abx combo treatment has helped me get my kid back. It's been like having him trapped in an avalanche. He's still under the snow, but while pex and augmentin gave him a breathing hole, the lyme protocol has helped us find a hand and uncover his face. Still lots of digging ahead, but no longer the fear that we won't get him back.

 

Two months ago, after lots of digging and expensive tests, like an endoscope, kid #2 was also red-flagged. CamK 178, high anti-lyso, and ind. lyme. But no strep. So she's joined DS on the lyme path and they take their zillion pills together. It makes it hard to answer when acquaintences ask how the kids are doing - you don't dare give an honest answer. But to hear her laugh again - can't put a price tag on that.

 

So hang on. You deserve a good melt-down. But you will find the energy to move forward. Just believe in yourself.

Laura

Edited March 4, 2011 by LLM

[Wilma Jenks]

Thank you for all your replies. Last night was a little better. I had stopped giving her the multi-vitamin and B complex for about a week (b/c she takes so many meds/supplements) it was so hard to get everything in her, so I added that back in yesterday.

 

We have not ruled out any TBI, only did the western blot through quest labs (worst one apparently) when we did a bunch of lab work thro Dr T last summer. I read on the Lyme board daily and we do live on the east coast and we have had multiple embedded ticks and our neighbor has Lytmes and his dog just died from what they think are complications of Lyme... So looks like maybe I should be posting on the Lyme board as well as the PANDAS. I know TBI are prevalent. I am just so incredibly worn down and worn out with 4 kids and 10 years of this... I honestly do not know where or how to begin the Igenex, nor how to convince my husband b/c of the $$$. We have had thousands of dollars on medical expenses just in the past year.

 

I also know I should pursue IVIG for her. Not sure where to start there either.

 

Colleen

[amyjoy]

I'm so sorry its so bad.

When DS gets bad, we always use the Avipaxin by NeuroScience (anti- proinflammatory cytokines) and the Coptis Purge Heat by Health Concerns, it helps so much. good luck with it, hope you get some sleep.