12 mos later

[GatsMom]

This month marks one year for this hideous exacerbation. Abx, TCM, homeopathy, DAN!, methylation support, TrueHope...everything short of pex, T&A and ivig. All of them gave some small order improvement but with a quick plateau. His gut is 100 times better but still no school, anxiety and panic attacks ranging from 1 per day to 1 every few days. His quality of life is slowly improving and I can't say honestly that anything but time has really helped.

 

In the end, it will be the separation anxiety that kills me. I've looked repeatedly online for resources for sep anx in a teen and how to survive it as the parent they are on top of. I've been parenting for 23 years, so dedicated to these kids so having the feelings I have is foreign and so uncomfortable...and I'm ill-prepared for how to dig myself out of it. Does anyone else have this going on?...a burning desire to just get in the car and drive before there's nothing left of you? ugh. It's such a horrible disease. Any of you parents of the older kids, please feel free to offer some guidance to a mom that's going down fast.

 

Thanks a bunch.

[Ozimum]

Does anyone else have this going on?...a burning desire to just get in the car and drive before there's nothing left of you? ugh. It's such a horrible disease. Any of you parents of the older kids, please feel free to offer some guidance to a mom that's going down fast.

 

Hi Gat's Mom,

 

YES! And, I feel your pain... We all need a mum to take care of us too, don't we! So here's some mum advice from me: Concentrate on you for a bit, so you can be as strong as you need to be. PTSD is REAL!

 

I'm sorry, I don't have any suggestions to offer on separation anxiety. But I can share this - I have a 16 yo son with OCD and anxiety which go through the roof with exposure to strep. The last one was BAD, and I went with him - I was having panic attacks, the lot! I so wanted out. I've recently found a supportive doctor, also a homeopath, (also has DAN training) - he rescued me when I went to see him about being a local support for my son, and he recognised that I was hardly functioning, close to a blithering mess as I look back on it now... (He also ordered some blood work, and I was really shocked to discover my Vit D levels were crashingly low! Due to Stress? PTSD?) (Better now.) Is there someone who can do the same for you?

 

Please, get youself as well as you can be, so you can stay strong. And do something for you: exercise, meditation, yoga, gardening, just sitting still to breathe, whatever works.

 

You are an amazing mum! (We all are for hanging in there!)

 

BIG cyber hugs coming your way - all the way from Australia...

Ozimum

Edited November 10, 2010 by Ozimum

[Megs_Mom]

Hi - the only thing that helped us survive seperation anxiety (younger child) was ERP therapy - it helped us get through until we found the right medical help.

 

I guess I would ask what abx & what dose your son has tried, whether the entire family has been tested for strep titers, and if he has been tested for active mycoplasma infection or Lyme.

 

We did not do IVIG either, but I am not opposed to it at all - we just got lucky with abx. Is this an option? With panic in your home, it can be so hard to make decisions, but I'd encourage you to find ERP therapy and at the same time, to continue to explore medical treatments - you may just not have found the right one for his underlying viral or bacterial challenge.

 

Hoping this turns around for both of you soon -

[tired mom]

I am right here with you feeling your pain. Do a search about an e-mail " Life on a Train". It is one of the most beautiful e-mails I have ever received. Anyway, last year during my then 17 year old daughters exacerbation I told my sister I feel like it is time for me to get off the train. Somehow we get the strength to keep going and searching and someday we will look back and realize how strong we were..not weak..

[philamom]

Gats Mom- My daughter is only 9, but we have been dealing with off and on symptoms since age 2. Her latest exaceberation is now going on almost two years. Last July, I found out she had Lyme. On Sept 20th, she started a lyme protocol of antibiotics (2 abx and a weekend cyst buster) and by Halloween she was the best I've seen in some time. Last week, we did another ivig (4th over 18 months) and we lost all the gains we made with the new lyme protocol (i'll post more later).

You may want to consider running the Igenex Western Blot or just go see an LLMD. They will start you on the lyme protocol (based on symptoms) and run lots of labs to help figure out the underlying cause (whether it be strep,lyme,mycoplasma...). I was shocked to see the best improvement(happened in 6 weeks) we had from the combo. Hopefully, it comes back after the herxing of the IVIG.

[smartyjones]

gat's mom -- my son is younger than yours so i don't really have such good advice. unfortunately, i've been very disappointed in the psychological/psychiatric help we have gotten -- really NOT gotten.

i have found much help from the website anxietybc.com. they have some plans etc for separation anxiety.

i do believe if there is an infectious cause, the real help is going to come with proper treatment, however, there are some good suggestions and plans to help cope while working on getting that healing.

good luck.

[nicklemama]

I'm right there w/ you. The severe separation anxiety was my son's worst presenting sign. Last fall, it was beyond awful. Its still lurking around. Went to my neighborhood Ladies Nite Out for dinner last night. Gave a hug and kiss. He followed to the garage, opened my car door, kissed again, went to the door and stood there to watch me leave and the most horrible look came across his face. Daddy tried to distract him. At bedtime, he became difficult, had a 5 min panic, but finally cooperated w/ his dad. He was asleep when I came home. At times, I, too, feel like getting in the car and driving away and never looking back.

 

 

My son is 6, 5 when this all started. At this point, we are lucky that its not as severe. When I left last fall, he had a total meltdown and I would have to come home immediately so he could/would calm down. I had to lie to him to get him to go to school. He needed to know I was not leaving the school building, so I told him I would go to the library or office and help out and I would check on him occasionally but he would not see, since it was against school rules. That allowed him to go to school.

 

 

Cindy

Edited November 10, 2010 by nicklemama

[Phasmid]

I know that feeling, and the guilt feelings that go with it. I was under care of psychiatrist for all that was going on and I will say that medication helped immensely. I was on an ssri, couple different trials, and anti anxiety meds at night so I could sleep. Some may not like the use of meds but when you are truly READY to get in the car and drive off, this is an acceptable option. My psych also did therapy, so I had somewhere to go and cry, and someone who thought that crying over it was okay (unlike husband).

 

I HIGHLY RECOMMEND THIS IF YOU HAVEN'T ALREADY. You can only deal with this for so long before cracking.

 

Did you already look into Lyme testing?

 

 

[GatsMom]

I am right here with you feeling your pain. Do a search about an e-mail " Life on a Train". It is one of the most beautiful e-mails I have ever received. Anyway, last year during my then 17 year old daughters exacerbation I told my sister I feel like it is time for me to get off the train. Somehow we get the strength to keep going and searching and someday we will look back and realize how strong we were..not weak..

 

I'm searching for that email now but you really hit the nail on the head. For a few weeks I have an overwhelming feeling that it might be my time to get off the train. For the last five years and intensely during this last until very recently I somehow find the strength to go another day. I've always been so thankful for that tenacity but now it's nearly gone. Career and financial ruin, all nurture going out, nearly none coming back in, and a kid who's recovered enough to break away when he's motivated for short periods of time but not recovered enough to grant me my life. I work in the fringe of healthcare and I know all too well what this can add up to within any organism.

 

Thank you all so very much. All day everyday I watch people go on with lives, whining about day to day things and all I can think is that I'd give anything to have a life where a low checkbook balance was my biggest concern. Your responses help me to recognize that I'm not alone and I'm so grateful that you've all chimed in.

[GatsMom]

I know that feeling, and the guilt feelings that go with it. I was under care of psychiatrist for all that was going on and I will say that medication helped immensely. I was on an ssri, couple different trials, and anti anxiety meds at night so I could sleep. Some may not like the use of meds but when you are truly READY to get in the car and drive off, this is an acceptable option. My psych also did therapy, so I had somewhere to go and cry, and someone who thought that crying over it was okay (unlike husband).

 

I HIGHLY RECOMMEND THIS IF YOU HAVEN'T ALREADY. You can only deal with this for so long before cracking.

 

Did you already look into Lyme testing?

 

I keep coming back around to Lyme. We have not tested thru Igenex, only labcorp. My ds16 is positive for strep titers and mycoplasma p. (or at least he was in april). Thru winter and spring we did 7 weeks of Azith 500 right into 6 wks of the Sammy dose of Augmentin XR right into 10 days of Biaxin CR once the myco was discovered. His gut was a train wreck. he was so, so sick. Homeopathy and TCM helped stabilize him after the abx nightmare. For homeopathy we saw the great and powerful Michael Payne. He was difficult to talk to, relied too heavily on zyto BUT he did put Gat on a remedy called Psy Stabil that was quite effective. See the ingredient/condition list below. Just found out there's a homeopath in our town, a female who specializes in vaccinosis (and we can trace back to 2 major vacc injuries that were certainly fundamental straws on the camels back). http://ronniesremedies.com/psy-stabil.aspx

 

Regarding crying. I'm an expert. It is the one single act that has kept me standing. Things are just now improved enough that I can get back to the gym for short periods of time and it helps to close my eyes and spin. Thankfully I have a cousin with a PhD in psychology whose very helpful as there is zero money for me to obtain counseling.

 

Lyme wouldn't surprise me. When he's in remission he's a total outdoor kid and we live right outside the Great Smoky Mtn Nat'l Park. A time or two in his life I remember pulling a tick off him.

 

Thanks for the word on meds for me. I guess anything's better than me getting in the car and driving off. Just knowing someone else understands is so helpful and I'm very thankful for this board.

[philamom]

Gat's Mom-

My daughter has been dealing with GI issues for a long time. She's had c-diff three times and Giardia. She has had off/on cramping & green stools for a very long time. I was terrified (still am) of the multi abx because of her history of c-diff. Since starting the combo abx for the lyme, she hardly has any stomach complaints. She no longer has green stools either. I'm assuming her GI tract was being compromised from the lyme. She is on a high amount of probiotics, but I was giving them before the lyme diagnosis. So I must contribute the relief of GI symptoms to the right treatment of abx. Of course, I'm always in constant worry of the c-difficile returning!

I'm not trying to push the lyme--just wanted to share my experience.

Edited November 10, 2010 by philamom

[GatsMom]

Gat's Mom-

My daughter has been dealing with GI issues for a long time. She's had c-diff three times and Giardia. She has had off/on cramping & green stools for a very long time. I was terrified (still am) of the multi abx because of her history of c-diff. Since starting the combo abx for the lyme, she hardly has any stomach complaints. She no longer has green stools either. I'm assuming her GI tract was being compromised from the lyme. She is on a high amount of probiotics, but I was giving them before the lyme diagnosis. So I must contribute the relief of GI symptoms to the right treatment of abx. Of course, I'm always in constant worry of the c-difficile returning!

I'm not trying to push the lyme--just wanted to share my experience.

 

Appreciate you input! What abx are used for lyme? Do you work with a LLMD? Thanks very much!

[philamom]

My dd's LLMD is in CT. She is currently on Zith & Amox daily, and Tindamax on the weekened. Prior to last week's IVIG she had amazing results with the last 2 weekends of Tindamax (she herxed the first three weekends). No improvement this weekend though. Her LLMD has recently requested the addition of Minocin. But I am waiting a few weeks to start, to deal with the backslide of symptoms.

 

Editing to add--she also has positive co-infections. Bartonella through Specialty lab (negative with Igenex) and Rocky Mountain Spring Fever IGG thru Quest.

Edited November 10, 2010 by philamom

[kferricks]

My dd is only 10 but I so understand the wanting to get in your car and drive. She has always been close to us but this separation anxiety is the most stressfull! My child literally latches on to me and walks as I walk.... Yes, I am also now on Zolof which has helped some. She also does the exposure therapy.

 

The one thing that has helped with her is using pennies in a jar. The first week we tracked (by putting a penny in a jar) everytime she had to touch, grab a hand, high five, latch on to me or do a full body rub. We were high in the 100's every day. We are now down to 30. Which some days its livable and others I cringe every single time. It is so sad because I really do love her and do feel guilty feeling like that, because I know she is sick.

 

*I am now looking for the email

[matis_mom]

This month marks one year for this hideous exacerbation. Abx, TCM, homeopathy, DAN!, methylation support, TrueHope...everything short of pex, T&A and ivig. All of them gave some small order improvement but with a quick plateau. His gut is 100 times better but still no school, anxiety and panic attacks ranging from 1 per day to 1 every few days. His quality of life is slowly improving and I can't say honestly that anything but time has really helped.

 

In the end, it will be the separation anxiety that kills me. I've looked repeatedly online for resources for sep anx in a teen and how to survive it as the parent they are on top of. I've been parenting for 23 years, so dedicated to these kids so having the feelings I have is foreign and so uncomfortable...and I'm ill-prepared for how to dig myself out of it. Does anyone else have this going on?...a burning desire to just get in the car and drive before there's nothing left of you? ugh. It's such a horrible disease. Any of you parents of the older kids, please feel free to offer some guidance to a mom that's going down fast.

 

Thanks a bunch.

I know the feeling, like PANDAS is sucking the life out of you...

It seems you are giving all you've got in terms of treatment.

It is so draining, the mental stuff... They want you there, they want you to support them, their need is real, but you look at them and you know it doesn't make any sense. They know it doesn't make any sense, but they can't help it, and you can't help them, cause no matter what you say or do, it doesn't help. I HATE THAT. So frustrating...

My original PANDAS ds, now 13, is doing better now that we started Lyme treatment. My dd10 I'm pretty sure has PANDAS and/or Lyme, and we are seeing an LLMD on Friday. With her, the fears, the doubts, the tears, the depression, the constant need for reasurance is totally freaking me out. I don't want to do it. I keep shutting her off, I change the subject, I send her off to do something. I feel like I'm being a meany, but when I try to help her out, we just go around in circles, and I get very frustrated (maybe I'm a little PANDAS)

Well, I am not sure if this help you at all, other than misery loving company...

I see you've tried many things and I am not questioning your decisions, but a T&A might not be such a bad idea if progress is not significant. According to our doc, the tonsils can become an absess and then they just kind of block off the abxs and you don't get anywhere. She said they had patients on antibiotics for months and months without progress and once the tonsils were out, then the antibiotics started working.

 

Hope you feel better. You know you are not going anywhere. I do sometimes fantasize about a different life, but it's a waste of mental energy. It is what it is, and we have to make the best of it.

 

God bless,

 

Isabel