My son, too?

[tu4four]

My dd11 is over the top, as she has been for quite some time. We have been treating for Lyme for 6 months, and so many of you have given me great ideas about why we are possibly not making any progress. We are testing for pylourria, we did bloodwork to get titers that might point to Hashimoto's Encephilitis. We have a pediatric neurologist appointment at the end of this month. We have another LLMD appointment at the beginning of November (with ART) and an appointment with a new PANDAS immunologist a couple of days later.

 

In the meantime, my 8 year old son, who has had the same early symptoms as my daughter....won't wear underwear or socks, wears the same pants every day and has a meltdown if he has to wear something else, bedwetting, blah, blah, and he is CDC positive for Lyme.....he is over the top, also. He has had these low level issues, but this anger and raging is an overnight thing that goes on and on. He has been exhibiting even less tolerance for frustration. We homeschool, of course, couldn't possibly send DD11 to school at this point, and he's getting there, too. So you can imagine that I have to tell him to correct things at times. He cannot handle that today. Or most days lately. I'm talking loud, intense growling at me, slamming his hand on the table, 30 minute or longer tantrums.

 

The two exceptions we have had lately were last Friday when I was giving my dd11 some Advil to calm her, and I gave him two Advil when he had an episode soon after. This was at noon. Guess what. He had the first really good afternoon he had in some time. He was agreeable, he got his schoolwork done quickly--even with a late start that day, and we all enjoyed being around him. My dd17 noticed the obvious difference, and my husband definitely noticed when he got home from work.

 

On Saturday he was fantastic still. In fact, he was pretty agreeable and easy to get along with through Sunday morning. All from those 2 Advil. I had given him nothing else. On Sunday evening I gave him two advil, but nothing changed. A few days later, I found those two advil in the bathroom drawer--he had never taken them.

 

For the past two days, I have been giving him zinc and b6 and niacin and Lysine. And stool softeners. Yesterday was fabulous. He was sweet. Kind. DD11 had a huge episode in which she antagonized him quite a bit, and he was still cool, no irritation beyond what would be normal when your sister squirts soap all in the hair and down the face of my son's friend.

 

Last night, I gave him the zinc. This morning the rest. HUGE episode. Probably the hugest he's had. Absolutely no response to warnings about what will happen. Anger through the roof. Yelling, screaming, stomping, calling us the worst parents. Just like his sister.

 

I took my son to our pedi two days ago because he has been running a low grade fever on and off. Rapid strep was negative, and I was able to convince her to test his strep titers, test for mycoplasma, ebstein-barr, etc. She was reluctant, but she did it. Waiting for the results.

 

What do I do? I have been so focused on getting my girl well. We are scheduling appointments for my daughter and frankly praying for God's providence to help us cover it. I am a stay at home mom (and I don't know how I could do anything else at this point). Our pedi (a huge group that covers our large city with a large medical center), has flat out told me that the group doesn't believe in PANDAS. They certainly don't believe in Lyme. Or pylourria. So I am really not sure where to turn. I feel like I need a long script for Augmentin. But where would I go for that? Any other suggestions?

 

You guys are awesome help. I don't know what I do without you all.

 

 

 

 

[Dedee]

Well let me say how sorry I am that this is happening. I know that sick feeling when you suddenly realize that you are heading down that road to h*** with yet another child. Makes you want to throw up. I remember laying on the floor in my closet, in my bedroom and crying (so no one could hear me) when I finally accepted that my daughter (third child), also had PANS. I didn't know how I could possible go through this a third time. Yet here we are. So you will make it and you will do a great job because you are already armed with more information than you were when you started this journey with your daughter.

 

I think you should go ahead and get your son tested for infections and viruses. Something has started this processes and even though it isn't an obvious thing it's there hiding. Seek it out and attack it before it damages your son. This is the best advice I can give based on my experience. I did not do this with my daughter. There were several times when she was little (4-5 yrs old), when she acted very OCDish and like a PANS child, but I was so busy with her brothers who were more demanding at the time that I didn't persue it. She even had Pneumonia several times with behavior changes after. Again, I just blew it off as terrible toddler behavior even though I really knew better. Then when she was 7 years old, she got the flu mist and within 48 hours she was a complete mess. Full blown OCD, anxiety, seperation anxiety, tics, the whole nine yards. The horse was out of the barn and there was no catching it at that point. We have been chasing it for nearly three years now and never been back to base line. Upon testing, obviously she had high IgG and IgM Mycoplasma P titers and must have had for years and it was activated by the flu mist as was her chronic lyme (according to her LLMD). In my opinion, you would do yourself a favor by trying to find out what might be lurking and causing problems for your son now. This is not going to go away (JMHO). Might as well take control and start the good fight now. You know the drill.

 

I don't mean to sound matter of fact or uncaring. On the contrary, my heart breaks for you. You don't deserve this. But I know you will get through it and you will do a fantastic job of fighting for those kids. Being proactive is the best approach. Again, this is all my opinion based on my sordid experiences. Possibly your experience will be less challenging. I hope so. Praying for you.

 

Dedee

[pr40]

it's a tough one. I am responding just to bump you up so others can see the post again. If CDC is positive and they don't want to treat it, that is negligence and you should be able to find a dr to treat lyme somewhere. if you say where you are, perhaps someone can give you a concrete idea.

other than that, you can tell drs what they need to hear to give you abx like high fever.

[LNN]

If your son is CDC positive for lyme, then you need to find him a lyme literate MD (LLMD) to get him the right treatment. A pediatric group won't be able to help you.

The fact that the advil helps tells you that inflammation is at least partly driving his behaviors. You may want to make it part of his daily regiment. One dose with breakfast and one dose at dinner. Sporadic dosing won't give you the same improvements as steady dosing will.

 

The fact that he also responds well to some of the supplements is also a good sign. It tells you that finding the right interventions can be really helpful. However...

I'd really reconsider starting three new supplements on the same day. I try to always introduce only one thing and give it for 1-2 weeks before making any other changes. Also, when we started treating pyrroluria, it took us 5 months to build up to the right zinc/B6 dosage. We stayed at the starting dose for a month, then built up once a month. At our third increase, we had to back down and hold steady for an extra month before building up one more time. If the conveyor belts have been stuck for a long time, you need to re-start slowly. And not everyone has pyrroluria. So if you haven't tested for this yet, you may want to either only introduce a low dose or wait until you get results. You also have a fever in the picture, further muddying the water.

 

I know how tempting it is to throw spaghetti at the wall and hope something sticks. Lord knows I've done it. But I always end up regretting it and have to start over because I end up not knowing what caused a problem and what helped.

 

Financially, we had to bite the bullet for awhile and pay for each kid to see our LLMD - they each needed his full attention. But as they've gotten better, we're able to cover both kids in one visit, cutting the cost in half. LLMDs generally don't take insurance but they usually give you the claim form you need. You pay for the visit up front but then generally get reimbursed 60% for using an out of network provider. So it's not entirely out of pocket.

 

At your initial consult with your daughter's LLMD, you may want to see if there's a way the LLMD can spend 20 min of the appt examining your son so that he can be considered a patient (and then make a full appt for your son as soon as they can get him in). If you can do this, maybe the LLMD can order a pyrroluria test for him as well without having to wait for his own initial consult. You may also want to read the archive discussion on the pros and cons of doing 23andMe genetic testing - which would give you better guidance for deciding which supplements may help your son the most with his moods.

[tu4four]

Thanks for the advice. I did ask our non-believing pedi to test for mycoplasma and ebv, etc when I went in a couple of days ago.

 

We do have an LLMD in Colorado--My daughter has an appointment with our llmd in Colorado in November. Maybe I can get him in, too. He was not symptomatic for so long, and now all of a sudden, it's undeniable.Thank you for your help

[tu4four]

LLM--I know that you are right about going slow. I know I need to. However, my daughter has been battling this for 8 years. I am now losing my son. And my 4 year old is right behind him. Nothing terribly bad yet, but lots of quirks and strep 4 times in 2 months--not always symptomatic. And I have a 17 year old who has more straightforward lyme...joints, heart issues, air hunger (she also has babesia and Bart as most of us do). And of course, OCD.

 

Our house is as close to a psych ward as I have seen on a neighborhood street...dd11 doing crazy things like climbing out her second floor window onto a tiny patch of roof to dry a pair if pants, painting her mirrors in her room with wall paint and enamel--completely covering the mirror and getting paint all over her floor, clothes, arms, long hair, face. Shaving her hair three or dour inches back from her forehead. Sitting on our upstairs banister with her legs hanging over, crying that I am not dead, threatening all of us with scissors, anything she desires. Constant screaming, running, threatening. Continued clothes issues. Cutting up her clothes, anything else she wants to, painting her sister's door and writing mean things on it, banging up all our walls, etc, not following any rule in our house. Completely non-functional and truly what I think of when I think of crazy.

 

I have not seen any change with her lyme treatment for 6 mos--I don't expect her to be cured in that length of time, but some periodic change--up or down.

 

We've done the Cunningham stuff (cam kinaae 178) consulted with dr. T, seen an llmd in Missouri 2 years ago and worked with a local functional med Doctor. our current llmd is in colorado. we did four years of psych meds. Nothing has made any difference (psych meds would bring slight improvement and then fade away)

 

I am desperate. I am watching my family disintegrate, and while I am panicked over this for them, I also know that my husband and I can't keep going like this much longer. He said today in all honesty...we need to make sure our wills are all done because I really think this is going to put us in an early grave.

 

Thank you for your advice--you have no idea how helpful it is to me, and I know that when no one else gets the anguish of losing your kids to something most people don't believe in--you all get it. Thanks for every bit of advice.

[LNN]

I unfortunately do get it. In the month that my DS was diagnosed with lyme (in '10) we'd been at this since '07 and had already done abx, T&A, Pex, steroids, IVIG. Now I was facing the lyme rabbit hole? A week later, my mom died. A week after that, I was laid off. And my DD was turning bipolar. My BFF was gently telling me I needed to get myself on Prozac because she was seriously worried about my own stability. In fact, it did put me into a 6 month tailspin in what might be described as a nervous breakdown. I was so empty, so exhausted, so utterly defeated and felt so very alone, even though my DH was supportive.

 

But the reality was, there was no one else who was going to shoulder this burden for me. We thankfully had just started with an awesome LLMD, so I finally had some support. Hopefully your new LLMD will give you the same. But even with his help, the day to day hard work was still up to me. I made myself laser focus. It was too much to try to hold it all together on all fronts. My only goal was to get my kids well. Every brain cell went toward reading and forcing myself to be methodical in recording their behaviors, examining diet and supplements, etc. You know the drill. I'm sure you're already doing it.

 

Lyme absolutely had to be addressed first. No fixes were going to stick with a chronic infection messing everything up. But I agree with you. To not see any changes after 6 months would've made me re-examine too. So hopefully your new LLMD will have a more effective approach. And the people on this forum and the huge knowledge you can gain from the archives will help too. So hang in there. I can say in hindsight that as hard as the journey was, it was so worth it. My kids have blossomed and are realizing the potential I always knew was there. My son has some yeast/gut healing to do after 4 yrs of abx, and he remains vulnerable to illness triggers - so it's not like I can say it's over forever. It could of course get bad again. But the nightmare of freefall is behind us. My daughter is very steady and happy. Best of all, neither remember much of the bad times. The PTSD is mostly my burden, not theirs. So hold on. Keep fighting. It's a winnable war.

[tu4four]

LLM--I a. So glad that your kids are doing better, so glad that they don't remember much, sorry for you and your husband to have had to go through this and to have lost so much. Thank you for the encouragement--I take it with a grain of salt when other people tell me it will get better. But when one of you tells me it HAS gotten better, I am encouraged. You deserve big blessings!

[LNN]

Tu4four - I liken the pain to child birth without an epidural. During the event, you can't imagine how you're ever going to get thru it. You scream, cry, swear, beg to be put out of your misery. But the only way to the other side is thru the pain. When it's behind you, you wouldn't dare tell someone who's pregnant "oh, it's not so bad." You don't lie. You say "yes, it really, really sucks." But you also add, "the prize you get at the end is soooooo worth it."

[PowPow]

LLM--I know that you are right about going slow. I know I need to. However, my daughter has been battling this for 8 years. I am now losing my son. And my 4 year old is right behind him. Nothing terribly bad yet, but lots of quirks and strep 4 times in 2 months--not always symptomatic. And I have a 17 year old who has more straightforward lyme...joints, heart issues, air hunger (she also has babesia and Bart as most of us do). And of course, OCD.

 

Our house is as close to a psych ward as I have seen on a neighborhood street...dd11 doing crazy things like climbing out her second floor window onto a tiny patch of roof to dry a pair if pants, painting her mirrors in her room with wall paint and enamel--completely covering the mirror and getting paint all over her floor, clothes, arms, long hair, face. Shaving her hair three or dour inches back from her forehead. Sitting on our upstairs banister with her legs hanging over, crying that I am not dead, threatening all of us with scissors, anything she desires. Constant screaming, running, threatening. Continued clothes issues. Cutting up her clothes, anything else she wants to, painting her sister's door and writing mean things on it, banging up all our walls, etc, not following any rule in our house. Completely non-functional and truly what I think of when I think of crazy.

 

I have not seen any change with her lyme treatment for 6 mos--I don't expect her to be cured in that length of time, but some periodic change--up or down.

 

We've done the Cunningham stuff (cam kinaae 178) consulted with dr. T, seen an llmd in Missouri 2 years ago and worked with a local functional med Doctor. our current llmd is in colorado. we did four years of psych meds. Nothing has made any difference (psych meds would bring slight improvement and then fade away)

 

I am desperate. I am watching my family disintegrate, and while I am panicked over this for them, I also know that my husband and I can't keep going like this much longer. He said today in all honesty...we need to make sure our wills are all done because I really think this is going to put us in an early grave.

 

Thank you for your advice--you have no idea how helpful it is to me, and I know that when no one else gets the anguish of losing your kids to something most people don't believe in--you all get it. Thanks for every bit of advice.

I just wanted to offer hope tu4four. your post almost looks like I could have written it. we had the cutting clothes, cutting herself, scratching into every single kitchen cabinet with knives (large X on the front of each one), shaved her head (at the time she was a 13 year old with shoulder length hair!), holes in walls, doors kicked out (not just hers!), screaming in the street, chasing people naked with toilet plunger, running naked in the snow to run away-- terrible, terrible stuff.

But now, she is 15 1/2, giggling, on her bed, looking at silly videos. She is wearing makeup, does her hair everyday, showers, kisses her sister, and is in school, making B's!

She just had her 5-year "anniversary" of onset. 5 years of diving into and never think we were coming back. dark dark days.

we also have/had other kids affected~ and they are all OK. one with tics, still, but that is it.

We did lyme tx (major intergrative meds and IV abx) for over a year and it did not help. She had CDC positive Babesia WA-1 and Lyme. It may have triggered or exacerbated PANS, but it was not the problem to solve.

steroids, pex, ivig, those brought her back, slowly. I would say that it has been a slow (and not always positive) road to recovery since May of this year.

have you tried autoimmune-type treatments?

Edited October 20, 2013 by PowPow

[tu4four]

Powpow--thank you for that encouragement.....guess that's what I'm thinking about---either continuing just lyme and co treatment or turning around and looking at autoimmune as the forefront issue. My family has quite an extensive autoimmune history. I know that Lyme treatment is important, but with no change.....

 

I am so sorry that your story is so similar---as my daughter once said when her OCD was way out of control, "this is a hard life." Your story, too, gives me hope. I know that my daughter is still in there...and tonight after Advil and other supplements.....he was the sweet boy that I have known all along. Like everybody else, I just want to keep my child.

 

Glad that your daughter is better....can't wait for the day that I hear my daughter giggle again.

 

Blessings

[PowPow]

In a way, the decision on Lyme vs pans route was made for us ~ and it was made by this disease itself. she suddenly refused all meds/ivs/ even picc line flushes in Feb 2010. She was done. totally, completely down with the dozens of meds and the IV. We had no choice. We also could not get to her leave her room, much less go to the LLMD. The doc ( I think) did not believe us that she would not willingly come in and sent us notes/ phone messages saying "child must come in". So my husband carried her, kicking and screaming, wearing depends into the office. The LLMD just stared and said" I think going the neuro (Dr L) is a good idea!" We got in to see Dr L in April of that year. We got the prescription for steroids, but could not get her to take them until around Memorial day. 6 weeks of staring at that bottle and not being able to get her to even try it.

It was pivotal, and seemed like the end of the world at the time. I was convinced that this Lyme treatment would fix her and she only seemed to worsen. When she refused it all, I thought she would never recover. By her refusing Lyme tx, we had no choice but to "go the PANDAS route" and it was incredibly helpful.

When my second daughter developed PANS, we did not even check for Lyme. maybe short-sighted, but I felt I could not "go there" again.

She is fine now, and has been after pex/ivig and steroids in 2011 and 3 weeks at USF in 2012. She has been off all meds for over 9 months and has been nearly symptom free for close to a year.

We also have a strong family history of autoimmune disease.

I do not envy you being in the position of choosing what to test/treat for both your kids. It is so hard to know what to do. My husband and I have discussed this and if another child develops severe symptoms in my family, I will definitely go the PANS/autoimmune route first. If that is not helpful, I would then consider Lyme/integrative medicine.

Edited October 20, 2013 by PowPow

[pr40]

tu4four -- I want to encourage you to approach your family's health as an autoimmune issue first. that does not mean you should not treat lyme but understand that the effect that lyme has on them is due to their auto-immune system and the way it functions. there are simple steps you can take in chaging diet and as much as possible of lifestyle.

it's heartbreaking to read your post and I want to send you all the best wishes.

[T_Anna]

Tu4four, recently they are finding that more and more severe PANDAS cases are testing for elevated ACE, SED and even Hashimoto's encephalopathy.

 

My DS has been stuck in severe OCD since last Fall. Since last January we have treated with IVIG, PEX, abx and antivirals. Everything has brought him microscopically back to us, but he is still home bound and stuck. We are starting to treat this as AE and we have seen more of our son lately (past 2.5 weeks). The steroids have made a difference too and we hope that the IVIG this week will also help. We have added an integrative doctor who is also a board certified neurologist. Her opinion regarding Lyme testing for DS is that even if tests positive it's more important to solve the faulty immune system than going after illness with more abx. She believes that his system is so compromised that he'll test positive for any illness that he has been exposed to.

 

T.Anna

Ds15

[PowPow]

Tu4four, recently they are finding that more and more severe PANDAS cases are testing for elevated ACE, SED and even Hashimoto's encephalopathy.

 

My DS has been stuck in severe OCD since last Fall. Since last January we have treated with IVIG, PEX, abx and antivirals. Everything has brought him microscopically back to us, but he is still home bound and stuck. We are starting to treat this as AE and we have seen more of our son lately (past 2.5 weeks). The steroids have made a difference too and we hope that the IVIG this week will also help. We have added an integrative doctor who is also a board certified neurologist. Her opinion regarding Lyme testing for DS is that even if tests positive it's more important to solve the faulty immune system than going after illness with more abx. She believes that his system is so compromised that he'll test positive for any illness that he has been exposed to.

 

T.Anna

Ds15

t.anna,

how are you treating? sorry to hijack the thread!

so glad to read this!