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I think I may give up


eljomom

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2 things:

 

1) I quote you: "I know if I go to Dr. B or Dr. K, they will offer IVIG. So I don't go, because I don't want the "one size fits all" treatment protocol".

 

I have had a consult with Dr. K and and we are currently in Dr. B's care. They are very different in their choices and approach, as well as their belief system re: PANDAS. Dr. B at no time jumped directly to, or pushed IVig. To the contrary with us, he immediately ordered thorough testing for my son and his well laid plan was to try an abx combo first, then consider steroids if there was no change, then "discuss" the idea of IVig as a last resort. The testing and the results of the abx protocol says the rest for now.

 

2) I quote you: "Also wanted to say that, given our family history, what are the chances this would really be Lyme"?

 

I have a huge family hx of Strep, Scarlett, Rheumatic, some OCD as well. It is believed that I also had Strep:PANDAS as a kid. I have to say that I really questioned the idea that Lyme could be present, especially since we moved here from Denver. I was floored when the tests returned as +. However, it is not a question of EITHER Strep:PANDAS OR Lyme, but BOTH. My son clearly has Strep:PANDAS, as evidenced by his obvious history. However, his inability to recover is due to the Bartonella and Lyme thrown into the mix (likely both from the same tick bite). Now that Dr. B has tested and discovered this (rather than starting IVig immediately, which he would not do), my son is recovering beautifully because the right abx are being administered to the presenting infections.

 

I feel really frustrated that we are all trying to provide some ideas and that they are being rejected. I hear you when you say you don't want to make it worse with various treatments, etc. however, TESTING seems to be what you are after. Therefore, GO TO A PANDAS PRACTITIONER THAT WILL ORDER ALL OF THE NECESSARY TESTS. There are some - that is why we made the trip to Dr. B. We knew he would test and that's what he did. Plain and simple. So, if this is what you want, go and get it!

Edited by Beeskneesmommy
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I just wanted to add that I know how you feel about your DH not being on the same page. I was there for a long time, and still are in a way. My only advice is this: PRAY. Pray for him, as the leader of your family. Pray for yourself, that God will give you patience. It is so hard to watch your kids suffer and feel like your hands are tied. Moms see things dads just don't (don't shoot me you guys!). It just takes them time. Sometimes a loooonnng time. My approach these days is to just plant the seed, throw out a comment, ask a question that will make him really look. And pray. I pray every day for discernment for him. I don't want to make any more decisions, I don't want to be caught between my children and my husband. I can't carry all this weight on my shoulders by myself.

I know some of you may disagree with me, but I am just sharing what is bringing peace in our family. Are my children all well? No, but we've found a path that is bringing us relief and is manageable both logistically and financially. We can't just get them all seen at the same time (yes, we are seeing now that we clearly have at least two definite PANDAS, possibly more, and there is also Lyme Disease in the mix).

We started with DS13 (our original PANDAS), and this month we started addressing DS15. I prayed and waited, and for in both cases, I "planted the seed" and waited for DH to say, "let's make an appointment with the homeopath." It was a leap of faith for him, but he saw results and continued to the second child, and now he said we can schedule dd11 for November (after we recover a bit financially). He has chosen to work overtime to pay for all this extra stuff. It was his decision and I admire him for that, rather than resent him dragging his feet like before.

So how did I get here? At some point I just had to trust God. Trust Him to guide us. Trust that He put my DH at the head of this family. And that with prayer is bringing us peace.

I am not judging those of you who have had to make hard choices. I know many marriages are under a lot of stress over this illness, and I know some have even had to split for the sake of their children. Each person knows their own stories and why they had to make those hard choices.

I hope this just helps someone out there.

And I also wanted to share that we saw Dr. Bouboulis a while back and he did from the get go run a lot of tests (he gave us the list and we run them through our local pediatrician, so that part was really expensive because it was all covered). He then asked us to run all the Lyme/co-infection tests through Igenex since ds had four bands positive through Labcorp. We never did get to that, we just proceeded with Lyme treatment locally (we are in VA). I really liked him and I see from some posts here he is getting more knowledgeable about Lyme/co-infections, so I would totally recommend him for someone who needs to find out what really they are up against. I think the fact that he accepts insurance (and even if it was out-of-pocket, I think the original consult was only about $300) speaks volumes about his sincerity, compared to some LLMDs out there who charge an arm and a leg and do not take any type of insurance.

Wow, that was long... I really mean this well, please do not feel judged in any way. Just sharing my experience...

 

Isabel

Edited by mati's mom
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Thank you beesknees....I don't mean to frustrate everyone. Gosh. Again, if we were "clear cut" case, I would have jumped ship long ago and set sail. I do hope people will continue to share opinions here and not take offense if their suggestions are not taken. Again, we are all in the same pot of stew (our kids are having neuropsych issues), but some of us are potatoes, some are meat, some are carrots. They all have the same symptoms, but can have very different causes, courses, and treatments.

 

Beesknees....I made an appt. at a local immuno (husband can't really argue with that.....no travel per se, we've hit our in-network deductible, so no cost (well, still need to check that). do you have the list of what dr. b tested for? I would like to bring it to this immuno, and maybe get the ball rolling. Who knows, if he even knows a lick about pandas, but if something shows up, then maybe dh will be willing to pursue an apt. with dr. b.....

 

 

2 things:

 

1) I quote you: "I know if I go to Dr. B or Dr. K, they will offer IVIG. So I don't go, because I don't want the "one size fits all" treatment protocol".

 

I have had a consult with Dr. K and and we are currently in Dr. B's care. They are very different in their choices and approach, as well as their belief system re: PANDAS. Dr. B at no time jumped directly to, or pushed IVig. To the contrary with us, he immediately ordered thorough testing for my son and his well laid plan was to try an abx combo first, then consider steroids if there was no change, then "discuss" the idea of IVig as a last resort. The testing and the results of the abx protocol says the rest for now.

 

2) I quote you: "Also wanted to say that, given our family history, what are the chances this would really be Lyme"?

 

I have a huge family hx of Strep, Scarlett, Rheumatic, some OCD as well. It is believed that I also had Strep:PANDAS as a kid. I have to say that I really questioned the idea that Lyme could be present, especially since we moved here from Denver. I was floored when the tests returned as +. However, it is not a question of EITHER Strep:PANDAS OR Lyme, but BOTH. My son clearly has Strep:PANDAS, as evidenced by his obvious history. However, his inability to recover is due to the Bartonella and Lyme thrown into the mix (likely both from the same tick bite). Now that Dr. B has tested and discovered this (rather than starting IVig immediately, which he would not do), my son is recovering beautifully because the right abx are being administered to the presenting infections.

 

I feel really frustrated that we are all trying to provide some ideas and that they are being rejected. I hear you when you say you don't want to make it worse with various treatments, etc. however, TESTING seems to be what you are after. Therefore, GO TO A PANDAS PRACTITIONER THAT WILL ORDER ALL OF THE NECESSARY TESTS. There are some - that is why we made the trip to Dr. B. We knew he would test and that's what he did. Plain and simple. So, if this is what you want, go and get it!

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Hi Eljomom--Your honesty has obviously hit a nerve.

Most of us on this forum have been where you are -- worried about treating, worried about not treating--

 

The article in the Washington Post today is a good example of one family whose "path" to recovery was not clear cut. Most of the families on here could say the same. Your situation is no different--and I understand your fear. (fyi--My kids have never had a pos. strep test that we have "caught"...BUT OCD and mild ticcing occur when they are exposed to illness in others--especially, but not exclusively strep.) They are REACTIVE and once that reaction is set-up it is like sledding downhill.

 

Do you think, given your family history, that your family genetics may pre-dispose your child to an autoimmune reaction flair that results in OCD/ticcing (ie, the PANDAS paradigm)?

 

Given that Dr L is a very well respected mainstream pediatric neurologist your concerns re: steroid use should be discussed with her directly. We were in a similar situation and I can tell you a lyme specialist reviewed my d's case, tested for lyme and determined she had been infected, put her on Doxycycline and then said OK to trying steroids.

 

re: your dear husband, I am sure this is tough on him too, and he may never be fully "on board." Be sure he goes to all appts. Video tape your child for the doctors to see and ask your husband if it is really OK with him to leave her as she is? Dr. K asked me to imagine my d's life at 20 with the same symptoms, and would we be OK with that? Good question.

 

You have a child that is obviously struggling and whether it is tourettes syndrome only, or PANDAS triggered, I hope you find the strength to keep trying to help her.

Edited by T.Mom
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One more thing. Igenex doesn't care who orders their tests, as long as it is a medical professional. I went to my chiropractor at first, and there is even something you can have the medical practictioner sign for igenex so that igenex will send the results directly to you. So you don't have to go to an LLMD for that -- just find someone willing to sign the paperwork for you.

 

Second, your DD has a lot more positive bands than my son does. However, both your DD and my DS have band 58 positive, which in Europe is considered very significant (they have a strain of lyme there that is called b. afzelli (rather than b. burgforferi) that is very specific for P58. Here is a link about many European laboratories,

 

http://jcm.asm.org/cgi/content/full/38/6/2097

 

If you look at table 10, you will see the "rules" for the labs as well as the author's suggested rules, based on their analyses. You can see that a 2-band positive of p58 and p41 together have a specificity of 94% (only 6% false positive rate) which is extremely good. (Sensitivity is the false negative rate.) You can look at the other bands that your DD has. Maybe this is the proof you (or your husband) need.

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Gosh---I am truly sorry to offend everyone. Again, the Post article seemed VERY clear cut to me!!! Kid had had strep. Kid goes bonkers. Kid gets better. Kid gets sick again. Kid takes 4 weeks of antibiotics, and gets well. Well, after a circle of craziness before trying the antibiotics.

 

YES, I think my kids are predisposed to an autoimmune reaction to infection. HOWEVER.....we do not have the clear cut "FLAIR" that everyone seems to have here. We started with the germs a few years ago. Then added the tics 18 months ago...just a few to start. Then we added a bunch more, with some handwriting issues. NEVER DO THEY STOP. This is what makes me wonder. There is never periods of "subsiding" of symptoms. Just "always there" and "worse."

 

I do make my husband come to appts. He's the one who says "she's happy"---because he doesn't pay attention to the tics, or the tapping or huffing, or any of it. She's just a pain in the a$$ sometimes, quirky...yes, he's still on that path. The tics will just go away. Lots of kids have tics......Ugh, I can't even go there right now.

 

I have tried to video, but she is too onto me, even if i pretend to text and use my cell.....

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This is my last post...for now. Don't want to beat a dead horse here but the case you are referring to in The Post is a classic Pandas case. I am suggesting that you may not be seeing the reprieve with a course of abx because there is another chronic infection preventing the recovery. If a child with Pitands gets the flu, they may flare. If they get bitten by a tick and develop chronic Lyme they will flare too and will continue to flare until they are treated for Lyme appropriately. Just something to think about.

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Gosh---I am truly sorry to offend everyone. Again, the Post article seemed VERY clear cut to me!!! Kid had had strep. ....

 

.....we do not have the clear cut "FLAIR" that everyone seems to have here. We started with the germs a few years ago. Then added the tics 18 months ago...just a few to start. Then we added a bunch more, with some handwriting issues. NEVER DO THEY STOP... "always there"

 

 

 

Wendy, you have not offended me, but I wanted to add the specifics of the Post article to clarify--

 

That article is all about the fact that PANDAS is a very difficult diagnosis to make, not clear cut at all.

 

From the article: "Elia, who saw Will in March of 2009, said her diagnosis was based largely on Will's history. His age; the sudden onset of his obsessions; the improvement after antibiotics; the repetitive sniffing, which was actually a tic; and the lack of any other credible explanation for his behavior were characteristic of....PANDAS..."

 

Will started in Nov 2007...and "the intensity of Will's problems seemed to wax and wane but never disappeared entirely..." for well over a year. They did not see Dr. Elia until March 2009.

 

Nowhere in the article does it ever say that Will tested positive for strep.

 

In fact, the author carefully states: "After a second visit, the doctor determined that Will might have strep throat and prescribed a 10-day course of amoxicillan." If I remember correctly, in an earlier post you said that your dd went two years w/ no doctor visits and during that time she had temperatures as high as 104 degrees -- and then the symptoms started. Whether it is lyme, Pitand, etc...I want to encourage you to keep asking the good questions you have--You are obviously a dedicated mother, you can and will get help for this, keep seeking the answers, all the best to you.

Edited by T.Mom
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Chiming in here--not that anyone asked ;)

 

my kids never had remitting/flares either- even the strep+ one. She never got better between the strep infections. Both girls were bad, then worse, then pretty bad, then worse-- then TOTALLY HORRIBLE.

The autoimmune therapy of steroids helped for a period and then they got worse again. PEX and IVIG helped one. PEX AND IVIG helped the other somewhat.

 

My point is that my girls definitely fit the symptoms are "always there" & "worse" pattern.

I wish I had a superman cape. I would whisk in and fix this stupid problem for all of our kids. Thinking of you eljomom. Did you get my PM?

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And I also wanted to share that we saw Dr. Bouboulis a while back and he did from the get go run a lot of tests (he gave us the list and we run them through our local pediatrician, so that part was really expensive because it was all covered).

Oops, I meant to say that part was NOT expensive, our insurance pick up the bill for all the labs through Labcorp.

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Eljmom,

 

I detect a note of denial in your posts. You come here seeking council, but refute all suggestions as inappropriate for your child. Yet you keep coming back to hear those same opinions again. Everyone here truly cares about the suffering of PANDAS / PITANDS children and their families. All posts (including mine), are given with the best of intentions. I think somewhere behind your objection you see the truth in some of the posts. PANDAS parents do not have the luxury of denial or being paralyzed. You can only take deep breaths as you dive into your next plan of attack. You can certainly take the luxury of coming here for support, knowing that you are not alone. If there is ever a doubt get another opinion, period. Your child deserves a definitive diagnosis whether it is a yes or no. You can not put yourself in a place of second guessing. Clearly you are not at peace with your current status or you wouldn't keep coming back asking the same questions and then arguing the same issues. If those issues are so clear then they should be non-issues. You must have peace that you are doing what is best for your child. Most here are telling you that you need to take an additional path. It is clear by your actions that you think so too. Otherwise, why are we still discussing it?

 

Dedee

Edited by Dedee
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I will say one more thing- I agree with Dedee,

 

I seem to see you say constantly that your children's case is different (from whoever is giving you advice at the time).

 

They are not! All of our kids have different stories, but in many ways the same. Many here can trace pandas to strep, many cannot, many suffered for years before finding pandas, many have not, some become extremely debilitated, some do not. ALL OF OUR STORIES ARE DIFFERENT, yet so much the SAME. Your situation is NO more different, or difficult, than any other.

 

Many of us have gone from doc to doc before finding the right path, many of us have had this cause great difficulty in our marriage, many spouses are not (or not completely) on board, all of us are afraid, we all second guess our choices, you are not so different. The thing here is, you need to accept that this is not black and white, there is not a perfect doc, science has not caught up with this (or these) illness, and like it or not YOU need to call the shots. I am afraid if you don't accept this, you will never move forward. And all the while, while not making a decision, and not moving forward- you are in the end, making a decision. And the decision to do nothing, to think no one understands your case, and to blame doctors is going to be a very hard one to live with in the end.

 

I am thinking possibly a qualified psychologist could help you sort this out. I know it was so helpful for me to see my kid's psych when making difficult decisions, and having to be the kids psych. I think it would help you to find someone who can help you look at the facts, and determine what (if any) of your own personal attributes are making it so hard for you to move forward and make decisions.

 

I mean this with only the best intentions. It is my opinion that parents come to the forum (including me) for help. I, personally, appreciate some tough talk and honest truth- and think in the end- that is the best, kindest, thing you can do for a person. I wish someone sat me down on day 1 (although I realized this somewhat quickly thanks to the forum) and told me that this was a painful, difficult, disorder. That most likely there was no cure. That I would need to change my parenting style. That my husband and I would need to get it together, fast. That I would need to call upon close family and friends for support, and that I would need to completely restructure my priorities. That my kids would suffer, my job was to minimize this suffering by seeking qualified medical and psychological treatment, and become an expert myself in both of these fields. And that, through all of these changes, and suffering- our family (and especially our kids) would turn out to be more compassionate, insightful, sensitive and intelligent due to the struggles they have faced.

 

Good luck- keep posting!

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P.Mom....now I've clearly offended you....that was not my intention. I am sorry if you took it that way. I do understand your baseball anology....but we are not all walking in the same shoes. Our case is more complicated and less clear-cut than many on here...that's all. And I also have another roadblock that I don't mention on here much......my husband (not "blaming"....but...) is VERY VERY VERY VERY against anything aggressive. So my "hands are tied" truly here. He has said at appointments that he doesn't want to "do anything over the top"---so unless someone somewhere....be it a parent on this forum, or a doctor, or god-forbid she goes downhill.....can convince him otherwise, I am "paralyzed" in more ways that me just not "getting off the pot" so to speak. So I come here, in some ways, hoping for the golden egg I can present to him. Someone who knows something, or find a doctor who will tell it like it is to him......that one nugget of information someone earlier posted.....that might change his thinking.

 

My husband was very skeptical of my researching while I was trying to find the cause for my DD9's Aspergers, motor tic disorder, ADHD, PANDAS diagnoses. Several times he told me that I was wasting my time, that I was being foolish and that I should trust our family doctor who wanted to Rx anti-anxiety and tic meds to fix the problem. I refused - it was so stressful for us we ended up in councilling. I decided then that I did not need his permission to find out what was making our daughter sick, and that I would find the answer. I continued on until I found this forum when everything clicked. I found an LLMD who did IGENEX tests which came back IND for lyme and positive for bartonella. If you have any positive Igenex results, I'm sure an LLMD will not have trouble telling your husband the consequences of not treating. Your hands are not tied, you just have to make up your mind to do what needs to be done. My husband doesn't comment anymore and seems more accepting of treatment since the results came back IND/positive. My DD9 is at 75% right now, so he can see the improvements. He has never said thank-you.

Edited by rowingmom
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And all the while, while not making a decision, and not moving forward- you are in the end, making a decision. And the decision to do nothing, to think no one understands your case, and to blame doctors is going to be a very hard one to live with in the end.

 

 

wise, wise dcmom!

 

one of dh's favorite band is Rush and there is a great line from a song we quote often. . . 'if you choose not to decide, you still have made a choice." even though we quote that often, still hard to put into practice.

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Well, I am pretty sure I've lost some friends here on the forum. I actually wish I had never posted what I did. I have a LOT to lose here. I have a generally functioning, pretty happy little girl, who happens to have a ton of tics and some ocd, etc....which I am fairly certain is linked to illness. There are parents on here who's kids have one tic and some ocd, and the child is debilitated. IF my daughter were debilitated, it would be a no brainer. I realize there is also a lot to gain, but to lose her happiness, joy and functioning, possibly give her something to affect her down the road from sharing blood products, psychosis from steroids.....so I am in a fine balancing act with this. I have been following the premier pandas specialist's lead (no, haven't pulled tonsils, I admit), which I found out about from here. I am trying to ignore tics, as this doctor told us visit after visit (5 in all so far), have asked to up the very low dose of zithromax, and been told not to, that it's high enough, went to Inf. Disease we were sent to, ENT we were sent to, I have asked to test dh and I for carriage and was told adults aren't carriers...this doc is all we have right now. and now people are upset with me for following the pandas specialists lead and not the forums. I come here for information, feedback on what has/has not worked with different cases, etc. I know I am probably pathological myself at this point, and a shrink is probably in order. I don't feel I am a "special case"---I feel WE ALL ARE SPECIAL CASES! I am working on getting the ball$ to ask for money to get a second opinion. I don't have the cash for an LLMD.........

 

Please forgive me for ruffling feathers here.....for not taking well-intentioned advice. I appreciate all of your input so much. I really do.

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