Jump to content
ACN Latitudes Forums

tu4four

Members
  • Content Count

    163
  • Joined

  • Last visited

  • Days Won

    1

Posts posted by tu4four

  1. My family has exploded today--including me. Actually, my husband is the one who has stayed somewhat sane through this all.

     

    This has been building for quite some time...I have a dd11 who cannot/looks like WILL NOT do anything I ask. You have probably seen some of my posts about how out of control and oppositional she has become. She routinely calls me a moron a tells me to shut up stupid, destroys our home, etc. She has done all kinds of wild antics, pulls out anything that she wants and makes huge messes but will not pick up anything.

     

    I know that she is sick. But I also know that we cannot live this way any more. My other children are watching and learning from this. My children no longer listen to me. I can not parent when this is going on. I was a good mom. But now I am angry all the time, many times every day being bullied my dd11 who refuses to do anything except antagonize her siblings and refuse to help in any way. My 17 yo wants to bolt all the time. I feel like we are losing her.

     

    We have been treating lyme for six months. No change. She was on psych meds for four years with no consistent improvement--all kinds of things from risperdal to depakote to lithium to pexeva, etc, etc. we took her off of meds in feb due to bad side effects.

     

    We have our next lyme appointment in 8 days and our next new immunologist appointment in 10 days. We had our first neurologist appointment last week and will be doing MRI, nerve testing and lumbar puncture. She has a high tpo(but really not excessive), and I was hoping our neuro would want to really look into hashimoto's encephilitis, he really did not place much value on the tpo.

     

    Once we see these next two doctors. If we don't find someone to help us pursue ivig, I will be calling dr k. I am told that 1 hd ivig for my daughter will be $15,000. The thought of borrowing money to pay for something that may or may not work makes my insides crawl. I have other kids...one who has periodic joint, heart, breathing and OCD issues and a younger one who is starting to have her kind of irritability, sensory issues, and I know he has OCD.

     

    In the meantime I have sent her saliva off to 23andme, and we hope to hear about her pylourria results this week.

     

    Tonight I gave her a small dose of Abilify again--did not want to do that until after the neuro tests, but truly, we can't all stay under the same roof like this any longer.

     

    Anybody have any other ideas--either for my dd11 or the rest of us? Sorry for the repetitive nature--I know a lot of you have read so much of our story....

  2. Big hugs to you. This is so hard on marriages. It's hard period. My husband and I have been in that horrible place where we just can't agree---where I know my kid (s) is sick, and he knew it on some level but hadn't read everything that I had read and wasn't convinced. Who wants to believe it? And it often LOOKS like a behavior issue for us--we often talk about how that belief is a luxury that we can lo longer afford.

    For us, in addition to the above, I think a lot of what was going on was the crushing weight of providing for our family with unending medical bills. I am a stay at home mom, and financially the responsibility has all been on my husband.

     

    I think a lot of what made things better, ironically, was when things got to be the worst for my daughter. Once it was undeniable and our families started acknowledging that it wasn't just behavior, we started to hang onto each other more. I also had to learn that I couldn't argue or shame him out of withdrawal. Yuck. I had to just so what I had to do, accept where he was and go on. Not sure I ever perfected that, but I mad some big improvements.

     

    Good luck and big blessings to you.

  3. Took my daughter to the long awaited neuro appt yesterday. He is totally mainstream, as I expexted, but he is going to so an MRI a nerve conduction test and a lumbar puncture. The neuro was kind a d understood that we are going through something really "bad" as he said. But, of course. He didn't think it was pandas. I didn't ask him if he thought so, but after I got a feel for him. I asked him what his thinking was about it. He said he believed in it but thouught it was way over diagnosed.

     

    Before we go through all of these tests, especially the lumbar puncture, is there anything else I should ask him to look for? (I mentioned encephilitis, and he said they could add that dimension while we are already doing the lumbar puncture.

  4. Oh, I am so thrilled for you and how far he has gone, but so sorry he is not all done yet. I know that you must be exhausted.

     

    I was wondering if your son had a lumbar puncture to look for encephilitis and other things in his spinal fluid? I 'm wondering because my daughter is going to have one, and I don't dilly know what to expect. The doc didn't seem to suspect encephilitis, but I am desperate to find anything to pay for ivig.

     

    My daughter is different than your son in that her obvious OCD is not what is taking such a toll right now---it has been a bigger issue in the past, but now it's clothing issues--she can hardly wear anything (I know that could be an OCD thing as well as clothing sensitivity) and she gets wildly angry and rages at the drop of a hat. She cannot function to so any schoolwork, has list a lot of math skills and is extremely immature.

     

    So just wondering if your son had that procedure and what to look for

  5. My son has had a low grade fever on and off (but mostly on) for the past few weeks. On one occasional he threw up (just a little), but he often complains of nausea. I have taken his to the pedi twice for this, but they so the strep test I ask for (negative the last two times) and since his fever is so low (often it shows 98.6 on their therm), they send me on my way, and that's the end of it.

     

    Last time the pedi did test for a couple of viruses..he showed a very high igg to ebv, but that's it.

     

    This morning he also has diarrhea. Anybody know what could be causing this?

     

    He is not my most affected child, but I feel like leaving anything untreated for long period of time could cause a bigger issue. FYI, my 4 year old has also had a low-grade fever for almost as long. It's the kind of thing where their hands are warm in mine and they are warm on their foreheads.

  6. Have you just had contact with 23and me? My kit is sitting on the table with spit in the tube for two days because the site won't recognize my e-ma or allow me to create a new one with totally unrelated data. Even when I call the non-customer care number number, they haven't answered in the past three days, and apparently their phone message box is full. I am wondering if something has happened there?

  7. I know this sounds silly, but I ordered our kit and now that it's here and I have a tube full of saliva I can't sign in to register it. They obviously have my e-mail because I've gotten a couple from them, but I keep getting a message that says there is no such account and then when I try to create a new one they say they can't accept my registration at this time.

     

    Sorry, I know this is silly. I just thought some of you might have had that problem.

     

    Thanks,

  8. We did psych meds for four years, and we tried depakote. It was not one that worked particularly well for us. We has a pretty brief run and then switched to stavzor, which is similar but newer. Stavzor was better for my daughter except for the horrible side effect of nausea and vomiting.

     

    We are not giving an psych meds right now. I often consider it again--like daily--because my daughter is in a terrible state, but I feel like I won't be able to see what improvement comes from if we put her back on them. And she was having pretty decent side effects....a fine tremor, then a large tremor, slurred speech, etc. Good luck.

  9. TPO Ab is 31 (high) range is 0-26

    Triiodothyronine free serum is 5.5 (high) range is 2.3-5.0

     

    These are my daughter's labs that came back today. Tsh and t4 were normal. I've been hoping for something that might point to hashimoto's encephalopathy or something that would qualify her for ivig---even through I know that the first line of treatment for that is long term steroids. Dd11 has lyme band positive--key ones, so i hoping.....

     

    Anybody know about levels like these?

     

    Thanks.

  10. I am so sorry that you Are going through this. We are right in the thick of it, and it is incredibly difficult. Prayers for you!

     

    I wanted to mention that band 23 is thought to be lyme-specific.....so that a positive on that band wouldn't be from anything except Lyme. You might want to look into lyme if you haven't done so.

     

    Good luck!

  11. 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

  12. 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!

  13. 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.

  14. 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

  15. 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.

     

     

     

     

  16. Thank you all for your great insight/info about what you have done. I have been out of town and am just now able to sit down and think through what you have said a d what my next steps might be before we see our LLMD in a month.

     

    I think it makes a lot of sense to test her for kpu and will do that ASAP. Also think it makes a lot of sense to try Knotwood and curcumin rather than relying on Advil at the worst of it. And I think it is definitely worth thinking abouT--not committing to, but thinking hard about the possibility of immune suppressing drugs.

     

    I have read other posts about hashimoto's encephalitis, and this is absolutely worth testing--all the women in my family have thyroid issues, I had grave s disease, , my father's family was full of auto-immune issues, and my father actually died from an auto-immune disease---wegner's granulomatosis.

     

    So...I am going to check all of these things out as fast as I can, and if I know nothing different in a month, I'll ask llmd for more of a cyst-busting drug like tindamax.

     

    One more thing I'd ask---please pray for our situation because my kids are sick, money is running out, and we have been trying to find some sort of answer--through psych drugs at first, then pandas, then Lyme for a total of about eight years--with very little headway. Only through God's provision can we heal our kids and make it out of this.

     

    Thanks for all of your wisdom.

  17. Wondering if we should continue down the same path. We have an appt with our llmd again in one month. I love our doc. He is the only one who has taken Us seriously and treated aggressively. All 6 members of my family have Lyme. Dd11 is extremely affected for 7 years--on psych mess for 4, , has PANDAS. My dd17 is in the middle of an episode with Lyme--which is how it goes with her. Usually involves a swollen joint, but this time no. More chest pain than ever before. OCD, heart rate as low as 36. Had an abnormal EKG yesterday,... I am havi g faith that Melton, Zithromax, cefdinir and a couple of supplements will be helping her.

     

    My dd11 who is mainly psych affected, though....I just have rarely seen any improvement whatsoever. And when she did improve a little--ie--sleeping--she quickly lost it. She is so difficult to live with, very ODD can't function academically--specifically in mAth --we homeschool. Constant yelling, fighting, etc. I feel like we are In Dante's inferno...always some level of .

     

    We have treated for viruses, etc. . We are in Texas and see a doc not on the coast---I love him and think he can help us, but any ideas on why no real improvement?

  18. I have also noticed that sometimes my kids are not clinically sick. But they look sick around the eyes....sometimes with darker circles. For what it's worth, my son sometimes starts having issues --less ability to concentrate, more agitated, etc, and we give him lysine--after a few days he seems better. Less agitated. I'm thinking this points to viruses which can big them down, but not sure of that

×
×
  • Create New...