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lmkmip67

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Posts posted by lmkmip67

  1. I'm so sorry this has been so difficult. It is possible that the Prozac was that effective at dealing with your child's anxiety and OCD and all of it flooding back can be just unbearable. I understand the dilemma however, you want to get a baseline to see if the treatments are effective and therefore know if you don't need to continue with the ssri. But in this case, it seems like he still needs it and you will have to keep plugging away with your doctors until you are able to deal with the ongoing infections. Anything that helps your child feel better and your family function better is worthwhile so long as it is helping and not hurting. I too feel awful at times that my child is now on 9 pills a day. I have toyed with the fact that this is an auto immune disorder and I shouldn't be giving him intunive and Zoloft. But the fact is, the meds are helping him tremendously and we know he won't be on them forever, just until we can get this under control. My advise would be to discuss with your dr the possibility of continuing with the treatment and then pursuing other infections you might be missing somehow.

     

    Has he been checked for myco? Our pandas dr considers any titers over 150 to be a possible trigger for pandas symptoms even though its far from a positive result. My dd has done tremendously better since we treated her for it. Out PCP would never have figured that one out!

    You are right. There is quality of life, too. We will likely go back on it. I may give it a couple more weeks, but the fact is the OCD is still there and that isn't going to get better in two weeks just from being off prozac. Yes, he was checked for myco, it was negative. At least according to Dr. B. Still trying to figure it out, bu I think we do need to think of quality of life. Even if the mood improves after a few weeks off prozac, the OCD won't.

  2. Have you ever tried PEX or IV steroids? Maybe IVIG just wasn't the key. Do they think that he has an autoimmune process going on here? did you get the Cunningham test done?

    We did not do the cunningham test yet, no. When we were going to it was discontinued. Dr. B believes it to be PANDAS and maybe a side of Lyme....so yes, he does believe it is autoimmune. It all started after a strep infection and a nasty bout with that H1N1. almost 4 years ago.

  3.  

    Hi, sorry. We went on vacation and I tried to leave all of this behind for a while. It didn't work because Ian had a rough time on vacation. He has been off the prozac now for about 2, almost 3 weeks. His OCD is 10 times worse, so are rages, ADHD, etc. I can't tell if it is because of no prozac, still coming off of it, or if he is in a flair.

     

    THe treatments we have done are many combos of antibiotics and 9 HD IVIGs, all with no improvement, except antibiotics seem to keep his tics at bay. We say Dr. J for in case of Lyme, but that was negative. I am going to push more with Dr. J because Ian is on two antibiotics now and there is no improvement. Plus the flair or coming off of prozac is horrible. I can't imagine all this is due to coming off of prozac though, could it be? He rages, argues, is SO hyper, impulses are way out the window, tell us to STOP everything (singin, clearing throat, etc) everything bugs him. He is acting more like a 2 year old than anything sometimes, and he is 10. Intrusive thoughts are back big time. I could go on and on.....I am tired. We just got back from vacation so I am calling Dr. J tomorrow to push for something more. He said Ian had been exposed to lyme at some point, but said to say on Dr. B's treatment plan, which is augmentin and azith....but I am not sure that is the right treatment since it seems to do nothing....Sorry to ramble. I can't sleep tonight with worry about him, so I am surfing, trying to find the next step.

    Sorry, I am late to this thread. However, I am wondering why he has been weaned from Prozac to begin with? Was there a particular reason? Would it be wise to try another SSRI if he is clearly this much distress? Was he better on Prozac?

    A little better. But when he started on it about 1.5 years ago we noticed more hyperness and impulsiveness. THe OCD got a bit better, but ADHD type symptoms increased. So I wanted to really see where we were at this point. The issue is now his OCD and symptoms are so much WORSE than they were even before he was put on prozac. And some of the symptoms don't even seem like something prozac would help like anger, hyperness has increased, etc. So I am not sure it most of it is due to coming off, or is due to a flair. His neurologist said it was wise to try tapering off after 2 years anyway, and so he thought it was a good idea to try it during the summer. I also read a few others had issues when their kids weaned off. So I am not sure if this is from weaning off, or really his base right now. He does have a runny nose, so some could be a flare maybe....I am just totally confused. THe prozac did seem to help the OCD a bit, but it was till there....it is just 10 times worse now that it ever has been....

  4. Hi, sorry. We went on vacation and I tried to leave all of this behind for a while. It didn't work because Ian had a rough time on vacation. He has been off the prozac now for about 2, almost 3 weeks. His OCD is 10 times worse, so are rages, ADHD, etc. I can't tell if it is because of no prozac, still coming off of it, or if he is in a flair.

     

    THe treatments we have done are many combos of antibiotics and 9 HD IVIGs, all with no improvement, except antibiotics seem to keep his tics at bay. We say Dr. J for in case of Lyme, but that was negative. I am going to push more with Dr. J because Ian is on two antibiotics now and there is no improvement. Plus the flair or coming off of prozac is horrible. I can't imagine all this is due to coming off of prozac though, could it be? He rages, argues, is SO hyper, impulses are way out the window, tell us to STOP everything (singin, clearing throat, etc) everything bugs him. He is acting more like a 2 year old than anything sometimes, and he is 10. Intrusive thoughts are back big time. I could go on and on.....I am tired. We just got back from vacation so I am calling Dr. J tomorrow to push for something more. He said Ian had been exposed to lyme at some point, but said to say on Dr. B's treatment plan, which is augmentin and azith....but I am not sure that is the right treatment since it seems to do nothing....Sorry to ramble. I can't sleep tonight with worry about him, so I am surfing, trying to find the next step.

  5. Ian has been off prozac for about 5 days now. We tapered very slowly. His mood has been worse since coming off of it. Irritable, more melt downs, etc. He is 10 and was on 10 mg. he lashes out a lot and can't seem to help himself. Not typical. But we are at a spot where we had to see how he will do off of it. It didn't seem to do that much, but now I am wondering if the issues he is having are from the coming off the prozac, or if this is what he will be dealing with if he is off of it all the time. If anyone else had their child taper off SSRIs how long did the bad side effects last once coming off? When did they level out again to ground 0, so to speak? We were tapering down over 2 months, so it was very slow.

  6. Oh my goodness, that makes me feel a lot better, actually. Not that your DD is struggling with this, I wish no child had to. But that someone has similar issues. When treatment isn't working, at times I worry my kid is truly bipolar or something, and even question what we are dealing with. I will certainly look into the D3 and more probiotics. He takes one already, but maybe something else would be better. He is under 5mg of prozac now (was only on 10 anyway) be he is truly seeing effects from going down. We are going down tiny amounts at a time, too. but then our kids are not typical, certainly.I will send you a PM. Thank you!!!

  7. We are cycling down on Ian's prozac because while in the beginning it seemed to help his OCD some, it stopped and I didn't notice a difference. His mood while coming off of it is terrible. He is mouthy, disrespectful, swears, etc. I get that a lot of this disorder is impulsive and they don't think first before doing things. But I can not things that he is doing go, either. Today he was going to the bathroom and told me he peed on his shorts and the floor, on purpose, "But just a little, mom." He is 10. He has no bathroom issues otherwise. I admit I got very upset. I can't have him doing things like that. His punishment was to scrub the whole bathroom floor with a sponge and bucket of water. I am trying to stop taking away fun things and fit the punishment to the crime. But the things he does are so frequent, I am exhausted. I need to learn how to handle these issues better and to drive home some sort of lesson in there. He has to learn to fight the impulsive thoughts and OCD. He is making a lot of progress with his therapist he has been going to for the last year. I also understand it takes a lot longer for our kids to make the connection between behavior and consequences. But sometimes I feel like he will lose all his privileges and have nothing (no hockey, games or playdates) But then I don't want that for him, either. He feels so down on himself for these things as well, but I also can not let them go. His impulses are truly out of control. I don't want to go into what medication, treatment, etc. WE are treating and trying to find what works for us still. But during these episodes, I need to find better ways to handle it, and appropriate consequences. I try to pump him as much as I can. I admit lately I have been tired and my patience is gone. He is exhausting to me. I love him so much, but I am tired. I yelled and said a lot yesterday I feel bad about (nothing really disturbing, I don't spank etc). Just thinks I feel bad about. He told me he felt like he is always yelled at, and yesterday he was. An example is I was looking in my rear view mirror at a piece of fuzz in my hair or something. He says, "Stop it mom, stop trying to be cute. Your not pretty at all!" He gets very irritated easily by actions, people singing to the radio, even me shaking my foot if we are just sitting on the sofa, and will say "Stop it!" all the time. I know it is a part of all of this. He lost saying after to play in the arcade with his friends after his hockey game last night for being rude to me in the car. Appropriate? I don't know. Today he had to scrub the bathroom floor (it is a small bathroom). But every day he is doing something like this and getting a consequence. It is exhausting...I am so tired. Sorry for the novel. I just needed to get it out. I keep having his therapist (she is totally on the bandwagon for PANDAS, but also thinks we need to treat symptoms) telling me he has to be on ADHD meds. He tried a couple and they were not right. One the dose was wrong, the other he was allergic to. But he is already on two antibiotics and prozac. So many meds. THanks for listening.

     

    An exhausted Lisa

  8. Thanks, everyone! I am glad that others agree. I can not let those things go as they are things I feel very strongly about, respect, politeness, manners, etc. Yes, they flair and have times when they can not stick to the rules so to speak. But I want him to get the message loud and clear that these behaviors are not acceptable. We may keep battling them, but at least the message will be there. I like the idea of the timeouts and they don't get anything until they take it. That could work really great instead of threatening more time if he has to be escorted. Great idea! I think that could work well here with Ian. It is simple but also gives him some owner ship of following through with the punishment. I do hate taking away things all the time. Well, screens not so much. lol It is a work in progress. THanks so much for the support and I will look up some of those posts!

  9. I know our kids can not help some of the things that they do and especially during flairs it is even harder. But I am really struggling with a few behaviors of Ian's. He is going to be 10 in July. He really struggles with impulse control. The thing that is really bothering me and we need to find a way to drive home that he can do it, is swearing and saying things like "shut up" and calling us "idiot." etc. He is toughest with us. He argues to no end. We do not swear in our family as a rule. Not saying I have never said "damn" or that DH doesn't say "" once in a while, etc. But we do not speak that way at all. We are also very respectful and always say thank you , etc. I hear that Ian is very respectful with others, but for some reason he does not seem to feel the need with us. It is hard to discipline as you would for a normal. My daughter never acted in such a way. She knew it was wrong and learned to respect us. I think deep down he respects us, but the language needs to stop. We take things away, we have put him in time out (in the bathroom, he hates it, it seems to really offend him) for 5 minutes if he goes on his own, 10 if we have to escort him. I have take away screens, going to the park, etc. I understand that much of it is impulse control and that kids this age do test bad language, try to act cool with friends, etc. But I have a zero tolerance policy with it here. With the way our kids can be, and during flairs, does any one else have ideas or ways they have handled such things with any success? He sees a therapist and she tries to discuss this with him, too. While I understand he operates differently than other kids and can not help some of these things I need to drive it home that some things are not acceptable and even though he has PANDAS, he still has choices he needs to make and consequences if he makes the wrong ones. The issue is he will end up losing all his privileges, friends, playdates, etc. if I punish like I would for a regular.

     

    Very tired mama in MA.

    Lisa

     

  10. We have used it for Ian for a couple of years now. it has been a lifesaver. He is going on 10 and is about 65 pounds. He only needs about 1mg, can take even less. I use the lowest amount needed. I take a break from it once or twice a week when he has been very busy and doesn't seem to need it to fall asleep. But if he has a rough couple of nights, then I give it again. It can make him moody if he takes it too early. And too high of a dose is a disaster. I think for our kids it can take a really small dose, so it helps to experiment. I quarter the 3mg tablets and it works great. I also think if the dose is too high, the body realizes when it wears off and can tend to cause them to wake up. Ian used to wake up about 4 hours after taking it occasionally. I discovered lowering the dose helped that, but still helped him fall asleep. Just something to play with if you are finding them waking up, or having nightmares, etc. It make take a much lower dose than you think!

  11. We saw Ian's neurologist yesterday. He doesn't spend a lot of time on the PANDAS, but he doesn't discount and he listens to me on med changes and concerns. I think that is the best we can home for right now. (we see Dr. B for PANDAS). I feel he is a good supporting member of our doctor team and that is good enough for me right now. Ian was on Prozac for the past year. When he started taking a small dose it did seem to help the OCD a bit, and maybe mood. My husband and I also both mentioned to each other at the time that he seemed a bit more hyper and impulsive (he always has been a bit that way anyway). We upped the dose to treatment dose and it seemed to increase, so we thought anyway. His therapist thinks it is a good idea to stay on it to help the OCD. but the neurologist fully admits that some kids can "activate" if the dose is too high (he admitted he had no idea how it would affect PANDAS kids, but expected the reaction could be similar, regardless of dose). Ian's moods and oppositional behavior is no better and seems to have gotten worse over the past year. I can't say it is due to the prozac, but we are going to cycle off of it to see where we are. If we see NO change and the OCD increases, maybe it is worth going back on. Anyway, has anyone else had experience with SSRIs, and hyperness, real ADHD type behaviors, worse mood, etc? Ian isn't volatile, but very quick to snap is more how I would explain it. Argues with us, can't focus or sit still, etc. I do think some of it is either Ian, or the PANDAS, but am very curious if there is any change. I have heard some talk about activation on here before and I am wondering if the kids can even react on a low dose because Ian is only on 10mg (currently 7.5 as we are weaning down).

     

    Lisa

  12. I did email them to see what they recommend. At least if I test positive too I should be able to tell my own doctor what they suggest, she is good about doing what I ask usually. I will wait on Ian then until next week and see what Dr. B says in person. I don't think this is any big answer. It would just confirm the PANDAS is an issue if it is a coincidence with a flair. To be honest, I was about to give it up on it. Still going to push Dr. J to give me more clarification too, of course.

  13. Did they run in the office and then culture because it was negative or sent out for culture because they couldn't run it in the office? Idk, Lisa, that's quite the coincidence don't you think??? I mean if it was titers, I wouldn't think so cuz- who knows, but he swabbed positive? Was he positive 3 years ago too? When do you see Bouboulis again?

     

    EAMom- your question makes it sound like if you are asymptomatic, you are also a carrier. I did not think that was the case. I thought you could be asymptomatic and simply clear the infection on your own. I thought that's what happens with most healthy people over 12 yo. It's not that only little kids get strep, it's that by the time you are 12, most people do not get symptoms and clear the infection without ever knowing they had it.

    I believe they sent it out because he asked them to instead of doing the quick test that isn't that accurate. He was not positive 3 years ago, but I was. I was put on 2 rounds of something (I forget what now). I swabbed again and was cleared. I do think it is quite a coincidence. We see Dr. B next Friday, so the timing is actually good. The only thing Ian is on right now is Augmentin, 500mg twice a day. Well, besides prozac. We were waiting on the lyme route, so weren't adding anything more at this point with Dr. B. But now I am really questioning... It was an actual swab and not titers, so I assume that is really a positive infection, no? Even if no symptoms? If I am off base, please let me know. I figured why not swab since someone suggested it.

  14. We all got swabbed 3 years ago when this started, and cleared mine. I was positive then. No one else was. With the Dr. J and Lyme issues this week (tests coming back negative) it was suggested we all get swabbed again. SO I pushed DH to get swabbed at his physical on Monday. They called back and he is POSITIVE. The doc was going to call in 3 days of antibiotics. But I don't think that is enough. Can anyone here tell me what an adult should take to clear it? It will be helpful for me to know too since I am going to get swabbed on Friday, and in case it is positive the doctor will prescribe what i ask her to. I still have to send my fax to Dr. J about more clarification on the results, but this renews my hope. I was almost happy when he called me at lunch and said it was positive. Ian has been flaring lately. Duh. I do think there is still more at play here. But it also seems that we are still on the right path.

  15. Thank you everyone. The info is all so helpful. I will keep pushing and I will be putting together that fax. That sounds like a great way to handle it and ask him to look at these results again. I think I was just so overwhelmed today. I will send that fax tomorrow and hopefully get a call back. Something just doesn't fit, that is for sure. I will read all the responses again tomorrow when I am more awake. i will ask about the cyst form, too. good call! I really don't know what I would do without this place when I am having a meltdown. So thank you, again!

  16. Interesting. Thank you for all of the input. I am hoping to get a call back from Dr. J's office soon. I have no idea if he will talk to me personally or not but I would hope the nurses can at least directly as him my questions. We shall see. I admit I am frustrated by the experience so far, but we shall see. I will push to get answers from him and go from there. he told me in his office during the first visit that Ian has been exposed to Lyme. So yes this is confusing.

  17. The band 31 only had one plus sign, is that still enough? I did just call the office back and left a message stating I need more clarification. Also, can anyone tell me what a good combo for Lyme might be? I do think I will try to get in for the follow up sooner, but want to see if Dr. B would put him on a combo that would possibly help too. We did Omnicef with something for a month, but I don't recall what. My notes are all at home.

  18. Thanks, LLM. That is an idea. I will keep that in mind. I am also frustrated with Dr. J a tad. He was wonderful. But I would think after all the money I spent and all the blood he took, he could have called me to at least tell me his thoughts. Instead we are left with having to schedule a follow up in Sept. And if I didn't call to get my results, I would not have ever heard anything. I am not complaining about him, just frustrated with the situation as it seems he has help a lot of kids, but from the results, he clearly does not feel that Ian should be treated with anything at this point. Confusing.

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