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Dedee

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  1. Like
    Dedee got a reaction from philamom in New to forum- DS 9 has Lyme, severe OCD question   
    There is no rhyme or reason as to what intrusive thoughts get stuck in the heads of these children. I will tell you that it is not unusual for children to have intrusive sexual thoughts. There isn't a lot of discussion about it because many people are embarressed about it. When we have had our kids in therapy or in CBT they always ask about this and tell us it is very common. I don't think I have any advice for you except to seek professional help from someone who is experienced in this type of thing with kids. I would continue Lyme treatment as I am sure this is the root cause and make sure to use detox. I'm so sorry you are experiencing this. It seems it's always the ones that are shy about those things that end up with this type of issue. Sort of like their worst nightmare playing over and over in their head. OCD is like that. Ugg......what a terrible thing for a child to have to live with. Very unfair.
     
    Dedee
  2. Like
    Dedee got a reaction from 3boysmom in At the risk that you may all think me a zealot.....   
    My 18 year old son flaired when he was 6. He is now picking out colleges and has his pick due to his good grades and excellent ACT score. I haven't had to do one thing for him. He is complety independent and motivated. He wants to get his Masters in Molecular Biology so he can do medical research some day. I am so completely proud of this young man who at the age of 6 could not go outside, eat off of plates, or stop washing his hands because of his extreme fear of contamination (among other things). There are no outward signs of OCD, tics, or anxiety now. He is a wonderful, smart, sweet young man. Now, I'm working on his two younger siblings. I know I will get there with them too. The Lord is good.
     
    Dedee
  3. Like
    Dedee got a reaction from rowingmom in At the risk that you may all think me a zealot.....   
    My 18 year old son flaired when he was 6. He is now picking out colleges and has his pick due to his good grades and excellent ACT score. I haven't had to do one thing for him. He is complety independent and motivated. He wants to get his Masters in Molecular Biology so he can do medical research some day. I am so completely proud of this young man who at the age of 6 could not go outside, eat off of plates, or stop washing his hands because of his extreme fear of contamination (among other things). There are no outward signs of OCD, tics, or anxiety now. He is a wonderful, smart, sweet young man. Now, I'm working on his two younger siblings. I know I will get there with them too. The Lord is good.
     
    Dedee
  4. Like
    Dedee got a reaction from LNN in At the risk that you may all think me a zealot.....   
    My 18 year old son flaired when he was 6. He is now picking out colleges and has his pick due to his good grades and excellent ACT score. I haven't had to do one thing for him. He is complety independent and motivated. He wants to get his Masters in Molecular Biology so he can do medical research some day. I am so completely proud of this young man who at the age of 6 could not go outside, eat off of plates, or stop washing his hands because of his extreme fear of contamination (among other things). There are no outward signs of OCD, tics, or anxiety now. He is a wonderful, smart, sweet young man. Now, I'm working on his two younger siblings. I know I will get there with them too. The Lord is good.
     
    Dedee
  5. Like
    Dedee got a reaction from MissionMama in At the risk that you may all think me a zealot.....   
    My 18 year old son flaired when he was 6. He is now picking out colleges and has his pick due to his good grades and excellent ACT score. I haven't had to do one thing for him. He is complety independent and motivated. He wants to get his Masters in Molecular Biology so he can do medical research some day. I am so completely proud of this young man who at the age of 6 could not go outside, eat off of plates, or stop washing his hands because of his extreme fear of contamination (among other things). There are no outward signs of OCD, tics, or anxiety now. He is a wonderful, smart, sweet young man. Now, I'm working on his two younger siblings. I know I will get there with them too. The Lord is good.
     
    Dedee
  6. Like
    Dedee got a reaction from Gweny in DS with severe motor tics   
    The amoxicillin probably isn't strong enough and definitely isn't for long enough. An average of 30 days is what he needs to get things calmed down. I agree with the Augmentin or Biaxin. You need to immediately get an appointment with a PANDAS specialist. Even if your physician says he has read about or seen PANDAS he still doesn't know how to treat it (obviously). Also, try some ibuprofen to see if it helps with symptoms. Sometimes it will help decrease inflammation and give temporary relief. Educate yourself and read as much as you can about PANDAS. Do not depend on your physician to do the right thing for treatment. You will be disappointed.
     
    Dedee
  7. Like
    Dedee got a reaction from EAMom in Conference   
    It was an awesome conference! Had some great conversations with some of the researchers and speakers. It was also a very emotional and bonding experience. My husband got to go with me and I think one of the best things he brought home was a validation that our daughter does indeed have lyme. There was never any doubt from me but I think he has always held back some reservations until after the Lyme presentation. Not anymore. It was good for him to hear some of the things he has always heard from me also come from other Mom's and from the speakers. I am so glad we went.
     
    Dedee
  8. Like
    Dedee got a reaction from otksmama in Conference   
    It was an awesome conference! Had some great conversations with some of the researchers and speakers. It was also a very emotional and bonding experience. My husband got to go with me and I think one of the best things he brought home was a validation that our daughter does indeed have lyme. There was never any doubt from me but I think he has always held back some reservations until after the Lyme presentation. Not anymore. It was good for him to hear some of the things he has always heard from me also come from other Mom's and from the speakers. I am so glad we went.
     
    Dedee
  9. Like
    Dedee got a reaction from rowingmom in Conference   
    It was an awesome conference! Had some great conversations with some of the researchers and speakers. It was also a very emotional and bonding experience. My husband got to go with me and I think one of the best things he brought home was a validation that our daughter does indeed have lyme. There was never any doubt from me but I think he has always held back some reservations until after the Lyme presentation. Not anymore. It was good for him to hear some of the things he has always heard from me also come from other Mom's and from the speakers. I am so glad we went.
     
    Dedee
  10. Like
    Dedee got a reaction from LNN in Family explosion   
    I agree with the behavior modification. We had to do the three week intensive treatment at USF to get my daughter to stop attacking and hitting me.
     
    On another note, I will tell you this, we did the 23andme and started working with methylation. Worked for months trying to fix this or that mutation. I was being ever so patient with the methylation pathway and frankly getting no where fast. I peaked in on the support group for Dr. Amy Yasko from time to time but I only take a part of that to heart as it really is a lot of money put in to her supplements. However, I finally did do a urine and hair test that she offers and found out that my daughter dumps lithium and has very low lithium levels in her hair (about the only way to test lithium levels). Without appropriate lithium you can not transport B12 into the cells in addition to other things. I'm not talking about prescription dose lithium. I mean very small sub clinical doses of lithium that you would have normally. With my daughter's mutations she has a genetic pre-disposition to naturally excrete lithium while she has a heavy bacterial load (lyme). Since we have been working on this, her defiance, anger and violence has started to disappear. Not completely gone but I would say about 80%. We are going very very slowly because going too fast causes detox and a worsening of symptoms. There were some other interesting findings on the urine that we are working on. All I can tell you is this is the best place my daughter has been in three years. I can't say she won't regress next week, but the last month has been wonderful. I think some of the things Yasko does is helpful. Just have to be careful not to fall into the money pit.
     
    Dedee
  11. Like
    Dedee got a reaction from tu4four in Family explosion   
    I agree with the behavior modification. We had to do the three week intensive treatment at USF to get my daughter to stop attacking and hitting me.
     
    On another note, I will tell you this, we did the 23andme and started working with methylation. Worked for months trying to fix this or that mutation. I was being ever so patient with the methylation pathway and frankly getting no where fast. I peaked in on the support group for Dr. Amy Yasko from time to time but I only take a part of that to heart as it really is a lot of money put in to her supplements. However, I finally did do a urine and hair test that she offers and found out that my daughter dumps lithium and has very low lithium levels in her hair (about the only way to test lithium levels). Without appropriate lithium you can not transport B12 into the cells in addition to other things. I'm not talking about prescription dose lithium. I mean very small sub clinical doses of lithium that you would have normally. With my daughter's mutations she has a genetic pre-disposition to naturally excrete lithium while she has a heavy bacterial load (lyme). Since we have been working on this, her defiance, anger and violence has started to disappear. Not completely gone but I would say about 80%. We are going very very slowly because going too fast causes detox and a worsening of symptoms. There were some other interesting findings on the urine that we are working on. All I can tell you is this is the best place my daughter has been in three years. I can't say she won't regress next week, but the last month has been wonderful. I think some of the things Yasko does is helpful. Just have to be careful not to fall into the money pit.
     
    Dedee
  12. Like
    Dedee got a reaction from rowingmom in Family explosion   
    I agree with the behavior modification. We had to do the three week intensive treatment at USF to get my daughter to stop attacking and hitting me.
     
    On another note, I will tell you this, we did the 23andme and started working with methylation. Worked for months trying to fix this or that mutation. I was being ever so patient with the methylation pathway and frankly getting no where fast. I peaked in on the support group for Dr. Amy Yasko from time to time but I only take a part of that to heart as it really is a lot of money put in to her supplements. However, I finally did do a urine and hair test that she offers and found out that my daughter dumps lithium and has very low lithium levels in her hair (about the only way to test lithium levels). Without appropriate lithium you can not transport B12 into the cells in addition to other things. I'm not talking about prescription dose lithium. I mean very small sub clinical doses of lithium that you would have normally. With my daughter's mutations she has a genetic pre-disposition to naturally excrete lithium while she has a heavy bacterial load (lyme). Since we have been working on this, her defiance, anger and violence has started to disappear. Not completely gone but I would say about 80%. We are going very very slowly because going too fast causes detox and a worsening of symptoms. There were some other interesting findings on the urine that we are working on. All I can tell you is this is the best place my daughter has been in three years. I can't say she won't regress next week, but the last month has been wonderful. I think some of the things Yasko does is helpful. Just have to be careful not to fall into the money pit.
     
    Dedee
  13. Like
    Dedee got a reaction from cobygurl in 23andMe - Can't Download!   
    Here are some instructions:
     
    1. Log into 23andMe and go to the tab that allows you to download raw data (top left on your screen). Download onto your hard drive.

     
    2. Go to http://geneticgenie.org/ and follow the instructions for running your data thru the app. Currently, the app is free but there is a request for a $10 donation. There are two profiles you can run - the methylation profile and the detox profile. The methylation profile is most popular and most researched but it’s good to have both. If you can only do one, do methylation for now.
     
    3. Print the reports. I do a copy onto a word file and save to my computer.
     
    4. You can use other apps that that will give similiar analysis. One is http://www.mthfr.net or, www.mthfrsupport.com.

    Hope this helps.
     
    Dedee
  14. Like
    Dedee got a reaction from otksmama in Methylation: to test or not to test?   
    You have gotten great advice already. I can only add my experience. We originally got the MTHFR test and tried to treat it alone. We had about a one month honeymoon period and then things regressed to where they were originally. After that we did the 23andme. It has taken much research on my part to learn about each individual mutation. The ones I thought would be the problem for my daughter were actually not the ones that have caused the major issues. I have learned more from some additional urine and hair testing. I think we are finally on our way to healing. I am hesitant to say this in the event that things should turn bad again. It takes more than just testing. It takes research, and trial and error. I was on the edge of putting my daughter on an SSRI. Still haven't completely ruled it out. But hopefully if things continue as they are we will see some futher improvement. Methylation can be very helpful but just keep in mind that it's a journey not a destination. Things are ever evolving in this world and it can be frustrating at times. Be patient. Best of luck.
     
    Dedee
  15. Like
    Dedee got a reaction from EAMom in Could it be PANDAS?   
    My daughter also had frequent pneumonia with asthmatic symptoms and my son had "asthma" for many years before they both had labs that showed positive IgG and IgM antibodies for Mycoplasma P. At the time of the positive antibodies neither were symptomatic. Amazingly after my son's antibodies went back to normal his "asthma" has never returned. My daughter barely has any wheezing and coughing anymore, only when she is sick. You should definately have get a full infectious workup. I would suggest an LLMD. You may have to give up the idea of finding someone close to home. Not many of us are that lucky. Our PANDAS doctor is 12 hours away and our LLMD is 5 hours away. We are lucky that our LLMD will do phone consults with us now and only requires us to come in once a year. The first year we came in every 6 months, but we have been there for a while now so this year she said we could change to once a year since she knows us to be compliant and forthcoming. Not that I always do everything she says exactly, but if I do anything different I always confess. Find a good LLMD right away and get some testing. You need some answers.
     
    Dedee
  16. Like
    Dedee got a reaction from EAMom in Could it be PANDAS?   
    I'm sorry, but any doctor who refuses to do lab work under these curcumstances is not aggressive enough in my opinion. Yes I understand he says he has treated PANDAS before but that does not make him a specialist by any stretch of the imagination. You need to go to a true PANS specialist or an LLMD. Stop chasing your tail and get real informed opinions. This type physician make me so angry. You need cold hard proof, not just his opinion. We need in depth lab work looking for infectious triggers and immune response. Please post the area you are from and hopefully someone can tell you a REAL specialist close by. You may very well need to travel to get a good physician, but it is well worth it. I am sorry you are having such a hard time.
     
    Dedee
  17. Like
    Dedee got a reaction from Teri in Timing of bloodwork?   
    You can go ahead and test. The titers will stay elevated for weeks. For your Mycoplasma, you must get both a IgG and IgM or you really will not know what you are dealing with. The IgG will only tell you that she has had a past infection. You already know that. You need to know if there is current infection which is what the IgM shows.
     
    As far as the physician is concerned, throw him out with the bath water. Those who don't believe in PANDAS / PANS aren't worthy of your time at this point. There won't be any convincing them. PANDAS / PANS is well documented with evidence based medicine and providers with their head in the sand aren't worth your effort. You need to seek a PANDAS specialist or a LLMD immediately. You say your child has OCDish rituals and does things till they feel right. This is very classic. The therapist at the PANDAS clinic calls this "Just Right" OCD and evidently it's very common. The child really can't explain exactly why they do something but they just know that they have to do it to feel "just right". OCD is very hard to identify in kids and there are probably many things going on that you aren't aware of that fit into that category.
     
    You are on getting a good start with getting the labs but you need to get an appointment with someone who will know what to do with the results. You can go to the pandasnetwork.org site and get a list of providers. Best of luck.
     
    Dedee
  18. Like
    Dedee got a reaction from mama2alex in Could it be PANDAS?   
    I'm sorry, but any doctor who refuses to do lab work under these curcumstances is not aggressive enough in my opinion. Yes I understand he says he has treated PANDAS before but that does not make him a specialist by any stretch of the imagination. You need to go to a true PANS specialist or an LLMD. Stop chasing your tail and get real informed opinions. This type physician make me so angry. You need cold hard proof, not just his opinion. We need in depth lab work looking for infectious triggers and immune response. Please post the area you are from and hopefully someone can tell you a REAL specialist close by. You may very well need to travel to get a good physician, but it is well worth it. I am sorry you are having such a hard time.
     
    Dedee
  19. Like
    Dedee got a reaction from Thesuzie in Antibiotics   
    Your physician is afraid because he / she is not PANDAS / PANS literate. If he was educated on proper treatment he would understand that your daughters brain is under attack and not hesitate to do what ever is necessary to protect it from further insult. The rages may or may not be caused by the antibiotic. It could be the course of PANDAS playing out or a herx, which is the release of toxins as the bacteria die off. You need to continue antibiotics and treat in the event of a herx. Do a search on this forum for herx and you will find some good remedies. Make sure your daughter is getting plenty of fluids to flush any toxins. If things don't settle down after a week or two you may consider trying a different antibiotic. You are right to assume that 10 days is not enough. If your physician is not helping, find someone who will. You are going to need a PANDAS / PANS specialist. Go ahead and make an appointment. You can find some names on the pandasnetwork.org page. This is not something you will be able to manage without an educated physician. As a general rule, things get worse with each infection untill you can get a manageable plan. Best of luck.
     
    Dedee
  20. Like
    Dedee got a reaction from cobbiemommy in Little victories   
    Yah! Happy Dance! Glad you had some happy family time! It's wonderful to see them doing "normal" kid stuff isn't it? So happy for you....
     
    Dedee
  21. Like
    Dedee got a reaction from nicklemama in Could it be PANDAS?   
    I would suggest that you educate yourself as much as possible about PANDAS / PANS and not rely on any physician to tell you what is wrong with your child. There are precious few physicians out there who truly understand it. Many may profess they do, but they are mistaken. Thankfully, there are more PANDAS / PANS specialist now than when we first started dealing with this with my oldest son 12 years ago. I recommend you find a specialist and make an appointment right away. Most likely you will have to travel and there will probably be a wait, so go ahead and make your appointment now. You can get lots of great information on the pandasnetwork.org website along with some physician recommendations.
     
    This forum is a great place to come for information. You can also do searches for information. There is no reason for your child to suffer. If there are already signs of OCD and anxiety along with the tics, I would be concerned. This probably will not resolve completly without assistance. You may see intermittent lessening of symtpoms, but eventually this will rear it's ugly head and you will wish you had jumped on it while it was manageable. I'm not trying to scare you but rather give you the wisdom of many who have been there, and done that. Please keep us posted on your progress. Best of luck.
     
    Dedee
  22. Like
    Dedee got a reaction from EAMom in Rheumatologist visit and confused   
    Does't sound like enough to me either. Really, only a treatment dose for 10days? What happened to a good ole shot of Pen anyway? Glad you finally got a diagnosis, but I'm thinking you need a physician who is a little more aggressive with treatment.
     
    Dedee
  23. Like
    Dedee got a reaction from JAG10 in Not over: part 2   
    The first thing that jumps out at me is the low GABA and high Glutamate. This is a big issue for many PANS children and we have seen good results by working on getting this back in balance with our daughter. The following is an explanation on GABA / Glutamate balance and it's importance. Sorry it is so long. I did a cut and paste and didn't want to leave out any helpful parts:
     
    "Glutamate is the main excitatory neurotransmitter in the body. It is essential for learning and short and long-term memory. Glutamate is also the precursor to our primary inhibitory or calming neurotransmitter, GABA. GABA damps the propagation of sounds so that a distinction can be made between the onset of sound and a background noise. Many other physiologic processes require a balance between glutamate and GABA, which is usually easy to achieve as glutamate, glutamine, alpha-ketoglutarate, and GABA can be interconverted via the enzymes depicted above.
    Genomic defects, viral illness, and heavy metals will compromise this balance, leading to excess glutamate, insufficient GABA, excitotoxicity, and eventual neuron loss. Viral infection (individuals with Methyl Cycle defects cannot defend well against viral infection) can lead to antibodies against the vitamin B6 dependent enzyme glutamate decarboxylase (GAD), blocking GABA production (this is felt to occur in the pancreas in kids with juvenile onset diabetes). Aluminum poisons this enzyme as well. Excessive alpha-ketoglutarate generated due to the CBS up regulation can be converted into glutamate, but in the presence of lead and aluminum, the glutamate so created cannot be converted into GABA, glutamine, or back to alpha-ketoglutarate. The result is glutamate-GABA imbalance, agitated behavior, and eventually nerve loss.
    Low GABA leads to impaired speech, anxiety, aggressive behavior, poor socialization, poor eye contact, nystagmus, and constipation. Glutamate excess does the same and also wastes glutathione and increases levels of TNF-alpha, an inflammatory mediator that can produce heart cell dysfunction and gut inflammation.
    You can restore glutamate-GABA balance by:
    1. Addressing CBS up regulation/BHMT down regulations to decrease alpha-ketoglutarate production.
    2. Decreasing intake of food precursors of glutamate
    3. Supplementing with GABA
    4. Copper inhibits conversion of glutamate to GABA by glutamate decarboxylase so avoid copper excess, or better stated, an imbalance between copper and zinc.
    5. Calcium is involved in glutamate toxicity, so supplement with magnesium to keep calcium in check."
     
    Hope this was helpful - Dedee
  24. Like
    Dedee got a reaction from Pilbara in NEW AND TRYING TO UNDERSTAND THE TICS   
    Your post says it's best to just start with your son's tics. Is there anything else going on? This is important. Are there other symptoms? Anxiety, Frequent urination, Seperation anxiety, unusually clingy, very irritable, moody, explosive, signs of OCD, any other behavior changes? If there is something else associated with the tics you can most likely rule out TS. That leads more in the direction of an infectious trigger. You would want to look into finding a doctor who has experience treating PANS. You may find that things would clear pretty rapidly with antibiotics. Many PANS kids will only experience tics and the behavior changes come later. It is absolutely worth looking into. JMHO.
     
    Dedee
  25. Like
    Dedee got a reaction from peglem in Close to being diagnosed Bipolar   
    Another thing you need to remember is the amount of time your son is on the antibiotics. He should be on a high dose antibiotic for at least one month. Since you say you were supposed to test for Myco p, I would hope to see him on something that would cover Mycoplasma. Augmentin is very good coverage for strep but by itself does not cover Mycoplasma. So if you are dealing with Mycoplasma you would want to look at something like Biaxin, or Zithromax. I would highly suggest following through with the Myco titers. Many PANS symptoms are linked to Mycoplasma. Once you know what the infectious trigger is you can get an appropriate game plan. Many PANS children end up on a combination of antibiotics so that may be something you consider. You need to see a specialist ASAP but in the meantime high dose antibiotics on a continuous basis are a must.
     
    Dedee
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