Iowadawn
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Posts posted by Iowadawn
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First, will she TAKE the med.
Second, do you know how she will react to the med? I bring these two points up only because we have had paradoxical effects to so many psych meds, and taking meds has been a HUGE issue with an upset child. Anyway you can test it out if it is a new drug? My 2 cents from experience. Dawn
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I am glad to see that change. That statement made me shutter when it was originally put up on her website, mainly because I thought it could be used against the PANS/PANDAS cause. This is much more accurate.
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We were warned, and it was very true, all h*** broke loose when we started treating the lyme. We started out PANDAS and are still treating lyme. Just added Flagyl back because ds14 is in a safe facilty to do it.
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We consulted with Dr.T in September and saw him in person in October and then ran the courtagen tests. We have been rattling him for the report, to which he promises....how do we get him to follow through? He was promising the report well before his mother took her final spiral. My son is in now in residential treatment...his input is important. What have you had to do to get what you need from him. I need ideas, as we have tried. Dawn
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DS12, cannot shake nausea. Any ideas?
Thx
Is it nausea or does it include an element of fear of throwing up in public? We struggled with this with our dd15 (at the time) before we knew we were dealing with PANDAS.
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DS12, cannot shake nausea. Any ideas?
Thx
Is it nausea or does it include an element of fear of throwing up in public? We struggled with this with our dd15 (at the time) before we knew we were dealing with PANDAS.
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I have an email into Dr. T. My son has gone bonkers whenever we have used Flagyl or GSE. Wondering if this complicated the lyme treatment.
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Enterobacter cloacae--OK, my PANDAS buddies. Found post T & A culture on ds13. Any experience with this bug? I haven't seen it mentioned. Hmmm. Dawn
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Ditto MomwithOCDson.
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I think we had resulys within 3 weeks.
Thanks! It has been so hard to rattle Dr. T, even though he said to bug him if we didn't have the report within a few days! Will try again tomorrow.
Did you results show anything significant? Dawn
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Hi all-
For those who have had the Courtagen mtDNA test through Dr. T---How long did it take for the results to get to his office? Dawn
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Tomorrow is my son's 17th birthday and I'm feeling emotional, and more than anything, a profound sense of gratitude. He'll be celebrating tomorrow a very different person than when I first posted to this group 3 years ago. Though I rarely post anymore, and I'm not sure how many reading now remember me, I often think back to that lonely night in a Maryland hotel room 3 years ago when yet a second PANDAS expert told me "this doesn't look like classic PANDAS". I turned my computer on completely devastated and defeated, to say goodbye to this group, and was met with warriors, urging me not to give up, trust my gut, keep seeking help. Pretty soon I had strangers on the phone offerring their support, and a hugely compassionate doctor who offerred to look at my son's case free of charge. The people here redefined compassion for me. You are what kept me moving, what kept me sane.
Without you, we would not have had a PANS diagnosis. We would not have followed through with a PETscan that eventually showed inflammation in the brain. We would not have found MycoP,had appropriate antibiotic treatment, or gotten IVIG. We would not have gotten through the relapse that came after the IVIG. He would likely be homebound, or lingering in a residential treatment center, if your voices had not pushed me forward.
Instead, at age 17, he is a junior in high school who went from thinking he'd end up homeless on the street. to actually believing he will graduate and go to college. He read a novel and understood it. He's actually getting all A's and B's right now. He's driving, bought his own car, and has a part time job. He's hardworking and sincere. He has a good head on his shoulders for a teenager. He's made a few friends. He went to his first highschool dance. He asked a girl out (she said no - but still...) He's off all but one psych med ( he was on 3), he's off antibiotics, he's out of therapy. He hasn't had a terror/rage attack in over 2 years. There are no more holes in the wall and no more broken glass. He no longer suffers the embarrassment of enuresis. He's not paralyzed because he doesn't know "what's happening?" with the day. His physical tics are gone and his verbal ones are few and far between - more like the occassional funny nonsense blurt out that everyone just laughs at. His little brother is writing an essay this week in school on how his brother is his hero.
It's not perfect by any means. This is not a "oh - he's 100% completely symptom free" story. He still takes an SSRI, and loads of supplements.He gets headaches, and he naps after school. He still has an IEP with accomodations. He still struggles with some ocd rituals, anxiety, depression, low self esteem and on rare occassions a panic attack. These symtpoms still get worse when he is sick (though his illnesses seem much less severe these days)and I still catch myself (as does he) panicking when it happens. And on top of that he can just be a pissy teenager at times. But after years of being "gone", he is starting to find himself and think about who he is beyond PANDAS. It's an amazing thing to witness and reflect on.
So I offer my immense gratitude to all of you that were there for us, and all of you who are still here for each other. You will be in my mind as we are celebrating tomorrow because without you we wouldn't be celebrating the same things. Keep fighting for your kids. No matter what it costs, no matter who tells you you should stop, or how long it takes, or where it leads you. You may feel alone, or like you don't know what you are doing, but you do. You know your kiddo is sick, and you know you will get them well. It will happen.
Your post gives me hope. We have been around quite a while, too. I remember you. Thank you for posting. Dawn
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Do ask for upgraded boarding since your an has special needs. When we flew last with my daughter, I go a note form the pediatrician, but the airline didn't want to see it, I felt bettter having something in hand. We saw dr. t 2weeks ago too. I agree with the above poster. He's a but quirky, definitely a big brain! He took lots of time with us and we were the only ones there, except for the phone conference he had prior to us. My kids were comfortable and he did examine my daughter with a quick neuro exam, same as dr. Latimer did years ago. We saw dr, Bouboulis many times and I don't think he ever examined her, other than a quick look up her nose once.
I asked his doctor psychologist for a note today---she quick wrote one! Thanks.
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So we added in a half dose of Bactrim last week to her abx regime of Omnicef and Biaxin. She made it to school Monday for half day, yesterday for 38 minutes, and completely refused to go today. This wouldn't be such a major deal except she has already missed most of the year because her EoE was flaring. We were finally getting that under control and this was supposed to be her first week of full days. Now this....
She says she is scared to go into the classroom but can't explain why. this all sounds so familiar.....
I'm really feeling like I can't do this again. I have not had a break since we had to pull her out in 1/11 for the year; I spent the next school year dealing with my cancer and subsequent infection-which i still have-and now all this. She made it to the first three days of school in August and that was it. I know I am being really selfish but I literally feel like I am drowning. The only place I have really been in the last two years is to the grocery store and church. Church is a battle every Sunday. Oh let's not forget all the Doctor's appts.
I am not being proactive with own health. I want to go the gym again, I want to volunteer again, I want to have lunch with friends, I want to live instead of exist.
Boy--sounds all too familiar. Evan made the first two days and then crashed and was hospitalized. He is going to school now--not full days, but has settled into working most of the time in smaller sped environment. The fear of the classroom--ugh--offering my prayers of support, 'cuz when they refuse it is next to impossible. Dawn
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I had another thought. New Jersey traffic is notoriously bad. Just hope your husband and son are prepared for what could be a very long drive from the airport. Perhaps knowing this in advance will help them plan a bit better.
The appt is on Saturday a.m. at 9 a.m. He will be staying in Keyport with friends---idea of the length of time for a drive to Ramsey on a Saturday? He would like to take Evan to see the Statue of Liberty and quick see the ocean at Sandy Hook. Flight is to come in at 2 on Friday. Appt at 9 and fly out at 5 Sat from Newark Airport. Doable for you Easterners. Wade has driven in NY traffic once!
Dawn
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Dawn -
We will keep you in our prayers! From our experience Dr. T has been wonderful to work with. Hoping and praying that he can help unravel the puzzle even further for you all.
How is your son??
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Thanks for the feedback. I so wish I could go. Since we deal with impulsive/aggressive behavior when he gets anxious we felt it prudent to send my husband with him instead of me. He has never been on a plane. He has meds----. He is getting excited about the flight. I think he will actually enjoy it!!
Dawn
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Oh boy, for those who have followed our journey, here is some more. Ds13 and husband have a 7 a.m. Flight to NJ on Friday to see Dr. T. We have had an initial phone consult and will be getting results, etc. of blood work he had ordered. We wanted (though affording it is another thing) to say Dr. T physically saw our son to get him on board with his care. We have our own court issues.
If you only feel comfortable sharing via PM, can all you Dr. T patients give me an idea about what to expect. Will he give him a good looking over? Our son is a complicated one. Can't wait for the Sat. Appt.
Please say a prayer for the plane trip and the days this week leading up to it. PDD traits here. Dawn
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A quick history, Pandas diagnosis for my 9 year old two years ago. 8 IVIGS, numerous combos of antibiotics, tested for everything, no co-infections, Igenex Lyme tests, negative twice. we are currently trying yeast next. No improvement yet. So we have been treating the OCD with prozac and have seen some improvement. He is still on Augmentin twice a day, that seems to keep tics away. Other than that, his therapist, a child psychologist, did some evals and just diagnosed him with ADHD. He is so hyper and can not focus at all. So now he is on Prozac, augmentin, difflucan and they want us to try ADHD medication. I am at the end here. We see Dr. B again at the beginning of Dec. But there isn't anything much else to do. School is hard because he can not focus. We are trying some behavior plans at home, we will see how that goes. But yep, at the end of my rope. DH is against more medication, but what do I do? I am not sure it is PANDAS any more, since we have tried everything and gotten nowhere with that. Yet antibiotics keep the tics away. So something is going on, just no idea what and he gets no where near baseline. I didn't want to post here because I don't want to bring others down. I don't want to take away hope for anyone. I guess maybe we just don't know what we are dealing with yet.....My last resort seems to be a local Lyme doctor, but why? The tests results showed negative. So I am not sure what that will get me. Maybe homeopathy next. Now sure. Anwyay, I did want to update. I am at wits end.
Hi Lisa, Just wondering if your son still has his tonsils and adenoids? My sons T & A was a big turning point for him.
Lisa
He does still have them, but he doesn't ever really get sick either. He is never strep positive. I don't know if I would just yank the out just because, unless I saw him always testing positive or being sick a lot. I am trying to weight treatments and reasons for treatments. It has not been suggested by Dr. B at all. So I don't know that it would be a viable option for us right now.
At the IOCDF conf. Dr. L. said she is culturing a lot of antibiotic resistant staph from PANDAS tonsils. Also, both Dr. L. and Dr. T. appear to be in the camp of recommending T/A b4 IVIG is tried.
We can't wait to get results of multiple labs drawn for Dr. T. My husband is flying out with ds13 to see him in person net Sat. We had a consult on the phone a month ago. i bet he says T & A as one thing to do. Dawn
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It has been a verrry long day. Court, ds13 discharged from hospital, blood draw, settled back home......I haven't read the entire thread. The topic caught my eye. CI here with ds13. responded to vision therapy. One daughter had two eye muscle surgeries as a baby and toddler. strabismus. another daughter has some eye muscle problems, but eye glasses do the trick for her. I happened to notice that one of the identified genes with polymorphisms was a gene connected to eye muscles (something along that line) and/or drooping eye lids. I do not feel like going back to track it down right now. Just thought I would toss that out. I am not sure if there is any connection. Again, maybe I missed it in the thread. Dawn
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Tpotter could you pm me the full name of the Dr in Stephensville. Thanks
PM me, too! Dawn
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Ceftin & azith here, too. Boy, I was on some ceftin here recently---I really had stomach issues. Don't take that stuff anywhere near late evening hours, even with food--violently ill (vomiting). It happened more than once, and I noticed even in the daytime I felt nauseous at times.
Leaving On a Jet Plane....(With a Raging Child)
in PANS / PANDAS (Lyme included)
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Also, have you considered Vistaril instead of Benedryl. Both are old antihistamines. Vistaril needs an Rx, but it has wayyyy better anti-anxiety properties than Benedryl along with the normal antihistamine properties. It doesn't interfere with other meds either. Worth a check.