kos_mom
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Posts posted by kos_mom
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Iowadawn,
Do you feel comfortable naming the neuropsych residential program? I ask because every doctor I went to for a long time was convinced DD's issues were purely psychiatric and DH wanted her put in a program. I was convinced issues had medical origin (ultimately proved right!) and so as an accommodation to both views looked hard for a psych residential program that would really do a thorough job on the medical side. I couldn't find anything except the Pavillion at McLean that is largely a two week diagnostic program. There is also the Retreat at Sheppard Pratt but it looked like I would have to push constantly to get the medical side looked at.
If you aren't comfortable could you PM me--would like the name of a place just in case. Thanks.
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I'd say yes--a child can have symptoms without the emotional part, depending on how one defines it. My DD would sometimes get a pounding heart that came on so suddenly she'd drop straight to her knees on a wood floor (ouch!). There would be a trigger of some kind, usually being late in getting ready to go some place.
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The copy I got went from page to 20 to page 24 skipping the pages in between. At the bottom of page 20 a list begins of "Infectious and Infection-related Diseases--Proven"--I don't have the page after that and it is possible (likely?) Sydenham's on that list. On page 24 there is a list of "Miscellaneous Uses--Unproven" (PANDAS is on that list, Sydenham's isn't and the list is complete), followed by "Neuroimmunologic Disorders--Unproven." Theat list does not appear complete (ie, it must run over to page 25, which I don't have)because it ends with conditions beginning with "L."
If Sydenham's was covered before by United, I do not think there is a change--the policy update for IVIG coverage appears to have been issued to revise only the change with respect to IVIG treatment for PANDAS as noted on page 20 of the update.
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KK,
I am sorry--I cannot hold back on this one. I know nothing about Dr. Leckman, but there really appears to be reason for high suspicion of PANDAS. Rejecting PANS because of no OCD seems far too narrow, and, in any case, as others have pointed out, OCD is not needed for PANDAS dx.
Your DH reminds me so much of mine--the doctor has spoken, why are you questioning? Three years ago we got a psychiatric dx for my DD, now 19, at one of the top hospitals in the country and as she has gotten progressively worse my DH has said how can you think you know better than they? His solution would be to put her in a psych facility for an extended period. (One of his favorite phrases is "Let's face it" with the implication I refuse to face the fact of her psychological problems.
But I have nonetheless persisted. In the last two weeks she has been dx'ed as PANDAS by both Dr. T and Dr. L (the one in MD). And DD has another serious neurological issue Dr. L is now investigating (with agreement from Dr. T and a neurosurgeon) that every doctor we've seen over the past year and a half hinted was psychosomatic (and I was chided for feeding into it). Believe me, no psychiatric facility in the country will investigate or even contemplate medical reasons for a person's behavior--I've checked as I was trying to find a way to accommodate my DH's views while satisfying my own very strong suspicion of a serious medical problem. It's as though none of these places have ever heard of a neuropschiatric illness. But I digress.
I really hope Dr. Leckman didn't suggest that your parenting skills were at the root of your DS's behavior issues, though your post seems to imply that. The fact is that almost no parent is prepared to deal with these sudden behavior changes owing to PANDAS/PANS. Books can be helpful in learning how to deal with these behaviors, but that does not mean one can attribute the behaviors to poor parenting.
I really think you need a second opinion--this is done for medical conditions all the time and this is no different. You are seeing your DS regress after a few days off abx. Honestly, you owe it to him to see if in fact a pill will make him better (okay--not just a pill, obviously more complicated than that). Dr. T is great and you will not go wrong consulting with him.
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Mayzoo,
That is an amazing article, especially considering it was written in 1999--wish I'd had a pediatrician reading that back then when my DS was at his worst! And the TSH hyperthyroid piece really surprised me. I only heard of this yesterday from Dr. T, who said kids often get declining TSH hyperthyroid with Pandas--my DD's (19) TSH went from 2.0 in February to 0.9 in mid-July when she tested positive for strep to 0.4 (below normal range) the last week of August. The thalamus, which controls the pituitary and from there the thyroid is right next to the basal ganglia.
Last year DS's (then 21) doctor found a goiter right after he had strep (preceded by OCD). He sent him to an endocrinologist who suspected his low TSH was Hashimoto's then confirmed it four months later because the levels were going up. On his check over summer, the levels were up but still definitely in good normal range--if he had Hashimoto's doctor thinks they would have gone above normal range by that time. So he has rescinded Hashimoto's dx in favor of a rather nonspecific thyroiditis dx. Now I think it's all Pandas related and that DD has same phenomenon. Endo had never heard of Pandas of course.
KO's Mom
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They gave me a copy of an August 2012 United Healthcare "Medical Policy Update Bulletin" that a patient brought in this morning. Under IVIG it reads, "Revised coverage rationale: added language to indicate Pandas is unproven." (Page 20.) On page 24 it lists "Miscellaneoud Uses--Unproven." Among various other things, PANDAS is listed. (Page 24.) The effective date is given as November 1, 2012. I know the current lists puts IVIG for PANDAS as proven.
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I too am surprised they dx'ed MRSA--that's serious and beyond what most urgent care places would take care of. If they thought that I am surprised they didn't immediately refer you to his PCP if during working hours or to the the ER if outside working hours. Once I took my DS to urgent care on a Saturday to get a strep test and they said they wouldn't treat for high fever and vomiting. So we had to go to the ER to find out he had strep.
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Saw Dr. L with DD, 19. She agrees complicated, but is convinced of Pandas. She had high ASO in July and I got Dr. H at Gtown to prescibe antibiotics first week of August--pupils very dilated, very photophobic. Started myoclonic jerk thing while he was exaamining her. Dr. T saw her last week of August and saw chorieform movements. Good news is that clindamycine seems to have ended pupil dilation and chorieform movements and her OCD (never terribly bad)and agoraphobia have greatly subsided, but jerks not yet under control. Not sure if that is Pandas or something else. Pandas not straightforward--DD seems to have cycled from sinus infection, to strep, to myco p, to sinus,to strep to myco p so many times in the last five years (and all under-treated--I got all her past labs and suspicious myco p was never investigated further or treated), that many of her issues--panic atacks, anxiety, OCD, rages had just become part of the permanent landscape. But we are finally seeing some breakthroughs with the long-term clindamycine so Dr. L quite sure of dx--also her brother is classic pandas.
DS, 22, has been scheduled for IVIG and we've had insurance probelms doing it at Dr. L's office because of problem with pharmacy benefits. It should be covered under major medical with United, though, so office is now trying to schedule both of them to be done at same time in G'town. The office told me they had learned today that United will stop covering IVIG for Pandas after November 1.
Rest of DD's issues require a lot more testing--she has spasticity in her legs with extreme hyperreflexia, making it very difficult to walk and climb stairs. Neurosurgeon suggested possibly MS or Lyme or some other infection. Neither Dr. L nor Dr. T think MS or Lyme a real possibility, though of course both will tested for. DD to have spinal tap, but because of leg spasticity it will have to be done under sedation (good for her!). Dr. L is also ordering a bunch more blood tests and genetic testing--possible mitochondrial DNA issue as brain scan showing signs suggestive of metabolic disorder (which the radiologist missed--thanks to Dr. T for picking up).
I feel we are really on a good track, first with Dr. T, who was a God send, and now with Dr. L, who is local for us. We still have a long way to go with DD's medical mystery and DS's OCD (may consider USF for him after IVIG), but I feel I can relax a bit now that DD is in Dr. L's hands. Such a relief after over three years of taking her from doctor to doctor, who until the hyperfexia showed up kept telling me everything was psychiatric and would chide me for feeding into her psychosomatacism by taking her to yet another doctor. She even ended up twice in a psych ward--I feel awful about that!
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I can speak only from my experience and it's probably sadly outdated. My DS, now 22, had his first exacerbation at 6.5 following chicken pox--constant erasing and rewriting because it wasn't perfect. That lasted several months. When he was 7 he had strep treated with conventional 10 days of antibiotics and there followed a couple of months where he repeated one nonsense word over and over. Then at 7.5 he had strep again, treated conventionally, and had a huge cascade of tics, OCD that lingered on for at least a year and a half. At 9.5, another strep and another cascade. We found a ped who put him on daily abx (amoxicillin and probably not strong enough), and did a year and half of ERP starting at 11, when NIH dx'ed him but thought him too chronic for their study. He didn't really recover until he was 13.5. Even then, I now suspect stuff lingered on, but they can become quite skilled at hiding OCD.
So my jaundiced view is that in the scheme of Pandas, still having symptoms after four months is par for the course. But I am not sure how relevant it is if you've been very aggressively treated the exacerbation when it happened. Sadly, my experience in that is limited.
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And she has been on clindamycine for strep. Darn! We lucked into a Wednesday appointment with Dr. L, so we'll see what she says. I am guessing she'll say spinal tap if only for the MS angle, particularly as DD has been so responsive to med used in MS patients, although it's possible she'll go for less intrusive nerve conduction studies first.
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I've had an Oct 2 appt with Dr. L, who is local for us, since June for my DD for possible PANDAS. She has since has spiralled down alarmingly with a progressive movement disorder and in the last ten days Dr. T and a neurosurgeon have indicated concern and need to act sooner rather than later. Since then I've desparately sought a local neurologist who could see her as quickly as possible. I called Dr. L's office this morning to check on an insurance issue with DS and for the second time in two week threw myself on their mercy to move her up on the waiting list. Miraculously, there is an opening this Wednesday. Much thanks to whoever cancelled--perhaps someone on this board.
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LLM,
Just looked at book on Amazon--looks interesting and I'll order. That said, the one thing I've never wanted her to have was lyme as am not sure after dealing with all kinds of medical/psych probelms with DD over last five years I have the fortitude to wade into s dx laden with such controversy. But there have been more than several times in the past when I've thought I just can't deal with one more thing and of course after a good night's sleep or two I do.
I do feel we need to do the spinal tap to rule out or in other dxes like MS, reactivated varicella , CMV etc. DD is showing no signs of squeamishness about a spinal tap (ignorance is bliss!) but it definitely is a test one only wants to do once. That said, she has become very de-motivated on finding out what's going on--the neurosurgeon gave her a prescription a week ago for baclofen, which is used to treat spasticity in MS patients. What an amazing medication! I gave it to her the first night and the next morning and she was able to walk two hours that day. My sister, who is an RN and has a PhD in public health, points out that this reaction is not a very good sign. Also, it does not help pain much. But it's made DD functional enough that she's not quite seeing the point that it's important to find a cause for her symptoms.
The somataform thing is interesting--her pediatrician (as well as her therapist) clearly thought something along those lines and, afraid of feeding somataform thoughts, reluctantly referred DD to orthopedist three times over nine months(I questioned whether this was the right referral the third time). I definitely saw ortho's eyes rolling as well--he refused to so much as suggest advil for pain. After nine months the orthopedist finally prescribed physical therapy but refused her a TENS machine prescription which at the physical therapist brought her a few hours of relief. Then DD ended up in hospital with pneumonia. When they saw how badly she walked, they brought in neurology. The team decided to do a spinal MRI based on not how badly she walked, her pain complaints, or anything else like that, but rather because her reflexes were "brisk." The spinal MRI came back fine and the attending suggested it was perhaps somataform. Have gotten many somataform suggestions with DD--doctors run one set of tests, see nothing wrong, and suggest somataform because she also has anxiety. But all the literature is clear--this is a dx of exclusion and should not be given until everything else has been ruled out. This is not real life though, and I now very politely say I am willing to accept a somataform dx, but only after everything else has been excluded. Since that is what the literature says the doctors have no choice but to agree I am absolutely right.
DD's pain continued so I took her to a physiatrist, who asked to see the MRI. He spotted an abnormality on the thoracic spine and called the hospital radiologists to make them change the report. That got us to a neurosurgeon to review the results (two and a half months later). Her brisk reflexes were now hypreflexive and the neurosurgeon pronounced himself puzzled, referring her for a brain scan,a neurology consult, and another neurosurgeon specialized in the spine. And so we ended up two weeks ago with Dr. T and and the second neurosurgeon. The S word is no longer mentioned--Dr. T, no doubt informed by his own LeRoy experience, says he is now beginning to doubt there really is such a thing as a somataform disorder. Again, it is the reflexes that have been key--her hyperreflexia is now to the point where no one can miss it. When they hit her knee with the hammer at her most recent exames she literally jumped up in her seat. Apparently, there is no way to fake a reflex response or psychogenically induce it, so somehow the somataform disorder dx has finally after a year and a half fallen by the wayside.
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DD 19, in addition to anxiwty, agoraphobia and mild OCD/phobias has been experiencing increasing leg, knee, hip, back pain for a year and a half. Many suggestions from medical personnel that could be a somataform disorder, but I kept pursuing possible medical angle using whatever hook I could. Finally, two weeks ago Dr. T said absolutely certain that something organic going on and, further, he was concerned. So grateful for that after all the dismissive doctors. Then a neurosurgeon she saw later that weak said problem not in her spine, "more global" than that. DD has what he calls spasticity and hyperreflexia--she can hardly walk a block and sometimes can barely get up stairs--this has gotten progressively much worse in last six months. Like Dr. T, neurosurgeon suggested possible MS (but brain scans inconsistent with that dx so probably not), lyme, or some other infection--maybe viral. Both recommended spinal tap.
While I am desperately hunting down competent neurologist to do spinal tap (we have Dr. l appt on October 2, but if an infection is going on don't want to wait that long to test), I am wondering about the lyme. DD has tested negatie for lyme three times--I believe one was Igenex. I know many on this board still go with lyme based on clinical picture. If one can test for lyme in cerebral spinal fluid (CSF) through a spinal tap, why do I not hear of anyone on this board testing for lyme that way? It would seem to be a more definitive test for lyme than a blood test. Or are the CSF lyme tests subject to all the same controversy as the blood tests?
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Am an ER veteran. Have been there at least 50 times in the last five years or so. Very interesting what excites them and what doesn't. My DD had a seizure and dropped straight down on a concrete driveway and was unconscious for ten minutes. She couldn't speak or walk for hours and they were very blase about everything once it was established there was no bleeding into the brain. They offered no advice on what happened or on follow up care. (ERs are terrible places to actually get good information or ask the right questions in the abbreviated time you ae given to talk to medical people.) But a 103 fever with seizures another time got instant action even though it all took place on a gurney in the hallway as the ER was so packed.
Also interesting what excites third parties on the scene. A garden variety seizure and they call an ambulance (definitely not necessary for someone with seizure disorder). Also, poison control will almost always tell you to go to the ER even when it's not really necessary and they really force the issue by asking which ER you are going to. Then they call the ER to expect you. If you say you're not sure the person in question is willing to go to the ER, they will ask if they can call the ambulance for you. At this point, you of course feel obliged to go. I never go to the ER without a big stack of reading and crossword/sudoku--sounds cold but believe me you can be there for hours and there is a paucity of magazines.
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Agree with 1tiredmama abount minimization. Sometimes I feel I have done nothing but define normal down for the last 14 years or so. In the last four months we have had one six day hospitalization, one week-long stay in the psych ward, nine trips to the emergency room--one in an ambulance, a couple of seizures that I just waited out, one T and A, and at least 25 doctor/therapist visits. And my kids are 19 and 22! Perhaps three times in all this a medical person has asked me how I am holding up under whatever the crisis de jour is. All I've been able to say is that this is just one on of so many things. Very kind of them to ask; the underlying message is that the person, a medical professional I emphasize, could see how that just one thing could be very stressful for a parent. And we are dealing with multiples of that one thing every week--believe me other parents don't go through this and even the most sympathetic can have only the smallest insight into what we live every day.
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DD had all her sinuses completely blocked when she was 14--long course of abx and steroids did nothing. She had surgery to remove her adenoids (kicking self for not having tonsils done at same time) and do turbinate reduction. CAT scan two months later to show great success of surgery revealed all sinuses completely blocked again. Another few months of abx and steroids with no improvement. Finally she had sinuplasty. They do it with a balloon now and the surgery and recovery are quite easy. She's had a couple of sinus infections since then, but nothing abx couldn't clear up. Highly recommend balloon sinuplasty--don't hesitate if it's recommended.
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Re: leg pain weakness. DD, now 19, started complaining about this last year. Ped kept referring her to orthopedist, who kept blowing it off. A year and a half later, it has gotten to the point where she can hardly walk a block and sometimes can barely get up the stairs. She now has what doctors refer to as spasticity and hyperreflexia. While it is very MS like and an MS medication she got last week, Baclofen, has been amazingly effective, her brain scan doesn't square with that dx. Dr. T and a neurosurgeon think it could be lyme (she's tested negative several times) or some other infection, possibly viral. She needs a spinal tap to investigate further--in process of trying to locate neuro in our area who knows what he/she is doing to perform. We feel entrapped in a medical mystery at this point. Please keep your eye on this leg issue; it has become quite incapicitating for DD.
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Insurance a problem for us through Dr. L's office--we were to have home IVIG last week but still are having insurance tussles.
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Re: video games. DD has epilepsy and on doctor's orders when she does a sleep deprived EEG she is to stay up all night playing video games. The point, the doctor has said, is to really "fry the brain," making it more likely seizsure activity will be caught on the EEG.
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Thenmama,
Just to let you know some of the infections Dr. T recommended be tested for in the spinal tap included lyme, West Nile, and chicken pox (DD, now 19, had a light case when she was 4). As long as they are doing a spinal tap I may ask that they look for babesia and bartonella as well--better to over test on a spinal tap as one really doesn't want to have to do it twice. DD had an echo two years ago because of syncope episodes--they found nothing and she didn't fail the tilt table so POTS was rules out at the time. On the plus side, that means she's already a patient of the cardiologist and we could get in without much of a wait.
Ko's mom
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We saw Dr. T this week and he suggested an echocardiogram to rule out endocarditis, well known complication of rheumatic fever and Sydenham's so perhaps not a stretch for PANDAS as well. He also suggested a spinal tap to look for various sources of infection--not sure this recommendation was strictly related to the possible heart problem as DD has stuff going in her spine as well that could be infection related. We're seeing the neurosurgeon spinal specialist today to see if we can get any headway on that aspect. The echo and cardiologist are scheduled for next week.
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Dawn,
So sorry about your son. Is there anyway to keep him out of the system for medical reasons? You really don't want him in the state's hands--it is highly unlikely they would do the appropriate medical care, which he clearly needs. Have you contacted a lawyer? It is unfortunate but untreated PANDAS can result in adolescents making very bad choices because in the words Dr. L told me, "They are very scared." She has a PANDAS patient, now in her 20's, whose parents sent her to wilderness camp and a residential treatment center, but she ended up running away and getting pregnant when she was 18 or so. Finally, Dr. L found PANDAS and she is slowly putting her life back together.
Ko's Mom
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Lauren,
I don't know if this is useful, but my DS was once put on Tenex and absolutely everything was slow like that. The only other bit I can offer is that while I am not typically allergic, when my siblings and I went to clear out my parent's house by the sea I got an allergic reaction to something--probably some kind of mold. The whole week I was there I felt my mind was moving through molasses and was doing everything in slow motion.
Ko's Mom
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Hayley,
There is only so much doctor going one can do. In your place, if I were to choose just one adjunctive therapy I'd go with the tried and true: exposure response prevention (ERP).
Norah
Amantadine
in PANS / PANDAS (Lyme included)
Posted
PowPow,
Thanks for the ention of Rogers. My DS is slated to get IVIG and I've been thinking of getting him into program to deal with remaining OCD. I had thought of USF, but at 22 he's really too old for me to go with him and I was wondering how to arrange housing if he went. Rogers might be a better way to go.