Discussions By Condition: I cannot get a diagnosis.

multiple symptoms, multiple specialists but no-one looking at the big picture

Posted In: I cannot get a diagnosis. 16 Replies
  • Posted By: pegasus83
  • December 27, 2008
  • 05:13 AM

About 3 years ago my child suffered a serious depression which landed her in the hospital several times. She was tried on multiple combinations of medications, none of which really helped but did cause severe side effects. About 4 months later she started having GI problems, she was sick with a sore throat and a huge ulcer in her throat, and then developed an intermittant bad taste/small later diagnosed as partial sensory seizures. These have become quite obtrusive on her life as they are triggered by sneezing, coughing, laughing or sniffling etc etc. Add in anti-seizure meds to the mix. Now she has pancytopenia and has lost ~20 lbs in the last 6 months. She barely weighs 100 lbs now. She sees a psychiatrist, a taste/smell/seizure specialist, a gastroenterologist, a hematologist and a managed care PCP who graces her with her presence for maybe 45 seconds at a visit. This kid is only 23 yrs old and her health just keeps deteriorating and she was my healthiest kid. She's had tons of labs done but no etiology of any of these things can be explained. How can I get someone to look at all the pieces of the puzzle together as I believe it's all related?...maybe from all the drugs, maybe from a basement flood around that time which developed mold. I always bring up the idea of mold toxins with the doctors but they all blow me off and look at me like I am nuts. My biggest concern is that each specialist is only looking at their "thing". The answer is always more drugs, never more investigation as to the cause. How do you find someone to get to the root cause?
Does this constellation of symptoms make sense to anyone. We have just about given up on the medical profession.
Any idea or suggestions?

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16 Replies:

  • Is she seeing a neurologist? If so, are you happy with the neurologist? Could you find a better one? The depression plus seizures combo makes me wonder if the problem is largely neurological.Has she had any problems with bulimia?
    Seeking Help 12 Replies
    • December 27, 2008
    • 10:02 PM
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  • Okay, let's sort of back up here a little bit and let me ask you to provide some clarification on several comments made regarding your daughter's symptoms. When you say that about 3 years ago that she "suffered a severe depression," tell me what her symptoms were rather than what she had been diagnosed with if that's possible. Also, what specific issues led to the repeated hospitalization? Specifically what drugs were prescribed that you mention as multiple? What kind of GI problems is she having? When you state that she had a "huge ulcer" in her throat, can you tell me whether it was a peritonsillar abcess? If not, please indicate specifically what the clinician reported if possible. Was this partial seizure activity confirmed on EEG? I'm concerned about this issue because if the ulcer was actually a peritonsillar abcess, then experiencing a bad taste and smell is one of the hallmark characteristics of such an abcess and would certainly not constitute a partial sensory seizure. What type of anti-seizure medication was prescribed? If you have any laboratory data from the hematologist's report, I'd be interested in reviewing it if you'd care to make it available. Please simply realize, however, that although entirely anonymous, you are foregoing certain portions of privacy rights regarding medical records when you publish such information to an open forum. I'll be glad to take a look at the whole picture, but you'll need to provide far more detailed information and just so you're aware, I'm not real big on mold toxins as the culprit of syndromes that cultivate vague diagnoses. I'll be glad to discuss the issue in a very straight-forward manner, but I'm an old allopathic medical doctor without much regard at all for herbalists, alternative medicine, chiropractors or other charasmatic forms of healing. Please feel free to respond to my request for further information and we'll see what we can do to draw some more definitive conclusions regarding your daughter's health issues. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • December 28, 2008
    • 03:43 AM
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  • Thank you both for your replies. 1st of all she has not yet seen a neurologist. This was going to be my next suggestion. The taste/smell specialist is VERY expensive and much of what is done is not covered, and of course not helping her much. Everyone who looks at her makes the assumption she has an eating disorder. She hates being this this thin, but the seizures make everything taste horrible (like a musty moldy taste/smell), so she only eats when she's not having it. She has changed her diet and is eating very healthy when she does eat. The doctors who have questioned an eating d/o have all admitted that she has none of the outward signs other than being very underweight. Dr Cottle- thank you for probing deeper. I'll try to answer as best as I can, but 2005-2006 were a bit of a parental nightmare and some of it is just a big blur. I also appreciate the privacy warning and I will try to keep that in mind as I write.First of all-stong family hx of depression/suicide on paternal side. Signs of school phobia, anxiety noticed at a very young age. Started on an anti-depressant (Zoloft) during adolescence which was fine until ~2005 when a relationship ended and started a downward spiral. Sx were extreme apathy, sleeping all day-up all night, grades dropped, no social interaction-only TV and computer for activities, nightmares, some weight loss but nothing like now, severe anxiety about going out in public (might see the ex). For the next year more and mored meds were added and tried, most without sucess but with more sx-mainly hand tremors. Tried: Welbutrin, Remeron, Prozac, Lithium, Klonopin and an antipsychotic as well as few others which I can't recall but were just causing side effects and not really helpful. We ended up pulling her out of college in Nov 2006 on medical leave as she would have failed out otherwise. She was basically the same but now with suicidal ideations-no actual attempt which resulted in hospitalization #1. They tried some other meds but this is where it bocomes a blur. And they started ECT which I so regret. her once nearly photograhic memory is gone. At this point we were so desperate to have her back that we went along with what the docs said, although I always tried to get them to minimize the meds as she just did not seem to tolerate them. AT this point I do remember she was on 80mg of prozac and others and started having facial grimaces which looked like a bunny. Hospitalization #2...was suicidal and on 1:1 for more than a week. Complete change of meds to Cymbalta, klonopin, ambien, Seroquel as well as Toprol to control the tremors (maybe Remeron as well). She was in for several weeks. One more brief hospitalization due to something worrisone she said in day treatment. The following summer is when all the physical sx. began. she had what we thought was a mild gastroenteritis, but it never left. Diarrhea, bloating, occ constipation, and stomach discomfort. Colonoscopy was normal. She would also have frequent bouts of feeling like she was going to pass out-got weak, pale and sweaty etc with sudden onset of GI sx. At this point she stopped milk (which she loved and drank a lot of) and caffeine without improvement in the daily sx, but fewer episode of the sudden onset sx. She also got sick with a sore throat, which looked like a big canker sore on her throat (not in the tonsil area). Strep was negative. around this time the wierd taste/smell thing began as well, but it wasn't as often. It wasn't until about 6 months later we saw the Taste/Smell MD who diagnosed it as a rare type of partial sensory seizure. She had an EEG which was negative since she could not induce it at the time of the test. She hasn't had another one. She was put on Deprakote and given TCMS. The depakote helped some but interacted with some of her other meds raing her ammonia levels and causing her to be snowed. Enter holistic psychiatrist who after 5000$ in lab tests showed us that she had multiple food sensitivities, the MTHFR mutation and several SNPs in her cytochrome pathways in the liver which likely expalin why she was always hypersensitive to meds-she didn't metabolize well and they would build up.He reduced some of her psych med dosages and took her off remeron, which was good and wanted her off the depakote, but this cause conflict with the T/S doc. This was when the low blood counts were first noticed and why he was concerned. The low platelets cam 1st: 100-120's, the then the RBC's ~3.5, Hgb ~11, Hct ~33, WBCs have been ok or borderline low. Of note-Retic count low at 15640, haptoglobin low at 20, glucose and cholesterol always low. Amino acid levels revealed very low tryptophan (no shocker there), depressed cortisol levels at all times but MN. anyway it was the psych who referred her to a hematologist. He most recently theorizes that she is hemolyzing her cells, although at one of the first visits he said she wasn't. She is now on baclofen for the seizures, off depakote, on Cymbalta, Seroquel, Klonopin and tapering off toprol. She is seeing a new psych (in plan) who will hopefully help her reduce her meds further. He suggested adding lamictal as she tapers-may kill 2 birds with 1 stone. Of note-seizures increase with anxiety. Depression is improved, she's working and functioning somewhat, but miserable due to multiple health issues. I think that is as clear of a picture as I can paint, but if you have further questions I will try to help as best I can. I welcome an objective allopathic approach. My issues are more with the system. With managed care no physician can spend the time needed to look at a complex picture and when you go outside of managed care the cost is enormous. We have spent hundreds of thousands of dollars trying to help her...but we just need to work within the system because we can't afford the other anymore.Thank you so much for your time and interest.
    pegasus83 6 Replies
    • December 28, 2008
    • 03:05 PM
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  • I've read your presentation,Dr.Cottle's questions,and your reply.I have another question or two.First,regarding her anemia,can you get me the RBC indices?Second,have you looked for drug interactions that might be contributing to your nightmare?
    richard wayne2b 1232 Replies
    • December 29, 2008
    • 04:00 PM
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  • The depressed cortisol could indicate Addison's Disease.
    richard wayne2b 1232 Replies
    • December 29, 2008
    • 04:03 PM
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  • About 3 years ago my child suffered a serious depression which landed her in the hospital several times. She was tried on multiple combinations of medications, none of which really helped but did cause severe side effects. About 4 months later she started having GI problems, she was sick with a sore throat and a huge ulcer in her throat, and then developed an intermittant bad taste/small later diagnosed as partial sensory seizures. These have become quite obtrusive on her life as they are triggered by sneezing, coughing, laughing or sniffling etc etc. Add in anti-seizure meds to the mix. Now she has pancytopenia and has lost ~20 lbs in the last 6 months. She barely weighs 100 lbs now. She sees a psychiatrist, a taste/smell/seizure specialist, a gastroenterologist, a hematologist and a managed care PCP who graces her with her presence for maybe 45 seconds at a visit. This kid is only 23 yrs old and her health just keeps deteriorating and she was my healthiest kid. She's had tons of labs done but no etiology of any of these things can be explained. How can I get someone to look at all the pieces of the puzzle together as I believe it's all related?...maybe from all the drugs, maybe from a basement flood around that time which developed mold. I always bring up the idea of mold toxins with the doctors but they all blow me off and look at me like I am nuts. My biggest concern is that each specialist is only looking at their "thing". The answer is always more drugs, never more investigation as to the cause. How do you find someone to get to the root cause?Does this constellation of symptoms make sense to anyone. We have just about given up on the medical profession.Any idea or suggestions? just throwing this out there.,.....my cousin had anxiety and depression...and developed ulcers in her mouth and throat...as well as severe fatigue and weight loss...it took the docs about a month to figure out it was the anti depressants which were causing it.
    TheMommyJ 8 Replies
    • December 29, 2008
    • 06:25 PM
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  • Well, I must be getting older by the minute. I somehow lost track of this thread and have been searching for it relentlessly. Please accept my aplogies for any delay in responding. The next thing you know, the local police will be collecting me from the corner grocery store because I'm lost and confused. . . Okay, let's take a look. The haptoglobin was something I was particularly looking to obtain from the lab reports and I want to preface my opinions by sharing a few things about haptoglobin itself, due to your comments that the hematologist reversed an earlier comment about the absence of hemolysis. Realize that low levels of haptoglobin signify hemolysis, regardless of the cause, so although I don't know when the lab result you offer was performed, a level of 20 is without doubt, demonstrative of hemolysis. It is also important to understand that hemolysis can be either intravascular or extravascular in nature and some very unique characteristics exclusively present in either type are of clinical significance. In the case of intravascular hemolysis, red blood cells are being destroyed within the circulation, where hemoglobin is released into the plasma and subsequently bound by haptoglobin proteins. Because red blood cells also have a great deal of lactate dehydrogenase, the LDH is quite elevated on lab studies as well. So in this instance, we have low haptoglobin supported by elevated LDH to signify hemolysis. Urinalysis will also yield the existence of hemoglobin in this instance as well. Extravascular hemolysis, however, works a bit differently. The erythrocytes are initially culled from the circulation by macrophages at the spleen, liver and bone marrow. Haptoglobin will still bind at these sites so levels will be low but typically only when the hemolysis is chronic and since very little to none of the hemoglobin escapes into the bloodstream or appears in the urine, LDH levels may not be elevated at all and if so, only very mildly. Again, although I don't know when the lab tests for the results you kindly offered were initially performed, it may provide an answer as to why the hematologist reversed his earlier decision that hemolysis was not taking place. Does that make sense? Sorry to put you through the biochemistry refresher, but it helps to understand more precisely what is taking place with your daughter's symptoms. Incidentally, most cases of hemolysis are extravascular in nature, but both types can be induced by variable causes. With consideration to whether it's drug induced, high-dose penicillin and similar antibiotics, acetaminophen and anti-inflammatory drugs are all examples of commonly prescribed drugs that can cause a reaction which results in hemolytic anemia. Of particular note, Cymbalta has rarely reported some cases of hemolytic anemia and in general I had found this drug to be more tolerable in the elderly than in younger patients, who complained of greater suicidal ideation and sensory disturbances. In general, it sounds as though there has been a positive inflection regarding a reduction is depression symptoms and she is working, which is a good sign. One of my concerns is specifically identifying the cause of the hemolytic anemia, which again is definitely present because of the haptoglobin levels. They need to get this under control due to the fact that in some cases, continued insult can cause damage at the stem cell lines and we definitely don't want that kind of problem to occur. The other concern here, even though some reduction in medications has been noted, is polypharmacy. Too many drugs can sometimes collect as various clinicians try to tackle a myriad of symptoms, but now that she appears to be more stable, a constant review of her present medications would be in order to determine whether they are all necessary and to what extent and it sounds as though that's already being contemplated. I'm personally a bit luke-warm on the olfactory seizures and the use of a holistic psychiatrist is about like the need for an executive whose sole duty is scheduling the annual board meeting. I am a bit perplexed, however, by a comment wherein you stated that she had not had any more seizures since the inability to reproduce it on EEG, but later stated that the seizures increase with anxiety. Are these "seizures" still occurring or are we speaking of two different issues here? My impression here is that the constellation of symptoms might actually all represent manifestations of major clinical depression and since there is a strong family history, it could certainly represent a very major challenge, both emotionally and physcially. I think the hemolytic anemia is drug-induced at this point and the GI symptoms merely related to the somatic features of a worsening depression at the point in time it was being evaluated. The weight loss is certainly due to lack of appetite from the olfactory problem along with depression and there doesn't seem to be any symptoms of other pathology which would otherwise explain it. Also realize that the change of her prescriptions could have also introduced some of the other symptoms. Many of the drugs mentioned have reported significant GI disturbances and the fact that the tests turned up negative, would tend to support a possible medication side-effect. Overall, I think you're headed in the right direction and I do not believe at this point that there is a singluar exotic pathology which underlies all of her symptoms other than what is already known. The various negative test results would tend to support this contention. With careful continued reduction and stabilization in her medications to avoid polypharmacy that I think was likely contributory at some point, together with close monitoring of her depression to help with coping skills, etc., I think you'll find her present course continuing to improve. If her symptoms change or new ones appear, I'd be interested to know. J Cottle, MD
    JCottleMD 580 Replies
    • December 30, 2008
    • 03:39 AM
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  • Ok-so she went to the psychiatrist today and despite her telling him she wants to reduce her meds, not only because of the possible problems they are causing in her body, but because she does not want to be dependant on so many drugs...and what does he want to do?...add another drug-lamictal. She said maybe...if she can come off the cymbalta...or the seroquel. He says no, not now. The lamictal being an anti-convulsant might kill two birds with one stone, but the last thing she needs is another medication in her system. ARGH!!! How is a depressed, emotionally regressed 23 year old supposed to stand up to the medical establishment? She came back from that appt more depressed then ever. She just feels like she will never crawl out of the hole, because no-one will help her do it.:mad: Everytime I get involved, the doctors look at me like I am this meddling mother. ARGH!! Are there ANY doctors out there who will support patients cutting down on meds or are they all programmed by the pharmacy reps only to prescribe more and more-even when it causes harm???PS- her LDH was always WNL.
    pegasus83 6 Replies
    • January 7, 2009
    • 02:07 AM
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  • WOW,do I sense your frustration!It's true that doctors tend to add more meds than to subtract them,but I don't think it's because of the pharmaceutical industry.I think they just don't get the idea of Polypharmacy Syndrome.I agree that your daughter probably needs a med reduction.It doesn't matter what a doctor thinks of you,so tell them how you feel.A good doctor will hear what you're saying and do something about it.
    richard wayne2b 1232 Replies
    • January 8, 2009
    • 03:11 PM
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  • Hi Pegasus, Your daughter certainly has more than her share of problems. I'm not a doctor. You asked if there is something that can account for a whole lot of symtoms and characteristics and there is. A methylb12 and/or methylfolate deficiency could account for a number of things even if all the tests (IF antibodies, Hcy, uMMA, serum cobalamin) look "normal" that might be tried. 1) Depression, anxiety, psychosis can all be b12 deficiency.2) Personality changes and other neuropsychiatric manifestations.3) GI problems including frequent nausea and vomiting4) Many of the b12 problems are strongly hereditary.5) Anorexia6) Many blood problems, not limited to MCV and MCH, vitamin E deficiency associated with short red corpuscle life7) Hallucinations8) Altered taste and smell in general9) Taste and smell hallucinations specifically10) Hypersensitivites to foods, medicines, chemicals, smells, touch11) Alteration of any and all senses, touch, hearing, smell, taste, vision, balance, position of extremeties12) Enough symtoms to divide amongst 10 specialists - divide and conquer doesn't work for it, diagnosis' don't prove out predictive of what works, lot's of puzzled doctors are very common I can't possibly say that this is the problem though it might be a problem. The severity at such a young age would be unusual but not unheard of. The one positive advantage of such a hypothesis is that it can be tested very easily with a 3 month trial of the right supplements (brand and type make all the difference) for under $30. Good luck.
    Freddd 3576 Replies
    • January 8, 2009
    • 07:44 PM
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  • I doubt if the following is the case but are throwing it out there due to a couple of things you mentioned eg sore throats, low cortisol, extreme apathy and sleeping a lot, a neuro issue and her seeing a gastro specialist.. she doesnt have irritable bowel syndrome does she???? It isnt uncommon for children with 'chronic fatigue immunity dysfunction syndrome' to be diagnosed as having school phobia are you sure she was phobic about school and just not wanting to go due to exhaustion??? CFIDS can cause all kinds of symptoms and sometimes depression does go hand in hand with it too. A third of those (including myself) with CFIDS have low cortisol and most of us have IBS. Neuro issues are common in CFIDS thou i have never heard about the precise one you mentioned so just dont know if your daughter could have this issue going on. Mold thou can be an issue for some with CFIDS. (one with CFIDS put out a book called "mold warriors" ?about his story about how mold caused his issue). I do also want to say that the CFIDS in my case has in fact caused issues with my taste and smell at times..causing me altered sensations (I went and had brain scans due to it.. i was smelling things which werent there and tasting things I shouldnt have been tasting). I do have a couple of suggestions.. if it was in fact CFIDS/ME (which im doubting but several things have made me think it's possible) apparently 95% of us show up non specific findings on an EEG. These findings if they are there, i found out myself that doctors often put them down to possible drug reactions so then just dismiss the abnormalities (as they seek out the abnormalities they are familiar with with certain illnesses). I suggest to get hold of the radiologists EEG report and see if any nonspecific abnormal finding was found in your daughters case. Also see how she tests in a romberg test? (90% of ones with CFIDS/ME are said to test positive in that neuro test). (look up that test yourself on wikipedia or somewhere... and you can give your daughter that test yourself.. not telling her what could happen and see what occurs). If either of these abnormalites are found..suspect possible CFIDS. Depression is known for causing HIGHER cortisol...
    taniaaust1 2267 Replies
    • January 9, 2009
    • 01:42 PM
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  • I doubt if the following is the case but are throwing it out there due to a couple of things you mentioned eg sore throats, low cortisol, extreme apathy and sleeping a lot, a neuro issue and her seeing a gastro specialist.. she doesnt have irritable bowel syndrome does she???? It isnt uncommon for children with 'chronic fatigue immunity dysfunction syndrome' to be diagnosed as having school phobia are you sure she was phobic about school and just not wanting to go due to exhaustion??? CFIDS can cause all kinds of symptoms and sometimes depression does go hand in hand with it too. A third of those (including myself) with CFIDS have low cortisol and most of us have IBS. Neuro issues are common in CFIDS thou i have never heard about the precise one you mentioned so just dont know if your daughter could have this issue going on. Mold thou can be an issue for some with CFIDS. (one with CFIDS put out a book called "mold warriors" ?about his story about how mold caused his issue). I do also want to say that the CFIDS in my case has in fact caused issues with my taste and smell at times..causing me altered sensations (I went and had brain scans due to it.. i was smelling things which werent there and tasting things I shouldnt have been tasting). I do have a couple of suggestions.. if it was in fact CFIDS/ME (which im doubting but several things have made me think it's possible) apparently 95% of us show up non specific findings on an EEG. These findings if they are there, i found out myself that doctors often put them down to possible drug reactions so then just dismiss the abnormalities (as they seek out the abnormalities they are familiar with with certain illnesses). I suggest to get hold of the radiologists EEG report and see if any nonspecific abnormal finding was found in your daughters case. Also see how she tests in a romberg test? (90% of ones with CFIDS/ME are said to test positive in that neuro test). (look up that test yourself on wikipedia or somewhere... and you can give your daughter that test yourself.. not telling her what could happen and see what occurs). If either of these abnormalites are found..suspect possible CFIDS. Depression is known for causing HIGHER cortisol... Depression, IBS, altered taste and smell, smelling things that are no present and a couple of hundred more symptoms and all the symptoms of CFIDS/ME/FMS are deficiency symptoms of the two natural b12s and cofactors.
    Freddd 3576 Replies
    • January 9, 2009
    • 03:29 PM
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  • Fredd-Thanks for your comments. She was initially diagnosed with a B-12 deficiency and was getting B12 shots for a while. Her most recent B-12 level was normal so she hasn't had them for a while. The holistic psyche put her on that and Cerefolin (she didn't take it-was sick of all the pills at that time). She does have the MTHFR mutation (heterozygote I believe). I will bring this up with the hematologist again. He has scheduled her for a bone marrow biopsy next monday since her counts have not improved despite coming off three of her meds recently. Her most recent B-12 was 1695 (actually high) and Folate was 23.5-well above the >5.4 normal. Tania- While I'm not sure CFIDS was there in her far past, it certainly may be a factor now. Autoimmune things run in the family. Thanks to you both. I certianly aprreciate any and all input. sorry I didn't respond sooner, I didn't get any email notifications this time that I had gotten responses.
    pegasus83 6 Replies
    • January 18, 2009
    • 03:27 PM
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  • pegasus83: please avoid the Lamictal at all costs. It can cause Liver damage, which sounds to me like she would develop given her experience with the GI problems. I was prescribed it and after a year became very ill...docs all thought I had Irritable Bowel Syn. They never thought about it being caused by the med. Took another year to finally collapse and land in the ER when they finally did a liver check. ABNORMAL. Thats all I needed to know and I stopped taking it in Sept 08. After 3 weeks I was almost back to normal!! And now I feel pretty darn goo and liver tests are NORMAL. Please stay away from the Lamictal!~~!
    Anonymous 42789 Replies
    • January 18, 2009
    • 06:37 PM
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  • As far as the lamictal is concerned, I don't think you should worry too much. It's a very mild drug that has showed a lot of promise in treating seizures as well as being used off-label as a mood stabilizer. I suffer from bi-polar disorder and I have found lamictal to be a life-saver. Yes, it should help her stay more emotionally stable but no pill will ever fix anyone. After trying a motley of different prescriptions, I now take adderall, lamictal, and klonopin; down from the 5 or 6 medications I was taking several months ago. If she was or is taking an SSRI, I would suggest taking her off of it. The only suicidal thoughts I have ever had ( along with 2 attempts) were on SSRIs and I simply do not trust them. I am no doctor but I am speaking from experience. I would strongly suggest cutting out all prescriptions that are not absolutely necessary, especially if she has a sensitivity to medication in general. A PPI might help with some of the gastro-intestinal symptoms. Please make sure that the lamictal dose is slowly increased because a large increase in dosage can cause a rather severe rash which can be dangerous. Your gonna be looking for a target dose between 150-300mg of lamictal depending on how she responds to it. I have found after 6 years of swapping between anti-depressants(zombie pills) that lamictal has helped me far more than anything else. I also suffer from lack of appetite and dropped from 230 to 171 in about 6 months. Malnutrition is definately an issue so see if she can eat meal bars and take vitamins to counter-balance her lack of appetite. I eat special k meal bars, protein bars, and fiber bars as well as a men's health vitamin. Also, after cutting out soda and switching to spring water(sensitivity to chlorine so no tap water for me) I do not seem to get the sugar crash that adds to the fatigue and depression. No, she will never be "normal" according to psychological standards but by stabilizing her medications, changing her diet, and going to therapy; it's definately possible for her to lead a productive life and function relatively well in society. I hope you the best and good luck on finding your answers. I just hope that you will not take her off of the lamictal unless she has bad side effects as it may turn out to be one of the best medications she could take for her depression and seizures. Don't let those doctors dope her up and turn her into a zombie with no emotion. I'd rather hurt a little than feel nothing at all. Just my personal opinion.
    Anonymous 42789 Replies
    • October 28, 2010
    • 00:12 AM
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  • About 3 years ago my child suffered a serious depression which landed her in the hospital several times. She was tried on multiple combinations of medications, none of which really helped but did cause severe side effects. About 4 months later she started having GI problems, she was sick with a sore throat and a huge ulcer in her throat, and then developed an intermittant bad taste/small later diagnosed as partial sensory seizures. These have become quite obtrusive on her life as they are triggered by sneezing, coughing, laughing or sniffling etc etc. Add in anti-seizure meds to the mix. Now she has pancytopenia and has lost ~20 lbs in the last 6 months. She barely weighs 100 lbs now. She sees a psychiatrist, a taste/smell/seizure specialist, a gastroenterologist, a hematologist and a managed care PCP who graces her with her presence for maybe 45 seconds at a visit. This kid is only 23 yrs old and her health just keeps deteriorating and she was my healthiest kid. She's had tons of labs done but no etiology of any of these things can be explained. How can I get someone to look at all the pieces of the puzzle together as I believe it's all related?...maybe from all the drugs, maybe from a basement flood around that time which developed mold. I always bring up the idea of mold toxins with the doctors but they all blow me off and look at me like I am nuts. My biggest concern is that each specialist is only looking at their "thing". The answer is always more drugs, never more investigation as to the cause. How do you find someone to get to the root cause?Does this constellation of symptoms make sense to anyone. We have just about given up on the medical profession.Any idea or suggestions?Sounds to me like she needs to be off of all those meds and started over. They don't even know how they work most of the time. Ginny pigs they call them in psychiatric hospitals. If one doesn't work give them another. If one causes side affects give them more to cover that one up. The mold sounds like a likely cause. Inflimation in the sinuses may be some of the cause of the olfactory issues. She needs a ct scan to see what is causing these problems.
    watchman926 1 Replies Flag this Response
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