Discussions By Condition: I cannot get a diagnosis.

8-month old, Alkaline Phosphatase 3,800 and seizures

Posted In: I cannot get a diagnosis. 19 Replies
  • Posted By: Scully0007
  • November 17, 2008
  • 03:27 AM

My daughter had a seizure on Election Day (11/04/08) 4-days before she turned 8-months old. She DID NOT have a fever. Her doctor instructed me to take her to the ER which I did. They did a CT scan, blood work, and a urinalysis. The CT scan was normal, the urinalysis turned up a possible UTI, and her blood work came back with EXTREMELY ELEVATED Alkaline Phophatase of 3,222. Suspecting a bad test it was checked and came back 3,481 an hour and a half later. Her other liver enzymes were normal except AST (SGOT) which was a little high at 41. Her WBC was too numerous to count, phosphorus (5.9), calcium (10.4), Platelet (529), ABS Lymphs (8.7) and ABS MONO (0.9) were all a little high. Her Creatinine (0.3), Glucose (70), HCT (32.5), and MCH (26) were all a little low.

ER doc said her ALP was somewhat of a mystery and followed up by x-raying her entire body looking for a broken bone. Nothing abnormal in her bone survey.

We followed up with her pediatrictian 2-days later and her ALP was 3,834. Other abnormal results were Hemoglobin (L-11.2), Hematocrit (L-32.3), Platelets (H-460), Neutrophils (L-20), Creatinine (H-37), Albumin, Serum (H-4.5), LDH (H-301), and Creatine Kinase, Total, Serum (H-190).

She had another seizure 6-days after her first on 11/10/08 and this time the ER didn't do anything but check her vitals because they had already run the tests less than a week prior. (Also no fever)

On 11/11/08 we had an appointment with a neurologist who is the sixth doctor we're talked to that has never seen ALP levels this high before. He put her on an anti-seizure medication, Keppra and scheduled an EEG for 11/24.

The only thing I came up with on the Internet that shared elevated ALP with seizures was celiac disease but I couldn't find anything to indicate they would be that high. That I know of there is no family history of celiac disease.

Any ideas, please help. It's just frustrating that no one can give me any answers and my little girl is so precious to me. Other than these two symptoms she is so happy and seems to be developing well.

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19 Replies:

  • They were probably thinking about this: http://www.bchealthguide.org/kbase/nord/nord1168.htm Also, try here: http://www.nlm.nih.gov/medlineplus/ency/article/000344.htm It says: "Occasionally, rickets may also occur in children who have disorders of the liver, or cannot convert vitamin D to its active form."
    aquila 1263 Replies
    • November 17, 2008
    • 05:37 PM
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  • I just realized today that it can't be Celiac because her fractionated ALP showed that 0 was from her instestines. We still don't have anymore answers but I think of more questions to ask the doctor's everyday. On the 24th she's having an EEG and on December 9th a Pediatric Endocrinologist. I can't wait for answers, waiting is driving me crazy, this is all I can think about.
    Scully0007 13 Replies
    • November 19, 2008
    • 02:57 AM
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  • I just realized today that it can't be Celiac because her fractionated ALP showed that 0 was from her instestines. We still don't have anymore answers but I think of more questions to ask the doctor's everyday. On the 24th she's having an EEG and on December 9th a Pediatric Endocrinologist. I can't wait for answers, waiting is driving me crazy, this is all I can think about. First of all I am sorry for all you are going through. I hope you have answers soon. Was your daughter taking any medications prior to her first episode? Antibiotics by chance? Anything? When did she start taking solid foods and what did you start with feeding her solids? How long prior to her first episode? Is she breastfed or bottle fed? How frequent are her stools and what consistancy? Any breathing problems or history of sinus/congestion? Any history of fevers or ear infections? Sorry for all the questions, but if you could answer them it may be helpful. DOM
    acuann 3080 Replies
    • November 19, 2008
    • 05:16 AM
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  • I came across a reference to lead poisoning and e-coli. Had you given her aspirn? Here's more:http://books.google.com/books?id=RZN-mD3bSNQC&pg=PA12&lpg=PA12&dq=EXTREMELY+ELEVATED+Alkaline+Phophatase&source=web&ots=F4SXoEG7Wg&sig=SSFyjZ0llLt5AYohoWTZ5lzSVDc&hl=en&sa=X&oi=book_result&resnum=9&ct=result#PPA12,M1
    Monsterlove 2921 Replies
    • November 19, 2008
    • 11:59 PM
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  • Was your daughter taking any medications prior to her first episode? Antibiotics by chance? Anything? When did she start taking solid foods and what did you start with feeding her solids? How long prior to her first episode? Is she breastfed or bottle fed? How frequent are her stools and what consistancy? Any breathing problems or history of sinus/congestion? Any history of fevers or ear infections? DOM I'm happy to answer any questions, thank you for reading my long post! She was not taking any medications prior to the first seizure. She was diagnosed with a possible UTI after the first seizure and was therefore taking antibiotics for the 6-days prior to the second seizure. She began eating solid foods at 4-months. We started with rice cereal and soon switched to oatmeal because she didn't care for the rice after we added other foods to the mix a week or so later. We gave her solids only at dinner until about six months and stayed with each new food for 5 days straight before trying something else. She was exclusively breastfed for 4 months and then I gave her one bottle of Infamil a day so I had a break and she could get used to the bottle. At six months we switched to Simalic and at seven months we was up to 2 bottles a day so I didn't have to pump at work. First seizure was at the end of 7-months. Currently she is about 50/50 breast and bottle fed. Stools tend to be quite solid and small 1-2x daily. She had a constant cold with congestion from early August (5-months) until about 3-days before her first seizure. I was thinking "finally, no more boogie sucker" then she had the seizure. No fever except for a three day period about 3 weeks before the first episode which I treated with Tylenol. She cut her first teeth a few days later. I found out by accident that she had bilateral inner ear infections. They showed up on the CT scan after the first seizure but no one told me about it. It seems someone picked it up when reviewing them later and writing the report. It was noted as an addendem and I found out when I picked up a copy of her CT scan and report to take to another doctor. I think that answers everything, thank you for your help.
    Scully0007 13 Replies
    • November 20, 2008
    • 02:04 AM
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  • I came across a reference to lead poisoning and e-coli. Had you given her aspirn? Here's more:http://books.google.com/books?id=RZN-mD3bSNQC&pg=PA12&lpg=PA12&dq=EXTREMELY+ELEVATED+Alkaline+Phophatase&source=web&ots=F4SXoEG7Wg&sig=SSFyjZ0llLt5AYohoWTZ5lzSVDc&hl=en&sa=X&oi=book_result&resnum=9&ct=result#PPA12,M1 Good article, I like how he outlines what tests to use to investigate further. FYI all, they did a bone survey (19 x-rays of her entire body) after the first seizure because the ER doc thought perhaps her ALP was elevated in response to a broken bone. Everything seemed to be fine, however, as it was very difficult for 3 adults to hold her into the various positions necessary several of the images contained problems. I'm adding the diseases everyone comes up with to my list of possibilities. I am researching each of them further and will ask the doctor about the ones I feel are possibilities. Thank you all so much.
    Scully0007 13 Replies
    • November 20, 2008
    • 02:29 AM
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  • -No Asprin-EEG was normal, both awake and asleep-Still no answers-Appointment with an endocrinologist tomorrow Does anyone have any tests they would recommend she has done to diagnois this or any questions they think I should ask???
    Scully0007 13 Replies
    • December 8, 2008
    • 03:01 PM
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  • Similac is soy based, correct? I would look into an allergy to soy that could be causing the seizure, also gluten...she may have gluten or wheat intolerance without having celiac. It may be hard to find a good pediatrician who can recognize the seizure/food allergy connection. The symptoms including the ear infections point to food allergy/intolerances to me. A good blood test for allergies may be helpful, but again these tests are not 100% reliable. Best wishesDOM
    acuann 3080 Replies
    • December 9, 2008
    • 05:02 AM
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  • Thank you for your post, I have a question for you. Her first seizure was almost 24-hours after she had the liquid Similac which is soy based and the second one was 6-days after that. Could it still be an allergy to soy if it doesn't present itself immediately?
    Scully0007 13 Replies
    • December 10, 2008
    • 08:33 PM
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  • -No Asprin-EEG was normal, both awake and asleep-Still no answers-Appointment with an endocrinologist tomorrow Does anyone have any tests they would recommend she has done to diagnois this or any questions they think I should ask??? Most docs dismiss allergies causing seizures, but I feel this is a real possibility. An allergy to Similac. I am suspecting a soy allergy due to her nasal congestion and ear infections. These are classic food intolerance issues. Find a doc who can do an elisa blood test to check her Ig levels. Best wishesDOM
    acuann 3080 Replies
    • December 11, 2008
    • 02:56 AM
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  • Thank you for your post, I have a question for you. Her first seizure was almost 24-hours after she had the liquid Similac which is soy based and the second one was 6-days after that. Could it still be an allergy to soy if it doesn't present itself immediately? YES!!!! This is DEFINITELY the culprit! I would switch formulas immediately. I really think this is causing her problems. DOM
    acuann 3080 Replies
    • December 11, 2008
    • 02:59 AM
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  • I realized after posting my last post that I wasn't clear on her formula in my earlier posts. She was breastfed exclusively until she was 4-months when I started suplementing with 1 bottle of power Enfamil daily. This continued until she was 6.5 months when we switched her to Similac after using up all the Enfamil (someone gave us a whole bunch of Similac). By 7-months she was getting two bottles of power Similac a day. I was given several things of powder and some liquid so in my quest to use everything up I gave her the liquid one weekend. There seemed to be a big difference in that she just gobbled those liquid formula bottles right up, much faster than the powder. She had two bottles daily of the liquid Saturday, Sunday, and Monday with breastmilk the rest of the day. Tuesday at noon she had the first seizure and a second one 6-days later. I told every doctor this and they all said they thought it was irrilavent but I have been suprised that they passed on it so quickly because it was the only change in her life that could explain what was going on. Now that you agree I will certainly look into this more. It stinks that they have her on anti-seizure medication and no one will even considering a food allergy! Also, her endocrinologist appointment was yesterday. She believes the elevated ALP is Benign Transient Hyperphosphatasemia and is in no way related to the seizures. They will check her blood monthly to monitor this. (A quote from a web-document I found: It is important to know that very high ALP levels can be seen without underlying significant pathology and the benign nature of the condition to avoid unnecessary investigations.)
    Scully0007 13 Replies
    • December 11, 2008
    • 04:10 AM
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  • I realized after posting my last post that I wasn't clear on her formula in my earlier posts. She was breastfed exclusively until she was 4-months when I started suplementing with 1 bottle of power Enfamil daily. This continued until she was 6.5 months when we switched her to Similac after using up all the Enfamil (someone gave us a whole bunch of Similac). By 7-months she was getting two bottles of power Similac a day. I was given several things of powder and some liquid so in my quest to use everything up I gave her the liquid one weekend. There seemed to be a big difference in that she just gobbled those liquid formula bottles right up, much faster than the powder. She had two bottles daily of the liquid Saturday, Sunday, and Monday with breastmilk the rest of the day. Tuesday at noon she had the first seizure and a second one 6-days later. I told every doctor this and they all said they thought it was irrilavent but I have been suprised that they passed on it so quickly because it was the only change in her life that could explain what was going on. Now that you agree I will certainly look into this more. It stinks that they have her on anti-seizure medication and no one will even considering a food allergy! Also, her endocrinologist appointment was yesterday. She believes the elevated ALP is Benign Transient Hyperphosphatasemia and is in no way related to the seizures. They will check her blood monthly to monitor this. (A quote from a web-document I found: It is important to know that very high ALP levels can be seen without underlying significant pathology and the benign nature of the condition to avoid unnecessary investigations.) Don't blame the doctors as they are not trained to look at nutrition and food allergies or preventative medicine. They just don't work from that angle. I really feel you should trust your gut on this one and look for someone who can do a proper blood test for a soy allergy. I would push for this at your next visit. BTW why did you switch formulas originally? Was she having any reactions to Enfamil? What antiseizure med is she taking? My daughter was put on phenobarbitol at birth, even tho she never had a seizure she had an EEG that showed "seizure like" activity. I felt very strongly that she didn't need this medication, and slowly weaned her off of it after a second EEG was completely normal. She has never had a seizure thank god, and is now nearly 4. I don't think your daughter has epilepsy...but I am NOT a medical doc, just a Doctor of Oriental Medicine:). If you can, try taking her off soy and see how she acts. Benign Transient Hyperphosphatasemia is usually self limiting, but if there is liver involvement they will look at this much more closely. There is no known cause, but again I wouldn't rule out an allergic condition contributing to this issue as well. One last question - is she growing and acting normally and covering all the milestones at her age? Best wishesDOM
    acuann 3080 Replies
    • December 12, 2008
    • 04:10 AM
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  • I didn't have time to read all the way through this article but i must get off the computer now, so i will leave the link, but I can't guarantee it will be of any help. http://jn.nutrition.org/cgi/content/full/135/2/279
    qwertyuiop123 453 Replies
    • December 12, 2008
    • 07:13 AM
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  • I didn't have time to read all the way through this article but i must get off the computer now, so i will leave the link, but I can't guarantee it will be of any help. http://jn.nutrition.org/cgi/content/full/135/2/279 Wow - that is really interesting and informative. I would definitely get her D levels checked...this could also be the cause. Great post! Best wishesDOM
    acuann 3080 Replies
    • December 13, 2008
    • 03:57 AM
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  • Hi, I'm a medical student who was researching elevated ALP and found this thread. I was curious if you have found out the cause of your child's seizures and increased ALP? Thanks,AC from STL
    Anonymous 42789 Replies
    • January 28, 2009
    • 01:55 AM
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  • 12/9/08 - Endocrinologist diagnosed the elevated ALP as Benign Transient Hyperphosphatasemia. Lab work the following day indicated that it had already resolved itself. 12/9/08 - Diagnosed with first ear infection and given Amoxicillin x10-days 12/19/08 - Final day of Amoxicillin, diagnosed with an ear infection in the opposite ear, given Azithromycin 12/21/08 - Hospitalized for a high fever (103) and refusing to eat or drink. Doctors stumped by a combination of mysterious symptoms. Diagnosed with Chronic otitis media with mild bilateral mastoiditis. Given IV antibiotics, Unasyn, continued refusing to eat or drink. Surgery 12/26 to drain fluid causing pressure and place PE tubes. Told mastoiditis probably caused her seizures. She wanted to eat everything in site following the surgery so we were discharged with Antibiotic ear drops Cipro and the oral Antibiotic Augmentin box x7-days. I realized that this has probably been bothing her since mid-October when she started refusing to eat "Puffs" and Cheerios. Daughter continued to improve following her 5-night hospitalization and gained 3-pounds since her discharge. 01/20/09 - Third seizure, daycare called 911. Mom very concerned that it means the infection in her head did not clear up, doctors don't agree "because her ears look good" dispite the fact that they looked good on 11/04 when a CT scan showed an infection. ER doctor is convinced it's seizure disorder, no testing done. Mom freaking. 01/21/09 - Fourth seizure, the longest at 3-minutes, again daycare called 911 and again doctor's don't think it's her ears. Nothing done at ER. Mom even more concerned. 01/22/09- ENT also thinks because ears look good with no drainage that it's not an infection in her head. Mom doesn't agree and is freaking out. 01/27/09 - Neurologist says to get a second opinion, new ENT cultures green snot and puts her on the antibiotic Cefdinir for 30-days. He thinks that will fix her up. Mom is happy that they're doing something, just worried. Advice, guidance, help???
    Scully0007 13 Replies
    • February 1, 2009
    • 05:17 AM
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  • Have you had a chromosome microarray yet?This probably has no relation whatsoever, but I felt I should post just on the off chance.My 24 month old son had elevated alkaline phosphate along with developmental delays (noticed after he was 15 months old). When a chromosome microarray was completed it revealed that he had chromosome deletions at 2q36.3-2q37.1. One of the diseases common to this deletion is called "Vodi", Hepatic veno-occlusive disease is a condition that blocks (occludes) small veins in the liver, disrupting blood flow in this organ. This condition can lead to enlargement of the liver (hepatomegaly), a buildup of scar tissue (hepatic fibrosis), and liver failure.Children with VODI are prone to recurrent infections caused by certain bacteria, viruses, and fungi. The organisms that cause infection in people with this disorder are described as opportunistic because they ordinarily do not cause illness in healthy people. These infections are usually serious and may be life-threatening. In most people with VODI, infections occur before hepatic veno-occlusive disease becomes evident.In addition, this deletion also is responsible for a syndrome called 2q37 deletion syndrome. Please look into it because 30% of the affected children have seizures, too.I hope you find your answers soon. I have been there and know how completely devestating the waiting and worrying is. Feel free to email me if you additional questions: Shannon927@gmail.com.
    Anonymous 42789 Replies Flag this Response
  • No, we haven't. I thank you so much for your response and I'll be looking into that next. We recently saw an immunologist who did a bunch of labwork and didn't see anything wrong with her immune system. The doctors are puzzled and as you've experienced we're frustrated and just want our little girl to be okay again. Thank you for your time and I'll be sure to look into it. Kathy
    Scully0007 13 Replies Flag this Response
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