Posted By Posting
Nov 06, 2006
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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Lactic Acid...
Well, many of you know that Quinn has had quite a battle with reflux... but things are getting more serious and the cause for Quinn's problems are not clear. She has been a very slow gainer, but it's not because she pukes all the time... she used to, but at about 7 months the puking deminished a whole lot... but she still hasn't been able to pack on the pounds. The cause for this is unclear as well. She's had a barium swallow and she is in speech therapy. The hypothesis is that she expends too much energy eating which is causing her slow weight gain. Not only this, but Quinn has been getting low muscle tone. She constantly falls over and is not too sturdy. She's about as sturdy as a 7 month old. She hasn't always had low muscle tone either. She is on a 24 cal diet with polycose added to her gerbers and if she doesn't gain on this, then a n/gtube will be placed to help her gain some weight... Anyways.. she sees a speech therapist, a pedi plastic surgeon, a GI doctor, an ENT, a cardiologist, she has a nutritionist and soon will be in OT and PT. All these doctors are trying to get to the bottom of all of her problems. Reflux could be the culprit, but Quinn just had blood drawn last week at her last pedi appointment. They usually check for anemia at nine months, but we also had a few other things checked. Her pediatrician called me this Saturday to see how Q was doing... I knew something didn't come back right. She said that Quinn isn't anemic, but that there is something wrong with the way she breaks down or makes lactic acid. I'm not too sure exactly what... a few other problems with her keytones and stuff.. but mainly her lactic acid. I know that this has something to do with muscles. So... Q is having more blood and urine work done on Monday and she is seeing the geneticist for sure... but my question is.. could this be reflux? Has anyone else had anything similar with their child? Does reflux effect the lactic acid? And the use of muscles? -Sarah
Nov 06, 2006
mc
No good answers
Sarah, I don't have an answer to your questions, but just wanted to say that I was very saddened to read your posting. It sounds like you've been through a lot. Have you addressed your question to your GI? Seeing as s/he has many GERD patients in their care, they may be able to provide some insight following the test results and could answer your question about lactic acid. I do know that children suffering from many other ailments (Cystic Fibrosis for example) also suffer from reflux. I hope you find some answers soon. Please post again so we can know how things are progressing. I'll be thinking of you.
Nov 06, 2006
kmom
Worry Wart mom to
27 mo. reformed "happy spitter"
34.8lbs , 37in tall(oct)
Diagnosed A/R at 6 wks
Zantac until 1yr then Prevacid
Med free since February 08
peanut & egg allergies...still
Zoo Boo Trick-or-Treating (pic).
Endocrine issues>
I am not a doctor or an expert so this is just speculation. It sounds like an endocrine issue. Like there is a problem with her hormone production? Is this possible? Has she been seen by an endocrinologist?
Nov 06, 2006
kmom
Worry Wart mom to
27 mo. reformed "happy spitter"
34.8lbs , 37in tall(oct)
Diagnosed A/R at 6 wks
Zantac until 1yr then Prevacid
Med free since February 08
peanut & egg allergies...still
Zoo Boo Trick-or-Treating (pic).
B12 deficiency
I have been looking into this and there seems to be some connection between Lactic Acid deficiency and B12 deficiency. Still looking into it but that is interesting. There is another mommy on this forum who is dealing with B12 deficiency in her toddler. They say the PPIs can interfere with Vitamin B12 absorbtion. I'd say this bears further research. There could be a conncection between GERD treatment and Lactic Acid issues.
Nov 06, 2006
kmom
Worry Wart mom to
27 mo. reformed "happy spitter"
34.8lbs , 37in tall(oct)
Diagnosed A/R at 6 wks
Zantac until 1yr then Prevacid
Med free since February 08
peanut & egg allergies...still
Zoo Boo Trick-or-Treating (pic).
Ome more thing...Mitochondrial Myopathies
http://www.mdausa.org/publications/mitochondrial_myopathies.html Please see this site. Does this sound like Quinn?
Nov 07, 2006
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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kmom
Oh thank you so very much for this information. I did check out this link and a lot of what is described here is similar to what Quinn is going through. We haven't seen an endocrinologist. I do think that right now... it's too early to tell... she's showing signs... but we are hoping that this could all be reflux related.. I asked again for the doctor to explain this lactic acid problem with me. She said that her lactic acid was slightly elevated. The normal is between 14 - 16 and hers was at 19. She is not breaking it down right. It just seems that the older she gets, the more help she needs. I'm just biased right now... I hate to think there is anything wrong with my child. I'm hoping that all this is just precaution and that nothing will be wrong with her, but the liklihood of that happening seems to get further and further away as time goes by. This does sound a lot like Quinn... and that is a scary thought. Who is this mommy dealing with the B12 deficiency in her toddler? I'd like to get in touch with her. Thank you so much for your research. thankyouthankyouthankyouthankyou. I really appreciate it! -Sarah
Nov 07, 2006
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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mc
Thank you for your kind words. I haven't brought this to the GI's attention. I'm thinking that the pedi will have some more answers with the next labwork and I will be able to describe more in depth what is going on here. But I do plan on alerting her medical team if this turns out to be bad. I just need some more answers. But also... a metabolic or genetic problem is what all of her doctors have suspected for some time now. Her lactic acid level was at 19 when it should be between 14 - 16. Thanks for your thoughts and I will surely continue to post. The support and amount of knowlege on this site is incredible! -Sarah
Nov 07, 2006
kmom
Worry Wart mom to
27 mo. reformed "happy spitter"
34.8lbs , 37in tall(oct)
Diagnosed A/R at 6 wks
Zantac until 1yr then Prevacid
Med free since February 08
peanut & egg allergies...still
Zoo Boo Trick-or-Treating (pic).
The mommy with the child with B-12 deficiency is called FloridaMom and her name is Jennifer Garland. She has a post on here right now. Sarah, I pray for Quinn every night. I pray for all the GERD babies but especially for Quinn. What you are going through is a nightmare and you are handling it beautifully. These are probably hollow words I am sure but by knowing what is wrong with Quinn, you can better offer her the support and care she needs. Your efforts to research this is proof that you want what is best for her. As hard as it is to read these things, you are doing the right thing. You are a good mommy! Keep us posted!
Check with your
doctor first!