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redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 5/22/2008 10:04 AM (GMT -7)   

Most of you know I have lost two children to an unknown metabolic disorder. When Alexander's newborn screen came back normal I was so relieved. For a very short time. He is throwing up, arching his back, gagging, and screaming like he is in pain during/just after feedings. This is a pattern I have seen in the past, one that leaves me in tears just thinking about it. I have called the metabolic clinic at Childrens because they are the best in the state plus they are less than an hour away. Their nurse practicianer is getting the state mandated metabolic screening results and talking with one of their doctors to figure out who I need to see to get to the bottom of this. I hate feeling like this. All I want is for my baby to be okay. I do not know what to do beyond what I have already set in motion. Alexander sees his pediatrician tomorrow morning so maybe that will help. I just don't know.

I am sorry, but I don't know who else to confide all this in since hubby is at work and I am falling apart.


Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


Leta
Veteran Member


Date Joined Aug 2005
Total Posts : 590
   Posted 5/22/2008 11:27 AM (GMT -7)   
Hi Rose,

I know I have not responded to many posts here lately but I do read them every few days. I am sorry your son is having such a difficult time and you as well. I would definitely call his pediatrician and see what she says as well. It sounds like you have done the right thing by calling the Children's metabolic clinic, and trying to get the results. You are a good mother and doing what you can on top of trying to get better. I cannot know what you are feeling. If it continues definitely call the Pediatrician to get the baby admitted. Check his weight. I know this is stuff they say and could be an issue they have said in the past. I hope all is ok. Try to hang in there.

Leta
sle 01 w/cns/autonomic 11/05, photosensitive 04/04, sjogren's 01, ra 01, fibro 8/05, sinus tachycardia 6/04, asthma 96, multiple allergies 6/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06-gone, TIA 5/06, Porphyria 5/06, Vitamin D deficiency 4/07, Iron deficiency ferritin 8/07, Chronic migraines 01. Meds- baclofen 40 mg, prenatal tabs, potassium, calcitriol 50 mcg, qvar, xopenex, singulair, plaquenil 400 mg, tramadol 400 mg, darvocet 100 mg, percocet 5mg, amitriptyline 10mg, chromagen, verapamil 40mf, Amitriptyline 10 mg. <font color=...></font> Purple Text


mamamuse
Regular Member


Date Joined Dec 2006
Total Posts : 102
   Posted 5/22/2008 12:28 PM (GMT -7)   
I can't imagine how scary that is for you...I will keep you and Alexander in my prayers. Please let us know what the doctor says.
Kari
Wife, writer, artist, homeschooling mom to 2 wonderful boys
Lupus (dx May '04), arthritis, PCOS, being tested for vasculitis and Behcet's
Now taking: plaquenil, limbrel, metformin XR, ibuprofen and the occasional percoset for pain


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 5/22/2008 12:34 PM (GMT -7)   
We too him into see his pediatrician. The doctor said it is possible he has a food allergy/intollerance since he didn't handle milk based formula and isn't keeping the soy down well either we are to try Simil@c Aliment^m for a week. He also said gastric reflux is a possibility as well as a problem with the intestinal tract but no tests can be done for the intestinal issue for another week or two. As for the reflux he wants to see if the hypoallergenic formula works to correct the problem before we try medications. After 1 feeding on the hypoallergenic we have not seen any spitting up, no vomiting, and no screaming like he is in pain. But to know for sure if this is working we have to wait 24-48 hours minimum a week maximum. If this is what killed my other children then I am going to be royally ticked because that would mean that all my visits to the doctor asking for help with these same symptoms could have been solved simply by trying hypoallergenic formula and maybe something for reflux issues or a simple test to check the intestinal tract for very narrow areas or swelling. The metabolic clinic said without records on at least one of my other children and an autopsy report on my son there are no real clues on what to look for. Both sets of metabolic screenings were completely normal so this is not any of the problems that everyone assumed were the probable culprate. I am tired and have a headache from the high pitched screaming all day today. Since he is sleeping I am going to take something and get a nap. My husband is staying home since he has less than an hour left on his shift. He will watch Alexander for me. I am hopeful but still skeptical because I do not want to believe it was something so simple that everyone missed in the past.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 5/22/2008 4:18 PM (GMT -7)   
Rose: I'm sorry you are going through this with your new baby Alexander. Hopefully the docs will find out somthing soon, you are differanlly doing the right thing. God Bless you and your family. Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 5/22/2008 6:59 PM (GMT -7)   
My thoughts and prayers are with you and your family. You know we don't always know why things happen the way they do. Just try to relax while the baby is having a good day. You need that right now. I know you want answers but you need sleep/rest as much as you can get right now.
hugs
carol
God Bless
Depends on which rheumy you ask! stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Brovana, Pulmacort,zythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 5/23/2008 1:16 PM (GMT -7)   
Redrose, I'm sending lots of postive thoughts and prayers your way. I am hoping the new formula is the answer for all of this. Make sure to get lots of rest with your hubby home.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 5/23/2008 2:27 PM (GMT -7)   
The new formula seems to have helped considerably but he is still showing signs of reflux problems. I am picking up a special positioner that will allow him to sleep on an incline instead of flat since that is supposed to help a lot. I found a used one for 1/3 the price of a new one and it looks good. Just have to take the cash and pick it up tonight. I just want him to feel better and for the scary stuff to stop. He hasn't thrown up again since starting the new formula and spits up very little now. He also is not screaming in that high pitched pain tone anymore. BUT he still arches his back, makes choking noises, and acts like he is bringing something up only to swollow and cry. If we have to use zantac drops we will because I will do anything to make him better. Reflux at least can be managed. Food intolerances/allergies can be managed too.

The biggest problem will be the fact that the new formula is almost $30 a can. Really expensive, though WIC will cover 7 cans a month minimum maybe more. I got enough sleep I don't feel like I am ready to drop anymore and will be resting this weekend too.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 5/23/2008 2:53 PM (GMT -7)   
Rosie,
I am not the praying sort, but Alexander captured my heart and I will be praying everytime I think of the wee fella.
and of course my prayers will be for you too.
Sleep chuck, when you can.
xx Love and prayers
ann
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Pes Cavus, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder, movement disorder, recently dxed as drug induced 2008 Crohns Disease 1996,Hypothyroidism 1998, Raynauds 2006, Sjogrens 2008, Lupus 2008, spine in very, very bad way dx 2008
Irish, not an illness!

100mcg tyroxine, 10mg Cipramil, 3mg Entocort, 30mg Tamazipam, mystatin, sudocream, neurontin 600mg, acidopolis, Vitamin B complex, Coenzyme Q10, Vitamin B12 injection, Nexium 40mg, Fortijuice.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 5/23/2008 4:02 PM (GMT -7)   
Hi Redrose,
 
I'm so sorry to hear that there are complications with Alexander.  It's good to hear that the new formula is working better for him.  My sister was on Similac when she was a baby. She had horrible D whenever she breast fed.  The Similac worked wonders for her apparently.  I hope it's the answer for Alexander too.
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


TiBoBi
Regular Member


Date Joined Mar 2008
Total Posts : 89
   Posted 5/23/2008 4:08 PM (GMT -7)   
 
Hi,
 
It's so scary when babies are not feeling well. You just don't know what to do to make it better sometimes. I am glad that he is doing a bit better on the new formula. Hope he continues to improve.
 
Ti

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 5/23/2008 7:19 PM (GMT -7)   
Hi redrose--
I'm so sorry you are going through this with Alexander. I can't imagine the terror and anxiety you feel. I'm glad the new formula is working and that this doctor seems to be producing some positive results. Metabolic disorders are awful, especially for babies. And formulas, though they try hard, cause so much gas and problems.

I would definitely seek a second confirming opinion on his condition from a good medical center, even if he seems well. And maybe even another after that. You are totally justified in asking for full and complete testing after what happened to your other children, and they can make the paperwork work so medicaid or whatever insurance pays for it. The main thing is to go through with the testing even if the symptoms seem to go away. Otherwise, you'll just worry and that won't be good for you or Alex.

I understand your potential total anger at considering that your other children's problems could be the same thing and their deaths have been prevented with simple changes. I would be going through the roof at the sheer incompetance and lack of value of human life, especially innocent babies. I hope it helps to know I sympathize and though I don't know exactly I feel your pain and anger and hurt and if I could take it away, I would in a heartbeat.

I have a really good feeling about Alex and this doc, from what you have explained and him getting so much better with the new formula and hopefully with the incline. My son had high pitched shirll crying and ended up having epilepsy and I didn't know it. I often wondered if those times were seizures and not colic. I would pay close attention to those cries (like how can you ignore them;)) and if he keeps crying in such a manner, confront his doctor about it and the possibility of other problems too.

Those formulas just make so much gas usually, its hard to burp enough and you don't want them to throw up if they are throwing up, so its just really hard to know how bad it is. I hope they can give him some good medicine for it and stop the spasms.

Please know I'm praying for you both.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 5/23/2008 8:55 PM (GMT -7)   
Thanks everyone. He has continued to do about the same, tonight he will sleep on an incline for the first time. I am hoping it helps him. I know one of my cousins had a baby with such severe reflux he almost died- at 6mo he was barely 10lbs and required a nasal gastric tube, special formula, medication, and to never be flat no matter what. He made it, but it was really hard for a while there. His mother made it worse because she was bad about following directions. Eventually the state took him away and he did great after he was placed with a foster family who listened to his doctors.

I had 2 sets of metabolic screening done- 1 by the state and the second by the lab in the US who does the most tests and re-checks twice and reports if a single one of the 3 times shows positive or even iffy results. Both showed completely negative. I am going to get a copy of the autopsy report and some other records if possible and have the metabolic clinic see what they can figure out. I know the doctor plans to watch him carefully but also suspects that reflux is a problem and may be making a simple allergy/intolerance worse than it would normally be.

I just cannot believe that something this simple could have been overlooked and yet considering the doctor sent a 6wk old who slept through a blood draw home and called me a parinoid young mother I know it is entirely possible. I nursed all my other children so I have no clue about formula, I am learning as we go along.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


ladybug44r
Veteran Member


Date Joined Jul 2006
Total Posts : 831
   Posted 5/23/2008 9:13 PM (GMT -7)   
Redrose, my heart and paryers go out to you and your family. Like every one else I could not imgaine going through what you are going through. And it so sad that when our children are that young and some thing is wrong with them we can't help them because they can't tell us where it hurts.

Please give him a kiss on his head for me.

Veronica
DX Fibro 12/31/07   Guess I can put the rest dx
PSTD  Bi Polar 2/04  Depression most of my life  IBS
RX Amitriptylin 25mg
 
God gives doesn't give us more than we can handle. So this too shall pass.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 5/24/2008 8:24 AM (GMT -7)   
redrose, my little girl had reflux when she was a baby and we had to keep her upper body elevated all the time. Anytime we tried to lay her flat on her back she would cry. I found all of this out the first night we brought her home and put her in her crib to sleep. For the first few days I couldn't figure out what was wrong - she hardly napped and cried a lot and we ended up taking her to the ER one night because she wouldn't stop crying and that's when we found out about her reflux. She did some of the choking too and back arching, so we were given some meds for reflux and kept her elevated and it helped a lot. We just had her sleep in her car seat a lot of the time which naturally kept her elevated. We also had a bouncy seat that had a vibrate mode which was really soothing to her and she loved it, so a lot of times she would nap in it. By about 4 months old she was over the worst of it and started sleeping in her crib. We put a pillow under the crib mattress to elevate the top of the crib a bit too.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 5/24/2008 3:06 PM (GMT -7)   
Hi, How is Alexander doing? I am praying, I pray by thinking, its the only way I know how,
I am thinking of wee Alexi and praying nice things for him
My thoughts stillwith you rosie and the baby.
xxAnn
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Pes Cavus, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder, movement disorder, recently dxed as drug induced 2008 Crohns Disease 1996,Hypothyroidism 1998, Raynauds 2006, Sjogrens 2008, Lupus 2008, spine in very, very bad way dx 2008
Irish, not an illness!

100mcg tyroxine, 10mg Cipramil, 3mg Entocort, 30mg Tamazipam, mystatin, sudocream, neurontin 600mg, acidopolis, Vitamin B complex, Coenzyme Q10, Vitamin B12 injection, Nexium 40mg, Fortijuice.


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 5/24/2008 5:43 PM (GMT -7)   
(((( redrose )))) I pray Alexander is doing better with the incline and new formula. You and your family are in my thoughts and prayers. Please update us as you can.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed) and magic mouthwash (for mouth sores)


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 5/24/2008 6:06 PM (GMT -7)   
Three times today he refluxed formula out his nose-it has to hurt given his reaction. Yet even with all that he is still doing better than he was before. Today he met his sisters which may have made the reflux worse because usually he has a quiet day. He loves the sleep positioner. We have a bouncy seat with vibration and he seems to like that too. He is so small his car seat is not a good sleep option. At least he can eat more than 2ozs and not vomit now. If he continues refluxing Thursday his doctor will order tests and meds. I am worn out today and my feet are so swollen they hurt so I am planning to lay down the rest of the night.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


Leta
Veteran Member


Date Joined Aug 2005
Total Posts : 590
   Posted 5/25/2008 9:53 AM (GMT -7)   
Hi redrose,

I am glad to hear Alexander is doing better and showing some improvement. I hope you get the answers your family needs from the pediatrician and the Metabolic clinic. Keep us posted please.

Leta
sle 01 w/cns/autonomic 11/05, photosensitive 04/04, sjogren's 01, ra 01, fibro 8/05, sinus tachycardia 6/04, asthma 96, multiple allergies 6/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06-gone, TIA 5/06, Porphyria 5/06, Vitamin D deficiency 4/07, Iron deficiency ferritin 8/07, Chronic migraines 01. Meds- baclofen 40 mg, prenatal tabs, potassium, calcitriol 50 mcg, qvar, xopenex, singulair, plaquenil 400 mg, tramadol 400 mg, darvocet 100 mg, percocet 5mg, amitriptyline 10mg, chromagen, topamax 150mg, Amitriptyline 10 mg. <font color=...></font> Purple Text


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 5/27/2008 5:58 PM (GMT -7)   
Hi Redrose--
glad to hear Alexander is doing well. I understand about the formula, I nursed mine and when I switched to formula to wean them, they got really colicky, but that was regular old formula, still, I think it must not sit that well. My kids as little babies liked that swing thing you wind up. It kind of kept them in a sitting up position more. And I had a basket made to keep a baby in, I don't know what they are called, a relative gave it to me, I used all the time so I could lay down and keep the baby near me and I would raise the head of that up when my kids got stuffy and such. I loved that basket.

Well, I'm happy to hear that things are going okay and you all are managing. Will keep you in my prayers.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 5/28/2008 5:09 AM (GMT -7)   
RedRose I didn't know about your other two children, I am sorry to hear that, I am sure you are heartbroken. I will keep your little guy in my prayers, hoping it all goes well and they will find a cure for him.
 
Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.Thyroid Disease ,RA
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


mygrljes
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 5/28/2008 6:24 AM (GMT -7)   
Hi, Redrose,

I'm glad to Alexander is doing better. I had a horrible reflux problem when I was a baby. My mom said that it took a long time for the doctors to figure out what was wrong, but eventually they did. It turned out that the little flap between the esophogus and the stomache was under developed. They didn't do anything about that problem back in the 70's (don't know if they do now), except for seepling on the incline. They said eventually it would heal itself, and i guess it did, because by the time I was a year old I didn't have the reflux problem anymore. Sometimes the simplest things can cause the biggest problems. I will keep you and Alexander in my prayers.

Take care,
Robin
dix: lupus sle Jan. '99, hypo-thyroid Mar. '06
rx: pred. 5mg/day, plaquenil 200mg/day, levothyroxine .112mg/day, premarin .45mg/day, methotrexate 7.5mg/week, folic acid 1mg/day
wife, mother of three


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 5/28/2008 8:47 AM (GMT -7)   
Thanks. Alexander has gained almost a pound in a week and a half which is very good. Tomorrow I will be asking about trying zantac drops to see if it helps because if it does we can avoid tests that are uncomfortable and involve drinking some really really nasty stuff. I know if reflux is bad enough they will do surgery now, especially with infants. I am trying mylicon drops to see if perhaps he doesn't have gas issues making the reflux worse. Everything that can be done is being done. I just want him to be okay.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 5/28/2008 2:48 PM (GMT -7)   
Redrose,
I wish you a few hours rest and a little time to yourself. I hope you are doing good and good news about Alexander. Hopefully the xantac will work. know that I'm praying for you.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 5/30/2008 11:16 AM (GMT -7)   
Well, the follow up went as well as it could. We will be waiting another week or two to see if the formula change and a few positional changes will deal with the reflux w/o requiring medication. BUT we now have to take Alexander in for an echocardiogram because the doctor wants to double check something he heard while listening to his heart to see if he has a heart murmur. The appointment is Monday.

I am back to my prepregnancy weight after 2 days on the water pills. My feet are still more than double their normal size and my ankles still have ballons of water on both sides. This means it is likely that I will find myself below my prepregnancy weight when all the fluid in my feet and ankles comes off. The bad part is I keep getting dizzy, I think my blood pressure is low. I do not have any way to check but I am pretty sure that it is.

Alexander has begun cooing and has more alert time where he grins and interacts with me and hubby now. I am trying to keep him awake during the day so he will sleep more at night, it seems to be working as he now goes to sleep at 2 am instead of 3 or 4.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec

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