Posted By Posting
Jul 08, 2008
mommy2628
Report from doctor
I took Prestyn and Avary in today for their recheck. It was only suppose to be Prestyn but Avary isn't improving so they worked him in.

Prestyn- Right ear still infected. Left ear is now infected too. His wheezing and congestion is worse.

Avary- His left ear is now infected also. His crackling and wheezing has slightly improved but he is still full.

I did talk him into another antibiotic instead of the shots. I know you may think I am crazy but those shots are so bad. They are so thick it takes a couple of mins to inject it. You then have to wait 45 mins after to watch for signs of an allergic reaction. They have a high % of reactions.

He prescribed them Omnicef and Xoponex instead of the albuteral. I am to give them the Omnicef 1 time for 10 days. I am to do the Xoponex treatments every 4 hrs round the clock until they are wheeze and cough free for 2 solid days. He wanted me to recheck in 2 weeks unless I needed him before. At that time he is going to do their 6 mth and Braddy's 18 mo shots that we couldn't do at their check up.

Since he was wanting to do their shots then I asked him to check Braddy out since he had the same symptoms. Thank God I did.

Braddy- Believe it or not he now has 1st ear infection. His right ear is infected along with the coughing and wheezing. He told me that if he hadn't checked I would have been at the ER tonight. He said he was very shocked Braddy had not showed some sign of the pain, etc. He said it was severely infected. Tonight after bath I was dressing and he was warm. His temp after bath was 103.1. I know it is from the ear. We are back to the tylenyol and motrin 12,3,6,and9 schedule along with neb treatments every 4 hrs for all 3. What would I do without constant chaos in my life. I think I would fall over.

I am not sure who stated this but I was told the same thing today. I am sheltering them too much from the outside germs so therefore when they come in contact with them they get sick and can not shake it. I know I shouldn't be this way but I am still having a hard time going out into public, crowd, etc. I still am battling the PPD and I would just rather stay home instead of facing conflict. It is just so much more peaceful and structured. Basically it is a cope out to stay here but I feel secure when I am at home. I only go out when I absolutely have too and that isn't often.

With prayers I am going to start venturing out. I am going to start at small places and then work my way up to the mall. I did go to Dollywood a week or so ago but most of the entire time I sat away from the crowd and chaos with the babies. I don't know how to do it whether to force myself or just start with a large place and if I have a panic attack deal with it then. I honestly don't know. All I know is I am soooooooo tired of the snotty noses, coughing, vomiting, wheezing where they can't breathe, fevers, medicines, and the list goes on. Laundry and changing beds daily........ I am exhausted. I dont sleep b/c I am so tired. I am ready to be the person I was on December 13 when I left my house instead of who I am now. I get so upset over the least little thing. My life will get better if not now it will in Heaven..... If you have suggestions please pass them on. When we return in 2 weeks they are going to be better and I will start exposing them to the outside instead of sheltering and only leaving home ever once in a while. We do go outside and on walks daily but that didn't count John said. Oh we go to his house at least once a week for playdate. Tomorrow I want to do something with them pertaining they feel some better. If you have any ideas let me know.

If you have read all of this Thank you for reading the update and letting me vent. Hopefully I won't have to vent anymore.

Jul 08, 2008
eswrede
Mathias Johann - 12/14/05 - GERD, Hypotonia, Sensory Processing Disorder, Dyspraxia; Stopped silently aspirating at 20 months :)
First partial seizure on 7/2; First Endoscopy on 7/16; results: bile reflux gastritis.
New Meds: Zegerid & Carafate
Allergic to dairy
Hugs to all of you! I hope the little ones start to feel better soon. Is there someone who could go with you on an outing to help out? Even if it is just a trip to Target or something like that. I had PPD when M was little and I remember it being really tough to go with him by myself but if I had someone with me it made it a bit easier. Libby
Jul 08, 2008
daniejo
Mom (Danie) to Adam (9-4-03) & Nate (3-7-07) Nate was diagnosed with silent AR at 2 months old. He was on neocate, prevacid 30mg per day and couldn't start solids till he was almost 8 months old. He started cow's milk at 14 months and is currently off all meds!! So far so good :) PIC: Disney trip 2008. Nate didn't know Piglet was there, he didn't like the characters too much.
Thank you for this update...I have been thinking about your boys. I am sorry they just can't catch a break. Did the dr say anything about Braddy loosing so much weight? Hopefully he will get his appetite back after his ear pain goes away. I find that the ear pain drops work best for Nate. I know that it is hard to go out with the babies but it really does help. I did that after Nate...after I made it a point to go to the mall, I felt so much better. Omnicef knocked the strep out of Nate...that ab works best for my boys.
Jul 08, 2008
abbysmom
Andrea: Mom to 3 crazy girls!
Jackie (3/01)
Payton (9/03)
Abby (4/06) Prevacid 7.5mg (evening), MSPI, goats milk (currently trying to wean off Prevacid)
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Do the twins get the vaccine that boosts their immune systems? My cousins girls (twins) got that vaccine for the first 2yrs of their life. Just b/c you aren't taking them out doesn't mean that you are sheltering them from germs. They are brought into your house by all the other kids. I am sure though they are exposed to lots since you have lots of kids coming in and out. Some kids just get sick more. I have to say that the antibiotic shots are that bad. My oldest got one in the ER and it took care of her strep throat right away. They never said anything about a high % of allergic reactions to us. In regards to crowds, I would def start out small. Maybe go to places when you know they won't be very crowded.
Jul 08, 2008
mommyto2
BRANDON-Zantac and Bethanacol; Neocate formula, 2 sets of ear tubes, Adnoids removed, Vasomotor Rhinits, Asthma. Currently on: Xyzal, Omnaris, Flovent and Xopenex,
AUBREY-Zegerid 2x a day, Soy Milk, Tubes put in and adnoids removed (11-7), Hypotonia, ECI therapy for low muscle tone throughout trunk and hips, oral motor issues and sensory integration issues, delayed speech, Teething, probiotics
PICTURE: Aubrey in her cute cat outfit. If you look you can see how her right foot turns in. She walks that way as well. It is not as exaggerated in the morning's but gets worse in the evenings. This was after her nap.
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Carla-I can not believe you still have Bradden on Alimetum! I just wonder if that is not due to weight loss. From what I have been told that is a baby formula and at 19 mo the nutrional content is not right for what his body needs.
Jul 08, 2008
abbysmom
Andrea: Mom to 3 crazy girls!
Jackie (3/01)
Payton (9/03)
Abby (4/06) Prevacid 7.5mg (evening), MSPI, goats milk (currently trying to wean off Prevacid)
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We left my middle dd on formula until she was 18mnths b/c of my oldest reaction to cow's milk when we switched her. But she was on the reg milk based and it was the Step 2 for toddlers.

Have you thought about trying goats milk or rice milk with him?

Jul 08, 2008
mommyto2
BRANDON-Zantac and Bethanacol; Neocate formula, 2 sets of ear tubes, Adnoids removed, Vasomotor Rhinits, Asthma. Currently on: Xyzal, Omnaris, Flovent and Xopenex,
AUBREY-Zegerid 2x a day, Soy Milk, Tubes put in and adnoids removed (11-7), Hypotonia, ECI therapy for low muscle tone throughout trunk and hips, oral motor issues and sensory integration issues, delayed speech, Teething, probiotics
PICTURE: Aubrey in her cute cat outfit. If you look you can see how her right foot turns in. She walks that way as well. It is not as exaggerated in the morning's but gets worse in the evenings. This was after her nap.
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Sorry Abbysmom-that is what I meant is the Alimetum in not formulated for toddlers. There are formulas out there that are-like we are on Neocate One +, but it seems he should be on something different. I agree w/ trying goats milk or rice milk and adding nutrients.
Jul 08, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
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Elecare also makes a formula for one year and older. Sorry your life is so chaotic!
Jul 08, 2008
daniejo
Mom (Danie) to Adam (9-4-03) & Nate (3-7-07) Nate was diagnosed with silent AR at 2 months old. He was on neocate, prevacid 30mg per day and couldn't start solids till he was almost 8 months old. He started cow's milk at 14 months and is currently off all meds!! So far so good :) PIC: Disney trip 2008. Nate didn't know Piglet was there, he didn't like the characters too much.
Wow...Andrea and Jennifer could really be on to something. I'll bet a "next step" formula could really help add some weight to him. I would def ask the ped about it...heck, I would do some research and just tell the dr that you think it would help him (that's what I do--I basically "tell" the dr what I want to try, lol) I really hope he can gain some weight since he lost so much!! Please keep us informed as to how he is doing :)
Jul 08, 2008
ann_riley
I understand
I understand the point you are at, perhaps not exactly as different situations but I had to deal with my son, sick, puffers, nebulizer around the clock, diarrhea, up all night, etc.....its hard. I really also struggled with post partum depression, or anxiety, but I really felt it was just too much going on all the time and I never got a break. It is easy for someone to say 'take a break' and to leave the kids with someone, because its hard to trust your children with someone who doesn't necessarly know how to use the nebulizers or puffers etc....at least this was where my anxiety came from....is their a neighbour you could call, or a mothers helper, an au pair?? I even went as far as putting an ad in the paper- I extensively intereviewed everyone that called me and then went to meet the person in HER home, and had her come over a couple of times a week to help me, just to relieve my stress, or for me to run to the store without baby in toe. I will pray for you, that your burden will be lightened, for your stress to diminesh, for the children to be restored to health. Its not easy, I'm hoping you can find someone to help you, that will be a huge help...an elderly person? Someone out of work? Hang in there, I'll be thinking about you.
Jul 08, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
Sorry you are all having such a tough time. Sorry the boys are still sick, Maybe these meds will finally kick it. I hope you can get out. IT is so good for your soul. Thinking of you guys! Hugs!!!
Jul 09, 2008
mommy2628
Danie- If Bradden loses anymore weight then we will return back to the GI at Wake Forest for the tube options per the pedi. As for his eating now as long as I can keep him hydrated and stable with his weight then he will give him a week after he is completely better to see what he is going to do in the terms of eating. If he does not pick back up on his appetite similar to where he was then we will return back to Wake Forest for the tube options also. His drinking today for the most part has been somewhat back to normal although he still wont take formula from his cup. I am not sure why he wont take it from a cup but he has refused since he threw the bottle away. His eating is still so so little but I think it is the pneumonia and sickness. I know when I am sick I dont want to drink hardly much less eat.

Danie how old was Nate when you used the ear drops with him? I asked Maddies ENT about the pain drops for the twins when we saw him Thurs. He said that you could not use them in infants b/c an infants ear drums were fragile and could rupture very easily with an infection. If you used the drops and the drum ruptured then the baby could lose its hearing permanently. That was before Braddy had one so I was wondering if he could use them at his age. I can tell it bothers him b/c he moans on and off in his sleep.

Andrea- Yes the twins are getting the booster but the physicians here only do these in the winter. The babies did well with sickness while on them but it seems a month after we quit the sickness hit. We will start them back the first of Sept. The high reaction % is suppose to be based on if you have an immediate family member with an antibiotic reaction. I am allergic to Penicillin and Clendomycin. Maddie is allergic to Augmentin and Keflex. Kaitlyn is allergic to Cefzil and all related antibiotics. This was the first time I have ever been asked if our family had reactions. Kaitlyn and Maddie both had them for strep and ears and we were never asked or told that. We just had to wait 30 mins there at the office after the shot so they could check the injection site for reactions.

Jenn honestly I think the reason he is losing is b/c when he was drinking his Alimentum it was mixed to be 24/cal and he drank around 32 ozs a day. That is actually a lot more than he would drink of the Neocate lately so he was getting so many more calories. Now that he isn't drinking it he has lost all of his calories and fat. I know that Alimentum is an infant formula but the GI wanted us to wean from Neocate which we did. Every 2 mths since he was 14 mths I have trialed weaning to another milk. We have tried Silk, Dairy Ease, and just this last time we tried Goats milk. All of the trials were a definite no. His stomach started back into the spasms again like they were. After the reaction he wants him back on Alimentum until we trial again b/c we know for sure it doesn't bother him and he is pain free on it. He does take a prescription vitamin that meets all of the daily values that Braddy needs and had added calcium. We are to trial Rice milk at 20 mths. If it doesn't work then we are going to discuss a long term elimental formula like the Neocate 1 for Braddy. After what we went through a few months ago I am very picky about what he has and doesn't. He does not have any food from a restaurant unless it is like fresh fruit. I read all ingredients and use formula in foods that need milk. I am trying to control his diet so that he can possibly come off of one of his medicines. He gags and chokes on the Prilosec b/c of the taste. It taste like pure salt. Hopefully through our strictness he can come off of it and only have 2 then. We also do not allow any one other than my parent's to watch him. We then know he is fed correctly and his stomach condition is not brushed off and he is given just anything like my in laws want to do.

Danie my pedi really goes with my wishes if it is for the best. We just discuss what the solutions are. Honestly when we are there it is not even like a dr. appt. One day I took the babies for a weight check. Every visit they send 8 or 10 jugs of the twins formula home with us. He carried out the box to the car for me and Michael was in the car asleep with Braddy. My pedi beat on the window and scared the snot out of Michael. They still carry on about this. He will ask me my suggestion and we will go from there. As for his GI recommendations our pedi and the GI corrospond through email so that we do not have to make the 3 hr drive there. He is the one who wants Bradden stabalized before we attempt another trial so we go back to the Alimentum to let him get straightened out before the next time. I am praying that the next trial will be our answer to prayers. If not we will probably be going to the Neocate 1 since we know he thrived on Neocate.

Jul 10, 2008
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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I'm so sorry that your boys are still battling all this stuff. I'm surprised that they have not needed to be hospitalized for it. I know that you are doing your best. Sometimes, it is really hard for me to go out with Quinn. It just seems easier to stay at home rather than lug around a diaper bag, a feeding tube bag and pump, my purse and the nebulizer and stuff. But you have twins and Braddy and your other children. I can't say that I wouldn't feel that same about wanting to stay at home!!! i really hope that they get better soon and can eventually shake these sickies!!! It has hit all three of them so hard! Take care of yourself. I think that venturing out sounds like a great idea when they are all well. -sarah
Check with your
doctor first!