Author Topic: Share your MSPI/Allergy Success stories!  (Read 8446 times)

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Offline Mydreamcametrue

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Share your MSPI/Allergy Success stories!
« on: November 24, 2008, 04:00:43 am »
I think this would be a great thread to help other's going through this, to know that elimination diets, removing dairy/soy, etc. can help.

Please share your stories.  How you knew your little one had MSPI or food allergies, what the doctor's told you, the heartache you went through and how it all ended up in the end.

To start this is a blog that Kitty's Mum did

http://trifleonmydungarees.blogspot.com/2008/11/mspi-eczema-post.html


Wendy -

Zach - 3 1/2 yrs old. My sweet, loving, gentle boy that loves playing in the dirt!

Tyler - 17 months.  My very very spirited little boy.  Can't turn your back for a minute.  He is doing the cutest things now!  Loves to eat and climb!

Offline Spectra

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Re: Share your MSPI/Allergy Success stories!
« Reply #1 on: November 24, 2008, 14:22:47 pm »
Great thread!  Though I'll have to come back when I have more time to write my novel of a story lol.
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Offline KittysMum

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Re: Share your MSPI/Allergy Success stories!
« Reply #2 on: November 24, 2008, 17:35:46 pm »
I'll be checking back in regularly, waiting to read it!

Offline Spectra

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Re: Share your MSPI/Allergy Success stories!
« Reply #3 on: November 25, 2008, 03:33:32 am »
Alright, finally here I am.  First I'll say that when I was pregnant with my daughter, who is going to be 3 in two months, I received The Babywhisperer books.  I loved them and Googled more information on it and I found this site.  My daughter was really easy with feedings and sleeping, so when I was pregnant with my son I figured he'd be the same way.

The day I came home from the hospital with him I had to put him on formula, I always have a hard time breast feeding, did the same with my daughter.  For the first couple of months my son always seemed congested really bad.  Runny nose, stuffy nose, sneezing ALL the time.  I saw the GP and he said it's nothing.  I don't quite remember when it started, but either when he was 3 or 4 months he started getting eczema which turned into dry, flaky, scaly skin on his cheeks, arms, hands, legs, and feet.  Never any on his torso.  The eczema was hard, like he had alligator skin.  I called it the "suit of armour".  His cheeks became worse and would ooze and become weepy.  He also had terrible cradle cap.  All this was very itchy for him and would scratch his face and head so bad he would bleed.  It became bad enough that we had to sew the arms of all his sleepers down to his side so he wouldn't rub his face raw.

When I saw my GP again about the constant congestion and eczema she barely looked at him, didn't even touch him, and said, "Oh it's just dry skin, it's winter, just use lots of moisturizer."  Fine, so I tried all that, nothing worked, it just got worse. 

And this time I had done some research a few weeks before about eczema.  Somewhere it said it could be a reaction to dairy.  Somewhere I read that sometimes Nestle Goodstart works because the proteins are broken down more.  I tried him on it slowly, after 3 days his eczema was starting to get a bit better, and so was his cradle cap.  BUT he was so CRANKY and FUSSY.  He was gassy and his tummy rumbled like crazy.  He had bad diarrhea on it as well.  I couldn't stand to put him through this, so after 3 days I put him back on his old formula and the eczema came back.  I found the allergy section of this board and was reading a lot about MSPI, so I got some info.

My son was now 6 months old, time to start solids right?  I tried rice, but he hated the taste.  After one bite he refused to open his mouth.  So I thought I'd try oatmeal.  My son took right to it, loved it, probably had about 1 TBSP worth.  2 hours later he was vomiting like crazy, pale as snow, cold and clammy, lethargic, and then terrible diarrhea.   1 week later I thought I'd try a different cereal, here comes the barley...  same reaction.  So I had another reason to see the doctor.  I made an appt. 

The doctor finally agreed that he had eczema and prescribed a steroid cream, but insisted that it wasn't formula related, that it was to do with winter, but she said to try the steroid cream for 2 weeks, and if nothing changes she'll refer me to a ped.  In regards to his reaction to oats and barley she said, "He'll grow out of it, try again in a few weeks."  I was tired of all this and switched doctors.  That took about 2 months.

I had an appt for my new doc in 2 weeks, but then I had accidentally fed my son some jarred breakfast food that had oatbran in it.  He hated it and only took 1/4 of tsp.  Didn't matter, 2 hours later he was vomiting and all those other symptoms.  I called the doc that day and I got in to see him.  By the time I saw him my son was much better, but before I said anything about his eczema he said, "Wow, I think it's a reaction to the formula."  I wanted to literally hug and kiss him.  I was so happy a doc saw that something wasn't right.  He got me in to see a ped right away.

The ped was a letdown.  He said the same as my previous doc.  That his eczema and congestion were not related to the formula, that it was winter, to use lots of lotion, and by summer it will go away.  He said that because my son's eczema wasn't severe it wasn't an issue.  I said, "It's not severe right now because I've been using the steroid cream daily which diminishes his eczema by about 85%".  HE said, "I'm not ignoring the issue, I just don't think it's the formula."  Then he proceeded to tell me he just has a sensitive tummy, in regards to the oats and barley, and to try him again on it in a few months.  Whatever, I was so mad.

I went back to my new GP, and told him the situation.  He didn't believe him, but he himself knew nothing about any of this.  He suggested goats milk.  I did and there was no change.  I found on the boards here about Rice milk.  Thought I'd give it a shot, he was about 10 months now.  Within 3 days his eczema on his face was GONE.  He actually had baby skin.  Took about 3 more weeks and the eczema completely disappeared, and so did his congestion.  I saw my doc.  He was really impressed and when asked where I thought of this I told him about this site.  He was happy and referred me to a Pediatric Dietitian at the hospital.  When I saw her she knew of my Ped, she said, "Yeah, he doesn't believe in Intolerances."  Like seriously, no wonder he was the way he was.

She prescribed Alimentum, but his eczema came back on that.  So she prescribed Neocate, and he does awesome on that.  She also got me referred to the IWK Children's Hospital to see the head of the Allergy department.  We just went 3 weeks ago.  Found out he's also allergic to eggs and has an epi-pen for that.  He is also diagnosed with FPIES for his reactions to oats and barley, it's like an allergy basically.  They think he'll outgrow all of this.  He had the skin prick test, and we are still waiting for the results of the blood work.

I'm so thankful for these boards, it helped me to figure out what was possibly wrong with my son and gave me options when I felt like no doctor was listening to me.  And FINALLY they are listening to me.  Took a year, but finally we got answers.  My instincts were right all along, I fought to be heard, did tons of research, and finally got where I wanted to get MONTHS ago.  I'm glad all that is over.  And I'm extremely happy to have my happy son.  Who knew he was such a happy baby, he was always cranky, fussy, tired, and in such discomfort.  I'm glad he doesn't have to suffer anymore.
« Last Edit: November 25, 2008, 03:46:19 am by Spectra »
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Offline Eden&Connor'sMom

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Re: Share your MSPI/Allergy Success stories!
« Reply #4 on: November 26, 2008, 14:36:43 pm »
My DS is now 8.5 months old. At 2 weeks old, he began arching his back, screaming in pain, not wanting to eat. He's my second child, so right away I knew this wasn't normal. I'm a total researcher, so I went to the internet and looked up his symptoms. At first, I thought he simply had reflux.

By 1 month of age, our ped put him on Zantac. He still wouldn't eat much, so we went on to Prevacid. By 2 months of age, I had decided that he was milk protein intolerant based on his continuing symptoms. He was mostly breastfed with supplemental bottles of formula. My pediatrian advised me to cut out dairy and move DS to soy formula. We did, but like you all should know, many babies who are milk protein intolerant are also intolerant to soy protein. We tried soy formula for a week, then I just took him off all formula and I went on a strict soy and milk protein elimination diet.  When I introduced formula again, it was Enfamil Nutramigen. What a difference in my son!  He's such a happy baby now.

I made it 8 months breastfeeding and on the elimination diet. I drank almond milk, hardly ever ate out, went hungry at work some days because there wasn't anything safe for me to eat, but it was all worth it. I finally gave up breastfeeding a short while ago.  DS is totaly on Nutramigen and although it's very expensive, he's worth it.

All the best to those facing this issue. It can get better if you do what it takes.
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Offline Mydreamcametrue

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Re: Share your MSPI/Allergy Success stories!
« Reply #5 on: November 26, 2008, 19:47:00 pm »
Thanks for sharing ladies.  I remember each of your long tough journey's.

A mother always knows best!!!  I hope these stories can help a mother in the same situation that has been told nothing is wrong!


Wendy -

Zach - 3 1/2 yrs old. My sweet, loving, gentle boy that loves playing in the dirt!

Tyler - 17 months.  My very very spirited little boy.  Can't turn your back for a minute.  He is doing the cutest things now!  Loves to eat and climb!

Offline KittysMum

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Re: Share your MSPI/Allergy Success stories!
« Reply #6 on: November 28, 2008, 10:49:01 am »
It happens so often, it's shocking.

I overheard my HV (or VAL - "very annoying lady" to those who 'know her!) telling another mum just the other day that her baby's eczema definitely wasn't caused by a milk allergy and she should just slather on more moisturisers.

How does she think she knows what's causing it?? I kept quiet, but probably should have caught up with the mum outside the clinic and had a word.

Offline Mydreamcametrue

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Re: Share your MSPI/Allergy Success stories!
« Reply #7 on: November 29, 2008, 02:53:07 am »
I know sometimes it is hard to speak up because you never know how anyone is, BUT whenever I am in a situation like that I do always speak up and at least offer my advice and what worked for me.  They make take it or leave it.. 

I am sure though that mother will get to a point, like we all have, and she will do some research and figure it out.


Wendy -

Zach - 3 1/2 yrs old. My sweet, loving, gentle boy that loves playing in the dirt!

Tyler - 17 months.  My very very spirited little boy.  Can't turn your back for a minute.  He is doing the cutest things now!  Loves to eat and climb!

Offline chantelle

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Re: Share your MSPI/Allergy Success stories!
« Reply #8 on: February 06, 2009, 19:40:16 pm »
Hi this was my first so it came as a huge shock to me when around two weeks of bringing my lo home from hospital he started projectile vomiting after every feed i was breast feeding, I was really worried as I've never seen any baby being this sick after feeds.

I mentioned this too many times to my midwife and health visitor but they told me is wasn't unusual for some baby's to sick up more than others but then his weight started dropping my hv was coming every week to weigh him it just got worse, and by week 3 we were admitted to hospital where doctors took his bloods done scans and kept us in for four days then sent us home telling us it was reflux and gave us gaviscon to give to him.
It was no use as soon as it touched his mouth he would be  sick we were in and out of the hospital but still they just told us it was reflux and put him on domperidone instead . By this point i was expressing my milk and giving it to him by bottle so i could keep track on how much milk he was taking as thats what i had been told to do while in hospital, this was going on for weeks slowly the domperidone was begining to help he wasn't being as sick some days were better than others.

I was getting to the point where my milk was slowing down i had expressed so much i was bleeding and sore so my hv suggested topping up with formula too as they were still concerned about his weight i was doing allsorts when it got to the point were i was confused i just felt like no-one was prepared to get to the root of the problem .

Then to make matters worse he was 7 weeks now and he started with a bad cough he was not keeping any feeds down and was sleepy all the time ,I took him straight to the doctors who said its just a slight cold but because of his low weight and so on he prescribed antibiotics and that was that.

The next day was my six week check a bit late because of everything going on but as soon as i went in i had my son with me she took one look at him and called the ambulance which really scared me he was then rushed to a and e and they soon realised he had bronculitos, i was so devastated we were back on a ward and luckily he recover fairy quickly but we could not go home as i wanted them to check him out fully ,they did further tests and more scans we were in hospital for 9 days eventually they decided to put him on neocate formula and we were sent home.

The neocate was great he was not being sick was gaining his weight he was back to normal and about 10 weeks old .
Its still upsetting to know that this was going on for so long and still although i asked the doctors what exactly was wrong with him they never gave real explanation just that he is not lactose intolerance but something does not agree with him .

I am just glad that my lo has really done well since coming from hospital that last time although i always think if i hadn't been rushed up to hospital when we were what would of happened and how much longer would we have had to wait until we knew why he was being so sick and not gaining his weight.

He is 18 weeks now and i took him to see a dietitian this week and it was her that told me that he has mpsi at last an explanation and diagnosis. So now i can hopefully put all that behind us and start to enjoy my precious lo and im so glad that babywhisperer is here for all advice and info x
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Offline Spectra

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Re: Share your MSPI/Allergy Success stories!
« Reply #9 on: February 06, 2009, 20:24:08 pm »
Wow, your family really went through an ordeal.  I'm glad things are better and you now have a diagnoses.  It's scary when you don't know what's going on, and it's nice when you get the answers.  :)
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Offline chantelle

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Re: Share your MSPI/Allergy Success stories!
« Reply #10 on: February 06, 2009, 20:59:33 pm »
Yea i know it is so scary, but its like what you said im also just glad he dont have to suffer anymore x
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Offline *Jo*

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Re: Share your MSPI/Allergy Success stories!
« Reply #11 on: April 07, 2009, 07:05:08 am »
My son has always hated his formula, would gag at it most times and cough and splutter, but he was still thriving so no one took any notice of how difficult it was to feed him. He was a happy baby, slept beautifully and was sleeping 11 hours through the night without waking at 6 weeks old. I started changing his formula as he kept being fussy and acting as though he hated it, trying to find the right one. Went to the dr who said he didnt have any of the symptoms of reflux except the vomiting and the red sore throat and started us on zoton and infant gaviscon and said to start on lactose free formula. This cleared up his vomiting but not the issues with eating, so my health nurse said to go back to normal formula as we dont know if he is allergic to lactose or not and he doesnt seem to be improving but not to worry he is still healthy and happy and thriving.

then about two weeks ago things started getting worse, after i took him off the lactose free i got a new formula and i noticed it was very frothy, he started getting really gassy and started getting diarrhea, he also started taking less at feeds and was almost refusing to finish more than half a bottle. Sometimes just to get him to eat my hubby would (gently) hold his head to stop him from squirming away from the bottle. then it got even worse, he started waking after sleeping only an hour, eating less and was always cranky and fussy. then he started waking after 45mins so i thought it was an OT or UT issue then 5 days ago he would only take about 500mls in a day and i was told he needs about 900mls, then he would stop sleeping or only sleep for 20mins no matter what i did. I went to the hospital and i said "something is not right with my son" all i got was "hes a happy baby, sometimes they just have bad days or times when they just dont want to eat" so i fed him in front of the dr and he screamed even though he hadnt eaten in 7 hours! The dr said, "well you got some of it into him, take him home and see how he goes overnight" I was at my wits end with the health profession.

The next day he didnt sleep more than 3 hours in total, him and I spent the day in his room with me patting and shhing and crying.
I took him to the childrens hospital this morning and said "i know my son and this isnt normal, something is not right and i want it fixed" and they diagnosed him with Cows milk protein intolerance, gave me a script for Pepti Junior and i went home. I gave him a bottle and he drank the lot, didnt squirm, didnt cry, he loved it, he was so happy. I put him to bed and he went straight to sleep smiling at me as i left the room (whereas previously he would just sob) he woke up before after sleeping an hour and 20mins (huge success i feel!) and i kept him up for 20mins and put him down again and he grissled a bit before falling back to sleep, he is still asleep now as i type this.

I just knew something wasnt right with him but no one was listening to me. Finally someone heard me and already i am seeing the improvements. Its only day one but i feel like there is so much hope for him, the poor little guy just wasnt well, had a sore tummy and i kept giving him the stuff that made it sore again. When he drank that bottle with the new formula i was just in disbelief at how much he drank and how easily he drank it.

*sigh* happy baby equals VERY happy mummy!





Offline Spectra

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Re: Share your MSPI/Allergy Success stories!
« Reply #12 on: April 07, 2009, 13:46:17 pm »
Mother's intuition!  Good for you for keeping at it and finally getting the help you need!  :)
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Offline rachel 2009

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Re: Share your MSPI/Allergy Success stories!
« Reply #13 on: April 08, 2009, 19:56:51 pm »
I have 2 boys the eldest is nearly four and the youngest is now 10 months. Both were breastfed however my youngest was difficult to feed from day one....he would fuss and mess about during feeds stopping suddenly and screaming for no apparent reason. He arched his back and use to bring back some of his feed even an hour later and as for wind he was terrible. I thought he had reflux so i mentioned it to a somewhat unsympathetic health visitor, at baby clinic. His weight gain was fantastic and she just said well he is thriving...is it the crying you can't stand?...silly women i explained that i couldn't stand to see my baby in pain. The other HV suggested that i try aptimil easy digest...which i did which only seemed to make matters worse.

He developed a terrible cough and would spit up more and more of his feed..i made an appointment with the GP and she prescribed infant gaviscon agreeing it was reflux. for the next four months i chopped and changed formula as they all didn't seem to agree with him. Then as he turned four months the diarrhea started...he would be going up to 15 times a day. At this point he was taking his formula well 8oz every 3 hours but seriously it was going in one end and out the other. I was having to change him at least 3 times in the night. I took him back to the GP who thought it was just an upset stomach.. a week later and there was no change so i saw a different GP he prescribed Soya formula it was on a Friday and by the Monday i was back at the docs where i saw a different GP. Thankfully he prescribed Pregestimil and did a urgent referral to the paediatrician.

What a difference the pregestimil made. He started it on the Monday evening and by Thursday the diarrhea had practically gone. I got my appointment with the paediatrician who was fantastic. He thinks that he is either cow milk protein intolerant or he had a temporary lactose intolerance secondary to gastroenteritis. Either way he will stay on the pregestimil until he is one and then we will try and introduce cows milk and see how it goes. We have an appointment next month to discuss how we are going to do it.

I must admit reading all the other stories i feel that we have been very lucky...however i have to say that i have had no support of help from my health visitor. I have tried to contact her numerous times about his calcium requirement and dietary needs...all she could tell me was to feed him lots of dark green veg.

This website has been a godsend thanks for all the dietary advice posts they really have helped.

Offline irishprettykitty

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Re: Share your MSPI/Allergy Success stories!
« Reply #14 on: November 25, 2009, 21:18:11 pm »
my LO was diagnoised at 4 months with severe reflux and MPI (finally after months of heartache)
We switched from breast milk to neocate formula (heartbreaking for me) and also got  put on Zoton tabs. We also started solids early and first gave him pears and then butternut squash etc. He is now two weeks shy of being a year old and the reflux is nearly all gone and so is the MPI. he now eats yoghurts, cheese, pasta, and on the odd occassion when he is sneaky even chocolate. We havent given him pure milk yet but so far so good. Gone is my poor son who could barely eat, never slept and was always in pain, couldnt be on his back or tummy. Now he nearly sleeps through the night (teething interrupts this), eats everything in sight,  crawls, walks, laughs shouts goes swimming. We can go out without worrying and the biggest plus is no more waking up to check on him and find that he has been vomiting blood in his sleep because his tummy was so raw!!
Long may this continue even if it took me 4 months to convince docs.
Moral is Mums know best.. dont let docs tell you your baby is fine if you are sure they arent
Monster Finn: Spirted/touchy with reflux and ASD
Pumpkin: our lost little girl: tiny angel now 1/4/09
Princess Saoirse: spirited textbook with reflux and nails to rival any cat!