Well, here goes my story about Archer's early few months......I will tell it backwards, hope it's not too confusing......
Born in September 04, my 3rd child, Archer was the perfect baby, sleeping and feeding - completely settled from the very 1st day!
It all changed on Christmas Day 04. After getting up normally in the morning, we opened some presents and did our usual morning routine. Then all hell broke loose! Archer, who was a 2 hourly feeder, started crying and the crying elevated to screaming. Now, at the age of 3 months, and my 3rd baby, I was a little distressed too, as it was completely out of character for him. I did everything that I knew to do to try and sooth him to no avail. I couldn't get him to feed, and the screaming went on for 6 hours until he finally collapsed in exhaustion.
This was the start of trouble.....Archer went from feeding only once at night, to only sleeping in 30 - 45 minute lots, and waking up screaming in great pain. This persisted for 3 months, and I had returned to full time work. I got to the point of complete meltdown, as I just couldn't cope. It felt like I was a 1st time mum again. It was then that I first administered Nurofen, because no-one could help me with any answers. The Nurofen answered my prayers - he suddenly started sleeping through the night. I was so relieved! But, he was still the crankiest, most unhappy baby I have ever known.
Then Archer started developing lesions on his torso - they looked like extremely inflamed mosquito bites. Every time they were touched, they flared up again. I thought that he had an allergy to our hand soap, because of the location of the lesions. They came and went, and I started taking photos of his skin - as evidence. We made an appointment with a dermatologist. He took no time at all to diagnose "Mastocytosis". This condition means that his body potentially has multiple allergens, all which can cause serious internal pain and lesions on the skin. The worst possible reaction could be anaphylaxis. The lesions were being caused primarily by the Nurofen, as a non-steroidal anti-inflammatory drug - which is on the list of possible triggers. He gave us a treatment plan of Valergan twice daily and Cortisone cream on the lesions. We didn't follow this plan, as I was fearful of the long term effects of this on his development and health.
Knowing what we were faced with, we joined an international support group (due to the rareness of the condition - there are very few patients) and began educating ourselves. We found numerous triggers (allergens), and set about eliminating them from his life. But it was complex and never-ending. For example - the poor little thing would immediately blister if he touched grass!
Here is a link to the list of potential triggers for children with this condition:
So, now we have his condition under control (most of the time), and yes, we have relented to medicating him at times - to relieve his pain. As four year old, he can communicate his pain to us. But, you might ask how is this related to Strep B - well, during my 2nd pregnancy, I was told by my doctor that I had a positive swab, and would need to have an antibiotic drip if I had a VBAC - but that didn't eventuate due to transverse lie. Due to 2 c/s, I opted for my 3rd baby to also be delivered by c/s. The OB didn't bother checking my Strep B status, and bub was delivered.
Due to complications during delivery (me, not the baby), I didn't see him for very long before being whipped off to the nursery. I cannot be sure,
but I am fairly certain that there was nothing unusual about him, and infact the paediatrician mentioned nothing. My mother, who was at the nursery,
told me that when he arrived, he had a Staph pustule on his head. Over the course of a couple of days, he developed 3 more. The Paediatrician visited
and advised me of the highly infectious nature of these pustules, and administered an antibiotic cream to deal with the problem. After a week in hospital, and the pustules being clear, we were discharged. Within 24 hours of being home, Archer had approximately 50 on his head. We immediately returned to the Paed, who had no option but to prescribe a very heavy, long course of antibiotics. When the pustules cleared, that was when our real problems started.
Now, due to the condition of Mastocytosis being so rare, no cause is known. I cannot help but think that maybe the staph infection is linked to Archer's
condition, and may have been caused by Strep B, despite my c/s delivery. There are many other slight possibilities, but it has made me much more
cautious of Strep B. I have since read of other mums having issues with Strep B, also with c/s delivery (not resulting in Mastocytosis, but other
complications). So, it is, in my opinion, something to take very seriously - I will be asking for screening in this pregnancy, and happily accepting
treatment to protect my baby.
Wow BK thats full on.
Im glad that Archer is doing a bit better now, it must be so unpleasent for you all
Becuase you had a positive test last time, they should automatically give you the ABs this time. My midwife said that if someone has a positive test they are given the ABs regardless of the type of birth they have, but maybe thats just that hospital's policy.
Hi Rayray - Gee you were fast off the mark, I just clicked post! lol! Unfortunately my positive test with my second pregnancy was in a different town/different hospital, so the OB for my third pregnancy was unaware of the test - and didn't run one. But I will be asking for it this time.
Probably the most frightening thing about my whole experience with Archer was that we were giving him Nurofen, completely unaware of the impact on his little system. We were very lucky that we didn't kill him in the process!
Thankyou for yours and Archer's story. You have really opened my eyes to the importance of testing during pregnancy. iam actually having my strep B test next week. I know alot of people who just chose not to get it done but thanks to your story I see that there are plenty of good reasons to get tested.
I hope that you can continue to find more answers and the support that Archer, you and your family need.
Little Archer must be such a brave boy and you are doing a fantastic job of being his mum
Thanks for your kind words - yes Archer is a brave little boy, he rarely complains about his pain. The older he gets, the better he is at expressing what is happening to him. He is actually starting to tell us which foods make him hurt too - which is a fabulous help.
I have known lots of people who have oppositions to the Strep B testing and treatment, and that is generally a well informed and researched choice, but its just not a choice that I would choose to ignore or neglect again.
Best of luck with your little one! Not much longer to go for you now!
Hi butterfly*kisses know this is a old thread but i just found it and hope that you read this post. (sorry will probly be long) My son also has mastocytosis . it is such a horrible illness very loanly no one even most doctors cant help you or give you info and your child suffers with no answers on what to do!
Reading your story i saw alot our story and felt a lot of empathy for you i can definatly relate. my heart broke when saw your sons pic never seen another child that looks like mine and i know what that poor baby went through (as well as his mum)
our second son was born with masto he had a few of the spots at birth the midwives and docs said they looked like really strange birth marks but not normal didn't have any oher explanation!
being his mother instinct told me to look further. he didn't stop screaming day and night right from birth i sat and thought oh my god what have i done this baby hates me!
At 8 weeks we got our diognosis and started to learn about masto which at the time sceared me with all the worst case scenarios!
i was exhausted he would continually react to things and had server diareah and vomiting and never slept for 6 months and had to be hospitalised once.
People stoped visiting and wouldnt have me over they couldn't cope with him was truely a horrble time worst part was watching my poor beautiful baby suffering.
Doc kept telling mee to keep breastfeeding him was best for him but by 4/5 months i said enough and weaned him onto formula and by 6 months reaction vomiting and diahrea reduceded atleast by 50% and finally he slept for more than an hour at a time. he was reacting to my milk!
He is now almost 4 and the most happy content little boy you have ever seen i still sit and look at him and am amazed at how far his health has come.
we avoid all the things that we have learnt cause reactions mainly foods emotional stress and temprature changes.
he is staring to become awear that he looks different has alot of spots i counted them awhile ago over well 100 they all over him to legs arms face and torso. Does your son get concious of his spots?
Would be great to talk with you so rare to find another family in australia dealing with this.
oh and about the step b thing he was delivered naturally and i didnt have streb b was tested before delivery neg. but he was induced and was very stressful and compicated delivery for both of us.
what i beleive is that the stress of his birth triggered his masto doc told me that when cells are doing there thing at conception something happens and to many mast cells are created its like a time bomb as to when will be triggered. maybe the stress of the streb b triggered your son the hard thing is never know.
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Strep B - Archer's Story
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